Overcoming the challenges and complexities of researching a vulnerable population within a palliative care context

Nabi, Natasha and Tweats, Kate and Logan, Karen and Moore, Stacey and McMurdo, Amy and Vani, Shivani and Cogan, Nicola and Fleming, Leanne (2019) Overcoming the challenges and complexities of researching a vulnerable population within a palliative care context. SAGE Research Methods Cases. (In Press)

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While previous studies have investigated sleep issues in chronic illness and the effectiveness of Cognitive Behavioral Therapy for Insomnia (CBT-I), this has not been examined within palliative care. High rates of sleep difficulties have been found in patients receiving palliative care. We aimed to explore the practical feasibility of implementing CBT-I among palliative patients using techniques such as stimulus control therapy, progressive muscle relaxation and guided imagery/thought blocking. However, issues such as the intervention protocols being relatively labor intensive and time consuming for participants that were receiving palliative care, involving completion of daily diaries and quantitative outcome measures, led to high non-completion rates among participants. Consequently, a shift in methodology was required and a qualitative approach was adopted to explore participants’ experiences of sleep disturbance within palliative care. The aim was to gain an in-depth understanding of the specific issues and challenges within palliative care that impacted on sleep. Focus groups were conducted with patients, informal carers and hospice staff who all described how they experienced sleep difficulties. This provided a broader understanding of insomnia from multiple perspectives within palliative care. Furthermore, it helped inform how we will go about designing future studies in CBT-I in palliative care; having illuminated the appropriate adaptions required to current protocols. This case study will discuss the complexities and ethical issues we faced at each stage of the research process and how adopting both quantitative and qualitative approaches helped provide useful insights that will inform future research.