Parents caring for children with normal life span threatening disabilities: a narrative review of literature.
care ethics
children with profound disabilities
family care
family coping
family wellbeing
insiderness
insiders perspective
narrative review
parents
resilience
Journal
Scandinavian journal of caring sciences
ISSN: 1471-6712
Titre abrégé: Scand J Caring Sci
Pays: Sweden
ID NLM: 8804206
Informations de publication
Date de publication:
Jun 2019
Jun 2019
Historique:
received:
20
06
2018
accepted:
27
11
2018
pubmed:
24
12
2018
medline:
7
1
2020
entrez:
22
12
2018
Statut:
ppublish
Résumé
Parents caring for children with normal life span threatening disabilities are exposed to numerous and accumulated stressors. In alignment with current approaches of evidence and value based care, it is essential to integrate knowledge of what encourages parents to hold or recover well-being in care planning and delivery. An omission in knowledge was identified concerning the outline of parents' challenges and ambitions understood from their perspective. The aim of this study was to explore the insiders perspective of parents caring for children with profound disabilities. The electronic databases CINAHL, PsycINFO, Psychology and Behavioral Sciences Collection and PubMed/MEDLINE were searched to identify relevant research knowledge (≥2005; peer-reviewed publications in English language). The PRISMA framework was used for structuring literature screening. Criteria for screening and assessing eligibility led to inclusion of 26 studies. Studies were checked for methodological quality according to the critical appraisal tool developed by Hawker. Literature was reviewed following guidelines for narrative synthesis. The majority of included studies presented similar, consistent findings though highlighted different aspects of the researched experiences by using specific scopes to understand and interpret the field of knowledge around the meaning of parenting a child with profound disabilities. The process of reviewing led to the overarching theme of keeping balance. Within this overarching theme, six dimensions were elaborated: rediscovering and maintaining family life, delicate inclusion in society, balancing within care triads, integration in service systems, financial consequences and nourishing personal resources to maintain or recover balance. Policymakers, community stakeholders and professional care deliverers should use extracted evidence in order to facilitate debated humanisation of care processes.
Sections du résumé
BACKGROUND
BACKGROUND
Parents caring for children with normal life span threatening disabilities are exposed to numerous and accumulated stressors. In alignment with current approaches of evidence and value based care, it is essential to integrate knowledge of what encourages parents to hold or recover well-being in care planning and delivery. An omission in knowledge was identified concerning the outline of parents' challenges and ambitions understood from their perspective.
AIM
OBJECTIVE
The aim of this study was to explore the insiders perspective of parents caring for children with profound disabilities.
METHOD
METHODS
The electronic databases CINAHL, PsycINFO, Psychology and Behavioral Sciences Collection and PubMed/MEDLINE were searched to identify relevant research knowledge (≥2005; peer-reviewed publications in English language). The PRISMA framework was used for structuring literature screening. Criteria for screening and assessing eligibility led to inclusion of 26 studies. Studies were checked for methodological quality according to the critical appraisal tool developed by Hawker. Literature was reviewed following guidelines for narrative synthesis.
RESULTS AND CONCLUSION
CONCLUSIONS
The majority of included studies presented similar, consistent findings though highlighted different aspects of the researched experiences by using specific scopes to understand and interpret the field of knowledge around the meaning of parenting a child with profound disabilities. The process of reviewing led to the overarching theme of keeping balance. Within this overarching theme, six dimensions were elaborated: rediscovering and maintaining family life, delicate inclusion in society, balancing within care triads, integration in service systems, financial consequences and nourishing personal resources to maintain or recover balance. Policymakers, community stakeholders and professional care deliverers should use extracted evidence in order to facilitate debated humanisation of care processes.
Types de publication
Journal Article
Review
Langues
eng
Pagination
279-297Subventions
Organisme : Hague University of Applied Sciences
Informations de copyright
© 2018 Nordic College of Caring Science.