Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
Wood F; Simpson S; Barnes E; Hain R
Palliative Medicine
2010
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Journal Article
Caring and curing: paediatric cancer services since 1960
PedPal Lit
This paper traces the history of the specialist meanings of 'cure' in paediatric oncology in the UK, how they have changed with increasing organization of the discipline, ever-rising survival rates for all childhood cancers, and with feedback from patients and families. It examines the differing ways in which those involved in researching, treating, and raising funds for work on childhood cancers have understood and used the language of cure, and speculates as to why talking about the 'cure' of survivors of childhood cancers is so problematic. The paper discusses the particular importance of holistic care in the development of paediatric oncology. Psychosocial support is delivered alongside surgery, radiotherapy and chemotherapy. The focus for support is the patient's whole family, building a tenet of palliative care into curative treatment. The concept of the 'truly cured child' is argued to have been crucial in the discipline's decision in the 1970s and 1980s to make the psychosocial needs of patients a nd their families central in the programme of curing children with cancer.
2005
Barnes E
European Journal Of Cancer Care
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2354.2005.00598.x" target="_blank" rel="noreferrer">10.1111/j.1365-2354.2005.00598.x</a>