Unexpected challenges faced by caregivers of children with neurogenic bladder: A qualitative study



      Management of the neurogenic bladder is variable, complex, and often requires a demanding bladder care regimen which may present caregiver burdens that are unique among chronic disease. While research into patient quality of life is increasing, parallel study of the caregiver experience is scant. Existing research primarily comprises survey data using validated instruments originally developed for non-urologic conditions, such as dementia. These surveys may detect high caregiver burden and decreased quality of life amongst caregivers but are limited in their ability to understand the underlying causes.


      To characterize the experience of those caring for children with neurogenic bladders, with a focus on unexpected burdens and challenges.


      In light of limited existing research, a qualitative research methodology was selected to explore the caregiver experience. Semi-structured phone interviews were conducted with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a single tertiary pediatric referral center. Purposive sampling was used to ensure diverse representation. Interviews were recorded, transcribed, and professionally translated if needed. Transcripts were analyzed using a team-based inductive grounded-theory approach, facilitated by ATLAS. ti software. Member-checking focus groups were held to validate the results.


      Twenty-five caregivers were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three primary themes emerged surrounding the topic of unexpected challenges: 1. High caregiver burden, 2. Challenges with catheterization and supplies, 3. Urinary tract infections. Member-checking focus groups validated the thematic analysis and provided additional insights into mitigating factors for these challenges. A child's independence with his or her health care regimen was cited as particularly important for decreasing caregiver burden.


      Caregivers of children with neurogenic bladder report their role is more difficult than they anticipated it would be. Catheterization represents a particularly burdensome task, and recurrent infections are an unexpected and persistent medical challenge. Understanding unexpected challenges that caregivers face will help pediatric urologists target modifiable factors to decrease caregiver burden, address current gaps in counseling and expectation-setting, and set the stage for more complete shared decision-making.


      This study represents an initial qualitative characterization of the experience caring for a child with neurogenic bladder. This is a key first step in understanding how caregivers make decisions for their children and their families. This initial study is foundational to a larger project to create a decision aid for caregivers of children with neurogenic bladder.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of Pediatric Urology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Cousino M.K.
        • Hazen R.A.
        Parenting stress among caregivers of children with chronic illness: a systematic review.
        J Pediatr Psychol. 2013; 38: 809-828
        • Kish A.M.
        • Newcombe P.A.
        • Haslam D.M.
        Working and caring for a child with chronic illness: a review of current literature.
        Child Care Health Dev. 2018; 44: 343-354
        • Raina P.
        • O’Donnell M.
        • Schwellnus H.
        • Rosenbaum P.
        • King G.
        • Brehaut J.
        • et al.
        Caregiving process and caregiver burden: conceptual models to guide research and practice.
        BMC Pediatr. 2004; 4: 1
        • Sadighian M.J.
        • Allen I.E.
        • Quanstrom K.
        • Breyer B.M.
        • Suskind A.M.
        • Baradaran N.
        • et al.
        Caregiver burden among those caring for patients with spina bifida.
        Urology. April 2021; (Published online) (S0090429521002880)
        • Maragh-Bass A.C.
        • Appelson J.R.
        • Changoor N.R.
        • Davis W.A.
        • Haider A.H.
        • Morris M.A.
        Prioritizing qualitative research in surgery: a synthesis and analysis of publication trends.
        Surgery. 2016; 160: 1447-1455
        • Starks H.
        • Brown Trinidad S.
        Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory.
        Qual Health Res. 2007; 17: 1372-1380
        • Creswell J.W.
        • Poth C.N.
        Qualitative inquiry and research design choosing among five approaches.
        4th ed. SAGE Publications, Inc., Thousand Oaks2018
        • Birt L.
        • Scott S.
        • Cavers D.
        • Campbell C.
        • Walter F.
        Member checking: a tool to enhance trustworthiness or merely a nod to validation?.
        Qual Health Res. 2016 Nov; 26: 1802-1811
        • Kaplan R.
        • Ganiats T.
        • Sieber W.
        • Anderson J.
        The quality of well-being scale: critical similarities and differences with SF-36.
        Int J Qual Health Care. 1998; 10: 509-520
        • Grosse S.D.
        • Flores A.L.
        • Ouyang L.
        • Robbins J.M.
        • Tilford J.M.
        Impact of spina bifida on parental caregivers: findings from a survey of Arkansas families.
        J Child Fam Stud. 2009; 18: 574-581
        • Rofail D.
        • Maguire L.
        • Heelis R.
        • Colligs A.
        • Lindemann M.
        • Abetz L.
        The impact of spina bifida on caregivers.
        Neurol Ther. 2012; 1
        • Novak M.
        • Guest C.
        Application of a multidimensional caregiver burden inventory 1.
        Gerontol. 1989; 29: 798-803
        • Farmer C.
        • Thienemann M.
        • Leibold C.
        • Kamalani G.
        • Sauls B.
        • Frankovich J.
        Psychometric evaluation of the caregiver burden inventory in children and adolescents with PANS.
        J Pediatr Psychol. 2018; 43: 749-757
        • Chou K.R.
        Caregiver burden: a concept analysis.
        J Pediatr Nurs. 2000; 15: 398-407
        • Antiel R.M.
        • Adzick N.S.
        • Thom E.A.
        • Burrows P.K.
        • Farmer D.L.
        • Brock J.W.
        • et al.
        Impact on family and parental stress of prenatal vs postnatal repair of myelomeningocele.
        Am J Obstet Gynecol. 2016; 215: 522.e1-522.e6
        • Schoenmakers M.A.
        • Uiterwaal C.S.
        • Gulmans V.A.
        • Gooskens R.H.
        • Helders P.J.
        Determinants of functional independence and quality of life in children with spina bifida.
        Clin Rehabil. 2005; 19: 677-685
        • Choi E.K.
        • Ji Y.
        • Bae E.
        • Jang M.
        Parents' needs concerning their children with spina bifida in South Korea: a mixed method study.
        J Pediatr Nurs. 2019; (Published online April 26)
        • Choi E.K.
        • Jung E.
        • Ji Y.
        • Bae E.
        A 2-step integrative education program and mHealth for self-management in Korean children with spina bifida: feasibility study.
        J Pediatr Nurs. 2019; 49: e54-e62
        • Yun H.J.
        • Choi E.K.
        • Han S.W.
        Parents' perception of self-management behaviors for their children with spina bifida in South Korea: a qualitative study.
        Rehabil Nurs J. 2021; 46: 73-82
        • Peycelon M.
        • Szymanski K.M.
        • Francesca Monn M.
        • Salama A.K.
        • Risk H.
        • Cain M.P.
        • et al.
        Adherence with bladder irrigation following augmentation.
        J Pediatr Urol. 2020; 16: 33.e1-33.e8
        • Psihogios A.M.
        • Kolbuck V.
        • Holmbeck G.N.
        Condition self-management in pediatric spina bifida: a longitudinal investigation of medical adherence, responsibility-sharing, and independence skills.
        J Pediatr Psychol. 2015; 40: 790-803
        • Zipitis C.S.
        • Paschalides C.
        Caring for a child with spina bifida: understanding the child and carer.
        J Child Health Care Prof Work Child Hosp Commun. 2003; 7: 101-112