No abstract

Background End stage dementia is an inevitable phase following a prolonged deterioration. Family caregivers for people with end stage dementia who live in their home can experience an emotional burden. Emotion work and “feeling-rules” refers to socially shared norms and self-management of feelings, as well as projecting emotions appropriate for the situation, aiming at achieving a positive environment as a resource for supporting others’ wellbeing. Objectives Exploring and describing the experience of family caregivers of people with end stage dementia at home, in Israel, unpacking their emotional coping and the emotional-strategies they use, and placing family caregivers' emotion work in a cultural context. Method We conducted fifty qualitative interviews using semi structured interviews analyzed through a thematic content analysis approach. Findings Four characteristics of emotion work were identified: (1) sliding between detachment and engagement, (2) separating the person from their condition (3), adoption of caregiving as a social role and a type of social reinforcement, and (4) using the caregiving role in coping with loneliness and emptiness. The emotional coping strategies are culturally contextualized, since they are influenced by the participants’ cultural background. Discussion This article’s focus is transparent family caregivers' emotion work, a topic which has rarely been discussed in the literature is the context of caring for a family member with dementia at home. In our study, emotion work appears as a twofold concept: the emotion work by itself contributed to the burden, since family caregivers' burden experience can evolve from the dissonance between their “true” feelings of anger and frustration and their expected “acceptable” feelings (“feeling-rules”) formed by cultural norms. However, emotion work was also a major source of coping and finding strength and self-meaning. Understanding and recognizing the emotion work and the cultural and religious influence in this coping mechanism can help professionals who treat people with end stage dementia to better support family-caregivers.

BackgroundQuantifying qualitative data as part of mixed‐methods research (MMR) can add to the study results' analysis. Comparable results may reinforce the conclusions, while differences hold an opportunity for an in‐depth discussion. To date, there is little guidance for researchers seeking to quantify their qualitative data.ObjectivesDescribing conversion of qualitative data to quantitative values, comparison with matched questionnaire results, discussing the benefits of this process and the matched MMR design.MethodsWe describe in detail how qualitative data from 46 interviews were converted into quantitative values (i.e., quantitative–qualitative values, QQVs) using MMR design, enabling a comparison of results from interviews and questionnaires obtained from the same participants. This process was embedded in a larger MMR study on family‐caregivers caring for people‐with‐end‐stage‐dementia conducted between the years 2020–2021.ResultsA QQV was generated for three main themes and compared to the questionnaires' scores regarding the same topics. There were no significant differences between the scores regarding ‘satisfaction with nurses and physicians care’, and ‘discussion with nurses and physicians about end‐of‐life care’. However, for ‘burden’, the QQV score was significantly higher than the questionnaires' score.DiscussionWe described how to use a matched MMR design to produce and compare QQV from interviews with questionnaire scores. This methodology may allow further valuable discussion if the results are either similar or not, and for better integration and easier presentation of the results. Comparable results can reinforce the conclusions from both parts of the MMR study, while differences hold an opportunity for an in‐depth discussion regarding their meaning and context. Although we claim that this methodology can be embedded in the MMR structure and contribute significantly to the discussion's depth, it by no means replaces the traditional MMR design.Patient and Public ContributionNo patient or public contribution.