Being a parent of a child with Down’s arthritis: an interpretative phenomenological analysis

References

• Giancane G, Consolaro A, Lanni S, et al. Juvenile idiopathic arthritis: diagnosis and treatment. Rheumatol Ther. 2016;3(2):187–207.
   PubMed Web of Science ®Google Scholar
• Hayward K, Wallace CA. Recent developments in anti-rheumatic drugs in pediatrics: treatment of juvenile idiopathic arthritis. Arthritis Res Ther. 2009;11(1):216.
   PubMed Web of Science ®Google Scholar
• Ghazavi M. Pitfalls in the diagnosis and management of juvenile idiopathic arthritis: a retrospective case-note analysis. Arch Dis Child. 2010;95(Suppl. 1):A36.
   Google Scholar
• Foley CM, Deely DA, MacDermott EJ, et al. Arthropathy of Down syndrome: an under-diagnosed inflammatory joint disease that warrants a name change. RMD Open. 2019;5(1):e000890.
   PubMed Web of Science ®Google Scholar
• Karam SM, Riegel M, Segal SL, et al. Genetic causes of intellectual disability in a birth cohort: a population-based study. Am J Med Genet A. 2015;167(6):1204–1214.
   PubMed Web of Science ®Google Scholar
• Kazemi M, Salehi M, Kheirollahi M. Down syndrome: current status, challenges and future perspectives. Int J Mol Cell Med. 2016;5(3):125–133.
   PubMed Web of Science ®Google Scholar
• Johnson Z, Lillis D, Delany V, et al. The epidemiology of Down syndrome in four counties in Ireland 1981–1990. J Public Health Med. 1996;18(1):78–86.
   PubMedGoogle Scholar
• Asim A, Kumar A, Muthuswamy S, et al. Down syndrome: an insight of the disease. J Biomed Sci. 2015;22(1):41–49.
   PubMedGoogle Scholar
• Juj H, Emery H. The arthropathy of Down syndrome: an underdiagnosed and under-recognized condition. J Pediatr. 2009;154(2):234–238.
   PubMed Web of Science ®Google Scholar
• Foley CM, Killeen OG, Wilson G, et al. Down syndrome Ireland involved in life-changing research into arthritis. Down syndrome Ireland, Research into Arthritis in Children. Dublin (Ireland): Down Syndrome Ireland; 2017.
   Google Scholar
• Heath-Watson S, Sule S. Living with juvenile idiopathic arthritis: parent and physician perspectives. Rheumatol Ther. 2018;5(1):1–4.
   PubMed Web of Science ®Google Scholar
• Eccleston C, Crombez G, Scotford A, et al. Adolescent chronic pain: patterns and predictors of emotional distress in adolescents with chronic pain and their parents. Pain. 2004;108(3):221–229.
   PubMed Web of Science ®Google Scholar
• Hunfeld JAM, Perquin CW, Duivenvoorden HJ, et al. Chronic pain and its impact on quality of life in adolescents and their families. J Pediatr Psychol. 2001;26(3):145–153.
   PubMed Web of Science ®Google Scholar
• Lewandowski AS, Palermo TM, Stinson J, et al. Systematic review of family functioning in families of children and adolescents with chronic pain. J Pain. 2010;11(11):1027–1038.
   PubMed Web of Science ®Google Scholar
• Palermo TM. Impact of recurrent and chronic pain on child and family daily functioning: a critical review of the literature. J Dev Behav Pediatr. 2000;21(1):58–69.
   PubMed Web of Science ®Google Scholar
• Thomas V, Olson DH. Problem families and the circumplex model: observational assessment using the clinical rating scale (CRS). J Marit Fam Ther. 1993;19(2):159–175.
   Web of Science ®Google Scholar
• Rodrigue JR, Morgan SB, Geffken GR. Psychosocial adaptation of fathers of children with autism, Down syndrome, and normal development. J Autism Dev Disord. 1992;22(2):249–263.
   PubMed Web of Science ®Google Scholar
• Stores R, Stores G, Fellows B, et al. Daytime behaviour problems and maternal stress in children with Down's syndrome, their siblings, and non-intellectually disabled and other intellectually disabled peers. J Intellect Disabil Res. 1998;42(Pt 3):228–237.
   PubMedGoogle Scholar
• Sanders JL, Morgan SB. Family stress and adjustment as perceived by parents of children with autism or Down syndrome: implications for intervention. Child Fam Behav Ther. 1997;19(4):15–32.
   Web of Science ®Google Scholar
• Erickson M, Upshur CC. Caretaking burden and social support: comparison of mothers of infants with and without disabilities. Am J Ment Retard. 1989;94(3):250–258.
   PubMedGoogle Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.
   PubMed Web of Science ®Google Scholar
• Jordan AL, Eccleston C, Osborn M. Being a parent of the adolescent with complex chronic pain: an interpretative phenomenological analysis. Eur J Pain. 2007;11(1):49–56.
