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Monitoring for change: the role of family and friends in helping older adults manage personal health information.

ABSTRACT: Objective:Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods:We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results:FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions:FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.

SUBMITTER: Taylor JO

PROVIDER: S-EPMC7646862 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Monitoring for change: the role of family and friends in helping older adults manage personal health information.

Taylor Jean O JO Hartzler Andrea L AL Osterhage Katie P KP Demiris George G Turner Anne M AM

Journal of the American Medical Informatics Association : JAMIA 20180801 8

<h4>Objective</h4>Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs.<h4>Methods</h4>We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interv ...[more]

PMID: 29726993

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Project description:BackgroundOlder adults face growing health care needs and could potentially benefit from personal health information management (PHIM) and PHIM technology. To ensure effective PHIM and to provide supportive tools, it is crucial to investigate the needs, challenges, processes, and tools used by this subpopulation. The literature on PHIM by older adults, however, remains scattered and has not provided a clear picture of what we know about the elements that play a role in older adults' PHIM.ObjectiveThe goal of our review was to provide a comprehensive overview of extant knowledge on PHIM by older adults, establish the status quo of research on this topic, and identify research gaps.MethodsWe carried out a scoping review of the literature from 1998 to 2020, which followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) framework. First, we executed a broad and structured search. We then carried out a qualitative analysis of papers pertinent to the topic taking into consideration the five elements of the patient work system as follows: (1) personal-level factors, (2) PHIM tasks, (3) tools used, (4) physical settings of PHIM activities, and (5) socio-organizational aspects.ResultsThe review included 22 studies. Consolidated empirical evidence was related to all elements of the patient work system. Multiple personal factors affected PHIM. Various types of personal health information were managed (clinical, patient-generated, and general) and tools were used (electronic, paper-based, and others). Older adults' PHIM was intertwined with their surroundings, and various individuals participated. The largest body of evidence concerned personal factors, while findings regarding the physical environment of PHIM were scarce. Most research has thus far examined older adults as a single group, and scant attention has been paid to age subgroups.ConclusionsOpportunities for further PHIM studies remain across all elements of the patient work system in terms of empirical, design science, or review work.

Project description:BackgroundFamily support for adults' diabetes care is associated with improved self-management and outcomes, but healthcare providers lack structured ways to engage those supporters.ObjectiveAssess the impact of a patient-supporter diabetes management intervention on supporters' engagement in patients' diabetes care, support techniques, and caregiving experience.DesignMultivariate regression models examined between-group differences in support-related measures observed as part of a larger trial randomizing participants to a dyadic intervention versus usual care.ParticipantsA total of 239 adults with type 2 diabetes and either A1c >8% or systolic blood pressure >160mmHg enrolled with a family supporter.InterventionHealth coaches provided training on positive support techniques and facilitated self-management information sharing and goal-setting.Main measuresPatient and supporter reports at baseline and 12 months of supporter roles in diabetes care and caregiving experience.ResultsAt 12 months, intervention-assigned patients had higher odds of reporting increased supporter involvement in remembering medical appointments (AOR 2.74, 95% CI 1.44, 5.21), performing home testing (AOR 2.40, 95% CI 1.29, 4.46), accessing online portals (AOR 2.34, 95% CI 1.29, 4.30), deciding when to contact healthcare providers (AOR 2.12, 95% CI 1.15, 3.91), and refilling medications (AOR 2.10, 95% CI 1.14, 3.89), but not with attending medical appointments or with healthy eating and exercise. Intervention-assigned patients reported increased supporter use of autonomy supportive communication (+0.27 points on a 7-point scale, p=0.02) and goal-setting techniques (+0.30 points on a 5-point scale, p=0.01). There were no differences at 12 months in change scores measuring supporter distress about patients' diabetes or caregiving burden. Intervention-assigned supporters had significantly larger increases in satisfaction with health system support for their role (+0.88 points on a 10-point scale, p=0.01).ConclusionsA dyadic patient-supporter intervention led to increased family supporter involvement in diabetes self-management and increased use of positive support techniques, without increasing caregiver stress.

Project description:BACKGROUND:Distress is an expected emotional response to a negative life event. Experiences common in later life may trigger distress such as bereavement or loss of physical mobility. Distress is considered to be distinct to anxiety and/or depression and is not diagnostically labelled as a mental health problem. Older adults will often manage their own distress. Previous literature has focused on how younger adults self-manage mental health problems, however little research has explored the self-management strategies used by older people. There is a need to clarify the role of primary care in the context of distressed older adults who may consult healthcare services. This study seeks to address these gaps through qualitative methods. METHODS:Keele University's ethical review panel approved this study. We recruited older adults who self-identified as distressed from community groups in North Staffordshire, England. Data were generated through semi-structured interviews and analysed thematically using constant comparison methods. A patient and public involvement and engagement group contributed to development of the research questions and methods, and offered their perspectives on the findings. RESULTS:After 18 interviews data saturation was achieved. Key themes were: experiences of distress, actions taken, help-seeking from healthcare services and perceptions of treatments offered in primary care. Various forms of loss contributed to participants' distress. Participants initiated their own self-management strategies which included: pursuing independent activities, seeking social support and attending community groups and church. Five participants reported having consulted a GP when distressed but described a lack of acceptable treatments offered. CONCLUSIONS:To support older adults who are distressed, healthcare professionals in primary care should consider exploring how patients currently manage their mood problems, provide a broad range of information about potential management options and consider sign-posting older adults to community resources.

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Monitoring for change: the role of family and friends in helping older adults manage personal health information.

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Monitoring for change: the role of family and friends in helping older adults manage personal health information.

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