49 research outputs found
Talking about my experiences ... at times disturbing yet positive': Producing narratives with people living with dementia
Background: This research investigated narrative production and use with families living with dementia. We hypothesised that the process of narrative production would be beneficial to people with dementia and carers, and would elicit important learning for health and social care professionals. Method: Through third sector partners, we recruited community-dwelling people with dementia and carers who consented to develop written, audiotaped or videotaped narratives. Audio-taped narratives were transcribed verbatim and handwritten narratives word-processed. After checking by participants, completed narratives were analysed thematically using qualitative data analysis computer software. A summary of the analysis was circulated to participants, inviting feedback: the analysis was then reviewed. A feedback questionnaire was subsequently circulated to participants, and responses were analysed thematically. Results: Twenty-one carers and 20 people with dementia participated in the project. Four themes of support were identified: ârelationshipsâ, âservicesâ, âprior experience of copingâ and having an âexplanation for the dementiaâ. Three themes were identified as possible additional stresses: âemotionsâ, âphysical healthâ and âidentityâ. We suggest a model incorporating all these themes, which appeared to contribute to three further themes; âexperience of dementiaâ, âapproaches to copingâ and âlooking to the futureâ. In participant feedback, the main themes identified were âemotionsâ, âputting things in perspectiveâ, âsharing or not sharing the narrativeâ and âactions resultingâ. Conclusions: Producing a narrative is a valuable and engaging experience for people with dementia and carers, and is likely to contribute to the quality of dementia care.Further research is needed to establish how narrative production could be incorporated into routine practice