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The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study

Published:December 02, 2015DOI:https://doi.org/10.1016/j.pedn.2015.10.022

      Highlights

      • Focus groups used to investigate needs of parents of a child with a rare disease.
      • Parents felt socially isolated caring for their child with a rare disease.
      • Often parents have to assume the role of ‘expert’ in caring for their child.
      • Parents are frustrated by a lack of knowledge of disease by health professionals.
      • Caring for a child with a rare disease may impact on family relationships.
      There are few studies that exist which focus specifically on parents with a child with a rare disease. The purpose of this study was to better understand the lived experiences and supportive care needs (SCN) of parents caring for a child across a spectrum of rare diseases. A qualitative descriptive approach was used to guide the research, and four semi-structured focus group interviews were conducted with 23 parents (17 mothers and 6 fathers). Participants described ‘feeling boxed-in outside the box’ due to a number of limitations unique to their child's disease, daily practical challenges in providing care and the various relational impacts of caring for a child with a rare disease were discussed. The results from this study help to give clearer direction for health professionals on where to focus future efforts in better meeting the supportive care needs of parents and their child with a rare disease.

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      References

        • Aarthun A.
        • Akerjordet K.
        Parent participation in decision-making in health-care services for children: An integrative review.
        Journal of Nursing Management. 2014; 22: 177-191
        • Attride-Stirling J.
        Thematic networks: An analytic tool for qualitative research.
        Qualitative Research. 2001; 1: 385-405
        • Aymé S.
        • Schmidtke J.
        Networking for rare diseases: A necessity for Europe.
        Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 2007; 50: 1477-1483
        • Aytch L.S.
        • Hammond R.
        • White C.
        Seizures in infants and young children: An exploratory study of family experiences and needs for information and support.
        The Journal of Neuroscience Nursing. 2001; 33: 278-285
        • Barlow J.
        • Ellard D.
        The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base.
        Child: Care, Health and Development. 2006; 32: 19-31
        • Batshaw M.
        • Groft S.
        • Krischer J.
        Research into rare diseases of childhood.
        JAMA: The Journal of the American Medical Association. 2014; 311: 1729-1730
        • Bellgard M.
        • Beroud C.
        • Parkinson K.
        • Harris T.
        • Ayme S.
        • Baynam G.
        • Hunter A.
        Dispelling myths about rare disease registry system development.
        Source Code for Biology and Medicine. 2013; 8: 1-7
        • Benn K.
        • McColl M.
        Parental coping following childhood acquired brain injury.
        Brain Injury. 2004; 18: 239-255
        • Case-Smith J.
        Parenting a child with a chronic medical condition.
        The American Journal of Occupational Therapy. 2004; 58: 551-560
        • Coffey J.
        Parenting a child with chronic illness: A metasynthesis.
        Pediatric Nursing. 2006; 32: 51-60
        • Curtin M.
        • Fossey E.
        Appraising the trustworthiness of qualitative studies: Guidelines for occupational therapists.
        Australian Occupational Therapy Journal. 2007; 54: 88-94
        • Da Silva F.
        • Jacob E.
        • Nascimento L.
        Impact of childhood cancer on parents' relationships: An integrative review.
        Journal of Nursing Scholarship. 2010; 42: 250-261
        • de Vrueh R.
        Why R&D into rare diseases matter.
        in: Bali R.K. Bos L. Gibbons M.C. Ibell S. Rare diseases in the age of health 2.0. Vol. 4. Springer Berlin Heidelberg, 2014: 3-20
        • Dellve L.
        • Samuelsson L.
        • Tallborn A.
        • Fasth A.
        • Hallberg L.
        Stress and well-being among parents of children with rare diseases: A prospective intervention study.
        Journal of Advanced Nursing. 2006; 53: 392-402
        • Denis A.
        • Mergaert L.
        • Fostier C.
        • Cleemput I.
        • Simoens S.
        Issues surrounding orphan disease and orphan drug policies in Europe.
        Applied Health Economics and Health Policy. 2010; 8: 343-350
