Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Patient Education and Counseling

Volumn 100, Issue 1, 2017, Pages 76-92

  Heath, Gemma ^a   Farre, Albert ^b,c   Shaw, Karen ^c  

^a ASTON UNIVERSITY   (United Kingdom)

^b BIRMINGHAM CHILDREN S HOSPITAL   (United Kingdom)

^c UNIVERSITY OF BIRMINGHAM   (United Kingdom)

Author keywords

Child health; Long term conditions; Parents; Qualitative research; Transition

Indexed keywords

ADULT SERVICE; ADULTHOOD; CHILD; CHILD BEHAVIOR; CHILD PARENT RELATION; CHILD READINESS; CHRONIC DISEASE; COMPETENCE; DATA EXTRACTION; DATA SYNTHESIS; EXPERIENCE; FACTUAL DATABASE; FAMILY; HEALTH CARE; HEALTH CARE AUTONOMY; HEALTH CARE CONCEPTS; HEALTH SERVICE; HEALTHCARE TRANSITION; HUMAN; INDEPENDENCE; LONG TERM CARE; MEDICAL CARE; PARENT EXPERIENCE; PARENTAL ATTITUDE; PEDIATRICS; PERSONAL AUTONOMY; PERSONAL EXPERIENCE; PRIORITY JOURNAL; QUALITY CONTROL; REVIEW; SELF CARE; SOCIAL SUPPORT; SYSTEMATIC REVIEW; THEMATIC ANALYSIS; TRANSITIONAL HEALTHCARE; WELLBEING; YOUNG PERSON CONDITION MANAGEMENT; ADULT; CHILD HEALTH CARE; FEMALE; ORGANIZATION AND MANAGEMENT; PARENT; PERCEPTION; PSYCHOLOGY; QUALITY OF LIFE; TRANSITION TO ADULT CARE;

ADULT; CHILD; CHILD HEALTH SERVICES; CHRONIC DISEASE; FEMALE; HUMANS; PARENT-CHILD RELATIONS; PARENTING; PARENTS; PERCEPTION; QUALITY OF LIFE; TRANSITION TO ADULT CARE;

EID: 85004044990     PISSN: 07383991     EISSN: 18735134     Source Type: Journal    
DOI: 10.1016/j.pec.2016.08.011     Document Type: Review

References (87)

