Kristopher Lamore
email: kristopher.lamore@gmail.com

Lucile Montalescot
email: lucile.montalescot@gmail.com

Aurélie Untas
email: aurelie.untas@parisdescartes.fr

Treatment decision-making in chronic diseases: What are the family members' roles, needs and attitudes? A systematic review

Keywords: caregiver, decision-making, family, illness, partner, relatives, review, treatment choice

Objective: This systematic review aims to examine the roles of family members (FMs) in treatment decision-making for adult patients without cognitive or psychiatric disorders affecting their ability to participate in decision-making.

Methodology: A comprehensive, systematic search of the Cochrane Library, PsycINFO, PubMed and ScienceDirect databases, with relevant keywords, was conducted. Two authors evaluated the eligibility of the studies independently, then cross-checked for accuracy. The quality of included studies were assessed using standardized criteria.

Results: Out of the 12137 studies identified, 40 were included. Results highlighted the different roles and influences FMs have in the decision-making process. Moreover, several factors ranging from personal to cultural and family-related factors influence their level of involvement. Regardless of the illness, some similarities in family influence exist (e.g., social support). However, the type of family involvement varies according to the illness, the treatment choice and the patients' culture.

Conclusion:

FMs have an important role in the decision-making process. In fact, the final decision is often made by the patients after consulting their families. FMs can support both patients and medical teams, and thus facilitate the process.

Practice implications: Physicians should include FMs in treatment decision-making when the patients and their FMs wish to be included.

Introduction

In chronic and serious diseases (e.g., cancer, multiple sclerosis) multiple treatments may be available (e.g., surgery, transplantation) and thus a choice needs to be made. Historically, and for a long time, physicians were the ones who made the decisions [START_REF] Charles | Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model[END_REF]. However, with the emergence of patient-centered care in the 21 st century, patients are more involved in decisions regarding their own health, especially in life-threatening illnesses [START_REF] Makoul | An integrative model of shared decision making in medical encounters[END_REF][START_REF] Stewart | Patient-centredness in medicine[END_REF]. Moreover, patient involvement in treatment decision-making contributes to improved satisfaction with care and patient autonomy [START_REF] Stewart | Patient-centredness in medicine[END_REF][START_REF] Joosten | Sytematic review of the effects of shared decision making on patient satisfaction treatment adherence and health status[END_REF]. This active patient involvement in treatment decisions is often referred to as shared decision-making. This concept has been defined by Charles et al. [START_REF] Charles | Shared decision-making in the medical encounter: what does it mean? (Or, it takes at least two to tango)[END_REF] as a process between patients and their physicians whereby they share information, express their treatment preferences and make a decision by mutual agreement. However, Berry [START_REF] Berry | Communication between patient and health professionals[END_REF] and Towle et al. [START_REF] Towle | Putting informed and shared decisionmaking into practice[END_REF] highlighted the physicians' difficulties to reach shared treatment decisions (e.g., communication difficulties). Moreover, some physicians may be reluctant to proceed to shared decision-making because of their understanding of their professional role or their preferred decision-making process as a provider [START_REF] Berwick | What 'patient-centered' should mean: Confessions of an extremist[END_REF]. These difficulties in reaching a shared decision are experienced by both patients and physicians. Patients tend to follow the physicians' decisions [START_REF] Laidsaar-Powell | Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations[END_REF][START_REF] Schumm | They're doing surgery on two people': A meta-ethnography of the influences on couples' treatment decision making for prostate cancer[END_REF], thereby they may increase the physicians' burden and stress in specific situations [11]. Moreover, treatment decision-making is also a stressful time for patients [12].

Most authors only recognize two actors in the shared decision-making process, the patients and their physicians [START_REF] Charles | Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model[END_REF]. Indeed, within the scope of shared decision-making, research has mostly focused on the patients' individual factors and/or the patient-physician relationship factors. However, Charles et al. [START_REF] Charles | Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model[END_REF] discussed briefly the potential involvement of family members (FMs) during the deliberation phase (i.e., discussion of advantages/disadvantages of each treatment option) of the shared decision-making process. Nevertheless, the authors do not mention the role FMs could have during other stages of the decision-making process, nor do they state what specific roles they can have.

However, in the last decade, scientific literature has begun to focus on the role of FMs in chronic diseases, addressing the limits of shared decision-making models focusing only on patient-physician interactions. FMs often accompany patients during their consultations [13] and are involved in discussions regarding treatment choices [14]. Indeed, the majority of patients, FMs and physicians prefer the families to be involved in treatment decision-making, to some extent [15][16][17]. However, family involvement is a more recent development compared to dyadic (patient-physician) approaches in which the FMs' role is rarely acknowledged. To date, two systematic reviews and a meta-ethnography [START_REF] Laidsaar-Powell | Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations[END_REF][START_REF] Schumm | They're doing surgery on two people': A meta-ethnography of the influences on couples' treatment decision making for prostate cancer[END_REF]18] have been conducted on family involvement in treatment decision-making. They highlight the different roles FMs and friends take on during this process, as well as their experiences. However, these studies were conducted on specific diseases (i.e., cancer, chronic kidney disease) or specific circumstances (e.g., FMs' roles in medical consultations). Little is known about chronic illnesses in general and who/when FMs take part in treatment decision-making.

Therefore, the present systematic review aims to explore the roles of FMs in treatment decision-making when patients are adults and are able to partake in the discussions regarding their treatments. By identifying precisely how and when FMs can help in treatment decisionmaking, we hope to highlight the importance of FMs in this process and the similarities and differences in family involvement, depending on the context (i.e., the disease, the treatment and the relationship with the patient).

Methodology

Our methods followed the guidelines described by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) [START_REF] Moher | The PRISMA Group, Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement[END_REF].

Search strategy and eligibility

We used the most relevant international databases for our objective (i.e., the Cochrane Library, PubMed, PsycINFO and ScienceDirect) to conduct a systematic literature review. Our research included articles written in English or in French and published up to October 28th, 2016. A list of search terms was developed by considering the research objective and studying relevant review articles. First, the databases were interrogated using the following key-words (see Box 1). The equation used on PubMed database is proposed in Box 2. Then, the reference lists of the included articles and grey literature were also investigated.

Studies using a qualitative, quantitative or mixed design were included if they satisfied the following criteria: (a) investigated a treatment decision-making (except prevention); (b) were conducted on patients aged 18 and over capable to participate in the decision-making (thus, we did not include patients with dementia or psychosis) and diagnosed with a chronic illness according to the National Center for Health Statistics [START_REF] Adams | Summary health statistics for the U.S. population: National Health Interview Survey, 2012[END_REF]; (c) investigated family involvement in the decision-making (i.e., when patients need to choose between several treatments) whether FMs were interrogated or not. Only primary research articles published in peer-reviewed journals were included. As the definition of FMs differs in the literature, we considered FMs as people forming a socioemotional unit (including spouses, parents-in-law and friends).

Data extraction

Data extraction was divided into two parts. First, titles and abstracts were screened to identify potentially eligible studies. To be eligible, titles and/or abstracts had to mention chronic illness and/or treatment choice and/or family/caregivers and/or healthcare trajectories. Secondly, full texts of potentially eligible studies were investigated. Then, a final list of eligible studies was established. This procedure was followed by two researchers independently (KL and LM) and discussed with the study Insert « Box 1 and 2 » coordinator (AU) in case of disagreement, to reach a consensus. When necessary, the corresponding authors of the selected articles were contacted for additional information or to obtain the manuscript in its final version (due to an inaccessible version on the database). EndNote X7.7® reference manager was used to detect duplicates. Both investigators (KL and LM) created a table with the following information on the selected studies: authors, year, country, study design and methods, population (sample sizes and characteristics, recruitment locations, type of treatment choices), objective(s), measure(s) and main results. Finally, the findings were examined using a narrative method [START_REF] Baumeister | Writing narrative literature reviews[END_REF]. This method allows researchers to synthetize the information narratively by gathering the studies' findings.

