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. 2018 Sep;44(5):704-710.
doi: 10.1111/cch.12580. Epub 2018 Jun 25.

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

E Courtney  1 , G Kiernan  1 , S Guerin  2 , K Ryan  3 , R McQuillan  3
Affiliations

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

E Courtney et al. Child Care Health Dev. 2018 Sep.

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.

Keywords: childhood; experiences of providing care; life-limiting neurodevelopmental disability; mothers.

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References

REFERENCES

    1. Alexander, E., Rennick, J., Carnevale, F., & Davis, M. (2002). Daily struggles: Living with long term childhood technology dependence. Canadian Journal of Nursing Research, 34(4), 7-14.
    1. Balling, K., & McCubbin, M. (2001). Hospitalised children with chronic illness: Parental caregiving needs and valuing expertise. Journal of Pediatric Nursing, 16(2), 110-119.
    1. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101.
    1. Carnevale, F., Alexander, E., Davis, M., Rennick, J., & Troini, R. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Paediatrics, 117(1), 48-60.
    1. Courtney, E. (2011). Exploring the palliative care needs and delivery of services to young children with life-limiting neurodevelopmental disabilities and their families: A mixed methods study. PhD thesis, Dublin City University. Available from http://doras.dcu.ie/16684/.

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