1. [1] Hagell, A., Coleman, J., Brooks, F., Key Data on Adolescence. 2015, Association for Young People's Health, London http://www.youngpeopleshealth.org.uk/key-data-on-adolescence.
2. [2] Kennedy, A., Sloman, F., Douglass, J.A., et al. Young people with chronic illness: the approach to transition. Intern. Med. J., 2007, 555–560.
3. [3] Dovey-Pearce, G., Christie, D., Transition in diabetes: young people move on we should too. Paediatr. Child Health 2 (2013), 174–179.
4. [4] Rutishauser, C., Akré, C., Surìs, J.-C., Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents. Eur. J. Pediatr. 17 (2011), 865–871.
5. [5] McDonagh, J.E., Kelly, D.A., The challenges and opportunities for transitional care research. Pediatr. Transplant. 14 (2010), 688–700.
6. [6] Bronfenbrenner, U., The Ecology of Human Development. 1979, Harvard University Press, Cambridge, MA.
7. [7] National Institute for Health and Care Excellence, Transition from children's to adults’ services for young people using health or social care services. NICE Guideline, 2016, National Institute for Health and Care Excellence.
8. [8] Reed-Knight, B., Blount, R.L., Gilleland, J., The transition of health care responsibility from parents to youth diagnosed with chronic illness: a developmental systems perspective. Fam. Syst. Health 32 (2014), 219–234.
9. [9] Sasse, R.A., Aroni, R.A., Sawyer, S.M., et al. Confidential consultations with adolescents: an exploration of Australian parents’ perspectives. J. Adolesc. Health 5 (2013), 786–791.
10. [10] Williams, B., Mukhopadhyay, S., Dowell, J., et al. From child to adult: an exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis. Social Sci. Med., 2007, 2135–2146.
11. [11] Duncan, R.E., Jekel, M., O'Connell, M.A., et al. Balancing parental involvement with adolescent friendly health care in teenagers with diabetes: are we getting it right?. J. Adolesc. Health 55 (2014), 59–64.
12. [12] Gannoni, A.F., Shute, R.H., Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study. Clin. Child Psychol. Psychiatry 15 (2010), 39–53.
13. [13] Lugasi, T., Achille, M., Stevenson Patients', M., Perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J. Adolesc. Health 48 (2011), 429–440.
14. [14] Betz, C.L., Lobo, M.L., Nehring, W.M., et al. Voices not heard: a systematic review of adolescents’ and emerging adults’ perspectives of health care transition. Nurs. Outlook 61 (2013), 311–336.
15. [15] Fegran, L., Hall, E.O.C., Uhrenfeldt, L., et al. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int. J. Nurs. Stud. 51 (2014), 123–135.
16. [16] Watson, R., Parr, J.R., Joyce, C., et al. Models of transitional care for young people with complex health needs: a scoping review. Child Care Health Dev. 37 (2011), 780–791.
17. [17] Kime, N., Bagnall, A.M., Day, R., Systematic Review of Transition Models for Young People with Long-term Conditions: A Report for NHS Diabetes., 2013 http://eprints.leedsbeckett.ac.uk/606/1/Systematic%20review%20of%20transition%20models%20for%20young%20people%20with%20long-term%20conditions%20-%20A%20report%20for%20NHS%20Diabetes.pdf.
18. [18] While, A., Forbes, A., Ullman, R., et al. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child: Care Health Dev. 30 (2004), 439–452.
19. [19] Crowley, R., Wolfe, I., Lock, K., et al. Improving the transition between paediatric and adult healthcare: a systematic review. Arch. Dis. Child. 96 (2011), 548–553.
20. [20] Coffey, J.S., Parenting a child with chronic illness: a metasynthesis. Pediatr. Nurs. 3 (2006), 51–59.
21. [21] Eccleston, C., Palermo, T.M., Fisher, E., et al. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst. Rev., 8, 2012.
22. [22] Morawska, A., Calam, R., Fraser, J., Parenting interventions for childhood chronic illness: a review and recommendations for intervention design and delivery. J. Child Health Care 1 (2015), 5–17.
23. [23] Moher, D., Liberati, A., Tetzlaff, J., et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Br. Med. J. 33 (2009), b2535–6.
24. [24] Thomas, J., Harden, A., Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med. Res. Methodol., 8, 2008.
25. [25] Centers for Disease Control, U.S., Prevention, About Chronic Disease: Definition, Overall Burden, and Cost Effectiveness of Prevention. 2003, US Centers for Disease Control and Prevention.
26. [26] CASP. Critical Appraisal Skills Programme (CASP), Qualitative Research Checklist CASP Checklists Secondary Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist CASP Checklists. 2014, CASP http://media.wix.com/ugd/dded87_29c5b002d99342f788c6ac670e49f274.pdf.
27. [27] Carroll, C., Booth, A., Lloyd-Jones, M., Should we exclude inadequately reported studies from qualitative systematic reviews? An evaluation of sensitivity analyses in two case study reviews. Qual. Health Res. 2 (2012), 1425–1434.
28. [28] Allen, D., Channon, S., Lowes, L., et al. Behind the scenes: the changing roles of parents in the transition from child to adult diabetes service. Diabet. Med. 28 (2011), 994–1000.
