RESUMEN
PURPOSE: The purpose of this study was to examine barriers to communicating with healthcare professionals and health literacy about incontinence among different types of informal caregivers of individuals with Alzheimer disease (AD). DESIGN: Descriptive secondary analysis. SUBJECTS AND SETTING: The sample included 48 family/friend adult caregivers of individuals who had AD. Seventy-five percent were female; their mean age was 64 ± 14 years (mean ± SD). Caregivers were spouses (44%), daughters (31%), or extended family members/friends (25%). Nearly half (48%) of caregivers had a racially or ethnically diverse background; 58% of their care recipients had incontinence. METHODS: Data were collected via focus groups, interviews, and written surveys. Verbal responses were audiotaped, transcribed, and analyzed for themes by caregiver type using content analysis. RESULTS: Caregivers of persons with AD described role-related barriers to improving health literacy about incontinence and its management. Main themes of barriers emerged for each type of role that were emotive in nature for daughters, experiential for both spouse caregivers, system related for husbands, and relational (being perceived as an outsider) for extended family/friends. CONCLUSIONS: Nurse continence specialists have an important role in raising health literacy about incontinence and its management for informal caregivers of individual with AD. Results inform the development of interventions that are tailored to the type of caregiver as recommended by national health literacy initiatives with the aim of improving outcomes such as incontinence of care recipients.
Asunto(s)
Cuidadores/normas , Barreras de Comunicación , Demencia/complicaciones , Personal de Salud/normas , Incontinencia Urinaria/terapia , Adulto , Anciano , Anciano de 80 o más Años , Enfermedad de Alzheimer/complicaciones , Enfermedad de Alzheimer/terapia , Cuidadores/psicología , Comunicación , Demencia/terapia , Femenino , Grupos Focales , Educación en Salud/métodos , Educación en Salud/normas , Alfabetización en Salud/normas , Humanos , Masculino , Persona de Mediana Edad , Atención al Paciente/psicologíaRESUMEN
Communication between healthcare providers and patients/family caregivers about incontinence and associated skin damage is wanting, and information about healthcare providers perspectives on improving this communication is limited. A descriptive study was conducted using semi-structured, tape-recorded interviews with 11 healthcare providers with clinical expertise in geriatrics and dementia working in a large integrated healthcare system. The survey was developed by the authors based on a review of the relevant literature with guidance from a three-member Advisory Committee and consisted of nine open-ended questions related to communication with patients and families about incontinence and skin damage. Specifically, information was obtained about providers' perspectives on the timing of inquiring about these problems, how best to tailor language and approach the topic, barriers and facilitators to discussion of incontinence, and recommendations for educational and supportive resources. Responses were analyzed using a content analysis approach. Using a purposeful sampling technique, 11 experienced healthcare professionals agreed to participate in the study. Main themes observed included: 1) incontinence issues are not routinely or voluntarily addressed by all providers, 2) caregivers are receptive to discussion if the topic is broached by patient/caregiver, and 3) main barriers to providing information include limited clinician time and patient/family caregiver embarrassment. Participant clinicians expressed interest in readily available, single-topic, printed patient/caregiver-focused educational materials to enhance patient-provider communication and serve as a resource. These materials were subsequently developed. Further research is warranted to test the effectiveness of the recommendations and the materials developed as a result of the study.
Asunto(s)
Cuidadores , Demencia/enfermería , Familia , Personal de Salud , Enfermedades de la Piel/complicaciones , Incontinencia Urinaria/fisiopatología , Adulto , Humanos , Persona de Mediana Edad , Incontinencia Urinaria/complicacionesRESUMEN
PURPOSE: The purpose of this study was to describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with Alzheimer disease (AD) and develop supportive and educational materials that address these needs. DESIGN: Descriptive. SUBJECTS AND SETTINGS: The sample included 48 family/friend adult caregivers of individuals who had advanced dementia. Caregivers were spouses (44%), daughters (31%), or extended family members/friends (25%) recruited from community-based agencies, with a mean age of 64 ± 14 years (mean ± SD), and 75% were female. Nearly half (48%) had a racially or ethnically diverse background. METHODS: Focus groups, interviews, and written surveys were conducted to assess health literacy needs of AD caregivers related to incontinence and skin care; verbal responses were audiotaped, transcribed, and summarized. To address these needs, a set of educational and supportive materials was developed, whose content was directed by caregiver responses and supported by a literature review of current evidence and consultation with clinical and research experts. Study procedures were guided by an advisory committee of AD caregivers. RESULTS: Caregivers had numerous health literacy needs related to incontinence and skin care; areas of need were categorized into knowledge, skills, and attitudes. Caregivers expressed a need to validate the health literacy they possessed. Fourteen educational and supportive documents were developed to address these needs. CONCLUSION: Materials developed in this study are suitable to incorporate into interventions that support caregivers of persons with AD. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with health care providers, and improve health outcomes of care recipients.