Hypothesis / aims of study
Managing incontinence in dependent older adults leads to greater burden for informal caregivers (i.e., family members and friends) and an increased risk of institutionalization for the care recipient. Understanding the perspectives and experiences of caregivers of persons with incontinence will help inform the development and evaluation of supportive programs, potentially leading to better outcomes for caregivers and care recipients. The purpose of this review was to explore informal caregivers’ perceptions, experiences, and consequences (physical, psychosocial, economic) as they relate to the management of incontinence in community-dwelling older adults.
Study design, materials and methods
Design: Prospero registered (CRD42017069185) systematic review and meta-aggregation of qualitative research studies.
Methods: The Ovid MEDLINE®, CINAHL®, PsycINFO®, Embase®, ProQuest Dissertations and Theses®, and Scopus® bibliographic databases were search for English language, peer-reviewed publications published between January 1970 and June 2019. Eligible studies had to have a qualitative design and focus on the experiences of informal caregivers caring for an older adult with urinary and/or fecal incontinence. Study participants had to be an unpaid adult (age 18 years or older) family member or friend providing the majority of care within a home setting to a community-dwelling adult aged 60 or older with urinary and/or fecal incontinence. Two independent reviewers appraised the methodologic rigor of studies using the Joanna Briggs Institute’s (JBI) Critical Appraisal Checklist for Qualitative Research. A third reviewer with expertise in qualitative research methods arbitrated disagreements. The credibility of findings from each study was evaluated using the JBI ConQual process. (1) Only findings with credibility ratings of unequivocal or credible were eligible for meta-aggregation. Data was extracted and synthesized using the JBI meta-aggregation approach. (2)
Results
Database searches yielded 1047 unique references; 112 full-text documents were screened and 7 articles met eligibility criteria. The studies were conducted in nine countries (i.e., Australia, China, Germany, Italy, the Netherlands, the Slovak Republic, Sweden, the United Kingdom, and the United States). Overall, there were 134 caregivers interviewed who ranged in age from 21 to 86 years, with the majority female (69%). Over 60% were spouses of the care recipient, 37% were their adult child (son, daughter, son-in-law, or daughter-in-law), 2% were their granddaughters, and 1% were family friends. From the seven eligible studies, 51 findings were extracted with credibility ratings of unequivocal (n=27), credible (n=8), and unsupported (n=16). Only the 35 findings rated as unequivocal or credible were eligible for meta-aggregation. Eligible findings were grouped into 13 categories and further collapsed into four synthesized findings related to 1) emotional responses, 2) physical, financial, and social consequences, 3) family roles and caregiver support, and 4) management strategies. A summary of the findings appear in the table.
Interpretation of results
Informal caregivers reported that managing incontinence was emotionally and physically demanding, causing financial hardships and social isolation. They had to cope with changes in family roles and intimacy and learn practical strategies for managing incontinence. They indicated that informal and formal support was essential in helping them learn and implement incontinence management strategies, but they also identified a lack of practical support from health professionals. Caregivers also reported positive emotional experiences and coping strategies.
Concluding message
Educational and supportive programs for managing incontinence should be multi-component and tailored to meet the individual needs of informal caregivers and care recipients. Future research should incorporate strategies to cope with emotional responses, alleviate financial burdens, activate social networks, provide respite to caregivers, offer practical strategies for managing incontinence, and support positive emotional responses and coping.