Caregiving Research

Caregiving process and caregiver burden: conceptual models to guide research and practice.

Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, Walter SD, Wood E.  McMaster University, Department of Clinical Epidemiology and Biostatistics, Hamilton, Ontario, Canada.  BMC Pediatr. 2004 Jan 14;4:1.


BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents’ adaptations to their children’s disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered.


DISCUSSION: Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks.


SUMMARY: This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

Framing the public health of caregiving.

Talley RC, Crews JE. Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Rd, E-88, Atlanta, GA 30333, USA. rtalley@cdc.govAm J Public Health. 2007 Feb;97(2):224-8. Epub 2006 Dec 28


Caregiving has only recently been acknowledged by the nation as an important topic for millions of Americans. A psychological or sociological approach to care-giving services has been most often applied, with little attention to the population-based public health outcomes of caregivers. We conceptualize caregiving as an emerging public health issue involving complex and fluctuating roles. We contend that caregiving must be considered in the context of life span needs that vary according to the ages, developmental levels, mental health needs, and physical health demands of both caregivers and care recipients.


Taking care of the caregivers.

Mittelman M.  Silberstein Institute, Department of Psychiatry, New York University School of Medicine, New York, New York 10016, USA.  Curr Opin Psychiatry. 2005 Nov;18(6):633-9.

PURPOSE OF REVIEW: Comprehensive treatment for people with chronic illnesses or disabilities should include interventions for their family caregivers. In order for such interventions to achieve widespread implementation, they must first be proven efficacious in randomized controlled trials. The present review briefly summarizes the recent literature on the results of randomized controlled trials and pilot studies of psychosocial interventions for caregivers.


RECENT FINDINGS: Many of the recent studies of psychosocial interventions for caregivers have resulted in significant outcomes, regardless of the chronic illness of the relative or friend for whom care is being provided. While didactic interventions can provide knowledge, supportive interventions generally have more impact on caregiver and patient emotional and psychological well-being. Pilot studies suggest that new modes of intervention, such as telephone-based and web-based counseling and support, show promise and appear to be feasible. Psychosocial interventions for caregivers that are individualized and flexible, and provide long-term support appear to be the most efficacious.


SUMMARY: The literature on caregiver intervention studies, conducted in research centers, suggests that treating the caregiver may be an important component of a comprehensive treatment for chronic diseases and disabilities. Interventions with demonstrated efficacy should now be tested more widely in community settings in multiple geographic settings, ethnic groups, disease entities and caregiver types, to more fully evaluate their generalizability and effectiveness.