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An evaluation of the needs of patients receiving palliative care for upper gastrointestinal cancer and their main carer

Byrne, C H (2010) An evaluation of the needs of patients receiving palliative care for upper gastrointestinal cancer and their main carer. Doctoral thesis, Liverpool John Moores University.

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Abstract

Only 20% of patients at diagnosis of gastrointestinal cancer will be suitable for potentially curative surgical resection, and then only 5 -10% of these will survive to 5 years. Most individuals die within twelve months. Whilst the relief of physical symptoms is essential and contributes to improving quality of life, such patients are also likely to have psychosocial needs. Psychological adaptation has been found to be positively influenced by the coping resources available to individuals e.g. physical and emotional well being, their values and beliefs, support from family and their social network. Carers' levels of psychological distress, when cure is no longer an option, can be extremely high. Evaluation and research of the organization of generic palliative care in specialist gastrointestinal cancer is limited. Method An exploratory case study design using contextual triangulation was used. 34 patients receiving generic palliative care for gastrointestinal cancer, 30 main carers and 28 bereaved carers were interviewed and completed measures of psychological wellbeing. Patients also completed the Concerns Checklist. Findings Whilst the main message in the literature had suggested that psychological distress manifested as depression was underestimated in patients with cancer, this study did not support these conclusions. There were however, high levels of anxiety, concerns and adjustment disorder in patients. Fisher's exact test was highly significant (p= 0.002) for anxiety and poor disclosure in patients. Contributing factors to this are explored. Patient anxiety was significantly correlated with total concerns (r =0.419 p= .017) In carers Fisher's exact test was significant for psychological distress and information (p = .029) with a trend for younger female carers and bereaved carers to be more anxious than older carers. There was a clear association between insensitive disclosure, unmet information needs, poor coordination of care and increased psychological distress in carers, with unresolved consequences when bereaved. Implications Results demonstrate the need to proactively manage those affected by these cancers of limited prognosis. Individual assessment of patient and carers at an early stage of their referral to a specialist gastrointestinal cancer centre, with particular attention to psychosocial needs, use of sensitive disclosure, tailored information and coordination of care may promote positive appraisal of coping resources, improve adjustment and increase psychological well-being. Conclusion This study has illustrated the wide diversity amongst those affected by incurable gastrointestinal cancer. The perceptions and concerns of 92 people have been listened to, and their levels of psychological well-being measured. It offers new insight in a number of areas and in particular the association of health service care and how this increases or decreases access to coping! improving levels of psychological well being. The current case study using triangulation was able to reveal individual meaning as well as collaborative interpretation of the con~tituents and processes of living, dying, or caring for someone with incurable gastrointestinal cancer. The breadth of such an approach has not been found previously in a British study in gastrointestinal cancer, and this exploratory and explanatory approach provides evidence and a strong new insight into the effects of incurable gastrointestinal cancer upon those affected. Such results hold potential for practical application and key quality issues which address how a specialist gastrointestinal cancer service should develop its standards of care and audit practice. By entering the participant's world, although very briefly, this study has explored the perceptions and concerns of those affected by incurable gastrointestinal cancer, and links with coping and psychological well-being. There is a need to pursue this work with on going study, whilst publishing and promoting evidence of the positive outcomes for all parties involved.

Item Type: Thesis (Doctoral)
Subjects: R Medicine > R Medicine (General)
R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology (including Cancer)
R Medicine > RT Nursing
Divisions: School of Nursing & Allied Health
Date Deposited: 20 Mar 2017 12:40
Last Modified: 20 Mar 2017 12:40
URI: http://researchonline.ljmu.ac.uk/id/eprint/5996

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