Wk9 SOCW 8205 Discussion Medical Social Work in Chronic Illness Care and Management

Family Members’ Experiences Supporting Adults With Chronic Illness: A National Survey

Aaron A. Lee, PhD VA Center for Clinical Management Research, Ann

Arbor, Michigan

John D. Piette, PhD VA Center for Clinical Management Research, Ann Arbor, Michigan, University of Michigan School of Public Health, and Institute for Healthcare Policy

and Innovation, University of Michigan, Ann Arbor, MI

Michele Heisler, MD, MPA VA Center for Clinical Management Research, Ann Arbor, Michigan, University of Michigan Medical

School, and Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI

Mary R. Janevic, MPH, PhD University of Michigan School of Public Health

Kenneth M. Langa, MD, PhD, and Ann-Marie Rosland, MD, MS VA Center for Clinical Management Research, Ann Arbor, Michigan,

University of Michigan Medical School, and Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI

Introduction: Family and friends often help chronically ill adults manage their condi- tions. Information about specific ways supporters help with disease management, and their experiences with and concerns about helping are lacking. This study describes key roles and concerns of family members who support the health management of adults with chronic illness, and compares experiences of health supporters living in and outside of support recipients’ homes. Methods: Data were obtained from a national internet survey of 1,722 adults selected to represent the U.S. population. Detailed survey questions were completed by 703 respondents who reported providing regular disease-management help to at least one functionally-independent family member or friend with at least one of five chronic conditions (diabetes, heart failure, chronic lung disease, arthritis, depression). Results: Current supporters assisted 834 chronically ill adults: 257 receiving in-home support and 577 receiving out-of-home support. Current supporters spent 2.1 hours/week on average helping their support recipient with health care, and 21.2% attended their recipient’s health care appointments. Many recipients

Aaron A. Lee, PhD, VA Center for Clinical Manage- ment Research, Ann Arbor, Michigan; John D. Piette, PhD, VA Center for Clinical Management Research, Department of Health Behavior and Health Education, University of Michigan School of Public Health, and Institute for Health- care Policy and Innovation, University of Michigan, Ann Arbor, MI; Michele Heisler, MD, MPA, VA Center for Clinical Management Research, Department of Internal Medicine, University of Michigan Medical School, and Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI; Mary R. Janevic, MPH, PhD, Department of Health Behavior and Health Education, University of Michigan School of Public Health; Kenneth M. Langa, MD, PhD, and Ann-Marie Rosland, MD, MS, VA Center for Clinical Management Research, Department of Internal Medicine, University of Michigan Medical

School, and Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI.

This project was supported by the Michigan Institute for Clinical and Health Research (NIH UL1TR000433) and Grant Number P30DK092926 (MCDTR) from the Na- tional Institute of Diabetes and Digestive and Kidney Dis- eases. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Veterans Health Administration or the University of Mich- igan. John D. Piette is a VA Senior Research Career Scientist. We thank Wyndy Wiitala and Shannon Hunter for assistance with data management and analysis.

Correspondence concerning this article should be ad- dressed to Aaron A. Lee, PhD, VA Center for Clinical Management Research, 2215 Fuller Rd (#152), Ann Arbor, MI 48105. E-mail: [email protected]

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Families, Systems, & Health © 2017 American Psychological Association 2017, Vol. 35, No. 4, 463–473 1091-7527/17/$12.00 http://dx.doi.org/10.1037/fsh0000293

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discussed crucial concerns about medication side effects (47.0%) and trouble paying for medications (32.0%) with supporters. However, 41.0% of supporters reported insuffi- cient information about recipients’ health conditions and regimen to be helpful. In-home supporters reported arguing more often with support recipients, but also received more information from recipients’ health care providers than out-of-home supporters. Discussion: Family and friends have significant potential to influence patients’ chronic illness self-management. Programs to engage chronically ill patients’ families to support self-management could provide information and skills targeting needs identified by supporters.