According to this organization, a preliminary list of themes was created by gathering similar findings together (quantitative and/or qualitative). Then, the list was discussed by the authors to organize the findings into major themes.

Quality assessment

The "quality assessment tool" (QATSDD) [START_REF] Sirriyeh | Reviewing studies with diverse designs: the development and evaluation of a new tool[END_REF] was used to assess the methodological quality of the included studies whether qualitative, quantitative, or mixed designs. The QATSDD is composed of 16 items for mixed methodology (with 2 items specific to quantitative designs and 2 items specific to qualitative designs) ranging from 0 to 3 for each item ("not at all" to "complete"). It allows for a comparison between the diverse methodologies used by providing a mean score. This recent method was selected for its reliability and validity when assessing the quality of diverse study designs. The QATSDD is also the only tool which can be applied to mixed designs. This assessment includes for example the study's theoretical framework and its description of the research settings.

Both investigators (KL and LM) assessed together the quality of the included studies using the QATSDD. Any discrepancy was discussed, and a consensus was reached.

Results

Out of the 12137 articles screened, we included 40 studies (26 qualitative, 11 quantitative and 3 mixed designs). The excluded studies were not relevant for the present study: they investigated treatment decisions in non-autonomous patients (e.g., children) or only from the medical point of view (e.g., description of treatments). Figure 1 presents a flow-diagram of research articles as proposed by PRISMA [START_REF] Moher | The PRISMA Group, Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement[END_REF].

3.1.Study characteristics and quality assessment of the included studies

The included studies were conducted between 1999 and 2016, with a majority of articles published between 2010 and 2016 (n=28) [16, , in North America (n=19) [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF]50,[START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]45,46,48,[50][51][52][53][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF] and Europe (n=9) [12,[START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]49,[START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF]. The included 40 studies comprised cross-sectional studies (n=36) [12,16,[START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lam | Does the use of shared decision-making consultation behaviors increase treatment decision-making satisfaction among Chinese women facing decision for breast cancer surgery?[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF][45][46][47][49][50][51][53][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF][START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF],

retrospective studies (n=24) [12,[START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][45][46][47]50,53,[START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF] and longitudinal studies (n=8) [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]48,49,52,[START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF]]. The characteristics regarding the countries of publication, populations, decision-making subjects, designs and participants are presented in Table 1.

Furthermore, most of the included studies were of moderate quality (mean = 50%, ranging from 31% to 71%), as presented in Appendix 1 and 2.

The examination of the included studies revealed five major themes: (1) types of family influence, (

FMs' roles, (3) factors contributing to family implication, (4) family needs and preferences and [START_REF] Charles | Shared decision-making in the medical encounter: what does it mean? (Or, it takes at least two to tango)[END_REF] decision-making patterns. These results are common among most treatment decision-making contexts (e.g., illness, decision-making subject) included in this review. Therefore, the results are presented in a general manner except when family involvement was specific to the decision context. The studies' characteristics and results are presented in Appendix 3.

3.2.Theme 1: Roles of the family

Twenty-five studies explored the roles of FMs during treatment decision-making [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]46,47,50,51,53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF]. We identified 4 sub-themes: role of social support, role of intermediary between the patient and the physician, role of collaborator and role of messenger.

Family members as source of social support

Fifteen studies identified FMs as important helpers in treatment decision-making [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF]- [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]46,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. They can provide emotional, informational and esteem support.

Insert « Table 1 » Insert « Figure 1 »
Informational support was the most common support provided by FMs (14 studies) [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]47,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. FMs tended to summarize the information given by the physicians to the patients and repeat it [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. Furthermore, FMs filtered information on the treatments which were not consistent with the patients' or the families' wishes, so as not to overwhelm the patients [START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]47].

The second most reported type of support provided by FMs was emotional support (10 studies) [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]46,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. FMs created a "safe place" for the patients by simply "being there" [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF].

They provided physical support (e.g., hand holding) and reassuring comments regarding the decision [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF].

Furthermore, FMs could provide esteem support by showing confidence in the patients' ability to make the right decision [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF].

Finally, the support provided by FMs may reduce the patients' burden and their uncertainty in treatment decision-making [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF].

Family members as intermediaries between the patient and the physician

Thirteen studies explained that FMs could help the communication between the physicians and the patients [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]47,50,51,53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. They serve as advocates for the patients, intermediaries between the patients and the physicians or translators.

First, FMs could be active patient advocates. They could defend the patients' interests, give useful information (e.g., medical histories) and ask questions to know more about the treatments (e.g., alternatives, potential benefits/consequences) [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]50,51,53]. This role highlights a strong patient-family coalition [50].

Secondly, when FMs acted as intermediaries, they relayed the patients' questions/concerns to the physicians and vice versa [START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF] or helped during the consultations when the patients were distressed [START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]. FMs could also act as the patients' "representatives" and make the decision on their behalves [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF]46,50,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. They then became the first interlocutors of the medical teams.

Finally, FMs could act as translators for the patients, allowing the latter to better interact with physicians despite the language barrier [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]47,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF].

Family members as collaborators

This role was found in 13 studies [START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]51,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] and was reported by patients, families and physicians. FMs collaborated with the patients during the decision-making process by sharing thoughts/ideas, by participating in the discussions [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF] or by acting as sounding boards for the patients [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. Some patients and FMs used the words "we"/"our" to talk about the disease and/or the treatment choice [START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]. Patients and FMs worked as co-decision makers during the decision-making process [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF].

Family members as messengers

Laidsaar-Powell et al. [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF] reported that FMs attending medical consultations could act as messengers to the extended family. They shared the information they got during the consultation and defended the patients' choices. This role can be stressful for FMs and a potential source of family conflict.

3.3.Theme 2: Types of family influence

Twenty-five studies [12,[START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]47,50,51,53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF][START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF] reported the types of family influence. Two sub-themes emerged: how and when FMs influence decision-making.

How family members influence decision-making

Different influences and attitudes were reported: direct or indirect influence, positive or negative influence, and passive to dominant attitude. The following definitions are based on our analysis of the data.

3.3.1.1.Direct or indirect influence

Twenty-two studies discussed the direct (n=20) and/or indirect (n=9) influence of families [12,[START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]45,47,50,51,53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF].

A direct influence refers to a specific or observable behavior which influences the flow of decisionmaking and/or its outcomes. It includes behaviors such as: giving opinions about the treatments [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF] and which physician to see [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]50], encouraging the patients to consider their families' opinion during the decision-making [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF], persuading the patients to make a certain decision [START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]45,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF], offering to donate a kidney in renal failure [START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF], and acting as intermediaries between the patients and the physicians [START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]47,53,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF].

On the contrary, an indirect influence does not refer to any specific behavior. Patients are influenced by their families just "being there". More precisely, patients considered the potential impact of the treatment on their families to make their decisions [12,[START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF]53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF]. They opted for a certain treatment after considering their family medical history [53] or because of their concerns [START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF] and obligations toward their families [12,45].

3.3.1.2.Positive or negative influence

Patients, families and physicians reported the FMs' positive (n=16) or negative (n=12) influence ( 16studies) [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]45,50,51,53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF]. This refers to the patients', FMs' and physicians' perceptions of the impact of family involvement on the decision-making process.

A positive influence refers to the patients' appreciation of their families' involvement in decisionmaking [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF] and when FMs are perceived as being helpful [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF]53,[START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF]. The FMs' involvement contributed to reinforcing their relationship with the patients and reducing the patients' anxiety in treatment decision-making [START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. In addition, FMs contributed to protect the patients' autonomy [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]51] and rights [START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]. Patients reported that family involvement tended to improve their relationship with their physicians (e.g., physicians give more information when FMs attend the consultation) [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF]. Positive influence is also linked to the FMs' role [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]50,51,53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF].

