Advertisement

The experiences of mothers of children with hydrocephalus in Jordan: A phenomenological study

Published:December 29, 2022DOI:https://doi.org/10.1016/j.pedn.2022.12.026

      Highlights

      • The mothers described caregiving demands in meeting their children's needs, causing them to abandon other responsibilities
      • The mothers reported withdrawal from social occasions, mainly because of the offensive comments from others
      • The mothers reported feelings of uncertainty and concerns about the child's future, and considering abortion as a solution
      • Receiving support from their significant others and gaining knowledge were important factors to easing their adaptation process

      Abstract

      Background

      Available literature showed that mothers of children with hydrocephalus experience many challenges. Studies that described mothers' experiences in caring for their children with hydrocephalus are limited. Understanding the mothers' experiences and challenges is essential and may enable the provision of increased knowledge and support for these mothers.

      Aim

      The aim of this study was to explore the lived experiences of Jordanian mothers of children with hydrocephalus.

      Methodology

      A phenomenological descriptive approach was applied in this study, using semi-structured interviews with a purposive sample of 10 mothers of children with hydrocephalus. Transcribed interviews were analyzed using thematic approach.

      Result

      Three main themes that explored the mothers' experiences emerged from the data analysis process. The first theme was the impact of living with a child with hydrocephalus. Four subthemes comprise this theme; namely the mothers' initial response, overwhelming responsibilities, social withdrawal, and adapting: loving the baby and growing stronger. The second theme was related to the support system. Two subthemes compose this theme; the role of husband, and social support. The last theme was related to feelings of uncertainty. Two subthemes constitute this theme; concerns about the child's future and considering abortion as a solution.

      Conclusion

      The mothers in this study were found to have experienced many intense feelings and to have faced many stressors and difficulties associated with the different stages of their child's illness. This study provides evidence that could be used to develop guidelines to support mothers of children with hydrocephalus.

      Keywords

      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'

      References

        • Alebous H.D.A.
        • Hasan A.A.
        Prevalence of congenital hydrocephalus in the Hashemite kingdom of Jordan: A hospital-based study.
        Natural Science. 2012; 04: 789-791
        • Atout M.
        • Tarawneh F.S.
        • Al-Kharabsheh A.
        Challenges faced by mothers caring for children with leukaemia during COVID-19 pandemic: A qualitative study.
        Journal of Pediatric Nursing. 2021; 58: e74-e80
        • Bakare M.A.
        Community perception about children with hydrocephalus in Lagos state, Nigeria.
        The Nigerian Journal of Sociology and Anthropology. 2020; 18: 147-164
        • Bally J.M.G.
        • Smith N.R.
        • Holtslander L.
        • Duncan V.
        • Hodgson-Viden H.
        • Mpofu C.
        • Zimmer M.
        A Metasynthesis: Uncovering what is known about the experiences of families with children who have life-limiting and life-threatening illnesses.
        Journal of Pediatric Nursing. 2018; 38: 88-98
        • Braun V.
        • Clarke V.
        Using thematic analysis in psychology.
        Qualitative Research in Psychology. 2006; 3: 77-101
        • Dewan M.C.
        • Rattani A.
        • Mekary R.
        • Glancz L.J.
        • Yunusa I.
        • Baticulon R.E.
        • Warf B.C.
        Global hydrocephalus epidemiology and incidence: Systematic review and meta-analysis.
        Journal of Neurosurgery. 2019; 130: 1065-1079
        • Dorner R.A.
        • Boss R.D.
        • Burton V.J.
        • Raja K.
        • Robinson S.
        • Lemmon M.E.
        Isolated and on guard: Preparing neonatal intensive care unit families for life with hydrocephalus.
        American Journal of Perinatology. 2021; 39: 1341-1347
        • Duzgun M.V.
        • Erdem Y.
        Factors affecting the anxiety level and quality of life of parents of children with hydrocephalus.
        International Journal of Caring Sciences. 2020; 13: 1382-1391
        • Englander M.
        The interview: Data collection in descriptive phenomenological human scientific research.
        Journal of Phenomenological Psychology. 2012; 43: 13-35
        • Fain J.A.
        Reading, understanding, and applying nursing searserch.
        F.A. Davis Company, 2017
      1. Guba, E., & Lincoln, Y. (1994). Handbook of qualitative research. Sage Publications, Inc. http://www.uncg.edu/hdf/facultystaff/Tudge/Guba/20&/20Lincoln/201994.pdf