Keywords: social support, chronic disease, self-management, family, informal care- givers

Supplemental materials: http://dx.doi.org/10.1037/fsh0000293.supp

Optimal management of chronic health con- ditions, such as diabetes, heart disease, and chronic lung disease, involves multifaceted daily self-management routines and often com- plex interactions with health care professionals (Bayliss et al., 2007; Clark, 2003). To manage their chronic health conditions, most patients could benefit from an array of professional ser- vices (e.g., self-management classes, health ed- ucation, professional consultation) and sus- tained formal support (e.g., support groups). However, these formal sources of support are often not available or accessible on a day-to-day basis, and may not be able to provide enough support over the long term to meet patient needs.

Many patients with chronic health conditions find that involving family and friends in their care provides a crucial source of day-to-day support. In previous studies, over 60% of adults with diabetes or heart failure report that their family members and friends are regularly in- volved in their chronic illness self-management (Connell, 1991; Rosland, Heisler, Choi, Sil- veira, & Piette, 2010; Sayers, Riegel, Paw- lowski, Coyne, & Samaha, 2008; Silliman, Bhatti, Khan, Dukes, & Sullivan, 1996). A na- tionally representative study found that 44% of U.S. adults reported helping a chronically ill adult family member or friend manage their health (Rosland et al., 2013). Importantly, fam- ily members and friends of chronically ill but functionally independent adults differ from caregivers of adults with severe functional lim- itations in the level and type of support they provide. Informal caregivers of adults with se- vere functional limitations often directly per- form health-related tasks for their family mem-

bers or friends. In contrast, informal supporters of chronically ill but functionally independent adults typically assist their support recipients in providing their own self-management (Rosland et al., 2010). For example, health supporters may assist with day-to-day decisions about medication and routine symptom management, help coordinate health care among multiple pro- viders, and facilitate healthy behavior changes such as improvements in diet or self-monitor- ing.

Social support from family and friends has great potential to help people with chronic ill- nesses better manage their conditions (DiMatteo, 2004; Gallant, 2003). Importantly, positive so- cial support from family and friends has been linked with increased patient self-efficacy, bet- ter self-management behavior, better patient- doctor communication, and better health out- comes (Dunbar, Clark, Quinn, Gary, & Kaslow, 2008; Luttik, Jaarsma, Moser, Sanderman, & van Veldhuisen, 2005; Rosland, Heisler, & Pi- ette, 2012; Strom & Egede, 2012; Wolff & Roter, 2011). Many adults are willing to help their chronically ill family and friends with health management (Rosland et al., 2013; Ro- sland, Piette, Choi, & Heisler, 2011; Wolff & Roter, 2008; Wolff, Spillman, Freedman, & Kasper, 2016). Programs to engage family members (defined here as any family member or friend providing unpaid support for health care) in chronic disease management programs, have potential to improve and sustain effective pa- tient self-management (Rosland & Piette, 2010). A better understanding of the current roles of family members in providing disease- management support is necessary to optimize the effectiveness of such interventions.

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To fully address the needs of older adults with chronic health conditions and their net- work of supporters, programs may need to ex- tend beyond the patient’s own household. Older adults in the United States frequently live apart from members of their social networks and U.S. adults frequently provide health support for in- dividuals with chronic health conditions who do not live with them (Piette, Rosland, Silveira, Kabeto, & Langa, 2010; Rosland et al., 2013; Zulman et al., 2011). Supporters living outside their support recipient’s home may be less aware of a patient’s symptoms and self- management behaviors and may find it more difficult to provide more intensive support for disease management compared with in-home supporters. In contrast, in-home supporters may encounter more conflict when trying to help their chronically ill support recipient with health care. However, no studies of which we are aware, have directly compared experiences communicating with patients and patients’ health care providers between health supporters living in and outside of patients’ homes.

The purpose of this descriptive study was to inform the development of interventions aiming to help family members and friends living in or outside of their support recipients’ homes be more effective in their roles as health and dis- ease management supporters. We surveyed adults who provide disease management sup- port for chronically ill adults about the extent of their involvement in the health care of support recipients and their experiences and concerns when communicating with support recipients and support recipients’ health care providers about chronic disease management. When com- paring in-home and out-of-home supporters, we hypothesized that out of home health supporters would spend less time directly helping with health care and experience more barriers in communicating with patients’ health care pro- viders.