Conversely, family influence is deemed negative when FMs interfere with the decision-making process, with for example a negative attitude (e.g., pressuring the patients), [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]51,53,[START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF], a dominant attitude (perceived negatively by physicians) [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]51], a change of attitude [53], or when they overwhelm the patients with information [START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF], or when the patients think of a FM's medical history (e.g., a FM died of cancer despite chemotherapy) [53]. Furthermore, the FMs' presence during the consultations could generate tensions [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] or prevented the patients from talking about certain subjects (e.g., sexuality) [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. In some cases, when FMs were the first interlocutors of the medical staff, it could prevent the patients from fully understanding the decision-making [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]50].

Passive to dominant attitude

The FMs' behaviors during the decision-making process can be conceptualized as a continuum from a passive (n=5) to an active (n=9) or even a dominant attitude (n=6), as reported in nine studies [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]50,51,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. A passive attitude refers to FMs who are not involved in the decision-making [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF], do not share their opinion [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF] or do not want to be involved for specific reasons (e.g., lack of medical knowledge) [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF]. The FMs' attitude is deemed active when they ask questions [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF]50],

explain/inform the patients about the treatments or have a collaborative role in the decision-making process [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF]50,51,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. More rarely, FMs can have a dominant attitude by taking charge of the decision-making process [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] or having autonomy-detracting behaviors (e.g., answering for the patients) [51]. This attitude was generally perceived positively by patients [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF], while the physicians perceived this dominant attitude negatively [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]51]. If patients were passive during the decision-making, FMs had a more active/dominant role [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF].

When family members influence the decision-making

Eleven studies discussed family influence during different stages [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]50,51,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]: before, during and after the consultation with a physician.

First, FMs could influence patients before the consultations by advising them to undergo medical tests [50,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF] or choose a certain physician or hospital [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]. Thus, FMs could influence patients even before any treatment decision needed to be made. To clarify their role, they could discuss with the patients what behavior they should adopt to be helpful [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. Secondly, FMs could take an active role during medical appointments, allowing the patients to make decisions independently [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF].

Consultations could be divided in 3 sub-stages: information exchange, deliberation and decisionmaking, as presented by Charles et al. [START_REF] Charles | Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model[END_REF][START_REF] Charles | Shared decision-making in the medical encounter: what does it mean? (Or, it takes at least two to tango)[END_REF] (only Laidsaar-Powell et al. [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF] refer to this definition).

FMs were involved during the exchange of information, both with the patients and the clinicians. They provided support to the patients [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]50,51,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. During the exchanges with the physicians, FMs could act as intermediaries [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]51], resulting in an improvement in the quality and the quantity of information shared [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF]. FMs could then be involved in the deliberation. In this sub-stage, few FMs expressed their opinion or dominated the discussion [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. They mainly supported the patients' decisions [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. They could also act as sounding boards for the patients [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. Finally, FMs are not involved in the decision-making phase (i.e., when the patient formulates his/her decision) [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] but they influence the patient's choice [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]45,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] and can deliberate about the decision before with the patient [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF].

After the consultations FMs could keep discussing the decision, recall or obtain information [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. The FMs' attitudes could also be discussed after the consultations with the patients to identify helpful and unhelpful behaviors [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]. During this stage, patients and FMs could express their preferences/feelings. Patients could change their minds or seek a second opinion [START_REF] Hubbard | Treatment decisionmaking in cancer care: The role of the carer[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF].

3.4.Theme 3: Factors contributing to family involvement

Twenty-nine studies [12,16,[START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lam | Does the use of shared decision-making consultation behaviors increase treatment decision-making satisfaction among Chinese women facing decision for breast cancer surgery?[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF][46][47][48][49][50][51][52][53][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF] highlighted the facilitators and barriers to family involvement. These factors also contribute to the role and the type of family influence.

Illness factors

Depending on the illness, the type of influence could vary. In chronic kidney disease it appeared that indirect influence was much more studied and reported by researchers than in other diseases [12,[START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF]. In particular, when patients considered or chose in-center hemodialysis, indirect influence was often reported [12,[START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF]. In breast cancer, most patients came to the consultations with a FM [START_REF] Lam | Does the use of shared decision-making consultation behaviors increase treatment decision-making satisfaction among Chinese women facing decision for breast cancer surgery?[END_REF]48,53]. The most reported type of influence was direct influence [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. In fact, FMs could have a collaborative role [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF]48,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] and provide emotional and informational support [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF].

Patients reported both (mostly direct) positive influence and (both direct and indirect) negative influence [53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF].

Patients factors

Family involvement in the decision-making was modulated by the patients' individual factors, as reported in 12 studies [16, [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]46,[48][49][50]52,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. FMs were more involved in the decisionmaking when the patients were of a young age or elderly [16,[START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]46,48,49,52], women [49],

when they were difficult to contact by the medical team [50], or lacked medical knowledge [START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. In these cases, family influence was direct.

Family factors

Seven studies [16,[START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]51,52,[START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] reported individual and relationship factors related to the involvement of FMs in the decision-making. First, FMs involved in the decision-making were commonly educated middle-aged women with good medical knowledge. Secondly, FMs tended to be more involved when they had a strong relationship with the patients [16,52,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF] or when the decision impacted them (e.g., sexuality) [START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF]. Spouses, parents and children were more involved in treatment decision-making, compared to other FMs [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]51].

Cultural factors

Twelve studies reported that FMs were more involved in the decision-making process when the patients were from a different culture or did not speak the same language as the physician [16, [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]47,48,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. FMs usually acted as translators [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]47,[START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF] and could struggle to translate medical terminology [47]. Cultural specificities exist: Hispanic patients were more likely to be helped by a parent, a child or a grandchild, while Asian patients were more likely to be helped by their partners [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]48]. Moreover, in studies carried out with Asian patients, FMs were often involved in treatment decision-making [16, [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF]: they influenced greatly, both directly [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF] and indirectly, the patients' choices [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF].

Medical factors

Twelve studies addressed this subtheme [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]50,51]. Physicians could request the FMs' advice when a patient was too physically/mentally unwell [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]50]. FMs were more involved with sicker patients [51]. Furthermore, the degree of family involvement fluctuated depending on the different stages of the patients' care (e.g., first decision, end-of-life decision) [START_REF] Chong | Patient and family involvement in decision making for management of cancer patients at a centre in Singapore[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]. When surgery was a treatment option, FMs provided a lot of informational support to the patients [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]] and adopted a very active attitude in the decision-making process [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF].

Barriers to family members' involvement

Four studies reported barriers to family involvement in treatment decision-making [16,[START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF].

These barriers include: the FMs' lack of medical knowledge [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF], poor fluency in English, distance, work responsibilities [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF], and higher patient education or medical knowledge [16,[START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]. Furthermore, FMs did not want to participate in decision-making when they were 'scared' of the illness and its consequences [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF].

Theme 4: Family needs and preferences

Nine studies listed the FMs' needs during the decision-making process [16, [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF].

They were divided into two sub-themes: need for information and need to be involved. These needs are similar to the patients' [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Harrington | Understanding kidney transplant patients' treatment choices: The interaction of emotion with medical and social influences on risk preferences[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF]47,53,[START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF][START_REF] Rotman-Pikielny | Participation of family members in ward rounds: Attitude of medical staff, patients and relatives[END_REF]].

Need for information

The main need expressed by FMs was a need for information (5 studies) [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF]. FMs desired more information in 7 domains: treatments [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF], outcomes/complications of the treatments [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Dellon | Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF], prognosis [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF], impact of the treatment on the patient and family's lifestyle [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF], financial impact and technical knowledge regarding the treatment [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF]. For FMs, this knowledge allowed them to help the patient better. However, to be efficient, the information given must not exceed their memory, understanding and psychological capacity [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF].