        • Gurol A.
        • Erdem Y.
        • Tasbasi F.Y.
        The experienced problems of mothers having children with Hydrocephalus: A qualitative study.
        International Journal of Caring Sciences. 2015; 8: 435-442
        • Holstein J.
        • Gubrium J.F.
        Inside interviewing: New lenses, new concerns. Sage, 2003
        • Iqbal H.
        • Habib A.
        • Amer S.
        Abortion – An Islamic perspective.
        Journal of the British Islamic Medical Association. 2019; 2: 1-3
        • Irani M.
        • Khadivzadeh T.
        • Asghari Nekah S.
        • Ebrahimipour H.
        Informational needs of pregnant women following the prenatal diagnosis of fetal anomalies: A qualitative study in Iran.
        Journal of Education and Health Promotion. 2019; 8: 22-31
        • Kelly K.A.
        • Monk S.
        • Koschnitzky J.E.
        • Chen H.
        • Shannon C.N.
        • Bey A.
        Differences in health-seeking behaviors by socioeconomic groups among the pediatric hydrocephalus patient population.
        Interdisciplinary Neurosurgery: Advanced Techniques and Case Management. 2021; 24
        • Kyarimpa R.
        • Muramuzi D.
        • Muhwezi T.
        Care giver’s experiences of having a child with hydrocephalus: A phenomenological study at Ruharo mission hospital.
        MedRxiv. 2020;
        • van der Mark E.J.
        • Conradie I.
        • Dedding C.W.M.
        • Broerse J.E.W.
        ‘We create our own small world’: Daily realities of mothers of disabled children in a South African urban settlement.
        Disability and Society. 2019; 34: 95-120
        • Ngan O.M.Y.
        • Yi H.
        • Bryant L.
        • Sahota D.S.
        • Chan O.Y.M.
        • Ahmed S.
        Parental expectations of raising a child with disability in decision-making for prenatal testing and termination of pregnancy: A mixed methods study.
        Patient Education and Counseling. 2020; 103: 2373-2383
        • Ogunleye O.
        • Ismail N.J.
        • Lasseini A.
        • Shehu B.B.
        Management of childhood hydrocephalus in our centre: Parents ’ knowledge, experiences and expectations.
        Global Journal for Research Analysis. 2022; 7: 8-10
        • Smith J.
        • Cheater F.
        • Bekker H.
        Parents’ experiences of living with a child with a long-term condition: A rapid structured review of the literature.
        Health Expectations: An International Journal of Public Participation in Health Care and Health Policy. 2015; 18: 452-474
        • Smith J.
        • Cheater F.
        • Bekker H.
        Parents’ experiences of living with a child with hydrocephalus: A cross-sectional interview-based study.
        Health Expectations. 2015; 18: 1709-1720
        • Smith M.
        • Blamires J.
        Mothers’ experience of having a child with cerebral palsy. A systematic review.
        Journal of Pediatric Nursing. 2022; 64: 64-73
        • Verberne L.M.
        • Kars M.C.
        • Schouten-van Meeteren A.Y.N.
        • van den Bergh E.M.M.
        • Bosman D.K.
        • Colenbrander D.A.
        • van Delden J.J.M.
        Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study.
        European Journal of Pediatrics. 2019; 178: 1075-1085
        • Wee L.X.
        • Tan P.S.T.
        • Chen H.C.
        Experiences and needs of families caring for children and adolescents with chronic kidney disease: A meta-synthesis.
        Journal of Pediatric Nursing. 2022; 63: 52-63