Mothers' perspectives of the experience and impact of caring for their child with a life‐limiting neurodevelopmental disability

Abstract

Background: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability.Methods: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis.Results: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated.Conclusions: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.

Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study

“…LLNDDs include conditions where there are limitations in the functioning of the brain and/or neuromuscular system, encompassing congenital or acquired conditions, with a variety of neurological, genetic or metabolic aetiologies, that limit the lifespan of the individual [1,2]. While children in this group may not receive a formal diagnosis, common conditions include cystic fibrosis, muscular dystrophy, severe cerebral palsy, and chromosomal abnormalities [3].…”

“…Children with LLNDDS are generally cared for at home, though at times they may need hospital and hospice-based care. Complex medical regimes, dependence on technology and the alternation of medical crises and periods of relative stability necessitate that these children and their families have ongoing contact and interaction with many different healthcare agencies and services [ 3 – 5 ]. The complexity of providing this means that there may be tensions in the goals of care between disparate service providers, particularly in relation to cure-oriented interventions and palliative care [ 6 ], whilst service provision may face many unique challenges given this group are at the intersection of disability and palliative care contexts.…”

“…Therefore, the aim of the study is to gather expert opinion from health professionals regarding care and services for children with LLNDDs in Ireland. While there are many relevant stakeholders in this area including parents and practitioners, this study builds on previous work with these groups as discussed above [ 3 , 5 , 7 , 8 ] by adding the insights from experts. This study addresses the following research questions - How do experts rate the integration and coordination of services (including palliative care) for these children and their families?…”

Integration of Palliative Care in Services for Children with Life Limiting Neurodevelopmental Disabilities and Their Families: A Delphi Study

“…While children in this group may not receive a formal diagnosis, common conditions include cystic brosis, muscular dystrophy, severe cerebral palsy, and chromosomal abnormalities 3 .…”

Integration of Palliative Care in Services for Children with Life Limiting Neurodevelopmental Disabilities and Their Families: A Delphi Study

“…The aim of the study is to gather expert opinion from health professionals regarding care and services for children with LLNDDs in Ireland. While there are many relevant stakeholders in this area including parents and practitioners, this study builds on previous work with these groups as discussed above 3,5,7,8 by adding the insights from experts. This study addresses the following research questions -How do experts rate the integration and coordination of services (including palliative care) for these children and their families?…”