Need to be involved

Some FMs expressed a need to be involved in the decision-making process (5 studies) [16,[START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. They wanted to participate in the consultations [START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF] and the discussions about the treatment decision [16,[START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF]. Being involved could allow them to discuss treatment choices with the patients more efficiently [START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. FMs wanted to be involved in the discussions with the physician because the disease and treatments would affect them too. They wanted to be taken seriously, to be listened to and have their expertise of the patient recognized by the physicians [START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. FMs wished to share some of the rights and responsibilities associated with decision-making [START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF]. However, two studies [START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF] highlighted some FMs' preference not to be the decision makers, so as not to feel guilty. The final choice belonged to the patients [START_REF] Hirpara | Understanding the complexities of shared decision-making in cancer: A qualitative study of the perspectives of patients undergoing colorectal surgery[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF].

3.6.Theme 5: Decision-making patterns

"Patterns" of decision-making emerged in 17 studies [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lam | Does the use of shared decision-making consultation behaviors increase treatment decision-making satisfaction among Chinese women facing decision for breast cancer surgery?[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]47,[50][51][52][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF].

FMs could be excluded or included in treatment decision-making. We propose potential decisionmaking patterns. However, the patterns are not clearly defined in the studies.

Family members' exclusion from decision-making

FMs could be excluded from decision-making by both patients and physicians (reported in 15 studies) [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF][START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]47,[50][51][52][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. First, the decision could be made by the physicians only. Patients could defer the decision to the physicians [START_REF] Blumenthal-Barby | Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF]47,50,52], when they trusted them [START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]. Physicians could also dominate the decision-making [START_REF] Pardon | Preferred and actual involvement of advanced lung cancer patients and their families 53[END_REF]51]. Secondly, the decision could be made by the physicians and the patients. A patient-physician coalition could contribute to exclude FMs from the decision-making [50]. Some patients did not want to involve their families in this process (e.g., disease hidden from FMs) [START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Lowden | Redefining self: Patients' decision making about treatment for multiple sclerosis[END_REF]47,[START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. The physicians' attitude toward FMs could also be inclusive/exclusive [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. In some cases FMs had to make an effort to be included [START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF].

Family members' inclusion in decision-making

Five studies discussed patterns where FMs were included in treatment decision-making [START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Lam | Does the use of shared decision-making consultation behaviors increase treatment decision-making satisfaction among Chinese women facing decision for breast cancer surgery?[END_REF]50,[START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF]. First, treatment choice could be discussed between the physicians and the FMs, sometimes excluding the patients [50]. A physician-FMs coalition was linked to the FMs' roles or attitudes. FMs were involved in a dyadic decision-making with the physicians when they had an active attitude and when they represented an intermediary between the patients and the physicians. Secondly, FMs could be included in a triadic decision-making, in which physicians were the third party of the patient-FM coalition [50]. Approximatively one third of the patients preferred this pattern [START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Jordan | Examining patients' preferences for participation in clinical decision-making: The experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population[END_REF][START_REF] Heyland | Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously III hospitalized patients and family members[END_REF].

In the case of couples, partners encouraged the patients to get more involved in the treatment discussions. This was defined as a spousal coalition [50].

Discussion

The current review presented the FMs' roles, attitudes, factors of involvement and needs in chronic disease treatment decision-making. Our results are consistent with previous literature reviews [START_REF] Laidsaar-Powell | Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations[END_REF][START_REF] Schumm | They're doing surgery on two people': A meta-ethnography of the influences on couples' treatment decision making for prostate cancer[END_REF]18], but allow a broader understanding of family involvement in chronic illness across the entire process of treatment decision-making. Indeed, we highlighted the similarities but also the differences in family involvement depending on different factors (e.g., illness, culture).

Among the 5 major themes identified in the present systematic review, two have been widely described: the FMs' roles and the factors influencing family involvement in treatment decisionmaking. For example, the FMs' role of social support is well described. Such support is essential for patients during treatment decision-making and represent an indirect influence. In fact, several studies show that social support (i.e., ability to provide assistance to others) is important in daily life (e.g., stress management) [START_REF] Cohen | Stress, social support, and the buffering hypothesis[END_REF][START_REF] Sarason | Stress and social support[END_REF], as well as when someone faces a severe illness [START_REF] Berg | A developmental-contextual model of couples coping with chronic illness across the adult life span[END_REF][START_REF] Frohlich | The social support model for people with chronic health conditions: A proposal for future research[END_REF]. The role of social support is undoubtedly the most described in the literature whereas less is known about the roles of intermediaries and collaborators. However, they are more and more studied. Indeed, most of the time FMs, patients and physicians reported seeing family involvement positively (e.g., patients feel less anxious).

The remaining 3 themes (FMs' influence, needs and patterns of decision-making) are rarely described in the literature. Family influence in treatment decision-making can be defined as either direct/indirect and positive/negative. Such influence has not been clearly defined yet, although Rini et al. [45] proposed a questionnaire assessing family influence on the decision to do a colectomy. Several researchers refer to family influence [START_REF] Laidsaar-Powell | Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences[END_REF]50,[START_REF] Laidsaar-Powell | The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making[END_REF], sometimes with another terminology [START_REF] Laidsaar-Powell | Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations[END_REF]. Overall, both patients and physicians express positive attitudes toward family involvement in treatment decision-making [START_REF] Laidsaar-Powell | Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF] and FMs want to be involved [START_REF] Laidsaar-Powell | Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations[END_REF]16,[START_REF] Ito | Perceptions of Japanese patients and their family about medical treatment decisions[END_REF][START_REF] Krieger | Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF][START_REF] Sinfield | Patient-centred care: What are the experiences of prostate cancer patients and their partners?[END_REF]. Secondly, being involved in treatment decision-making generates several needs for FMs (e.g., information). Thus, the FMs' involvement can impact them negatively. They can feel burdened or isolated [START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF]. Although, two articles described a negative impact of the involvement in decision-making on FMs [START_REF] Ivarsson | Relative's experiences before and after a heart or lung transplantation[END_REF][START_REF] Mcskimming | The experience of life-threatening illness: Patients' and their loved ones' perspectives[END_REF] no studies aimed to assess this effect. Yet, the studies in our systematic review found such impact (e.g., family tensions) [START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF][START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. In other contexts, such as disease management, studies indicate that FMs are more depressed than patients [START_REF] Chiao | Caregiver burden for informal caregivers of patients with dementia: A systematic review[END_REF][START_REF] Choi | Depression and distress in caregivers of children with brain tumors undergoing treatment: Psychosocial factors as moderators[END_REF][START_REF] Northouse | The impact of caregiving on the psychological well-being of family caregivers and cancer patients[END_REF]. Thirdly, the included studies discussed briefly decision-making patterns. They are not clearly defined. Studies investigating these patterns are needed to understand family involvement better. To date, only one decision-making pattern is clearly conceptualized:

"shared decision-making" [START_REF] Charles | Shared decision-making in the medical encounter: what does it mean? (Or, it takes at least two to tango)[END_REF]. By comparison, triadic treatment decision-making has only been recently defined by Laidsaar-Powell et al. [START_REF] Laidsaar-Powell | The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making[END_REF] with the TRIO Framework, which is specific to cancer treatment decision-making. Such definition is needed for triadic decision-making in the chronic illness context in general.

The themes we described are found in most treatment decision-making pertaining to a chronic illness.