        • Duffy L.
        Parental coping and childhood epilepsy: The need for future research.
        Journal of Neuroscience Nursing. 2011; 43: 29-35
        • Eatough V.
        • Santini H.
        • Eiser C.
        • Goller M.L.
        • Krysa W.
        • De Nicola A.
        • Smith J.A.
        The personal experience of parenting a child with juvenile Huntington's disease: Perceptions across Europe.
        European Journal of Human Genetics. 2013; 21: 1042-1048
        • Eurordis, E. O. f. R. D.
        Rare diseases: Understanding this public health priority. Vol. 2013. 2005
        • Fajac I.
        • Bulteel V.
        • Castellani C.
        • Lee T.
        • Derichs N.
        • Drevinek P.
        • De Boeck K.
        The European Cystic Fibrosis Society–Clinical Trials Network: An international network to optimize clinical research for a rare disease.
        Clinical Investigation. 2013; 3: 921-926
        • Fisher H.
        The needs of parents with chronically sick children: A literature review.
        Journal of Advanced Nursing. 2001; 36: 600-607
        • Fleurbaey M.
        • Schokkaert E.
        Equity in health and health care, CORE Discussion Papers 2011026, Université catholique de Louvain.
        Center for Operations Research and Econometrics, 2011
        • Gallo A.
        • Hadley E.
        • Angst D.
        • Knafl K.
        • Smith C.
        Parents' concerns about issues related to their children's genetic conditions.
        Journal for Specialists in Pediatric Nursing. 2008; 13: 4-14
        • Gallo A.
        • Knafl K.
        • Angst D.
        Information management in families who have a child with a genetic condition.
        Journal of Pediatric Nursing. 2009; 24: 194-204
        • Glenn A.
        Using online health communication to manage chronic sorrow: Mothers of children with rare diseases speak.
        Journal of Pediatric Nursing. 2015; 30: 17-24
        • Goble L.
        The impact of a child's chronic illness on fathers.
        Issues in Comprehensive Pediatric Nursing. 2004; 27: 153-162
        • Graungaard A.
        • Skov L.
        Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severely disabled.
        Child: Care, Health and Development. 2006; 33: 296-307
        • Gray D.
        Gender and coping: The parents of children with high functioning autism.
        Social Science & Medicine. 2003; 56: 631-642
        • Griggs R.
        • Batshaw M.
        • Dunkle M.
        • Gopal-Srivastava R.
        • Kaye E.
        • Krischer J.
        • Merkel P.
        Clinical research for rare disease: Opportunities, challenges, and solutions.
        Molecular Genetics and Metabolism. 2009; 96: 20-26
        • Guest G.
        • Bunce A.
        • Johnson L.
        How many interviews are enough? An experiment with data saturation and variability.
        Field Methods. 2006; 18: 59-82
        • Hendriks A.
        • De Moor J.
        • Oud J.
        • Franken W.
        Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler classes.
        Clinical Rehabilitation. 2000; 14: 506-517
        • Hummelinck A.
        • Pollock K.
        Parents' information needs about the treatment of their chronically ill child: A qualitative study.
        Patient Education and Counseling. 2006; 62: 228-234
        • Jaffe A.
        • Zurynski Y.
        • Beville L.
        • Elliott E.
        Call for a national plan for rare diseases.
        Journal of Paediatrics and Child Health. 2010; 46: 2-4
        • Katz S.
        When the child's illness is life threatening: Impact on the parents.
        Pediatric Nurse. 2002; 28: 453-463
        • Kerr L.
        • Harrison M.
        • Medves J.
        • Tranmer J.
        Supportive care needs of parents of children with cancer: Transition from diagnosis to treatment.
        Oncology Nursing Forum. 2004; 31: E116-E126
        • Kerr L.
        • Harrison M.
        • Medves J.
        • Tranmer J.
        • Fitch M.
        Understanding the supportive care needs of parents of children with cancer: An approach to local needs assessment.
        Journal of Pediatric Oncology Nursing. 2007; 24: 279-293
        • Kirk S.
        • Glendinning C.
        Developing services to support parents caring for a technology-dependent child at home.
        Child: Care, Health and Development. 2004; 30: 209-218
        • Kline W.
        Developing and submitting credible qualitative manuscripts.
        Counselor Education and Supervision. 2008; 47: 210-217
        • Kotecha R.
        • Kees U.