Method

We analyzed data from a subset of respon- dents to a nationally representative Internet sur- vey of 1,722 Caucasian, African American, and Latino U.S. adults age 18 years old and older (53% response rate; Rosland et al., 2013). Par- ticipants were recruited from Knowledge Net- works, a research firm that maintains a large,

representative survey panel of American adults. Panelist are randomly selected from U.S. Postal Service Delivery Sequence File (Dennis, 2010). Knowledge Networks provides panelists with a computer and Internet access to help ensure all invited individuals have an equal probability of panel membership. The Knowledge Networks panel closely reflects the general population of the United States in terms of race, ethnicity, age, sex, education, and income (Chang & Krosnick, 2009; Dennis, 2010). For the original survey, Latinos and African Americans were oversampled so that each group would represent 25% of respondents.

Respondents were prompted to list names of contacts who corresponded to each of 25 spe- cific family relations (e.g., spouse, father, sister, mother-in-law) and up to five additional rela- tives or friends. Then, respondents were asked to identify those individuals among these listed contacts who had been “diagnosed by a doctor or health care provider” with one or more of the following common chronic illnesses: diabetes (or “high sugar”), heart disease (“such as heart attack or heart valve problem”), chronic lung disease (“such as asthma, emphysema, or COPD”), arthritis, or depression. From this group, respondents indicated the subset of peo- ple with whom they were in contact at least once a month, and who did not need assistance with basic activities of daily living (BADLs) including eating, dressing, toileting. Most sur- vey respondents (n � 1,108, 64.3%) reported having contact with one or more chronically ill but BADL-independent adults meeting these criteria.

The current study focuses on those respon- dents who reported that they provided current health support to one or more of their family or friends as identified above. “Health supporters” were defined as respondents who reported reg- ularly helping one of their listed chronically ill contacts with health-related tasks according to at least one of five criteria: (a) the respondent identified themselves as “the main person who helps the contact with health-related tasks like managing medicines, cooking healthy food, and keeping track of doctor’s appointments,” (b) the respondent helped their contact with health re- lated tasks “like filling prescriptions and man- aging medicines, arranging medical appoint- ments, filling out medical forms, or making decisions about health care” at least one day in

465SUPPORTING ADULTS WITH CHRONIC ILLNESS

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the last three months, (c) the respondent regu- larly discussed the contact’s health with the contact, (d) the respondent regularly went with their contact into the exam room for medical appointments, or (e) the respondent talked to their contact’s health care provider once per year or more. Using these inclusion criteria, 703 (63.6%) respondents were designated as current health supporters.

Current health supporters rated each current support recipient on a Likert-type scale from 1 (not at all close) to 10 (extremely close). If a supporter had more than one in-home or out-of- home support recipient, the supporter was asked for detailed information on their health support for the recipient with the highest closeness rat- ing in each category. Therefore, a respondent may have given information on one in-home recipient only, one out-of-home recipient only, or both one in-home and one out-of-home re- cipient. To make data collection feasible we were only able to ask detailed information about a maximum of two support recipients most likely to be receiving the most intensive help. Survey items assessed supporter and support recipient sociodemographic characteristics as well as supporter time spent assisting with re- cipients’ health care (i.e., filling prescriptions and managing medicines, arranging medical ap- pointments, filling out medical forms, or mak- ing decisions about health care). Respondents who reported discussing health issues with their support recipient were surveyed about their ex- periences with these conversations (see Table S1 in the online supplemental materials). Sim- ilarly, respondents who reported that they ac- companied their support recipient into the health care exam room or communicated with their support recipient’s health care providers via telephone one or more times/year were asked about their experiences communicating with their support recipients’ health care pro- vider (see Table S2 in the online supplemental materials). All study methods were approved by a local human subjects research Institutional Review Board.

Data Analysis

Pearson’s chi-square test and one-way anal- ysis of variance (ANOVA) were used to com- pare supporter characteristics across location (i.e., in-home, out-of-home, or both in and out-

of-home). Support recipients were clustered within respondents (i.e., supporters) for analy- ses comparing in-home and out-of-home sup- port recipients. Chi-square and t tests were used to compare characteristics of in-home and out- of-home supporter-recipient relationships at the level of support recipient. Significant omnibus chi-square tests comparing proportions of recip- ients’ relationship to their supporter (e.g., parent or sibling) were followed by Bonferroni cor- rected z tests comparing column proportions (i.e., in-home supporters vs. out-of-home sup- porters). Missing data were treated using pair- wise exclusion. Analyses were performed using Stata version 14.0 (StataCorp, 2015). All tests of statistical significance were two-tailed with alpha equal to .05.

