The Effect of Clean Intermittent Catheterization on Family and Social Relationships: What it Takes to be Normal
Stuart Bauer, MD, Rachel A. Saunders, BA, Lillian C. Hayes, PhD, ABPP, Regina L. Tham, BS, Kennary Choung, RN, BSN, Christina G. Vallery, MSW, LCSW, Mélise A. Keays, MS, MSc, FRCSC.
.Boston Children's Hospital, Boston, MA, USA.
BACKGROUND: Clean Intermittent Catheterization (CIC) is a widely accepted technique for managing bladder dysfunction, preserving kidney function, and achieving continence. Past research has primarily focused on the beneficial effects of CIC on the urinary tract. Little to no research has been devoted to its impact on family and social relationship dynamics. This study aims to explore patients’ and families’ experiences with CIC and its impact on family and social life.
Methods: This is a qualitative interview-based study to identify psycho-social experiences for patients and families. A phenomenological approach using semi-structured interviews was conducted with patients and families between Aug 2018 and Oct 2019. Purposeful sampling identified eligible patients with bladder dysfunction on CIC. Interviews were audio recorded, transcribed, and coded with a focus on CIC’s impact on caregivers, siblings, friends, extended family, and intimate partner relationships, specifically what limited or helped the family’s ability to adjust to this form of bladder management.
Results: 52 interviews among 40 families were conducted: 14 involved patients over 12 years, 14 just caregivers, and 12 included patients and their caregivers, interviewed separately. From these interviews, we identified common themes central to patient and family experiences for individuals who require CIC, including: (1) coping methods of caregivers and patients (encouragement, reinforcement that CIC is normal, acceptance of and adaptation to regular catheter emptying, ready access to the healthcare team’s resources, maintenance of a positive attitude, and connection with others who have a similar diagnosis and perform CIC); (2) relationship of patients with: friends and extended family (trying to balance privacy with openness, and relief when confiding in them versus fear of judgement or rejection), partners (distress about telling a partner, partner acceptance and support, and receiving information about sexual health and intimacy from reliable sources and health care providers), caregivers (strong bonds developed between a supportive caregiver and child; conversely, patients perceived caregivers as over-solicitous, lacking understanding, or not involved enough to meet their needs), and siblings (accepting and supportive, no impact, or struggled with divided attention); and (3) caregiver interrelationships (delineation of roles and responsibilities, importance of communication, and teamwork).
Conclusions: This study identified key concerns to patients and caregivers who require CIC to optimize bladder dysfunction. These findings underscore the importance of collaborative family dynamics and the medical team’s role in facilitating supportive relationships as patients embark on their new ‘normal.’ This can be achieved by encouraging open communication to understand a patient's and family’s unique needs, identifying coping strategies, offering resources such as behavioral health services, support groups, or peer mentorship, and providing opportunities for education on sexual health.
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