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Making the invisible visible : home care provided by parents of children with complex needs

thesis
posted on 2023-05-27, 23:29 authored by Damhnat McCannDamhnat McCann
Home is the preferred site of care for children with complex needs. While parents describe the positive benefits that the child with complex needs brings to their lives, the care of these children can have a significant impact on the family, the home and on the physical, emotional, and mental health of the parents. Methods The research presented in this thesis aims to make more visible the often invisible work undertaken by parents caring for a child with complex needs. The multi method program of research contains a series of individual studies covering the daily care requirements and impact on the home environment when living with a child with complex needs. The studies include: a systematic review of the daily time use of parents of children with complex needs; a mixed studies systematic review that provides a comprehensive overview of night care and associated sleep disturbances; a detailed time use study with 10 mothers of children with complex needs using a recoded version of the Australian Time Use Survey; a pilot study exploring the competence, enjoyment and value placed on childcare related activities by those 10 mothers; and a photo-interview study exploring home adaptation and other strategies used by parents living with a child with Autism Spectrum Disorder. The thesis is structured as a thesis by publication, with the individual studies written as complete papers. Results Several key findings emerge across the individual studies contained within the research program: 1) parents of children with complex needs carry a significant caregiving burden based on the amount and intensity of the care they provide; 2) the intensity of the care results from the type of care that some children require, but also from the fact that parents frequently undertake two childcare related activities at the same time or combine childcare related activities with other activities; 3) the vigilance associated with caring for a child with complex needs requires a more intense and constant level of supervision or monitoring than is normally associated with parenting; 4) parents enjoy activities associated more with parenting rather than the caregiving role and actively dislike undertaking healthcare related activities with or for their child; 5) caring for a child with complex needs impacts on family relationships and the home environment. The story that emerged through these findings provided the context for a rethinking of the vigilance required by parents of children with complex needs, leading to a novel application of the concept of continuous partial attention to the care of children with complex needs presented as a published paper within the thesis. Conclusion Parents of children with complex needs provide a remarkable level of care, but this care takes a physical, mental and emotional toll on the parents and the family. The research presented in this thesis provides previously missing detail regarding key aspects of the parental caregiving experience and the impact on family and home life, and reinforces the fact that parents of children with complex needs continue to lack the level of support they require in order to incorporate an intense caregiving role into their lives and the lives of their families. Viewing the caregiving role of parents of children with complex needs through the lens of continuous partial attention contributes a better understanding of why these parents find the caregiving experience uplifting, but also draining and exhausting, and may lead to improved approaches to providing support for the parents. Parents need to receive a break from their caregiving role to enable them to switch off, even briefly, from the responsibility that they carry. Finding a way to support these parents in a manner that emphasises the positives, reduces the burden in areas that they find most difficult, and strengthens family relationships needs to be a primary focus for researchers and health professionals involved in the care of children with complex needs and their families.

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Copyright 2016 the Author Chapter 3 includes a published article which has been remove for copyright or proprietary reasons. Chapter 4 includes a published article which has been remove for copyright or proprietary reasons. Chapter 7 appears to be the equivalent of a post-print version of an article published as: McCann, D., Bull, R., Wizenberg, T., 2016. Competence, value and enjoyment of childcare activities undertaken by parents of children with complex needs, Journal of pediatric nursing 31(20, 127‚Äö-132. Chapter 9 includes a published article which has been remove for copyright or proprietary reasons. Appendicies 3, 6, 7, 10 are published and have been removed. Appendix 8 has been removed by request of the author.

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