Bereavement support for families is an integrated and essential component of palliative care (Hudson, Hall, Boughey et al., 2017), although a growing evidence base for the provision of services exists (National Bereavement Alliance, 2017), the need to broaden our understanding to reflect broader family and sociological perspectives has been identified (Stroebe & Schut, 2015). Despite the growing incidence of dementia (Alzheimer’s Society, 2017), little is known about the bereavement experience of people with dementia (PWD), (Watanabe & Suwa, 2017).
Pilot studies guide the development of research plans to ensure that the methods and ideas which are being proposed will work in practice (Kim, 2010). This pilot study was undertaken to explore the feasibility of a proposed Doctorate study designed to answer the research question: ‘What is the family experience of bereavement when a family member has dementia and what might this mean for the provision of support?’ using constructivist grounded theory (Charmaz, 2014).
The pilot explored the family bereavement experience from the perspective of one family member and focused on the use of unstructured interviews and research diaries as tools for quality data collection, and a process of data analysis involving process coding and memo writing (Saldaña, 2016).
Tentative theoretical understanding of the data emerged including:
Experiencing a spiritual dimension
Being a bereaved carer
Relationship between bereavement and dementia.
These early findings will be integrated into the main study through the constant comparison process consistent with grounded theory methodology (Charmaz, 2014; Urquhart, 2013).
Carrying out and reflecting on the pilot highlighted several issues including the researchers’ role within the interview and data analysis process, the design and use of a diary for data collection and the ethical dilemma of involving or excluding people with dementia within the study. Learning from this pilot will help shape future study plans.
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