Designing a Supportive Program based on the Real Needs of Mothers with Children Undergoing Hemodialysis: A Qualitative Study
Abstract
Background: Mothers with children undergoing hemodialysis play the role of primary caregivers for their child and fully sacrifice themselves for care, leading to social isolation, suffering, stress, and negative effects on their health. Therefore, this study was conducted to design a supportive program based on the real needs of mothers with children undergoing hemodialysis.
Materials and Methods : This qualitative study was conducted in the Hemodialysis Division of Doctor Sheikh Pediatric Hospital in Mashhad City, Iran, from September 2016 to February 2019. The research included phenomenological study, meta‑synthesis of qualitative studies, focused group, and nominal group. Participants were selected based on purposive sampling. Eleven mothers with children undergoing hemodialysis and seven key people related to these mothers participated in the study. MaxQDA software was used to facilitate data management.
Results: The six main areas including information needs, how to deal with the child, maintaining the mother’s physical and functional health, maintaining family relationships, income earning and maintaining financial resources, and emotional‑psychological support were extracted. Based on the needs of mothers, 28 support strategies were presented; then, 19 ideas were presented to screen the needs, and finally, the best idea was selected for each need.
Conclusions: According to the findings of this study, mothers with children undergoing hemodialysis need support in various physical, psychosocial, informational, economic, and functional dimensions. The supportive program designed provides a systematic framework for screening the needs of these mothers and providing multifaceted support measures with the participation of a multidisciplinary care team.
Keywords
Full Text:
PDFReferences
Becherucci F, Roperto RM, Materassi M, Romagnani P. Chronickidney disease in children. Clin Kidney J 2016;9:583 91.
Pourghaznein T, Heydari A, Manzari Z, ValizadehZare N. “Immersion in an ocean of psychological Tension:” The voices of mothers with children undergoing hemodialysis. Iran J Nurs Midwifery Res 2018;23:253 60.
Wiedebusch S, Konrad M, Foppe H, Reichwald Klugger E, Schaefer F, Schreiber V, et al. Health related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol (Berlin, Germany) 2010;25:1477 85.
PourghazneinT, Heydari A, manzari Z. Iranian mothers’ experiences with children undergoing hemodialysis: A hermeneutic phenomenological study. J Pediatr Nurs 2018;42:19 25.
Mieto F, Bousso R. The mothers’ experiences in the pediatrics hemodialysis unit. J Bras Nefrol 2014;36:460 8.
Medway M, Tong A, Craig JC, Kim S, Mackie F, McTaggart S, et al. Parental perspectives on the financial impact of caring for a child with CKD. Am J Kidney Dis 2015;65:384 93.
Tong A, Sainsbury P, Craig JC. Support interventions for caregivers of people with chronic kidney disease: A systematic review. Nephrol Dialysis Transplant 2008;23:3960 5.
Bignall R, Goldstein Sl. Childhood CKD affects the entire family. Am J Kidney Dis 2015;65:367 8.
Hanson CS, Craig JC, Tong A. In their own words: The value of qualitative research to improve the care of children with chronic kidney disease. Pediatr Nephrol (Berlin, Germany) 2017;32:1501 7.
Smith J, Cheater F, Bekker H. Parents’ experiences of living witha child with a long termcondition: A rapid structured review ofthe literature. Health Expect 2015;18:452 74.
victo. Providingoptimal cancer care, Supportive care policy for Victoria. Victorian Government Department of Human Services, Melbourne, Victoria, Australia. ACopyrightState of Victiria 2009. Available from: https://www.health.vic.gov.au/health-strategies/ supportive-care.
Marmo S. Recommendations for hospice care to terminally ill cancer patients: A phenomenological study of oncologists’ experiences. J Soc Work End Life Palliat Care 2014;10:149 69.
Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol 2012;12:181.
Pourghaznein T, manzari Z, Heydari A, Mousavi Bazzaz M. Basic needs of mothers of children undergoing hemodialysis: A metasynthesis of qualitative studies. Evid Based Care J 2018;8:14 25.
Swallow V, Allen D, Williams J, Lambert H, Wirz L, Crosier J, et al. Pan Britain, mixed methods study of multidisciplinary teams teaching parents to manage children’s long term kidney conditions at home: Study protocol. BMC Health Services Res 2012;12:33.
Swallow V, Smith T, Webb NJ, Wirz L, Qizalbash L, Brennan E, et al. Distributed expertise: Qualitative study of a British network of multidisciplinary teams supporting parents of children with chronic kidney disease. Child Care Health Dev 2015;41:67 75.
Swallow V, Knafl K, Sanatacroce S, Hall A, Smith T, Campbell M, et al. The online parent information and support project, meeting parents’ information and support needs for home based management of childhood chronic kidney disease: Research protocol. J Adv Nurs 2012;68:2095 102.
Swallow VM, Hall AG, Carolan I, Santacroce S, Webb NJ, Smith T, et al. Designing a web application to support home based care of childhood CKD stages 3 5: Qualitative study of family and professional preferences. BMC Nephrol 2014;15:1 12.
Geense WW, van Gaal BG. Online support program for parents of children with a chronic kidney disease using intervention mapping: A development and evaluation protocol. JMIR Res Protoc 2016;5:e1.
Ajarmeh S, Er L, Brin G, Djurdjev O, Dionne JM. The effect of a multidisciplinary care clinic on the outcomes in pediatric chronic kidney disease. Pediatr Nephrol 2012;27:1921 7.
Refbacks
- There are currently no refbacks.