Results

Supporter Characteristics

The final sample included 703 respondents who provided health support for 834 adults with one or more chronic diseases (Table 1). Of these supporters, 17.9% provided only in-home sup- port, 63.4% provided only out-of-home support, and 18.6% reported providing both in-home and out-of-home support. Supporters had an average age of 50 years. Most supporters were female, White, and had at least some college education. Supporters providing only out-of-home support were significantly more often female compared with supporters providing only in-home support (p � .001).

Support Recipient Characteristics

Out-of-home support recipients were signifi- cantly more likely to be a parent, sibling, or other nonspouse relative/friend of their sup- porter, and over 50 years of age, compared with in-home support recipients (Table 2). Among out-of-home support recipients, nearly half lived within 20 miles of the disease manage- ment supporter; however, more than one third lived more than 100 miles away. Supporters were most commonly helping family and friends with arthritis followed by diabetes, de- pression, heart disease, and lung disease.

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Specific Ways Supporters Assisted in Disease Management

A significantly greater proportion of in-home support recipients received assistance with health-related tasks, such as managing prescrip-

tions and medical appointments, compared with out-of-home support recipients, during the pre- vious three months (see Table 3). In-home sup- port recipients were given assistance with health-related tasks on significantly more days per month than out-of-home support recipients.

Table 1 Chronic Disease Management Supporter Characteristics

Supporter characteristic

Total In-home

support only Out-of-home support only

In-home and out-of-home support

pa(N � 703) (n � 126) (n � 446) (n � 131)

Female 59.3% 42.9%b 62.8%c 63.4% �.001 Age in years (SD) 50.00 (16.00) 49.02 (16.94) 49.62 (15.31) 52.23 (17.24) .196 Race/ethnicity .361

White 57.6% 57.4% 56.5% 61.8% African-American 21.9% 22.2% 23.8% 15.3% Latino 20.5% 20.6% 19.7% 22.9%

Education .038 �HS degree 11.5% 15.1% 10.5% 11.5% HS degree 27.5% 35.7% 24.9% 28.2% Some college 30.2% 25.4% 30.0% 35.1% �Bachelors degree

30.9% 23.8% 34.5% 25.2%

Note. HS � high school. a Significance for omnibus �2 and F tests comparing characteristics of in-home, out-of-home, and both in-home and out-of-home supporters. Different superscripts indicate significant differences column proportions.

Table 2 Chronic Disease Management Support Recipient Characteristics

Support recipient characteristic

Total In-home recipient

Out-of-home recipient

pa(N � 834) (n � 257) (n � 577)

Age � 50 years 73.4% 65.5% 76.9% �.001 Relation to supporter �.001

Parent 28.7% 15.2% 34.7% �.001b

Sibling 23.1% 4.7% 31.4% �.001b

Spouse/partner 21.2% 66.2% 1.2% �.001b

Other relative/friend 20.3% 8.9% 25.3% �.001b

Adult child 6.7% 5.1% 7.5% .203b

Distance from supporter NA NA n � 570 NA �9 miles 36.0% 10–20 miles 13.0% 21–100 miles 15.3% �100 miles 35.8%

Chronic illness Arthritis 40.7% 44.4% 39.0% .130 Diabetes 34.5% 30.4% 36.4% .089 Depression 26.3% 30.0% 24.6% .092 Heart disease 20.3% 17.1% 21.7% .135 Lung disease 13.7% 16.7% 12.3% .088

a Significance of the chi-square tests comparing in-home and out-of-home supporters unless otherwise noted. b Significance of the post-hoc z tests comparing column proportions for in-home and out-of-home supporters.

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However, average hours spent helping with health care per day did not differ significantly between in-home and out-of-home support re- cipients. In-home support recipients were four times more likely to be accompanied into the exam room during medical appointments by their supporters than out-of-home support recip- ients. Similarly, the supporters of in-home sup- port recipients were more than twice as likely to speak with the support recipient’s health care provider on the telephone than supporters of out-of-home support recipients.

