PubMed · 8461829
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M Powell. 1993-03-06. Respite care.. https://doi.org/10.1136/bmj.306.6878.649-a
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BackgroundDementia with Lewy bodies (DLB) is a common degenerative dementia, but no studies investigate bereaved caregiver experiences.ObjectiveTo investigate the experiences of caregivers three months after the death of persons with DLB using a mixed-methods approach.MethodsDyads of individuals with moderate-advanced DLB and their primary informal caregivers were followed prospectively every 6 months until the person with DLB died. Caregivers completed a study visit with questionnaires and a semi-structured interview ∼3 months later. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of post-death measures with pre-death patient and caregiver variables. Thematic analysis was used to analyze the interviews.ResultsSeventy-three caregivers completed visits (mean 3.5 months post-death). Most of the caregivers were women (82.2%) and spouses (76.7%) or adult children (17.8%). Over 40% had scores indicating risk for clinical depression. Post-death caregiver experiences (depression, quality of life, grief, resilience) correlated with pre-death caregiver experiences. Post-death experiences did not associate with patient characteristics, disease-related symptoms, or healthcare services used in the last 6 months of life. Trajectories for caregiver measures from pre- to post-death visits varied widely. Interview themes included grief and sadness, anger, guilt and regret, relief, appreciation/gratitude, and adjusting to a new normal.ConclusionsThe finding that pre-death caregiving experiences have the strongest association with post-death experiences emphasizes the critical importance of accessible and evidence-based caregiver support before and after the death of a person with DLB. Research is needed to develop interventions for current and bereaved caregivers of individuals with DLB.Trial registration informationNCT04829656 (submitted 2021-03-22).
It is now 20 years since the Portage Home Teaching model of early intervention was introduced into the UK. In this paper, an overview of the Portage Model and rationale is provided, achievements over the past two decades are noted and related research and evaluation studies are reviewed. A number of areas for future development are also highlighted. These include: issues of quality control; the multi-cultural dimension of Portage; multi-agency collaboration; professional training needs of Portage personnel; and influencing central government policy relating to families who have a young child with special needs.
Child development teams (CDTs) have been in existence for a quarter of a century, yet little is known of how they function or what they do. This paper originated in a national seminar on how CDTs function and what they seek to achieve. It discusses the wide range of practice in CDTs across Britain and the apparent deficiencies in service provision for certain types of disability. Since each child has a unique set of needs, the composition of the team must be flexible and responsive to the changing circumstances of each child. The need for a philosophical shift to take account of changing parental expectations is stressed. There is a need for further research on a number of topics, including: the patterns of service provision and the differences between districts; the implementation of what is already known about standards of good practice; the possible role of a charter for disabled children and their families; the training needs of future CDT professionals.