   PubMed Web of Science ®Google Scholar
• Smith JA, Jarman M, Osborn M. Doing interpretative phenomenological analysis. In: Murray M, Osborn M, editors. Qualitative health psychology: theories and methods. London (UK): Sage; 1999. p. 218–224.
   Google Scholar
• Smith JA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Health. 1996;11(2):261–271.
   Web of Science ®Google Scholar
• Conrad P. The experience of illness: recent and new directions. Res Sociol Health Care. 1987;6:1–31.
   Google Scholar
• International Q. NVivo qualitative data analysis software [software]; 1999. Available from: https://qsrinternational.com/nvivo/nvivo-products
   Google Scholar
• Hennequin M, Faulks D, Allison PJ. Parents' ability to perceive pain experienced by their child with Down syndrome. J Orofac Pain. 2003;17(4):347–353.
   PubMedGoogle Scholar
• McGuire BE, Daly P, Smyth F. Chronic pain in people with an intellectual disability: under-recognised and under-treated? J Intellect Disabil Res. 2010;54(3):240–245.
   PubMedGoogle Scholar
• Davies RB. Pain in children with Down syndrome: assessment and intervention by parents. Pain Manag Nurs. 2010;11(4):259–267.
   PubMed Web of Science ®Google Scholar
• Barak-Levy Y, Atzaba-Poria N. Paternal versus maternal coping styles with child diagnosis of developmental delay. Res Dev Disabil. 2013;34(6):2040–2046.
   PubMed Web of Science ®Google Scholar
• Mohammadi S, de Boer MJ, Sanderman R, et al. Caregiving demands and caregivers’ psychological outcomes: the mediating role of perceived injustice. Clin Rehabil. 2017;31(3):403–413.
   PubMed Web of Science ®Google Scholar
• Baert F, McParland J, Miller MM, et al. Mothers' appraisals of injustice in the context of their child's chronic pain: an interpretative phenomenological analysis. Eur J Pain. 2020;24(10):1932–1945.
   PubMed Web of Science ®Google Scholar
• Deavin A, Greasley P, Dixon C. Children’s perspectives on living with a sibling with a chronic illness. Pediatrics. 2018;142(2):e20174151.
   PubMed Web of Science ®Google Scholar
• Lamsal R, Ungar WJ. Impact of growing up with a sibling with a neurodevelopmental disorder on the quality of life of an unaffected sibling: a scoping review. Disabil Rehabil. 2021;43(4):586–594.
   PubMed Web of Science ®Google Scholar
• Doody O, E. Bailey M. Pain and pain assessment in people with intellectual disability: issues and challenges in practice. Br J Learn Disabil. 2017;45(3):157–165.
   Web of Science ®Google Scholar
• McGuire BE, Defrin R. Pain perception in people with Down syndrome: a synthesis of clinical and experimental research. Front Behav Neurosci. 2015;9:194.
   PubMed Web of Science ®Google Scholar
• Butler J, Gregg L, Calam R, et al. Parents' perceptions and experiences of parenting programmes: a systematic review and metasynthesis of the qualitative literature. Clin Child Fam Psychol Rev. 2020;23(2):176–204.
   PubMed Web of Science ®Google Scholar
• Prochaska JO, Redding CA, Evers KE. The transtheoretical model and stages of change. In: Glanz K, Rimer BK, Viswanath K, editors. Health behavior: theory, research, and practice. Vol. 4. San Francisco (CA): Wiley; 2015. p. 125–148.
   Google Scholar
• Novick G. Is there a bias against telephone interviews in qualitative research? Res Nurs Health. 2008;31(4):391–398.
   PubMed Web of Science ®Google Scholar
• Holt A. Using the telephone for narrative interviewing: a research note. Qual Res. 2010;10(1):113–121.
   Web of Science ®Google Scholar
• Irvine A, Drew P, Sainsbury R. ‘Am I not answering your questions properly?’ Clarification, adequacy and responsiveness in semi-structured telephone and face-to-face interviews. Qual Res. 2013;13(1):87–106.
   Web of Science ®Google Scholar
• Cachia M, Millward L. The telephone medium and semi‐structured interviews: a complementary fit. Qual Res Orgs Mgmt. 2011;6(3):265–277.
   Google Scholar
• Shuy RW. In-person vs. telephone interviews. In: Holstein JA, Guibrium JF, editors. Inside interviewing: new lenses, new concerns. Thousand Oaks (CA): Sage; 2003. p. 175–193.
   Google Scholar
• Carr ECJ, Worth A. The use of the telephone interview for research. Nurs Times Res. 2001;6(1):511–524.
   Google Scholar
• Drabble L, Trocki KF, Salcedo B, et al. Conducting qualitative interviews by telephone: lessons learned from a study of alcohol use among sexual minority and heterosexual women. Qual Soc Work. 2016;15(1):118–133.
   PubMed Web of Science ®Google Scholar