Parents caring for children with normal life span threatening disabilities: a narrative review of literature

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.

Current clinical practice in 24-hour postural management and the impact on carers and service users with severe neurodisability

“…There is minimal evidence on the impact of postural management on family life (Gmelig Meyling et al., 2018), with researchers calling for more qualitative methods to examine the emotional implications of providing highly specialist equipment (Nicolson et al., 2012). The current study identified important new findings regarding carers’ feelings of fear and parents needing to become strong advocates, which may reflect the broader daily challenges in caring for someone with complex neurodisability (Geuze and Goossensen, 2018; Nicholl and Begley, 2012). Indeed, previous research has echoed parental stress for carers of children with physical disabilities, with Egilson (2011) reporting positive support from therapy services but also frustrations including a lack of consideration regarding the family’s needs and a desire for more information from therapists.…”

“…Previous studies identified frustrations such as the bulky and restrictive nature of equipment (Hutton and Coxon, 2011; McDonald et al., 2007). The current participants identified additional frustrating factors including loss of identity, the burden of equipment costs, inadequate focus on prevention and wider accessibility difficulties, reflecting the many challenges faced when living with such complex neurodisability (Geuze and Goossensen, 2018; Nicholl and Begley, 2012).…”

Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs

“…Previous research has identified that parents of children with PIMD often struggle with finding and maintaining a careful balance between the many matters affecting them ( Breitkreuz et al, 2014 ; Geuze & Goossensen, 2019 ; Whiting, 2014 ). Studies have identified impacts on physical and psychological (mental) health and described challenges regarding the loss of free time and social activities, financial difficulties related to reduced income and higher costs, lack of access to professional services and the impacts on care for siblings and the life partner relationship ( Muir & Strnadová, 2014 ; Tadema & Vlaskamp, 2010 ; Woodgate et al, 2012 ).…”

“…Studies have also revealed positive experiences, namely, increased closeness in families and communities, increased spirituality, enhanced arrangement of personal resources and a sense of fulfillment for having done everything that could be done for the benefit of the child ( Graungaard, 2007 ; Hastings et al, 2005 ; Luijkx, 2016 ). Research has indicated that the possible implications associated with parenting a child with PIMD are strongly associated with procedures and practices within the healthcare and service systems that impact family life and create collateral stress ( Geuze & Goossensen, 2019 ; Peer & Hillman, 2014 ; Woodgate et al, 2015 ).…”

Family Sense-Making After a Down Syndrome Diagnosis

“…How will they face an unexpected experience of parenting a child who is different from typical children? Parenting a child with an intellectual disability, such as Down syndrome, poses a challenge to self-identity (Geuze & Goossensen, 2018; Lou et al, 2018; Whiting, 2013, 2014); How the parent embraces or merely adapts to such an identity depends, in part, on whether parents have access to cultural narratives and resources to inform their performance as a parent in ways that are socially understood and personally meaningful (Solomon, 2012; Van Riper, 2007b).…”