However, some specificities exist according to the treatment choice, the disease and the type of FMs involved. First, FMs are more involved when surgery is an option [START_REF] Del Piccolo | Asking questions during breast cancer consultations: Does being alone or being accompanied make a difference?[END_REF][START_REF] Hall | Informed consent for inguinal herniorrhaphy and cholecystectomy: Describing how patients make decisions to have surgery[END_REF][START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF][START_REF] Lin | Family as a whole: Elective surgery patients' perception of the meaning of family involvement in decision making[END_REF][START_REF] Lin | Reasons for family involvement in elective surgical decision-making in Taiwan: A qualitative study[END_REF]. Secondly, in chronic kidney disease FMs seem to have a more indirect influence [12,[START_REF] Harwood | Dialysis modality decision-making for older adults with chronic kidney disease[END_REF][START_REF] Wuerth | Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis[END_REF][START_REF] Tong | Patients' experiences and perspectives of living with CKD[END_REF], whereas in breast cancer, the most reported type of influence is direct influence [START_REF] Lee | Family involvement for breast cancer decision making among Chinese-American women[END_REF]53,[START_REF] Öhlén | The influence of significant others in complementary and alternative medicine decisions by cancer patients[END_REF]. Finally, partners seem to be the most involved in treatment decision-making [START_REF] Laidsaar-Powell | Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode)[END_REF][START_REF] Laidsaar-Powell | Attitudes and experiences of family involvement in cancer consultations: A qualitative exploration of patient and family member perspectives[END_REF]51]. Further research needs to investigate why such differences exists to formulate specific recommendations for health professionals.

Limitations

First, the present results should be read with caution considering the characteristics of the included studies. Most were cross-sectional (n=35), qualitative (n=26), questioned only the patients (n=21) and focused on cancer patients (n=19). Therefore, the results are not generalizable, do not account for the entirety of the decision-making process and are not exempt of retrospective biases. Decision-making may be more studied in oncology because it is a life-threatening illness with multiple heavy treatment options. Furthermore, numerous studies are of low to moderate quality. They present a lack of precision regarding the population or methodology. Secondly, investigating family involvement in treatment choice is not the main objective of most of the included studies. Interestingly, patients mention naturally FMs when they talk about their decision-making process. Thirdly, due to a wide variation of terms used to refer to FMs (e.g., companion, kin, caregiver), some relevant studies may not have been included. Finally, the QATSDD could be improved with better defined criteria. Indeed, some items could be clearer by adding examples. Moreover, other items could be weighted as more indicative of a rigorous methodology than others (e.g., sample size vs. user involvement in design).

Similar criticism has already been formulated [START_REF] Fenton | The QATSDD critical appraisal tool: comments and critics[END_REF].

Conclusion

FMs are essential in treatment decision-making. However, several gaps exist in our understanding of family involvement throughout this process. Longitudinal and mixed methodology research is needed. ("shared decision" or "decision making" or "decision" or "choice")

AND

("family" or "spouse*" or "companion" or "relative*" or "partner*" or "carer" or "caregiver")

AND

("doctor" or "physician" or "medical") AND ("disease" or "illness" or "chronic" or "acute"))

NOT

("dementia" or "psychotic") Box 2. Research equation (("shared decision" or "decision making" or "decision" or "choice") AND ("family" or "spouse*" or "companion" or "relative*" or "partner*" or "carer" or "caregiver") AND ("doctor" or "physician" or "medical") AND ("disease" or "illness" or "chronic" or "acute")) NOT ("dementia" or "psychotic")

Filters selection:

*Languages: English or French NB: This equation was used on Cochrane Library, PsycINFO and PubMED databases. To limit the number of publications on ScienceDirect database, "Title/Abstract" criteria was selected and refine with the following articles criteria: only articles and review articles.  FMs can be an asset for the patients and the medical teams, before, during and after the consultations. Indeed, patients talk to their family about their disease and the treatment decision they have to make.

 Talk with the family. FMs can adopt helpful behaviors but sometimes they need to be guided (i.e., patients or physicians should explain to FMs what behaviors could be helpful for the patient).

 Listen the patient and do not systematically exclude FMs from treatment decisionmaking. Some patients want their FMs to be included but sometimes, a private patientphysician discussion can allow the patient to talk about "delicate" subjects (e.g., sexuality).

Research implications

 Mixed methodologies can be considered as a gold standard to evaluate and understand treatment decision-making. Qualitative designs allow to comprehend the complexity of this process. Quantitative designs allow to assess parts of the process with a large number of participants.

 Longitudinal studies are needed to understand treatment decision-making better.

Currently, studies are mostly retrospective and cross-sectional. Since decision-making is a process, longitudinal methodologies could allow us to better comprehend treatment choice from the first symptoms of the illness to the consequences of this decision to evaluate its long-term impact.

 Reliable quantitative tools need to be developed to assess family involvement in treatment decision-making. Questions about: the information they were given by the medical staff about dialysis, their current health status, their history of illness and their process of diagnosis. Follow-up questions were used to elicit more information.

The people choosing not to start dialysis were more often older, men and widows/widowers. For some participants, having to take care of a family member who was sick influenced their choice towards dialysis.

[

The patients needed:

-To talk with other patients and their families -To trust their physicians -An involved caregiver -This caregiver to synthesize, translate and memorize the information

The caregivers needed:

-Information on their lifestyle -To know what their responsibilities are

The patients wanted to live longer, especially for their family members (FMs). Family was an important value to them.

The patients perceived that decisionmaking was often deferred to the doctors and did not feel like they had a choice. Close others asked significantly fewer questions than patients and gave priority to the topics important to the patients.

During the consultations, questions asked by the close others aimed to obtain new information (53% of the questions) or to help understand the information (38%).

The relatives had different roles during the consultations with regards to asking question:

a shared role with the patient (67%), a passive role (12%), an active advocate's role (21%).

Differences in satisfaction with treatment decision between close others and patients:

-50% reported a similar score (among them 92% agreed on a positive evaluation) -50% of the patients' evaluations were more negative than their close others' [ More than half of the participants described their families as a source of information that helped them during the decision-making process. 1/5 described them as their primary source of information. Assistance in decision-making was rendered by the patients' primary care physicians or other non-surgical staff provided as well as family, friends and significant others.

[28]

Harrington and

Design: Crosssectional study

Sample: 24 transplant recipients

The place of family in

Semi-structured interviews:

Treatment choice was influenced by the trust in the staff.

Morgan The patients talked about risky treatments with their families. Their FMs were much more 'risk-averse' than they were. There was not much family negotiation regarding immunosuppressant treatments when the graft came from a family member. In fact, family negotiation was more a result of the necessity to discuss risks within relationships.

[ The patients wanted to: participate in the discussions regarding their treatment, give their opinions, be asked for their consent, have an opportunity to choose a treatment when multiple options are available, be told the reasons for their treatment, have their opinions respected by health professionals.

The FMs wanted to: be asked for their consent regarding the patients' treatments, be explained the reasons for a treatment, have an opportunity to choose their treatment when several options were available and have their opinions respected by the

staff.

More than half of the patients did not consider that their families should make the decision when the patients are competent.

Most patients and FMs thought that the patients should make the decision after consulting both their families and their physicians.

The relationship with the staff was very important.

There were similarities but also differences between the patients' wishes and those of their families. [

Semi-directive interviews:

Conversational approach. The participants were first asked about their experience with information while waiting for the transplantation. Followed by a question about their experience of social support during that same time period.

Three main themes:

-"Navigate specific circumstances" -"Facilitating throughout the transplantation journey" -"Experiences of strength and weakness of information and support." The relatives wanted the patients to be the ones to make the final decision because they did not want to feel guilty in case the consequences were bad. They provided physical, psychological Follow-up questions for clarification and to keep the conversation going. and social support to the patients.

FMs were happy with the information they received from the healthcare teams but also sought information inside and outside the healthcare system. They could also feel uninformed and unsupported at time by the staff. [ Less than half of the participants did not want their families to be told about the severity of their illness. 40% of the patients wanted to make the decision with their physicians alone while 33% wanted to involve both their families and their physicians in the process. If their families and the physicians disagreed, 77% of patients would have listened to the doctors' recommendations. Only 5% would have considered their families' choices as relevant.

