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J Child Health Care. 2013 Mar;17(1):92-108. doi: 10.1177/1367493512447089. Epub 2012 Dec 5.

Impact, meaning and need for help and support: The experience of parents caring for children with disabilities, life-limiting/life-threatening illness or technology dependence.

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  • 1Hertfordshire Community NHS Trust, UK


Parenting a child with complex needs or disabilities is a challenging proposition. This study, which drew upon of the experiences of the parents of 34 children (in 33 families), set out to explore the themes of impact, need for help and support and meaning/sense-making as they were related by parents. Data were collected using semi-structured interviews, and an emerging theoretical framework was validated through the use of a series of mind-maps(®) which were presented to individual parents as the basis for a second round (verificational) interview. Parents were nominated into the study by health care professions who were asked to identify the subject children to one of three separate sub-groups: children with a disability; children with a life-limiting/life-threatening illness or children with a technology dependence. Comparisons were made between the three study sub-groups in order to identify areas of consistency and of inconsistency. A fourth study theme - 'battleground' emerged from entirely within the data set. Sense-making occupied a central position within the overall theoretical framework for the study and parental perception of 'battleground' presented as significant element of parental sense-making, particularly in the context of their relationships with professional staff.


Disability; complex health needs; mind-maps; parental experience; sense-making

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