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1.
Dementia (London) ; 20(4): 1250-1269, 2021 May.
Article in English | MEDLINE | ID: mdl-32460548

ABSTRACT

BACKGROUND: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. METHODS: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. FINDINGS: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. CONCLUSION: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.


Subject(s)
Caregivers , Dementia , Family , Humans , Nursing Homes , Palliative Care
3.
Med Care ; 43(12): 1242-9, 2005 Dec.
Article in English | MEDLINE | ID: mdl-16299436

ABSTRACT

OBJECTIVE: The objective of this study was to determine the extent to which various factors affect the interpretation of metaanalytic results by physicians. STUDY DESIGN: A sample of 120 physicians, selected from The Royal College of Physicians and Surgeons of Canada (RCPSC), was randomly assigned to 1 of 6 groups (n = 20) created from a combination of 3 summary measures and 2 levels of disease severity. The intervention consisted of a written scenario and 4 individual displays of metaanalyses (M-A), each followed by questions related to the interpretation of results of M-A. Two final questions examined statistical familiarity/proficiency with the summary measures used. DATA ANALYSIS: Analyses of variance examined main effects and interactions among 4 factors: summary measure, disease severity, effect size, and statistical consistency of the studies comprising the metaanalysis. Two outcomes were examined: interpretation of the treatment effect and confidence in the interpretation of the treatment effect. PRINCIPAL FINDINGS: Physicians were more likely to favor treatment when the results of the primary randomized, controlled trials (RCTs) were statistically homogeneous (P = 0.001) and when the overall effect size was large (P = 0.001). Also, physicians were more likely to be confident when the results were homogeneous (P = 0.001) and when effect size was large (P = 0.000). Interactions also revealed that the effect of statistical consistency of contributing to RCTs was greatest when data were presented as risk difference for treatment outcome (P = 0.026) and when effect size was small (P = 0.000). CONCLUSIONS: The interpretation of metaanalytic displays is influenced by the overall effect size of M-A, the statistical consistency of the contributing RCTs, and interactions of these factors with display factors.


Subject(s)
Meta-Analysis as Topic , Physicians/statistics & numerical data , Research Design/statistics & numerical data , Adult , Aged , Analysis of Variance , Data Interpretation, Statistical , Female , Humans , Male , Middle Aged , Randomized Controlled Trials as Topic , Severity of Illness Index , Socioeconomic Factors , Treatment Outcome
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