Support Recipient Health Concerns Shared With Supporters

When supporters talk with support recipients about their health, most support recipients re- port that the topics of those conversations in- clude bothersome symptoms and the desire to do more to stay healthy on a regular basis (see Table 4). Almost half of support recipients reg-

ularly communicate concerns about medication side effects to their supporters. Approximately one-third of recipients regularly discuss confu- sion about their health care providers’ instruc- tions and trouble paying for medications or health care. In-home support recipients more frequently express to their supporter a desire to do more to stay healthy, concerns about medi- cation side effects, and feeling as though they are not getting support with health problems, compared with out-of-home support recipients.

Supporter Concerns When Discussing Health With Support Recipients

When talking with their support recipients about health, supporters frequently report feel- ing that recipients downplay their health prob- lems (see Table 5). Over a third of health sup- porters report being confused about what is happening with their support recipients’ health, and feeling that they do not know enough about

Table 3 Extent of Supporters’ Involvement With Support Recipients’ Care

Supporter involvement Total In-home recipient

Out-of-home recipient

pa(N � 834) (n � 257) (n � 577)

Time helping with health care Any days/last 3 monthsb 32.0% 56.7% 20.9% �.001 Average days/monthc (SD) 1.31 (.16) 3.48 (.46) .35 (.06) �.001 Average hours/dayc (SD) 2.10 (.16) 2.22 (.27) 1.94 (.14) .383

Accompany into exam roomd 21.2% 45.0% 11.2% �.001 Speak with provider via telephoned 21.8% 37.6% 15.0% �.001

Note. IADLs � independent activities of daily living. a Significance of the chi-square or t test comparing in-home and out-of-home supporter recipients. b Any days vs. no days during the last 3 months. c Item only asked of respondents who indicated that they spent any days helping their recipients during the last 3 months. d Ever vs. never.

Table 4 Support Recipient Health Concerns Shared With Supporters

When you talk about health, your support recipient mentions

Total In-home recipient Out-of-home recipient pb(N � 811)a (n � 247) (n � 564)

Pain or bothersome symptoms 74.8% 78.1% 73.3% .139 Feeling the need to do more to stay healthy 56.3% 64.8% 52.6% .001 Concerns about medication side effects 47.2% 53.9% 44.3% .010 Trouble paying for medications/health care 31.8% 31.7% 31.9% .967 Not getting support with health problems 31.1% 37.3% 28.3% .015 Confusion about health care provider instructions 29.0% 34.6% 26.6% .022

Note. All responses dichotomized as “some of the time, most of the time, or every time” vs. “rarely or never.” a Items only asked of supporters who reported having discussed health issues with their health support recipi- ent. b Significance of chi-square tests comparing in-home and out-of-home support recipients.

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their recipients’ health problems to be helpful. A smaller, but considerable, proportion of sup- porters report feeling that support recipients of- ten exaggerate their health problems. Support- ers report feeling that in-home recipients are less frequently receptive to their advice than out-of-home support recipients. Further, sup- porters indicate that they more frequently feel overwhelmed and are more likely to argue about health management when discussing health with support recipients living in the home com- pared with those living out-of-home.

Supporters’ Experiences Talking With Recipients’ Health Care Providers

A large proportion of supporters accompany their support recipient into the exam room dur- ing medical appointments or communicate with their support recipient’s health care providers

via telephone at least once per year. Overall, these supporters reported more positive than negative interactions with health care providers (see Table 6). Specifically, most supporters in- dicated that health care providers answer their questions on at least some occasions and ap- proximately one-half of supporters report that health care providers involve them in decisions or suggest ways that they can help with the support recipient’s health care at least some of time. However, a large minority of supporters report experiencing occasions where health care providers were not willing to share patient in- formation or did not listen to their input. Out- of-home supporters report a significantly lower frequency of both having their questions an- swered by recipients’ health care providers and of being involved in health care decisions com- pared with in-home supporters.

