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Current and potential support for chronic disease management in the United States: the perspective of family and friends of chronically ill adults.

ABSTRACT: Family members and friends can be an important source of self-management support for older adults with chronic diseases. We characterized the U.S. population of potential and current "disease management supporters" for people with chronic illness who are independent in activities of daily living, the help that supporters could provide, and barriers to increasing support. We used a nationally representative survey of U.S. adults (N = 1,722). Forty-four percent of respondents (representing 100 million US adults) help a family member or friend with chronic disease management; another 9% (representing 21 million U.S. adults) are willing to start. Most are willing to assist with key tasks such as medication use and communicating with providers, although they feel constrained by privacy concerns and a lack of patient health information. The majority of U.S. adults already helps, or would be willing to help, one of their family members or friends with chronic illness care. Supporters' specific concerns could be addressed through innovative programs.

SUBMITTER: Rosland AM

PROVIDER: S-EPMC3762580 | biostudies-other | 2013 Jun

REPOSITORIES: biostudies-other

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Current and potential support for chronic disease management in the United States: the perspective of family and friends of chronically ill adults.

Rosland Ann-Marie AM Heisler Michele M Janevic Mary R MR Connell Cathleen M CM Langa Kenneth M KM Kerr Eve A EA Piette John D JD

Families, systems & health : the journal of collaborative family healthcare 20130601 2

Family members and friends can be an important source of self-management support for older adults with chronic diseases. We characterized the U.S. population of potential and current "disease management supporters" for people with chronic illness who are independent in activities of daily living, the help that supporters could provide, and barriers to increasing support. We used a nationally representative survey of U.S. adults (N = 1,722). Forty-four percent of respondents (representing 100 mil ...[more]

PMID: 23795624

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Project description:BackgroundOlder adults are encouraged to use Medical Visit Companions (MVCs) for routine medical encounters; however, many vulnerable older adults attend alone or fail to attend. In the absence of available family or friends, community volunteers could potentially fill this gap. We aimed to understand the role and acceptability of volunteer MVCs accompanying older adults to medical visits and explore potential barriers and facilitators of increasing MVC availability and expanding roles beyond transportation.MethodsTwo moderators conducted 4 focus groups with 29 volunteers grouped by whether they provided (n = 15) or received (n = 14) rides to medical visits. All were members of Partners In Care (PIC), a community organization in Maryland, United States which offers a range of programs and services that support the independence of older adults including the provision of volunteer MVCs. Participants were asked to discuss why they were involved with PIC, and to describe their experiences with providing or receiving companionship during medical visits. Inductive thematic analysis was used to explore the views and experiences of participants, particularly around the roles played by MVCs and the feasibility of expanding these roles.ResultsAll participants reported benefits from their role whether that was giving or receiving rides. Many accompanied participants reported missing medical appointments prior to joining PIC and being able to avail of the services of a MVC. Volunteer roles varied and ranged from transportation only, help with care coordination and in some cases accompanying the person into their medical visit. A subgroup of volunteers expressed a willingness to take on additional roles during the physician visit following additional training and isolated older adults welcomed the prospect of their assistance.ConclusionOur qualitative data indicate that non-family, volunteer MVCs are willing and able to assist older people going to a medical visit. With appropriate training and support, volunteer companions could do much to improve the healthcare experience for those who otherwise would attend alone or would not attend medical visits.

Project description:BackgroundIn the United States, tobacco use among prisoners is nearly three times that of the general population. While many American prisons and jails are now tobacco-free, nearly all inmates return to smoking as soon as they are released back into the community.MethodsTo better understand the role that personal relationships may play in enabling return to smoking, we enrolled former-smokers who were inmates in a tobacco-free prison. Baseline assessments were conducted six weeks prior to inmates' scheduled release and included measures of smoking prior to incarceration, motivation, confidence and plans for remaining quit after release. We also assessed global social support (ISEL) and a measure of social support specific to quitting smoking (SSQ). Smoking status was assessed three weeks after prison release and included 7-day point-prevalence abstinence validated by urine cotinine, days to first cigarette and smoking rate.ResultsA diverse sample comprised of 35% women, 20% Hispanic, and 29% racial minorities (average age 35.5 years) provided baseline data (n = 247). Over 90% of participants provided follow up data at 3-weeks post-release. Prior to incarceration participants had smoked an average of 21.5 (SD = 11.7) cigarettes per day. Only 29.2% had definite plans to remain smoking-abstinent after release. Approximately half of all participants reported that "most" or "all" of their family (42.2%) and friends (68%) smoked, and 58.8% reported their spouse or romantic partner smoked.SSQ scores were not significantly predictive of smoking outcomes at three weeks, however, social support from family and friends were each significantly and positively correlated with motivation, confidence, and plans for remaining abstinent (all p values <0.05). These smoking-related attitudinal variables were significantly predictive of smoking outcomes (all p values <0.01). General social support (ISEL) was not associated with smoking-related attitudinal variables or smoking outcomes.ConclusionsInmates of smoke-free prisons have a head-start on being smoke-free for life. They have been abstinent well past the duration of nicotine withdrawal and have great financial incentive not to begin smoking again. However, this advantage may be offset by a lack of non-smoking role models among their family and friends, and perceived lack of support for remaining smoke-free.Trial registrationClinicalTrials.gov Identifier: NCT01684995.

Dataset Information

Current and potential support for chronic disease management in the United States: the perspective of family and friends of chronically ill adults.

Publications

Current and potential support for chronic disease management in the United States: the perspective of family and friends of chronically ill adults.

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