29. [29] Schilling, L.S., Knafl, K.A., Grey, M., Changing patterns of self-management in youth with type I diabetes. J. Pediatr. Nurs. 2 (2006), 412–424.
30. [30] Buford, T.A., Transfer of asthma management responsibility from parents to their school-age children. J. Pediatr. Nurs. 1 (2004), 3–13.
31. [31] Newbould, J., Smith, F., Francis, S.-A., ‘I'm fine doing it on my own’: partnerships between young people and their parents in the management of medication for asthma and diabetes. J. Child Health Care 12 (2008), 116–128.
32. [32] Giarelli, E., Bernhardt, B.A., Mack, R., et al. Adolescents’ transition to self-management of a chronic genetic disorder. Qual. Health Res. 1 (2008), 441–457.
33. [33] Hanna, K.M., Guthrie, D., Parents’ and adolescents’ perceptions of helpful and non-helpful support for adolescents’ assumption of diabetes management responsibility. Issues Compr. Pediatr. Nurs. 24 (2001), 209–223.
34. [34] Davies, H., Rennick, J., Majnemer, A., Transition from pediatric to adult health care for young adults with neurological disorders: parental perspectives. Can. J. Neurosci. Nurs. 3 (2011), 32–39.
35. [35] van Staa, A.L., Jedeloo, S., van Meeteren, J., et al. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child: Care Health Dev., 2011, 821–832.
36. [36] Young, N.L., Barden, W.S., Mills, W.A., et al. Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Phys. Occup. Ther. Pediatr. 2 (2009), 345–361.
37. [37] Schultz, R.J., Parental experiences transitioning their adolescent with epilepsy and cognitive impairments to adult health care. J. Paediatr. Healthcare 2 (2013), 359–366.
38. [38] Hauser, E.S., Dorn, L., Transitioning adolescents with sickle cell disease to adult-centred care. Pediatr. Nurs. 2 (1999), 479–488.
39. [39] Akre, C., Suris, J.-C., From controlling to letting go: what are the psychosocial needs of parents of adolescents with a chronic illness?. Health Educ. Res. 29 (2014), 764–772.
40. [40] Ivey, J.B., Wright, A., Dashiff, C.J., Finding the balance: adolescents with type 1 diabetes and their parents. J. Pediatr. Health Care 2 (2009), 10–18.
41. [41] Kirk, S., Fraser, C., Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: a qualitative study. Palliat. Med. 2 (2014), 342–353.
42. [42] Mellin, A.E., Neumark-Sztainer, D., Patterson, J.M., Parenting Adolescent Girls with Type 1 Diates: Parents’ Perspectives. Journal of Paediatric Psychology 2 (2002), 221–230.
43. [43] Giarelli, E., Bernhardt, B.A., Pyeritz, R.E., Attitudes antecedent to transition to self-management of a chronic genetic disorder. Clin. Genet. 7 (2008), 325–337.
44. [44] Sparacino, P.S.A., Tong, E.M., Messias, D.K.H., et al. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart Lung 2 (1997), 187–195.
45. [46] Hartman, A., DePoy, E., Francis, C., et al. Adolescents with special health care needs in transition: three life histories. Soc. Work Health Care 314 (2000), 3143–3157.
46. [48] Sonneveld, H.M., Strating, M.M.H., van Staa, A.L., et al. Gaps in transitional care: what are the perceptions of adolescents, parents and providers?. Child Care Health Dev. 39 (2012), 69–80.
47. [49] Kleop, M., Hendry, L.B., Letting go or holding on? Parents’ perceptions of their relationships with their children during emerging adulthood. Br. J Dev. Psychol. 2 (2010), 817–834.
48. [50] Seiffge-Krenke, I., Leaving home or still in the nest? Parent–child relationships and psychological health as predictors of different leaving home patterns. Dev. Psychol. 42 (2006), 864–876.
49. [51] Dashiff, C., Vance, D., Abdullatif, H., et al. Parenting, autonomy and self-care of adolescents with Type 1 diabetes. Child: Care Health Dev. 3 (2008), 79–88.
50. [52] Arnett, J.J., Emerging adulthood: a theory of development from the late teens through the twenties. Am. Psychol. 5 (2000), 469–480.
51. [53] Iles, N., Lowton, K., What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?. Health Soc. Care Commun. 18 (2010), 21–29.
52. [54] Lambert, V., Keogh, D., Striving to live a normal life: a review of children and young people's experience of feeling different when living with a long term condition. J. Pediatr. Nurs. 3 (2014), 63–77.
53. [55] Geerts, E., van de Wiel, H., Tamminga, R., A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness-related distress and health-related Quality of Life. Haemophilia 14 (2008), 1007–1013.
54. [56] Viner, R.M., Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch. Dis. Child. 93 (2008), 160–163.
55. [57] Kieckhefer, G.M., Trahms, C.M., Churchill, S.S., et al. Measuring parent-child shared management of chronic illness. Pediatr. Nurs. 35 (2009), 101–108.
56. [58] Lowton, K., Parents and partners: lay carers’ perceptions of their role in the treatment and care of adults with cystic fibrosis. J. Adv. Nurs. 39 (2002), 174–181.
57. [59] Doyle, M., Werner-Lin, A., That eagle covering me: transitioning and connected autonomy for emerging adults with cystinosis. Pediatr. Nephrol. 3 (2015), 281–291.
58. [60] Duncan, R.E., Vandeleur, M., Derks, A., et al. Confidentiality with adolescents in the medical setting: what do parents think?. J. Adolesc. Health 4 (2011), 428–430.
