Dataset Information

Internal resources among informal caregivers: trajectories and associations with well-being.

ABSTRACT: PURPOSE:The experiences, skills, and internal resources that informal caregivers bring into their role may play a critical part in their mental health and well-being. This study examined how caregiver internal resources changed over a 10 year period, and how this was related to caregivers' well-being. METHODS:Data are from the Midlife in the United States (MIDUS) study, a national sample of adults, at two time points: 1995-1996 (T1) and 2004-2006 (T2). We identified subjects who reported being a caregiver at T2 and starting care after T1 (mean age = 56; 65% female). We examined internal resources: sense of control (personal mastery); primary and secondary control strategies (persistence in goal striving, positive reappraisal, and lowering expectations); and social support seeking, and psychological and subjective well-being. We evaluated how internal resources changed over time, and how these trajectories were associated with well-being at T2 using multivariable linear regressions. RESULTS:Most caregivers had stable levels of internal resources (between 4 and 13% showed an increase or decrease). Caregivers with increasing or high-stable levels of personal mastery had significantly better well-being scores on 6 out of 8 subscales compared with low-stable levels [effect sizes (ES) between 0.39 and 0.79]. Increasing persistence was associated with better personal growth and environmental mastery (ES = 0.96 and 0.91), and increasing and high-stable positive reappraisals were associated with better affect (ES = 0.63 and 0.48) compared with low-stable levels. Lowering aspirations and support seeking were not associated with well-being outcomes. CONCLUSIONS:Practices or interventions that support or improve internal resources could potentially improve caregiver well-being.

SUBMITTER: Litzelman K

PROVIDER: S-EPMC5682238 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

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Internal resources among informal caregivers: trajectories and associations with well-being.

Litzelman Kristin K Tesauro Gina G Ferrer Rebecca R

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20170720 12

<h4>Purpose</h4>The experiences, skills, and internal resources that informal caregivers bring into their role may play a critical part in their mental health and well-being. This study examined how caregiver internal resources changed over a 10 year period, and how this was related to caregivers' well-being.<h4>Methods</h4>Data are from the Midlife in the United States (MIDUS) study, a national sample of adults, at two time points: 1995-1996 (T1) and 2004-2006 (T2). We identified subjects who r ...[more]

PMID: 28730302

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Project description:IntroductionHealthcare professionals' shortage, low job satisfaction, high levels of burnout, and excessive staff turnover are some of the challenges health systems face worldwide. In Switzerland, healthcare stakeholders have called to address the health workforce crisis and have pointed out the scarcity of data on the conditions of healthcare professionals (HCPs). Hence, the Swiss Cohort of Healthcare Professionals and Informal Caregivers (SCOHPICA) was developed to study the career trajectories, well-being, intention to stay in or leave the position/profession/health sector, and their determinants, of HCPs and informal caregivers, respectively. This paper describes the protocol for the HCPs cohort of SCOHPICA and discusses its implications.MethodsSCOHPICA is a prospective open cohort using an explanatory sequential mixed methods design. All types of HCPs working directly with patients and practicing in Switzerland are eligible, irrespective of their healthcare setting and employment status. Baseline and annual follow-up electronic surveys will take place once a year, featuring both core questions and modules developed according to information needs. While outcome variables are HCPs' trajectories, well-being, intention to stay in or leave the position/profession/health sector, independent variables include organizational, psychosocial, and psychological determinants, as well as occupational (professional) and sociodemographic factors. The qualitative phase will be organized every two years, inviting participants who agreed to take part in this phase. The findings from quantitative analyses, along with the issues raised by healthcare stakeholders in the field, will guide the topics investigated in the qualitative phase.DiscussionUsing innovative methodologies, SCOHPICA will gather nationwide and longitudinal data on HCPs practicing in Switzerland. These data could have numerous implications: promoting the development of research related to HCPs' well-being and retention intentions; supporting the development of policies to improve working conditions and career prospects; contributing to the evolution of training curricula for future or current healthcare professionals; aiding in the development of health systems capable of delivering quality care; and finally, providing the general public and stakeholders with free and open access to the study results through an online dashboard.

Project description:BackgroundThere are approximately 6.5 million informal (unpaid) caregivers in the United Kingdom. Each caregiver plays a critical role in the society, supporting the health and well-being of those who are ill, disabled, or older and who need frequent support. Digital technologies are becoming a ubiquitous part of everyday life for many, but little is known about the real-world impact of technology for those in a caring role, including the abilities of technologies to address the mental and physical impacts of caregiving.ObjectiveThis study aims to understand the current and future technology use of caregivers, including digital technologies used to care for themselves and the person they look after.MethodsWe codeveloped a wide range of questions with caregivers and care professionals and delivered this survey both on the web and in paper format (eg, using social networks such as Twitter alongside in-person events). Questions were focused on providing care and looking after caregiver health and well-being. Analyses focused on both quantitative outcomes (frequency counts and Likert questions) and explored free text entries (thematic analysis).ResultsFrom 356 respondents, we identified that caregivers were receptive to, and largely positive about current and future use of technology both for their own care and their caring role (eg, checking in from distance). There were notable concerns, including the risk that technology could replace human contact. We identified several key areas for future work, including communication with health and social care professionals, and the potential for technology to help caregivers with their own health. We also identified several stakeholders (eg, care workers, pharmacy staff, and general practitioners) who could act as suitable points for technology signposting and support.ConclusionsCaregivers are a transient, often difficult to reach population, and this work has collated a large body of knowledge across a diverse group of individuals. Many caregivers, like the rest of society, are realizing the benefits of using everyday technology to help deliver care. It is clear that there is already a high level of dependency on technologies, where future expectations will grow. However, many barriers to digital technology use remain, including a lack of ongoing technology support. Preventive measures linked to technology that can help look after a caregiver's own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is a call for all stakeholders-academics, policy makers, and practitioners-to take note of these specific challenges, and to ensure that caregiver voices are both heard and fully integrated within the emerging digital health agenda.

Project description:BACKGROUND:Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. OBJECTIVE:This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD-informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. METHODS:The PwD-informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD-informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. RESULTS:There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. CONCLUSIONS:The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD-informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/13280.

Dataset Information

Internal resources among informal caregivers: trajectories and associations with well-being.

Publications

Internal resources among informal caregivers: trajectories and associations with well-being.

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