        • Cole C.
        • Gottardo N.
        Rare childhood cancers—an increasing entity requiring the need for global consensus and collaboration.
        Cancer Medicine. 2015; 4: 819-824
        • Macfadyen A.
        • Swallow V.
        • Santacroce S.
        • Lambert H.
        Involving fathers in research.
        Journal for Specialists in Pediatric Nursing. 2011; 16: 216-219
        • McGrath P.
        Identifying support issues of parents of children with leukemia.
        Cancer Practice. 2001; 9: 198-205
        • Nahalla C.
        • FitzGerald M.
        The impact of regular hospitalization of children living with thalassaemia on their parents in Sri Lanka: A phenomenological study.
        International Journal of Nursing Practice. 2003; 9: 131-139
        • Neil-Urban S.
        • Jones J.
        Father-to-father support: Fathers of children with cancer share their experience.
        Journal of Pediatric Oncology Nursing. 2002; 19: 97-103
        • Nuutila L.
        • Salanterä S.
        Children with a long-term illness: Parents' experiences of care.
        Journal of Pediatric Nursing. 2006; 21: 153-160
        • O’Connor D.
        • Hemmings R.
        Coping with small populations of patients in clinical trials.
        Expert Opinion on Orphan Drugs. 2014; 2: 765-768
        • Pelchat D.
        • Lefebvre H.
        • Levert M.-J.
        Gender differences and similarities in the experience of parenting a child with a health problem: Current state of knowledge.
        Journal of Child Health Care. 2007; 11: 112-131
        • Pelentsov L.
        • O'Shaughnessy P.
        • Laws T.
        • Esterman A.
        What are the supportive care needs of parents caring for a child diagnosed with ectodermal dysplasia: A rare genetic disorder?.
        International Journal of Child Health and Human Development. 2014; 7: 23-29
        • Pelentsov L.J.
        • Laws T.
        • Esterman A.
        The supportive care needs of parents caring for a child with a rare disease: A scoping review.
        Disability and Health Journal. 2015; 8: 475-491
        • Sandelowski M.
        Whatever happened to qualitative description?.
        Research in Nursing & Health. 2000; 23: 334-340
        • Sandelowski M.
        What's in a name? Qualitative description revisited.
        Research in Nursing & Health. 2010; 33: 77-84
        • Sartore G.
        • Lagioia V.
        • Mildon R.
        Peer support interventions for parents and carers of children with complex needs.
        The Cochrane Library, 2013
        • Schieppati A.
        • Henter J.-I.
        • Daina E.
        • Aperia A.
        Why rare diseases are an important medical and social issue.
        The Lancet. 2008; 371: 2039-2041
        • Speraw S.
        Spiritual experiences of parents and caregivers who have children with disabilities or special needs.
        Issues in Mental Health Nursing. 2006; 27: 213-230
        • Strehle E.
        • Middlemiss P.
        Children with 4q-syndrome: The parents' perspective.
        Genetic Counseling. 2007; 18: 189-199
        • Swallow V.
        • Macfadyen A.
        • Santacroce S.J.
        • Lambert H.
        Fathers' contributions to the management of their child's long-term medical condition: A narrative review of the literature.
        Health Expectations. 2012; 15: 157-175
        • Tamres L.
        • Janicki D.
        • Helgeson V.
        Sex differences in coping behavior: A meta-analytic review and an examination of relative coping.
        Personality and Social Psychology Review. 2002; 6: 2-30
        • van Scheppingen C.
        • Lettinga A.
        • Duipmans J.
        • Maathuis K.
        • Jonkman M.
        The main problems of parents of a child with epidermolysis bullosa.
        Qualitative Health Research. 2008; 18: 545-556
        • Yeh C.-H.
        Gender differences of parental distress in children with cancer.
        Journal of Advanced Nursing. 2002; 38: 598-606
        • Yiu J.
        • Twinn S.
        Determining the needs of Chinese parents during the hospitalization of their child diagnosed with cancer: An exploratory study.
        Cancer Nursing. 2001; 24: 483-489
        • Zierhut H.
        • Bartels D.
        Waiting for the next shoe to drop: The experience of parents of children with Fanconi anemia.
        Journal of Genetic Counseling. 2012; 21: 45-58
        • Zurynski Y.
        • Frith K.
        • Leonard H.
        • Elliott E.
        Rare childhood diseases: How should we respond?.
        Archives of Disease in Childhood. 2008; 93: 1071-1074