A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers.
Adaptation, Psychological
Adult
Caregivers
/ education
Cerebral Palsy
/ psychology
Child
Child, Preschool
Disabled Children
/ psychology
Education, Nonprofessional
/ methods
Female
Ghana
/ epidemiology
Health Knowledge, Attitudes, Practice
Humans
Infant
Longitudinal Studies
Male
Middle Aged
Poverty
Program Development
Qualitative Research
Social Stigma
Social Support
Stress, Psychological
Ghana
caregiver
cerebral palsy
child disability
evaluation
wellbeing
Journal
Child: care, health and development
ISSN: 1365-2214
Titre abrégé: Child Care Health Dev
Pays: England
ID NLM: 7602632
Informations de publication
Date de publication:
01 2019
01 2019
Historique:
received:
28
03
2018
revised:
09
07
2018
accepted:
12
08
2018
pubmed:
28
9
2018
medline:
19
12
2019
entrez:
28
9
2018
Statut:
ppublish
Résumé
Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing. A qualitative longitudinal study was conducted to investigate the impact of a training programme, "getting to know cerebral palsy," with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes. Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are "not on their own." While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network. This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.
Sections du résumé
BACKGROUND
Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.
METHODS
A qualitative longitudinal study was conducted to investigate the impact of a training programme, "getting to know cerebral palsy," with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes.
RESULTS
Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are "not on their own." While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network.
CONCLUSIONS
This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.
Identifiants
pubmed: 30259548
doi: 10.1111/cch.12618
pmc: PMC7379711
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
45-53Informations de copyright
© 2018 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd.
Références
J Pediatr. 2000 Dec;137(6):769-76
pubmed: 11113832
Psychol Health Med. 2006 Aug;11(3):307-34
pubmed: 17130068
Child Care Health Dev. 2012 Nov;38(6):878-88
pubmed: 22082112
Dev Med Child Neurol. 2011 Sep;53 Suppl 4:68-70
pubmed: 21950398
PLoS One. 2018 Sep 4;13(9):e0202096
pubmed: 30180171
Health Educ Res. 2001 Jun;16(3):255-68
pubmed: 11497110
Int Health. 2010 Mar;2(1):25-35
pubmed: 24037047
Lancet. 2010 Apr 3;375(9721):1182-92
pubmed: 20207411
Int J Environ Res Public Health. 2018 Mar 14;15(3):
pubmed: 29538291
Int Nurs Rev. 2013 Sep;60(3):344-50
pubmed: 23961796
Health Policy Plan. 2005 Jan;20(1):25-34
pubmed: 15689427
PLoS One. 2017 Aug 3;12(8):e0182214
pubmed: 28771637
Semin Pediatr Neurol. 2014 Mar;21(1):30-5
pubmed: 24655402
BMC Health Serv Res. 2016 Apr 27;16:152
pubmed: 27117326
Eur J Psychotraumatol. 2014 Oct 01;5:
pubmed: 25317257
Child Care Health Dev. 2011 Mar;37(2):175-83
pubmed: 20645990
J Health Commun. 2014;19 Suppl 1:142-63
pubmed: 25207451
Am J Public Health. 2013 Aug;103(8):1367-75
pubmed: 23763397
Soc Sci Med. 2003 Oct;57(8):1361-74
pubmed: 12927467
Disabil Rehabil. 2015;37(16):1470-6
pubmed: 25323396
Int J Ment Health Syst. 2012 Mar 21;6(1):1
pubmed: 22436354
Afr J Disabil. 2015 Aug 13;4(1):168
pubmed: 28730030
Child Care Health Dev. 2019 Jan;45(1):45-53
pubmed: 30259548
J Child Neurol. 2015 Jul;30(8):963-71
pubmed: 25296926
J Health Psychol. 2008 Sep;13(6):764-75
pubmed: 18697889
Arch Dis Child. 2014 Sep;99(9):840-8
pubmed: 24647995
Child Care Health Dev. 2017 Jul;43(4):608-620
pubmed: 28393382