Table 5 Supporter Experiences With Health-Related Conversations With Support Recipients

When we [support recipient and I] talk about my support recipients’ health

Total In-home recipient

Out-of-home recipient

pb(N � 811)a (n � 247) (n � 564)

They minimize their health problems 60.5% 63.1% 59.4% .302 I feel like I don’t know enough about their health condition to be helpful 40.5% 40.7% 40.4% .935 They don’t seem to want my advice 40.1% 45.3% 37.8% .040 I get confused about what’s really going on with their health 37.5% 38.0% 37.3% .863 I feel overwhelmed 25.3% 30.8% 22.8% .010 They seem to exaggerate their health problems 20.4% 23.1% 19.3% .205 We end up arguing about what they should do for their health 18.3% 30.8% 12.8% �.001 I worry that I’m getting too involved 12.6% 12.7% 12.5% .949

Note. Responses dichotomized as “some of the time, most of the time, or every time” vs. “rarely or never.” a Items only asked of supporters who reported having discussed health issues with their health support recipi- ent. b Significance of chi-square tests comparing in-home and out-of-home support recipients.

Table 6 Supporter Experiences Talking With Support Recipients’ Health Care Providers

When you talk with your support recipient’s health care provider he/she

Total In-home recipient

Out-of-home recipient

pb(N � 321)a (n � 167) (n � 154)

Answered your questions 69.2% 76.1% 61.7% .006 Involved you in decisions 48.6% 55.2% 41.5% .014 Suggested ways you could help 48.1% 50.6% 45.5% .366 Was not willing to share information about your recipients’ health care 29.0% 26.7% 31.6% .314 Did not listen to you 18.8% 16.8% 20.9% .211

Note. Responses dichotomized as “some of the time,” “most of the time,” or “every time” vs. “rarely” or “never.” a Items only asked of supporters who reported accompanying their support recipient into the health care exam room or communicating with their support recipient’s health care providers via telephone. b Significance of chi-square tests comparing in-home and out-of-home support recipients.

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Discussion

This national survey highlights key roles and experiences of family members and friends who support the health management of adults with chronic illness. Family members and friends of adults with chronic health conditions frequently help their support recipients with health care and routinely discuss health issues that can sub- stantively affect support recipients’ health out- comes. Notably, 30% to 40% of respondents reported challenges to providing support to their support recipients including: lack of knowledge, confusion about information provided by health care providers, and disagreements with their support recipient about strategies and practices for optimal health management. Similar propor- tions of health supporters indicated that their support recipients’ health care providers did not share information or involve them in treatment decisions. Nearly 20% of supporters indicated that their support recipient’s health care pro- vider did not listen to their input. Consistent with our hypothesis, out of home supporters spent significantly less time directly helping with health care and were significantly less likely to interact or communicate with their support recipients’ health care providers via telephone compared with in-home supporters. Yet, a considerable proportion of out-of-home supporters reported that they assisted with health care, accompanied patients to medical appointments, and communicated with health care providers. The present findings build on research documenting the experiences of infor- mal caregivers experiences providing care to patients with severe functional impairment (Langa et al., 2001; Langa, Valenstein, Fen- drick, Kabeto, & Vijan, 2004; Langa et al., 2002; Wolff et al., 2016).

Findings from this study highlight the signif- icant potential for family members and friends to influence the health and health management of adults with chronic illness. Both in-home and out-of-home supporters spend an average of approximately two hours helping with health care on days that they provide help. Time spent providing support to family and friends with chronic health conditions might be leveraged to improve disease self-management and health outcomes. These supporters are frequently privy to patient concerns about their health conditions and health care that could directly impact pa-

tients’ health and safety, such as bothersome symptoms, medication side effects, and confu- sion about health care provider instructions. Fu- ture research could examine whether supporters can use strategies to help recipients solve prob- lems in ways that could improve their health and encourage recipients to effectively commu- nicate these concerns to their providers.

