Services for children with cancer : the views of parents, professionals and relevant charities

  • Elizabeth Parry

    Student thesis: Doctoral Thesis


    In adopting a tabula rasa approach, this study sought to determine those elements of care that should be prioritised in the service provision for families with children who have cancer. An innovative approach was adopted, as opposed to a conventional thesis structure, in which the literature in this study was used both as a means of informing the research rationale and design as well as being a data source in its own right and precluded providing a conventional literature review.  Conventionally a thesis contains an introduction, chapters that review the literature, describe the methods, present results and ends with a discussion and conclusions. However, because there are many different elements to this thesis it is intended to structure it differently. Given that each form of data requires a different form of analysis, each data source has its own chapter. The reader will therefore find chapters headed The Professional Literature, The Charity Leaflets, and The Delphi Study.  Furthermore, within each chapter methodological considerations, and the reasons for the methodological decisions taken are discussed. These are made in the appropriate places. Three sources of data were investigated including the professional and relevant charity leaflets literature and a Delphi study was undertaken to obtain the views of both professionals («=31) and families («=15).  A content analysis was conducted for the first two sources of data and the first round of the Delphi study. All sources were essential in compiling a comprehensive list of desirable elements of care.
    The salient elements of care from the three sources of data were synthesised in order to identify elements that were common to all data sources. The elements of care were grouped under six headings as categories with relevant subcategories. The main categories were 'Communication and Cooperation', 'Maintaining Normality', 'Professional Issues', 'Research', 'Resources and 'Treatment Issues' for the professional literature and charity leaflets. Inter-rater reliability was established indicating a high level of agreement between both raters (Kappa = 0.677 and 0.958 respectively, p< 0.001 in both cases).
    'Partnership in Care' was the analytical framework devised from the government directives of involving patients and their carers more in the healthcare process. The framework adopted was based on the families' participation as informed, decision making and empowered families. The framework was then used as a means by which the data for all three sources could be summarised, compared and contrasted. This then enabled a comparison between the service provision advocated for children with cancer and what the Delphi study of the families' opinions had highlighted.
    Given the rhetoric of policy directives in involving the family more in participation of care, the findings have shown that there is a disparity between the perspectives of the families and professionals. In line with policy directives, the professionals had prioritised the involvement of families as partners. However, their commitment to the partnership is questionable, as they did not regard more training in understanding the impact of the disease on the family as important. The main emphasis was on clinical service provision in terms of dedicated adolescent units in regional centres and emergency contact provision. The families placed an emphasis on communication in terms of their contact with the GP in avoiding late diagnosis, having a key worker, providing continuity between hospital and home, and training courses for the professionals to better understand the impact of the disease in the family. By contrast the professionals placed an emphasis on clinical provision namely age appropriate environment for care and 24 hour emergency contact and input from regional units.
    The findings suggest that in reality, families cannot always be equal partners with the professionals, nor do they necessarily wish to be. From the families' perspective a partnership in care has been defined as mutual respect, advocacy, encouragement, and having continuity of care between hospital and home, given by practitioners who have the expertise and who understand the impact of the disease on the family.
    Date of AwardDec 2002
    Original languageEnglish
    SupervisorDonna Mead (Supervisor) & Colin Torrance (Supervisor)


    • Cancer in children
    • service provision
    • families

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