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Purpose: The purpose of this study was to determine the needs for raising health literacy and care capacity of caregivers of persons with AD related to incontinence and skin care.
Methods: Audiotaped focus groups or interviews were conducted with 48 informal caregivers. Responses were reviewed and coded for themes. Differences in needs based on sex and age were examined using chisquare analysis.
Results: Caregivers were 69% female, age=69(14) (mean(sd) years), and 48% minority (12.5% black, 8% >1 race, 31% Latino). 43% of caregivers were spouses, 31% children, 14% other relative, and 10% friends. The main themes of health literacy needs for incontinence and skin damage that emerged were: knowledge (deficits, advice received, sources, terminology), skills (possessed and needed), attitudes (communication barriers, worries, roles), and preferred learning methods. Examples of knowledge needs included reason incontinence occurs in AD, when to discuss topic with clinicians and terminology to use, skin damage descriptions, a guide to absorbent and skin care products, and management strategies. Skills needed were managing undressing/dressing and toileting, identifying skin damage, and step-by-step instructions for skin care. Attitudinal needs were portraying incontinence as a health problem, communicating without embarrassment, being prepared before the problems occur, not feeling alone, and sharing experiences with other caregivers. Most preferred printed vs. computer-based resources. More female (58%) than male caregivers (25%) received advice from others (p=.046). Younger caregivers (52%) had fewer skills than older ones (81%, p=.04).
Conclusions: Informal caregivers of individuals with AD have numerous health literacy needs related to incontinence and associated skin damage for which WOC nurses can assist.