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Title: “Is this my life?”Meaning and sense-making as key determinants of parents’ experience when caring for children with disabilities, life-threatening/life-limiting illness or technology dependence.
Author: Whiting, Mark
Awarding Body: London South Bank University
Current Institution: London South Bank University
Date of Award: 2009
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Abstract:
Parenthood presents many challenges. For parents of children with disabilities and complex health needs those challenges are often very considerable indeed. This study is concerned with the experiences of the parents of 34 such children. NHS Clinical staff working within one English county nominated parents to this study based upon their professional judgment that the child matched with one of three ‘diagnostic’ sub-groups: disability, life-threatening/life-limiting illness or technology dependence. Parents participated in 33 semi-structured interviews which sought to explore their experiences in relation to three pre-declared study themes – ‘impact’, ‘need for help and support’ and ‘sense-making’. A qualitative research approach which incorporated elements of grounded theoretical method was applied throughout the processes of data collection and analysis. This revealed a series of categories and subcategories related to the original study themes as well as a fourth theme ‘battle-ground’ which emerged entirely from within the parental accounts of their experiences. Initial analysis was carried out on three separate data-sets based upon the sub-groups into which parents were nominated to the study. This study introduced ‘mind-maps’ as a novel mechanism for affirming and verifying qualitative research data. Three discrete sets of illustrative ‘mind-maps’ (based on the study sub-groups) were constructed, within each of which were delineated an array of categories, subcategories and individual data elements clustered around each of the central study themes. In order to seek affirmation of the categories and subcategories within the emerging framework, a random sample of parents from each sub-group were invited to participate in a follow-up interview within which they were required to examine and comment upon their own sub-group mind-maps. Parental comments allowed for further refinement of the mind-maps and the resultant data was examined in order to identify areas of consistency and difference in parental experience across the three sub-groups. As its contribution to new knowledge, the study revealed major areas of consistency of parental experience across the three study sub-groups. In relation to the themes upon which this study focused, and the categories which emerged from the data, there were no major areas of difference amongst the sub-groups. The study identified the pivotal role of ‘sensemaking’ in informing parental perceptions of ‘impact’ and ‘need for help and support’. Through a process of constant comparative analysis, parental sense-making was linked to a range of personal, cultural and experiential factors including the contribution of professional staff as sources of help and support. In large part, the role of health, education and social care staff was regarded very positively by parents who identified a number of key personal attributes amongst professionals upon which they placed high value. A fourth study theme, ‘battleground’, emerged from within the study data-set – this theme was related in large part by parents in the context of negative aspects of their relationships with professional staff. Several of areas of unmet need were identified by parents in all three study sub-groups, the most consistent of which was the need for respite, a break from caring.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID: uk.bl.ethos.593650  DOI: Not available
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