Many supporters reported difficulties com- municating with support recipients about their health including arguments, support recipients discounting advice, or concerns about support recipients’ minimization or exaggeration their health problems. This finding mirrors results from other studies of adults with chronic disease in which a significant minority report that their family pester or criticize them about their self- management, or downplay their concerns (May- berry & Osborn, 2014; Mayberry, Rothman, & Osborn, 2014; Rosland et al., 2010). These types of negative communication are associated with worse self-management of chronic condi- tions (Mayberry, Egede, Wagner, & Osborn, 2015; Rosland & Piette, 2010; Tang, Brown, Funnell, & Anderson, 2008). Supporters expe- riencing negative conversations with support recipients might benefit from training in posi- tive communication techniques. When used by health care providers, autonomy supportive communication techniques increase support re- cipients’ motivation and self-directed problem- solving to improve health behaviors (Ng et al., 2012; Patrick & Williams, 2012). Autonomy supportive communication skills include empa- thy, support for patient agency, and collabora- tive goal setting (Ryan, Patrick, Deci, & Wil- liams, 2008). Future studies could test whether teaching informal supporters autonomy sup- portive communication skills helps functionally independent adults manage chronic disease (Dunbar et al., 2008).

Out-of-home supporters reported less dis- agreement and resistance, and feeling less over- whelmed when communicating with support re- cipients about health; however, these supporters were less likely to hear about key support re- cipient health concerns. Additionally, out-of- home supporters interacted less frequently with support recipients’ health care providers, had more difficulty having their questions answered, and felt less involved in decisions compared with in-home supporters. While all health sup- porters may benefit from training in effective

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approaches (e.g., use of open-ended and prob- ing questions) to ask support recipients about their chronic disease self-management, health related concerns, and plans made with health care providers, this type of communication training may prove to be particularly useful for supporters living outside their support recipi- ents’ home who reported more difficulties with communication.

Overall, health supporters reported frequent and positive communication with health care providers. Future interventions could draw on this existing contact between supporters and health care providers to attempt to improve pa- tient-provider communication. For example, providing health supporters with enhanced mechanisms for directly relaying information to and from patients’ providers may help ensure that important patient issues are addressed in a timely manner. Additional research is needed to better understand supporters’ perspectives and preferences for communicating with patients’ health care providers. For example, supporters could be provided with guidance in helping support recipients prepare questions or agendas for doctors’ visits, or in how supporters them- selves can interact effectively with health care providers (Wolff et al., 2014). Sharing access to patients’ personal health records with health supporters may be a promising method to en- hance supporter-provider communication. Ex- isting research indicates that shared patient- supporter access to patients’ personal health records is an underused, but acceptable, and effective method for improving patient-provider communication and patients’ confidence in their care (Sarkar & Bates, 2014; Wolff et al., 2017; Zulman et al., 2011).

The findings from our study should be inter- preted in the context of several methodological limitations. First, this study used health support- ers’ self-report of support recipient health con- ditions rather than health care provider diagno- ses. Second, this study relied on supporters’ recall of discussions with support recipients and recipients’ health care providers. Third, in- home supporters, by nature, have more exten- sive contact with their support recipient and may therefore be more aware of support recip- ients’ health diagnoses and functional limita- tions, thus affecting the recipients’ likelihood of being included or excluded from this study. Fourth, this study used survey items with set

response options. Subsequent research studies could use open-ended questions to elicit more detailed information about key health supporter experiences and preferences identified in this study. Fifth, the study sample included larger proportions of African American and Latino adults compared with the general population of the United States. Therefore, findings reported may overrepresent the experiences of health supporters from these minority groups. Sixth, while Knowledge Networks employs several strategies to ensure the participation of panelists who do not have access to computers or the Internet (Chang & Krosnick, 2009; Dennis, 2010), the respondents to this Web-based sur- vey may have had higher Internet literacy than the average population. Seventh, we collected detailed data on a maximum of two potential support recipients most likely to be receiving support. Consequently, this study does not rep- resent respondent experiences helping more than two support recipients. Finally, while we asked about several of the most common chronic health conditions among adults, respon- dents may have provided support to adults with chronic health conditions not included in this study.

Conclusions

Family members and friends of adults with chronic illnesses spend a substantial amount of time providing health-related support, and en- gage in critical discussions about health with support recipients. These supporters express difficulties communicating with their support recipients as well as a need for more informa- tion about their support recipients’ health con- ditions and current health care. Future interven- tions could test whether programs targeting supporters’ needs increase their effectiveness in supporting patients.

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Received February 7, 2017 Revision received May 17, 2017

Accepted July 10, 2017 �

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