"You know it is definitely a life-changing experience because you have to change your whole lifestyle around it": Affected individual and caregiver perspectives on urinary incontinence

Purpose:  To conduct a qualitative study of affected individual and family caregiver perceptions of bladder control quality of life.

Background:  Evidence suggests that avoidant behaviour, judgmental attitudes, and negative beliefs held by affected individuals, their caregivers, family members, and health care providers toward urinary incontinence have deleterious consequences: e.g., discordant understanding of urinary incontinence quality of life that can lead to mismanagement, social isolation, diminished quality of life, depression, and safety hazards. There is a need to fully understand barriers and facilitators of empathic care to help nurses enhance sensitive care, boost confidence in the caregiving role, and improve quality of life of those affected by urinary incontinence.

Method/Design: Twenty-six interviews were conducted with 13 pairs of affected individuals and caregivers. Interviews were transcribed, coded, and analyzed using content analysis and constant comparison techniques.

Results: Five major qualitative themes were found: Life changes, Psychological Responses and Coping, Painful Responses of Others, Reticence to Seek Medical Attention, and Advice to Health Care Providers

Conclusions:  Continence care is a ‘team effort’ between affected individuals and family caregivers, and requires their constant vigilance. Fatalistic attitudes by professional care providers persist about effective bladder control.  Affected individuals remain reluctant to broach bladder control with primary care practitioners.

Implications for nursing:  Nurses need to take an empathic, patient-and-family-centred approach in talking about bladder control that remains a sensitive topic for affected individuals.  Both affected individuals and caregivers need, from nurses, validation of their creativity and resiliency in refusing to let urinary incontinence negate enjoyment of important aspects of their lives.