59. [61] Modi, A.C., Pai, A.L., Hommel, K.A., et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics 47 (2012), 473–485.
60. [62] Meah, A., Callery, P., Milnes, L., et al. Thinking ‘taller’: sharing responsibility in the everyday lives of children with asthma. J. Clin. Nurs. 1 (2010), 1952–1960.
61. [63] Kingsnorth, S., Gall, C., Beayni, S., et al. Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child Care Health Dev. 37 (2011), 833–840.
62. [64] Schwartz, L.A., Tuchman, L.K., Hobbie, W.L., et al. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 37 (2011), 883–895.
63. [65] Schwartz, L.A., Brumley, L.D., Tuchman, L.K., et al. Stakeholder validation of a model of readiness for transition to adult care. JAMA Pediatr. 16 (2013), 939–946.
64. [66] Wang, G., Burns McGrath, B., Watts, C., Health care transitions among youth with disabilities or special health care needs (SHCN): an ecological approach. J. Pediatr. Nurs. 25 (2010), 505–550.
65. [67] Hepburn, C.M., Cohen, E., Bhawra, J., et al. Health system strategies supporting transition to adult care. Arch. Dis. Child. 100 (2015), 559–564.
66. [68] Leventhal, H., Meyer, D., Nerenz, D., The common-sense representations of illness danger. Rachman, S., (eds.) Medical Psychology, 1980, Pergamon, New York.
67. [69] Leventhal, H., Brissette, I., Leventhal, E., Self-regulation of health and illness. Cameron, L.D., Leventhal, H., (eds.) The Self-Regulation of Health and Ilness Behaviour, 2003, Routledge, London.
68. [70] Klok, T., Brand, P.L., Bomhof-Roordink, H., et al. Parental illness perceptions and medication perceptions in childhood asthma, a focus group study. Acta Paediatr. 100 (2011), 248–252.
69. [71] Bandura, A., Self Efficacy: The Exercise of Control. 1997, W.H. Freeman, New York.
70. [72] Vygotsky, L., Mind in Society: The Development of Higher Psychological Processes. 1978, Harvard University Press, Cambridge, Mass.
71. [73] Sawyer, S.M., Drew, S., Yeo, M.S., et al. Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369 (2007), 1481–1489.
72. [74] van Staa, A.L., van der Stege, H.A., Jedeloo, S., et al. Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J. Adolesc. Health 48 (2011), 295–302.
73. [75] Doyle, M.H., Kaskel, F., That eagle covering me: transitioning and connected autonomy for emerging adults with cystinosis. Pediatr. Nephrol. 2 (2013), 1367–1368.
74. [76] Reiss, J.G., Gibson, R.W., Walker, L.R., Health care transition: youth, family, and provider perspectives. Pediatrics 11 (2005), 112–120.
75. [77] Brodie, L., Crisp, J., McCormack, B., et al. Journeying from nirvana with mega-mums and broken hearts: the complex dynamics of transition from paediatric to adult settings. Int. J. Child Adolesc. Health 3:4 (2010), 517–526.
76. [78] Moola, F.J., Norman, M.E., Down the rabbit hole: enhancing the transition process for youth with cystic fibrosis and congenital heart disease by re-imagining the future and time. Child: Care Health Dev. 37:6 (2011), 841–851.
77. [79] Anthony, S.J., Kaufman, M., Drabble, A., et al. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am. J. Transplant. 9 (2009), 614–619.
78. [80] Gray, N., Glazebrook, C., Elliot, R., et al. Have you had that? control and responsibility in medication adherence. J. Adolesc. Health, 48(Suppl. 1), 2011, 2.
79. [81] Shaw, K.L., Southwood, T.R., McDonagh, J.E., User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology, 2004, 1–9.
80. [82] Williams, C., Alert assistants in managing chronic illness: the case of mothers with teenage sons. Sociol. Health Illn. 22:2 (2000), 254–272.
81. [83] Rehm, R.S., Fisher, L.T., Factors delaying primary care health transitions for youth with disabilities. Commun. Nurs. Res. 43 (2010), 198–199.
82. [84] Porter, J.S., Graff, C., Lopez, A.D., et al. Transition from pediatric to adult care in sickle cell disease: perspectives on the family role. J. Pediatr. Nurs. 29 (2014), 158–167.
83. [85] Osterlund, C.S., Dosa, N.P., Arnott-Smith, C., Mother knows best: medical record management for patients with spina bifida during the transition from pediatric to adult care. Annual Symposium proceedings / AMIA Symposium. AMIA Symp., 2005, 580–584.
84. [86] Magill-Evans, J., Wiart, L., Darrah, J., et al. Beginning the transition to adulthood: the experiences of six families with youths with cerebral palsy. Phys. Occup. Ther. Pediatr. 25:3 (2005), 19–35.
85. [87] Dupuis, F., Duhamel, F., Gendron, S., Transitioning care of an adolescent with cystic fibrosis: development of systemic hypothesis between parents, adolescents, and health care professionals. J. Fam. Nurs. 17:3 (2011), 291–311.
86. [88] Casillas, J., Kahn, L., Doose, M., et al. Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psycho-Oncology 19:9 (2010), 982–990.
87. [89] Williams, B., Coyle, J., Dowell, J., et al. Living with cystic fibrosis: an exploration of the impact of beliefs on emotional coping and motivation to adhere to treatment regimes among parents of children with cystic fibrosis in Scotland. Int. J. Disabil. Community Rehabil. 6:1 (2007), 1703–3381.