PubMed · 12703097
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Mary Gullatte. 2003. Negotiation.. https://pubmed.ncbi.nlm.nih.gov/12703097/
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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).
OBJECTIVE: To find the attitudes that primary care nurses in Albacete have towards family carers. DESIGN: Qualitative research using discussion groups. SETTING: Primary care in Albacete: 5 health centres, 2 rural and 3 urban. PARTICIPANTS: Nurses following a primary care home visit programme, of both sexes, differing experience and training, and coming from both rural and urban areas took part. Exclusion criterion: nurses in management and administrative posts at time of recruitment. They were recruited by primary care nurses in line with the profiles of participants required. METHOD: Information was collected through discussion in the groups, which was recorded and later transcribed for analysis. RESULTS AND CONCLUSIONS: Those taking part in the 2 discussion groups had the following characteristics: 3 men and 8 women. 5 of them were from rural health centres (HC) and 6 from urban HC; 3 had under 2 years experience in the Home Visit Programme (HVP) and 8 had over 5 years experience in it; 5 completed their nursing studies before 1990, and 6 afterwards. In the chats it was clear that the broad experience of PC nurses made them aware of the health situation and quality of life of informal carers, of the loneliness of these and the inter-personal conflicts that occur in families when a situation of dependency arises. Nurses had their educational function towards the carers assumed despite the limitations. The view that the responsibility for the care of the dependent person is the family's was predominant, and a concern for lack of resources and support was appreciated. Nurses had a view of the carer as a resource and barely perceived her as a patient.
BACKGROUND: The assessment of needs for cancer care is a critical step in providing high quality care and achieving cancer patients' and families' satisfaction. Instruments can be used to assess needs and guide cancer care planning. This study discusses the importance of the needs assessment, relationships between needs, satisfaction and quality of life; and reviews the assessment instruments of needs experienced by cancer patients and their families. METHODS: A systematic search was conducted in MEDLINE and CANCERLIT data bases. Instruments were evaluated based on their conceptual and measurement models as well as their demonstrated reliability and validity. The authors also sought information pertaining to instruments' burden of administration and responsiveness. Measures compromised by a lack of published psychometric description were not included. RESULTS: This search identified 17 patient needs assessment instruments and seven family needs assessment instruments. The development and psychometric proprieties of most of these instruments were well documented. However, data on their responsiveness and burden of administration were scarce. CONCLUSIONS: Each selected instrument meets some but not all of our criteria for validity, reliability, responsiveness and burden. It is questionable whether any instrument can be developed meeting all the requirements. However, there is still a need to continue researching and developing needs assessment instruments leading to effective intervention and improving quality of cancer care.