2,530
Views
42
CrossRef citations to date
0
Altmetric
Research Paper

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

, &
Pages 761-767 | Received 09 Dec 2014, Accepted 05 Jun 2015, Published online: 23 Jun 2015

References

  • Neuhauser H, Poethko-Müller C. KiGGS Study Group. [Chronische Erkrankungen und impfpräventable Infektionserkrankungen bei Kindern und Jugendlichen in Deutschland: Ergebnisse der KiGGS-Studie – Erste Folgebefragung (KiGGS Welle 1).] Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2014;57:779–88
  • Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol 2013;38:809–28
  • Berge JM, Patterson JM, Rueter M. Marital satisfaction and mental health of couples with children with chronic health conditions. Fam Syst Health 2006;24:267–85
  • Bompori E, Niakas D, Nakou I, et al. Comparative study of the health-related quality of life of children with epilepsy and their parents. Epilepsy Behav 2014;41C:11–17
  • Lindström C, Aman J, Norberg AL. Increased prevalence of burnout symptoms in parents of chronically ill children. Acta Paediatr 2010;99:427–32
  • Dehn LB, Korn-Merker E, Pfäfflin M, et al. The impact on family scale: psychometric analysis of long and short forms in parents of children with epilepsy. Epilepsy Behav EB 2014;32:21–6
  • Hatton C, Emerson E, Kirby S, et al. Majority and minority ethnic family carers of adults with intellectual disabilities: perceptions of challenging behaviour and family impact. J Appl Res Intellect Disabil 2010;23:63–74
  • Lach LM, Kohen DE, Garner RE, et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil 2009;31:741–52
  • Benjak T, Vuletić Mavrinac G, Pavić Simetin I. Comparative study on self-perceived health of parents of children with autism spectrum disorders and parents of non-disabled children in Croatia. Croat Med J 2009;50:403–9
  • Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev 2007;33:180–7
  • Hovén EI, Lannering B, Gustafsson G, Boman KK. Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study. Psychooncology 2013;22:160–7
  • Thyen U, Sperner J, Morfeld M, et al. Unmet health care needs and impact on families with children with disabilities in Germany. Ambul Pediatr 2003;3:74–81
  • Heath JA, Lintuuran RM, Rigguto G, et al. Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol 2006;23:439–48
  • Fonseca A, Nazaré B, Canavarro MC. The role of satisfaction with social support in perceived burden and stress of parents of six-month-old infants with a congenital anomaly: actor and partner effects. J Child Health Care 2014;18:178–91
  • Werner H, Latal B, Valsangiacomo Buechel E, et al. The impact of an infant’s severe congenital heart disease on the family: a prospective cohort study. Congenit Heart Dis 2014;9:203–10
  • Heiman T, Berger O. Parents of children with Asperger syndrome or with learning disabilities: family environment and social support. Res Dev Disabil 2008;29:289–300
  • Cramm JM, Nieboer AP. Psychological well-being of caregivers of children with intellectual disabilities: using parental stress as a mediating factor. J Intellect Disabil JOID 2011;15:101–13
  • Bompori E, Niakas D, Nakou I, et al. Comparative study of the health-related quality of life of children with epilepsy and their parents. Epilepsy Behav EB 2014;41C:11–17
  • Haverman L, van Oers HA, Maurice-Stam H, et al. Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey. Pediatr Rheumatol Online J 2014;12:34. doi: 10.1186/1546-0096-12-34
  • Huang Y-P, Chang M, Chi Y-L, Lai F-C. Health-related quality of life in fathers of children with or without developmental disability: the mediating effect of parental stress. Qual Life Res 2014;23:175–83
  • Kim KR, Lee E, Namkoong K, et al. Caregiver’s burden and quality of life in mitochondrial disease. Pediatr Neurol 2010;42:271–6
  • Ware J, Kosinski M, Keller SD. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996;34:220–33
