Family members’ experiences supporting adults with chronic illness: A national survey.

Abstract

Background Family and friends often help chronically ill adults manage their conditions. Information about specific ways supporters help with disease management, and their experiences with and concerns about helping are lacking. Objectives Describe key roles and concerns of family members who support the health management of adults with chronic illness, and compare experiences of health supporters living in and outside of support recipients’ homes. Methods Data were obtained from a national internet survey of 1722 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 discussed crucial concerns about medication side effects (47%) and trouble paying for medications (32%) with supporters. However, 41% of supporters reported insufficient 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. Conclusions 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.

Building Strong Primary Health Care to Tackle the Growing Burden of Non-Communicable Diseases in Nepal

“…Informal care, which provides better coordination and closer alliances for people with chronic conditions, is a significant yet undervalued resource. Family members, friends, neighbors and people with a similar disease could potentially provide effective support for people living with chronic conditions by supporting day-to-day self-management through emotional support, direct assistance with tasks, such as taking medications and maintaining healthy diet, tracking indicators of their health status, and facilitation of healthy behaviors as they are often first and most important point of call by people in search of health services [32,33]. It is evident that more than half of adults with diabetes or heart diseases regularly involve family members in day-to-day disease management tasks [34].…”

Family-Based Intervention to Manage Anxiety and Depression in Chronic Illness Patients

“…The family often creates a good social and emotional atmosphere in self-care, making it easier for patients to achieve the goals of a good patient's psychological state. Maximizing the influence of relationships between family members or people closest to patients is expected to have a positive effect on an ongoing basis so that the program run during treatment receives support in self-management and can provide the information and skills needed (Lee et al, 2018).…”

Engaging family supporters of adult patients with diabetes to improve clinical and patient-centered outcomes: study protocol for a randomized controlled trial

“…These supporters assist patients in engaging in activities directly related to successful diabetes management, including medication management and adherence, tracking home glucose and BP measurements, maintaining a healthful eating plan, and being physically active [ 6 – 8 ]. Family supporters also often help patients make key decisions about their diabetes management, such as how to address medication side effects [ 9 ]. Typically, 50–60% of family supporters are spouses, and most of the rest are family members who do not live with the patient (such as adult children) [ 6 , 10 , 11 ].…”

“…There are several other promising methods to increase the ability of family supporters to positively affect the health of patients with diabetes. In our national survey of 760 family supporters of patients with chronic disease [ 39 ], supporters reported feeling limited by a lack of patient-specific information, such as changes in medication regimens or test results, as well as a lack of health system-specific information, such as the roles of healthcare team members or available diabetes programs [ 9 ]. Supporters also face significant challenges when helping patients prepare for, and debrief after, clinical visits.…”

“…Finally, family supporter effectiveness could also be boosted through more structured and action-oriented between-visit discussions with patients. In our national family supporter survey, we found that supporters discuss health with their patient-partners almost every time they talk, but approximately 30% were unsure what questions to ask or what advice to give about diabetes [ 9 ]. Supporters can make the most of these discussions when they have patient-specific information and when they use evidence-based support techniques, such as positive and autonomy-supportive statements and collaborative action planning and coping [ 41 ].…”