An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

Abstract

BackgroundCaregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time.MethodsOur data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research.ResultsThe framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes.ConclusionsBased on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness.

The Effects of Mindfulness-Based Stress Reduction Program on the Mental Health of Family Caregivers: A Randomized Controlled Trial

“…Various types of psychological and social interventions have been developed to reduce the depressive symptoms of caregivers and improve their general well-being, with an overall small-to-moderate effect size [5,6,7]. Among the psychosocial interventions to improve psychological health among caregivers with chronic stress, the 8-week mindfulness-based stress reduction (MBSR) program [8] has shown its positive effects on decreasing stress, anxiety and burnout of nurses and medical students [8,9], as well as enhancing their self-efficacy [8,10,11].…”

Studies of caregivers of older cancer patients needed

“…Assessments should determine the quantity and quality of care to be provided 35 and then determine what support the caregiver needs for their distress in order to facilitate coping so that they can continue to provide patient care. Based on the work of Goldzweig and colleagues, health care professionals caring for older patients should consider gender differences when caring for or planning interventions for male and female spouse caregivers.…”

Interventionsstudien zur Unterstützung häuslicher Pflege

“…Bei der Evaluation dieser Interventionen sind sowohl Endpunkte auf der Ebene der Pflegenden als auch der Pflegebedürftigen von Interesse. Ein aktueller Review zeigt, dass nur etwa die Hälfte der Studien auch die Auswirkungen der Interventionen auf die pflegebedürftigen Personen mit kognitiven Einschränkun-gen erfasst [37]. Diese wiederum weisen eine große Varianz sowohl hinsichtlich der erfassten Endpunkte als auch der in der jeweiligen Dimension verwendeten Instrumente auf, was einen direkten Vergleich der Wirksamkeit einzelner Interventionen erschwert [2,19,28].…”

“…Für den QoL-AD und den DEMQOL fehlen bislang deutsche Validierungen (für den QoL-AD liegt eine Übersetzung vor). Van Houtven et al [37] empfehlen Lebensqualität des Pflegebedürftigen als interventionsunabhängigen Endpunkt in Angehörigenstudien zu erfassen, um so die Vergleichbarkeit zwischen Interventionen zu verbessern.…”

“…Künftige Arbeiten sollten sich ebenso verstärkt mit der Entwicklung von Instrumenten für kognitiv schwer eingeschränkte Personen befassen. Des Weiteren sollten in der Evaluation auch Dimensionen wie die Qualität informeller Pflege [37] sowie die Erfassung von Ressourcen und globalem Funktionsniveau [22] mit noch zu entwickelnden Instrumenten berücksichtigt werden.…”