Liesbeth Geuze1, Anne Goossensen2. 1. The Hague University of Applied Sciences, The Hague, The Netherlands. 2. University of Humanistic Studies, Utrecht, The Netherlands.
Abstract
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: The aim of this study was to explore the insiders perspective of parents caring for children with profound disabilities. METHOD: 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: 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.
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: The aim of this study was to explore the insiders perspective of parents caring for children with profound disabilities. METHOD: 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: 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.
Keywords:
care ethics; children with profound disabilities; family care; family coping; family wellbeing; insiderness; insiders perspective; narrative review; parents; resilience