Buenos Aires

Themes for the interviews with oncologists:

-"Attitudes towards FMs in consultations" -"FMs' roles in the consultations" -"Family involvement in decision-making" -"Family involvement in decision-making stages" -"Family involvement in decision-making (barriers and facilitators)" Themes for the interviews with Three major themes regarding the links between the families and treatment decision-making:

-"How families are involved in the decision-making process: specific behaviors of families across 5 decision-making stages" -"Attitudes regarding family involvement […]" -"Factors influencing family involvement"

Families were involved in every stage of the decision-making process:

-Before the consultation: Families influenced the patients to go to a certain center or to see an oncologist in particular, -During information exchanges: Families provided informational assistance to both the patients and the clinicians. Information exchange could continue outside the consultations (patient-family member).

-During the deliberation: Families' roles were to agree and -"Patient experiences and attitudes" -"Decision-making" -"Benefits and challenges of FMs' participation" -"Barriers and facilitators for FM participation" -"Strategies" Interview themes for nurses and FMs are not specified.

support the patients' decisions or to act as a sounding board. A few expressed their own opinions and a minority dominated the deliberation. Alliances could be formed if there were some disagreements. Deliberation could continue outside the consultation (patient-family member) and this was seen as beneficial.

-When the decision was made: Families' behaviors ranged from no influence to dominance. They could be excluded from the decisionmaking. Families could influence the decision through proximal actions (support etc.), with or without sharing their opinions. The decisions could also be made by the families and the patients remained passive (in particular when the patients did not speak English very well and/or when the FMs had better medical knowledge). However, most of the time, the patients were the ones to make the final decisions with their families as supporters.

-After the consultations.

The participants reported that the patients should remain the authority in the final decision. FMs did not want to feel responsible if "something [went] wrong" and reported that it was the patients' bodies that were affected therefore they should be the ones making the decision.

Many participants acknowledged the right of the family to be involved in the decision-making process because the decision could also affect them, especially if there could be consequences on sexuality/fertility and/or if the patients and the FMs had young children together.

The families' involvement did not reduce the patients' authority. It could even enhance it.

Recruitment: Medical

The place of family in treatment decision is:

A main objective of the study

Semi-structured interviews:

Three main questions:

-"Please describe the circumstances when you made your surgery decision" -"How did your family participate in your surgery decision-making process?" -"Which FMs participated in your surgery decisionmaking process?"

Three main themes emerged:

-Primacy of family well-being The patients made their own decisions but considered their family needs and potential reactions, as well as their own responsibilities to their families -Families as information brokers The families were intermediaries between the physicians and the patients. The FMs relayed the information given by the doctors to the patients and facilitated communication. They asked questions and expressed the patients' concerns. They could receive more Center in southern Taiwan Discipline: NS Choice: Nononcological elective surgery information than the patients so they relayed these. This was seen as positive by the patients because it alleviated their burden.

-Families as patient advocates The FMs defended the patients' interests, clarified the doubts about the risks and complications of the surgery. [ -"To share responsibility" The FMs persuaded, encouraged or expressed their desire for the patients to accept surgery; FMs provided emotional support and felt obligated to partake in the decisionmaking process.

-"To ensure the correctness of medical information" FMs collected disease-related information (e.g., among friends or relatives to better cope with the disease) and helped the patients to communicate with the medical staff (e.g., when the patients were emotionally troubled, or to fill in the missing points).

-"To safeguard the patients' wellbeing" FMs protected the patients' rights and moderated the doctor-patient relationships (e.g., rephrase some words said by the patients to avoid tensions,). [ Interviews began with a broad question to encourage the participants to talk about their experience with decision-making. Further questions aimed to encourage the participants to expand on the subject. Three patients were then asked to confirm the development of the themes by the researcher during the analysis stage of the study.

FMs could support, encourage and filter some information about the illness and its treatments when the patients were coping with the illness. The participants described the decision-making process as team work with their close others, although the final decision remained personal. When the patients' decision-making style was incongruent with the FMs', the latter were excluded from the discussions. [

Medical variables

associated with a greater probability for the patients to choose surgery. Other types of negative influences were associated with a lower probability to choose surgery.

Negative influence was associated with greater decisional conflict whereas assistance with understanding was associated with a lower decisional conflict. However, assistance with understanding was associated with decisional conflict in men and not in women.

Decisional conflict was associated with having a female close other.

[ Open-ended questions and probes.

Thematic analysis:

Based on a grounded theory. 6 randomly selected transcripts were analyzed.

Four main themes:

-Perceived role of the patients in decision-making Most participants reported a passive involvement in decision-making discussions (doctors did not seek their opinions or the patients did not want to be involved). The doctors were perceived as the experts.

-Access to information and the impact of language Most participants reported that their doctors gave less information than they would have liked. Access to information was an important factor influencing the patients' role during the decision-making process. For some patients though, too much information could be distressing. Language was a huge barrier to information (FMs could act as translators, but struggled to translate medical terminology).

- the patients' requirement for type and extent of information the patients' wish to 38.3% of patients wanted their families to be involved in the decision-making process for a second surgery and/or further ICU stay. For women, their families' opinion was very important even if they were conscious (p= 0.052). the patients and their wives: They and/or the families had very active roles on the patients' demands. They encouraged the patients to get more involved in the decision-making process and can discuss the choices offered by the clinicians. The wives represented a support in the decision-making and could inquire about the treatment options.

[ Most patients came to the appointment with their oncologists with a family member or a friend.

They reported both positive and negative influences.

-Positive influences: Coming from their family and friends. They felt these people spoke for them and found reassurance from the input of their friends in the medical profession. -Negative influences: FMs who were negative, the changes in attitude of their social circle (e.g. Cancer label), family history of cancer and death despite treatments hindered some women in their decision-making process. [ The patients would like for the physicians to listen to both them and their families. They considered they were a unit and should be considered as such. FMs wished to be included in the discussions with the physicians because the decision and the information given during these exchanges would affect them as well.

They also wanted their opinions to be considered and taken seriously. They would like their "expertise of the patient" to be recognized by the doctors.

The illness was perceived as shared.

[ The way the decision was made was either directive (choice made by the physicians alone) or non-directive (choice entirely made by the patients). Some patients were not satisfied with these approaches because of the lack of tailoring to their needs and wishes. One patient wished the decision had been made in a more collaborative way. Another regretted not having one of his FMs or friends with him during the consultation.

The partners reported both positive (their treatment by staff) and negative (being excluded from explanations) experiences. The partners supported the patients and asked questions about problems the patients were unlikely to raise. Some felt their concerns were not taken seriously and sometimes they had to take the initiative to be included in the consultations. The partners reported their own needs (support and information) and these were not met. [ Most patients perceived that the main choice they had was to either agree or disagree with the treatment recommended by the physician.

-The carers as facilitators during the deliberation phase

The carers could act as soundboards for the patients and stimulate their thinking about their treatment decisions and process outside the consultations. The carers were involved in both current and future decision-making, including during the follow-up of the illness. They also could influence this process by deciding which physician to see. Failure to involve the families could be upsetting for both the patients and the carers. This could lead the patients to feel uninformed and prevent the carers from being able to be supportive. [ -Framing Illness as Personal Identity The decision-making process seen through the perspective of the patients' rights and responsibilities (it is the patients' bodies that are affected so it should be the patients' decisions).

-Framing Illness as Relational Identity The cancer experience and the treatment choice could lie within the patient-caregiver relationship. The caregivers desired to share some of the rights and responsibilities associated with the treatment decision-making. The caregivers could act as advocates for the patients. "We" and "our" was used to talk about the illness or the choices to be made.

-Perceiving illness identity as a patient-level personal identity

The caregivers perceived that patients communicated their "ownership" of the illness by informing the caregivers of the treatments they would be receiving after it was decided. Sometimes, FMs were disappointed not to have been consulted before the patients made their decisions.

-Perceiving that the patients considered their illness as a relational identity The caregivers acted as sounding boards (= the patients needed their approval or trusted their opinions about what they should do).

-Family decision-making styles Independent: Both the patients and caregivers considered the illness as a patient-level personal identity. The caregivers perceived their primary role as supporting the patients' health.

