title: The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study.
abstract: 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.
authors.affiliation: School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, Adelaide, SA, Australia. Electronic address: lemuel.pelentsov@unisa.edu.au.
authors.forename: Lemuel J
authors.initials: LJ
authors.lastname: Pelentsov
authors.affiliation: Sansom Institute for Health Research and School of Nursing and Midwifery, Division of Health Sciences, University of South Australia, City East Campus, Adelaide, SA, Australia. Electronic address: andrea.fielder@unisa.edu.au.
authors.forename: Andrea L
authors.initials: AL
authors.lastname: Fielder
authors.affiliation: Sansom Institute of Health Service Research and School of Nursing and Midwifery, Division of Health Sciences, University of SA, Centre for Chronic Disease Prevention, James Cook University, Cairns, QLD, Australia. Electronic address: adrian.esterman@unisa.edu.au.
authors.forename: Adrian J
authors.initials: AJ
authors.lastname: Esterman
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000193:education / Q000523:psychology*; D002648:Child; D002662:Child Health Services / Q000458:organization & administration; D002675:Child, Preschool; D006801:Humans; D020380:Needs Assessment; D010290:Parents / Q000193:education / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research; D035583:Rare Diseases / Q000451:nursing*; D012657:Self-Help Groups; D013021:South Australia
keywords: Children; Experiences; Parents; Rare diseases; Supportive care needs