Barriers to Communication With a Healthcare Provider and Health Literacy About Incontinence Among Informal Caregivers of Individuals With Dementia.
OBJECTIVE
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).


METHODS
Descriptive secondary analysis.


METHODS
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.
Jean Mullins, BSN, RN, University of Minnesota School of Nursing, Minneapolis. Donna Z. Bliss, PhD, RN, FAAN, FGSA, University of Minnesota School of Nursing, Minneapolis. Sharon Rolnick, PhD, HealthPartners Research Foundation, Bloomington, Minnesota. Casey Arntson Henre, BSN, RN, University of Minnesota School of Nursing, Minneapolis. Jody Jackson, BSN, RN, HealthPartners Research Foundation, Bloomington, Minnesota.
Jean
J
Mullins
Donna Z
DZ
Bliss
Sharon
S
Rolnick
Casey Arntson
CA
Henre
Jody
J
Jackson
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000150:complications / Q000628:therapy; D017028:Caregivers / Q000523:psychology / Q000592:standards*; D003142:Communication; D003144:Communication Barriers; D003704:Dementia / Q000150:complications* / Q000628:therapy; D005260:Female; D017144:Focus Groups; D006266:Health Education / Q000379:methods / Q000592:standards; D057220:Health Literacy / Q000592:standards; D006282:Health Personnel / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D005791:Patient Care / Q000523:psychology; D014549:Urinary Incontinence / Q000628:therapy*