Collaborative: Both the caregivers and patients framed the illness as part of the relational identity. This collaborative involvement could evolve in time. The caregivers provided decisional support. Isolated: The caregivers framed the illness as a patient-level personal identity but the patients framed the illness and decision in relational terms. The caregivers gave different reasons as to why they avoided participating in the treatment decision-making process: inconsistence with their personality, lack of medical knowledge, wish to stay positive… Demanding: The caregivers framed the illness as a relational identity but the patients did not. FMs enforced an active role while the patients wished they did not. The caregivers attempted to convince the patients to take the decisions the caregivers believed was correct. This approach tended to pressure the patients into making a specific choice. [ The consultation was defined by four different stages: history taking, information exchange, deliberation and decision-making.

-Family roles in the consultation: Supportive role (40% of FMs during the history taking phase), active role (46% of FMs during the information exchange stage), passive role (42% of the FMs during the deliberation and decision-making phase) and dominant role (10% of the FMs female partners, 34% of male partners, 15% of daughters, 7% of sisters 3% of sons; 2% of sisters-in-law, 2% of friends Recruitment: NS Discipline: Oncology (various cancers) Choice: Treatment (NS) family-relevant behaviors based on several levels of inquiry detailed in the article. coded as for any consultation stage and only 13% of them maintained the same role throughout the consultation). In fact, 33% of the FMs assumed three or more roles.

-FMs' behaviors: They recalled information (77%), confirmed information given by the patients (43%), apologized for speaking or asked for permission to speak (15%), supported the patients by prompting the patients' questions (4%), summarized or repeated information for the patients (10%), made optimistic/positive statements (13%), interrupted or answered for the patients (54%), interrupted the oncologists (42%), asked questions about the treatment decisions (71%), discussed the risks/benefits of the treatments (35%), provided information related to the decisions (18%) and questioned the information provided by the oncologists (14%). 21% of FMs expressed a treatment preference whereas 7% talked about the patients' preference. Regarding the final decision, 6% of the FMs highlighted that the patients were the ones who could make a choice. 22% showed the patients support regarding their decisions.

The FMs were more likely to recall information for patients with an advanced disease.

No FMs said that they preferred being actively involved in the consultation and only one in the decision-making.

No significant associations were found between family relationship types and family member behaviors.

-Oncologist behaviors: Very few oncologists initiated family-related behaviors but they were fully responsive if a family member asked questions.

The FMs' behaviors and the oncologists' behaviors were linked. The oncologists were more likely to interrupt a family member who had corrected, disagreed or interrupted the patients.

-Patient behaviors: 21% of the patients corrected or disagreed with their FMs. 31% of the patients interrupted their FMs at least once. No patients expressed any preferences for their families to be involved, in two consultations however the patients indicated a desire for their FMs to stop talking or become more passive. No patient deferred their decision to their family member. [

Semi-structured interviews:

The participants were asked to discuss in detail the role of their families over the course of the patients' illness and were prompted to provide specific information about the family involvement at important points in the illness trajectory.

Most participants explained that one "key" family member consistently attended most consultations and was usually the most involved in the discussions about treatment decisions.

Three main themes emerged:

-"Family behaviors […]" Before the consultation: the families influenced the choice of oncologist or treatment center. Information exchange stage: they provided informational assistance to both the patients and clinicians (e.g., listening, remembering, providing information). Deliberation stage: sounding board, they supported the patients' wishes and preferences. Few dominated the deliberation or expressed their preferences. -"Attitudes toward family involvement […]" Patients' authority: the patients should take the final decision. The families' right to be involved: because it also affected them (e.g. emotionally, stressed them). Balancing authority: the FMs' roles was to enhance the patients' autonomy and involvement in decision-making. A dominant attitude was perceived negatively by the physicians.

-"Factors influencing family involvement" Patient factors: young or old patients, mentally unwell and less educated. Family factors: female, welleducated, middle aged, from a different generation to the patients the stress and insecurity of the lack of health insurance.

-Maintaining Family life: The patients' primary concern was surviving for themselves but also for their families. Women were concerned about the impact of their treatments on their families, especially on their ability to perform their usual roles and activities. The reassurance from FMs that the families would be able to function regardless was really important for the women making their decision. This was especially relevant for women who had children still living at home. -Making the decision The participants identified a spectrum of family influence during this process from being a strong voice to being a sounding-board. Some FMs expressed strong opinions about which treatment the patients should choose, or recommended to follow the surgeons' advice, whereas others supported the women making their final decisions. FMs can dominate the decision or collaborate with the patients (described as "our decision").

Australia

Gender The decision to accept a kidney was predominantly based on the nature of the relationship the patients had with their potential donors.

The participants who underwent dialysis made the decision regarding the modality based on family and lifestyle impact.

Box 1 .

 1 Practice and research implications are presented in Box 3. Finally, the potential difficulties FMs face should be considered. This could initiate reflections on family interventions. 11. N. Mendick, B. Young, C. Holcombe, P. et Salmon, The ethics of responsibility and ownership in decision-making about treatment for breast cancer: Triangulation of consultation with patient and surgeon perspectives, Soc Sci Med. 70 (2010) 1904-1911. 12. A. Visser, G.J. Dijkstra, D. Kuiper, P.E. de Jong, C.F.M. Franssen, R.T. Gansevoort, et al., Accepting or declining dialysis: considerations taken into account by elderly patients with end-stage renal disease, JNephrol. 22 (2009) 794-799. 13. J.L. Wolff, D.L. Roter, Family presence in routine medical visits: A meta-analytical review, Soc Sci Med. 72 (2011) 823-831. 14. C. Schäfer, K. Putnik, B. Dietl, P. Leiberich, T.H. Loew, O. Kölbl, Medical decisionmaking of the patient in the context of the family: results of a survey, Support Care Cancer. 14 (2006) 952-959. 15. C. Kimberlin, D. Brushwood, W. Allen, E. Radson, D. Wilson, Cancer patient and caregiver experiences: communication and pain management issues, J Pain Symptom Manag. 28 (2004) 566-578. 16. D.W. Shin, J. Cho, D.L. Roter, S.Y. Kim, S.K. Sohn, M.S. Yoon, et al., Preferences for and experiences of family involvement in cancer treatment decision-making: Patientcaregiver dyads study, Psychooncology. 22 (2013) 2624-2631. 17. D.W. Shin, J. Cho, D.L. Roter, S.Y. Kim, H.K. Yang, K. Park, et al., Attitudes toward family involvement in cancer treatment decision making: The perspectives of patients, family caregivers, and their oncologists, Psychooncology. (2016, in press). 18. R.L. Morton, A. Tong, K. Howard, P. Snelling, A.C. Webster, The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies, BMJ. 340 (2010) c112. in end-of-life decision making: A multicenter study in 13 hospitals in Flanders, Belgium, J Pain Symptom Manage. 43 (2012) 515-526. 45. C. Rini, L. Jandorf, R.E. Goldsmith, S.L. Manne, N. Harpaz, S.H. Itzkowitz. Interpersonal influences on patients' surgical decision making: The role of close others, J Behav Med. 34 (2011) 396-407. 46. M.L. Salter, M.A. McAdams-Demarco, A. Law, R.J. Kamil, L.A. Meoni, B.G. Jaar, et al., Age and sex disparities in discussions about kidney transplantation in adults undergoing dialysis, J Am Geriatr Soc. 62 (2014) 843-849. 47. J. Shaw, X. Zou, P. Butow, Treatment decision making experiences of migrant cancer patients and their families in Australia, Patient Educ Couns. 98 (2015) 742-747. 48. R.C. Shelton, G.C. Hillyer, D.L. Hershman, N. Leoce, D.H. Bovbjerg, J.S. Mandelblatt, et al., Interpersonal influences and attitudes about adjuvant therapy treatment decisions among non-metastatic breast cancer patients: An examination of differences by age and race/ethnicity in the BQUAL study, Breast Cancer Res Treat. 137 (2013) 817-828. 49. E. Uldry, M. Schäfer, A. Saadi, V. Rousson, N. Demartines, Patients' preferences on information and involvement in decision making for gastrointestinal surgery, World J Surg. 37 (2013) 2162-2171. 50. U. Boehmer, J.A. Clark, Married couples' perspectives on prostate cancer diagnosis and treatment decision-making, Psychooncology. 10 (2001) 147-155. 51. M.L. Clayman, D. Roter, L.S. Wissow, K. Bandeen-Roche, Autonomy-related behaviors of patient companions and their effect on decision-making activity in geriatric primary care visits, Soc Sci Med. 60 (2005) 1583-1591. 52. L.F. Degner, J.A. Sloan, Decision making during serious illness: What role do patients really want to play?, J Clin Epidemiol. 45 (1992) 941-950. Database search terms

Figure 1 .Box 3 .