  • Ware JE, Kosinski M, Keller SD, QualityMetric Incorporated, New England Medical Center Hospital, Health Assessment Lab. SF-12: how to score the SF-12 physical and mental health summary scales. Lincoln (RI)/Boston (MA): QualityMetric Inc./Health Assessment Lab; 2002
  • Gandek B, Ware JE, Aaronson NK, et al. Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998;51:1171–8
  • Ravens-Sieberer U, Morfeld M, Stein RE, et al. The testing and validation of the German version of the impact on family scale in families with children with disabilities. Psychother Psychosom Med Psychol 2001;51:384–93
  • Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes 2008;6:91. doi: 10.1186/1477-7525-6-91
  • Stein REK, Jessop DJ. The impact on family scale revisited: further psychometric data. J Dev Behav Pediatr 2003;24:9–16
  • Busch SH, Barry CL. Mental health disorders in childhood: assessing the burden on families. Health Aff 2007;26:1088–95
  • Bek N, Simsek IE, Erel S, et al. Turkish version of impact on family scale: a study of reliability and validity. Health Qual Life Outcomes 2009;7:4. doi: 10.1186/1477-7525-7-4
  • McGill P, Papachristoforou E, Cooper V. Support for family carers of children and young people with developmental disabilities and challenging behaviour. Child Care Health Dev 2006;32:159–65
  • Freedman RI, Boyer NC. The power to choose: supports for families caring for individuals with developmental disabilities. Health Soc Work 2000;25:59–68
  • Roper SO, Allred DW, Mandleco B, et al. Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Fam Syst Health 2014;32:241–6
  • Şimşek İE, Erel S, Şimşek TT, et al. Factors related to the impact of chronically disabled children on their families. Pediatr Neurol 2014;50:255–61
  • Parish SL, Rose RA, Dababnah S, et al. State-level income inequality and family burden of US families raising children with special health care needs. Soc Sci Med 2012;74:399–407
  • Wodehouse G, McGill P. Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful? J Intellect Disabil Res 2009;53:644–53
  • Kofahl C, Lüdecke D. Familie im Fokus – Die Lebens- und Versorgungssituation von Familien mit chronisch kranken und behinderten Kindern in Deutschland. Ergebnisse der Kindernetzwerk-Studie. [Family in focus – life and caring situation of families with chronically ill or disabled children. Results of the Kindernetzwerk-study.] Herausgegeben vom AOK-Bundesverband. Berlin: KomPart; 2014
  • Kratz L, Uding N, Trahms CM, et al. Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships. Fam Syst Health 2009;27:303–13
  • Newton K, Lamarche K. Take the challenge: strategies to improve support for parents of chronically ill children. Home Health Nurse 2012;30:E1–8
  • NHS England. Transforming participation in health and care ‘The NHS belongs to us all’. Available from: http://www.england.nhs.uk/wp-content/uploads/2013/09/trans-part-hc-guid1.pdf [last accessed 23 April 2015]
  • European Council. Council recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02). Available from: http://ec.europa.eu/health/rare_diseases/national_plans/detailed/index_en.htm [last accessed 29 April 2015]
  • Frank M, Eidt-Koch D, Aumann I, et al. Measures to improve the health situation of patients with rare diseases in Germany. A comparison with the National Action Plan. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2014;57:1216–23
  • Kofahl C, Trojan A, Knesebeck Ovd, Nickel S. Self-help friendliness: a German approach for strengthening the cooperation between self-help groups and health care professionals. Soc Sci Med 2014;123;217–25
  • Trojan A, Nickel S, Kofahl C. Implementing “self-help friendliness” in German hospitals: a longitudinal study. Health Promot Int 2014. [Epub ahead of print]. doi: 10.1093/heapro/dau103
  • UN. Convention on the rights of persons with disabilities. Available from: http://www.un.org/disabilities/convention/conventionfull.shtml [last accessed 26 Nov 2014]

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.