 13 Figure 1. Flow diagram of study selection

  Decision stage: ranged from no involvement to dominance. Family influence: no family influence (decision made by the patients and/or the physicians) or through proximal actions (emotion, esteem and information support) or passive vs. dominant influence. Post decision deliberation stage: the deliberation about the treatment choice continued.

  Cultural influences

			Choice: Chemotherapy,		measured with:
			hormonal therapy		Psychosocial factors
					(14 items), fatalistic
					beliefs subscale of the
					Mental Adjustment to
					Cancer Scale (18 items)
					and social support
					subscale of the Medical
					Outcome Study (19
					items).
					-Provider-related
					factors and
					communication:
					Assessment of patients'
					preferred roles and
					involvement in the
					decision-making,
					Provider
					communication was
					also measured (4 items)
					and the group-based
					medical Mistrust Scale
					was used to evaluate
					medical mistrust.
	[49]	Design: Cross-	Sample: 253 patients	The place	Questionnaire:
	Uldry et al., 2013	sectional and	Age: Mean age = 58.3,	of family in	13 binary questions
		longitudinal study	SD = 15.5	treatment	(Yes/No) measuring:
	Switzerland	Method: Quantitative	Gender: 52.6% are men	decision is:
			Close others	Not a main
			characteristics: No	objective of
			close others were	the study
			included in this study

Acknowledgment:

We thank Professor Beatrice Berna for her editorial assistance in English.

Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Conflicts of interest: none.

Insert « Box 3 » Appendix 1. Quality assessment of the studies included in the systematic review Item (Score 0 -3) [ 61% of patients were included in the discussions on treatment choice. Some patients were not told their diagnosis (request to keep the diagnosis a secret from the patient was initiated by the families). Advanced age was associated with the patients' non-involvement at first diagnosis disclosure and families requesting that the diagnosis be not disclosed to the patient.

In 65% of the cases the family was included in the initial treatment decision-making. The families were more involved in the decisionmaking process when the patients were older, did not speak English and when non-curative treatments were considered. [ A persuasive influence was -Family involvement Some participants discussed their treatment options with their families and others did not involve their families at all. Arabic patients often thought that families should make the decision to relieve the patients from the burden of having to weigh up options. If the patients who held this view were forced to make a decision by themselves, feelings of distress ensued. [

The place of family in treatment decision is:

A main objective of the study

Focus groups:

From a larger study with 15 focus groups of men and 2 of some of their wives. Used 7 couples for which they had both the patients and their wives' data. Always started with the description of their experiences with prostate cancer. Three types of decision-making process depending on the coalitions between the three actors (the physicians, the patients, and their wives).

-Doctor-Patient alliance (exclusion of the spouses from the decision-making process): Doctors' opinions were very important to the patients. No treatment discussion between the patients and their wives. The wives seemed to have no role in the decision-making.

-Wives' participation in the decision-making process initiated by the physicians: Reasons: communication with the patients was difficult or they were judged too frail by the doctors.

-The main coalition was between The patients described that they did not want to be a burden for their children. The success of home dialysis was highly dependent on money, support (physical) and the presence/absence of someone at home to help. The men were less likely to look for information on dialysis and more likely to delay their decision. For some of the men, their wives were the ones seeking out information. The dialysis decision was shared with the partners or other FMs. Thus, these individuals also had to obtain information about the different treatments available. They often helped reinforce and clarify the information and advice given by the HCP. In the language used, "I" was often replaced by "We" regarding decision-making. [

The place of family in treatment decision is:

A main objective of the study

Semi-structured interviews:

-Description of how FMs were involved in their primary treatment decision making for breast cancer -Examples of the type of involvement -Discussion on family involvement and its influence on the women's decision and the overall decision making process.

Content analysis and inductive coding.

Family involvement in treatment decision-making could be divided in different categories:

-Gathering information:

The FMs searched, organized and helped analyze the risks/benefits of the options available.

-Being there:

The FMs' companionship was extremely valuable for the patients. Not all women received the support they wanted from their families during the decision-making process. This was a barrier and a source of worry for these women.

-Navigating the Health Care System: Limited English fluency was a significant barrier to accessing care and communicating with the clinician (even with a translator). FMs also helped with the administrative work. Families and friends helped them look for second opinions and buffer

Coding medical decisions:

Medical decisions were coded using an adaptation of the Elements of Informed Decision-making. Differences are listed in the article.

Interaction Analysis:

The coding system used was the Roter Interaction Analysis System (RIAS). It examined each full thought exchanged -Companions autonomyenhancing behaviors: Clarifying or expanding the patients' history, asking the physicians questions, repeating the doctors' explanations, asking the patients questions, prompting the patients to discuss topics and introducing medical topics that were not initially discussed. The companions' verbal dominance was positively linked to several autonomy-related behaviors.

-The companions' autonomydetracting behaviors: Answering for the patients (the most common), interrupting the patients or discussing their own health problems.

Most companions were engaged in both positive and negative autonomy behaviors. No companions engaged in only autonomy-detracting behaviors.

The companions of sicker and older patients were more likely to engage in facilitative behaviors compared with those of healthier patients. between either the physician and the patient or the physician and the companion. Companion verbal dominance was calculated.

The patients were more active decision makers than were their companions. In one third of the consultations neither the patients nor the companions were active decision-makers.

The friends and relatives other than children and spouses were less likely to be active in decision-making than the others. Facilitating patient involvement was significantly related to the patients' activities in decision-making. [ Most of the time, the significant others' involvement in decisionmaking was initiated by the patients but for some significant others, their involvement was self-initiated when they perceived that it was an important way of offering support for the patients. The beliefs on the reliability of complementary and alternative medicines were an important influence on the significant others' involvement. It could result in disagreements with the patients and tensions. Interviews analyzed using a grounded theory.

patients to make a decision Roles: Interested bystanders, active listeners, information gatherers, information reviewers, Co-CAM consumers. The significant others adopting these roles believed that patients needed to make their own decisions and thought of the cancer as a "private journey" that must not be influenced by other people. The significant others acted as an unbiased and neutral source of information and support. Some patients consciously limited their significant other to this type of involvement because they feared they might become a burden to them or because they felt their types of cancer were "low-risk" and that it was not necessary to worry others.

-"Becoming a team" (Collaborative decision-making) Roles: Co-decision-makers, Advisers, information gatherers, information reviewers, co-CAM consumers. The patients and the significant others worked together in making the decisions. This decision-making process involved respectful sharing of beliefs and experiences.

The patient reported that this kind of involvement strengthened the relationship with their significant others, reduced their anxiety about the decisions and improved the quality of the decision-making process. The patients still described the complementary and alternative medicine decision as their choice.

-Moving the patients towards a decision Roles: Persuaders, advisers, information gatherers, information reviewers, co-CAM consumers. This type of involvement refers to when the significant others attempted to directly influence the patients' decisions (e.g., push the patients to use a certain treatment). The significant others' influence ranged from gentle suggestions to direct recommendations and powerful persuasive tactics.

-Making the decision for the patients Roles: Directors, information gatherers, information reviewers, co-CAM consumers.