<i>Performing</i>care: emotion work and ‘dignity work’ – a joint autoethnography of caring for our mum at the end of life

Wilkinson, Samantha; Wilkinson, Catherine

doi:10.1111/1467-9566.13174

Cited by 9 publications

(7 citation statements)

References 47 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Similar limits and restrictions were commonplace in neonatal care during the height of the pandemic. Analyses uncovered the idea that to keep safe meant to stay away, rendering a pattern of visits to their dying infant to perform care [ 38 ], in shifts. Change-overs became touch-points for parents to update one another on progress, and equally became points for confusion, something we believe is attributed to the pandemic circumstances and the associated restrictions.…”

Section: Discussionmentioning

confidence: 99%

Preliminary findings on the experiences of care for parents who suffered perinatal bereavement during the COVID-19 pandemic

Silverio

Easter

Storey

et al. 2021

BMC Pregnancy Childbirth

View full text Add to dashboard Cite

Background The COVID-19 pandemic poses an unprecedented risk to the global population. Maternity care in the UK was subject to many iterations of guidance on how best to reconfigure services to keep women, their families and babies, and healthcare professionals safe. Parents who experience a pregnancy loss or perinatal death require particular care and support. PUDDLES is an international collaboration investigating the experiences of recently bereaved parents who suffered a late miscarriage, stillbirth, or neonatal death during the global COVID-19 pandemic, in seven countries. In this study, we aim to present early findings from qualitative work undertaken with recently bereaved parents in the United Kingdom about how access to healthcare and support services was negotiated during the pandemic. Methods In-depth semi-structured interviews were undertaken with parents (N = 24) who had suffered a late miscarriage (n = 5; all mothers), stillbirth (n = 16; 13 mothers, 1 father, 1 joint interview involving both parents), or neonatal death (n = 3; all mothers). Data were analysed using a template analysis with the aim of investigating bereaved parents’ access to services, care, and networks of support, during the pandemic after their bereavement. Results All parents had experience of utilising reconfigured maternity and/or neonatal, and bereavement care services during the pandemic. The themes utilised in the template analysis were: 1) The Shock & Confusion Associated with Necessary Restrictions to Daily Life; 2) Fragmented Care and Far Away Families; 3) Keeping Safe by Staying Away; and 4) Impersonal Care and Support Through a Screen. Results suggest access to maternity, neonatal, and bereavement care services were all significantly reduced, and parents’ experiences were notably affected by service reconfigurations. Conclusions Our findings, whilst preliminary, are important to document now, to help inform care and service provision as the pandemic continues and to provide learning for ongoing and future health system shocks. We draw conclusions on how to enable development of safe and appropriate services during this pandemic and any future health crises, to best support parents who experience a pregnancy loss or whose babies die.

show abstract

Section: Discussionmentioning

confidence: 99%

Preliminary findings on the experiences of care for parents who suffered perinatal bereavement during the COVID-19 pandemic

Silverio

Easter

Storey

et al. 2021

BMC Pregnancy Childbirth

View full text Add to dashboard Cite

show abstract

“…Festvag et al (2021) explore the difficulties the elderly often have in navigating the Norwegian health system, which Festvag came to appreciate after caring for her mother. The Wilkinson sisters write collaboratively about the oncological care they provided their mother (Wilkinson & Wilkinson, 2020).…”

Section: Autoethnography Of Women's Health Eds and Mother-daughter Re...mentioning

confidence: 99%

“…The latter comprises women scholars who describe suffering in tandem with the relatives for whom they care (Festvag et al, 2021; Malthouse, 2011; Weems, 2020; Wilkinson & Wilkinson, 2020). That includes instances in which daughters relate the story of their mothers’ illness and its impact on their relationships.…”

Section: Literature Reviewmentioning

confidence: 99%

Mother blaming and anorexia: How ideological state apparatuses have informed my perception of my mother's role in the formation of my eating disorder

Mikhaylova

2022

Feminism & Psychology

View full text Add to dashboard Cite

Autoethnographic research has described the tendency to ascribe blame to mothers for their daughters’ disordered eating patterns, but the mechanisms by which these attitudes develop have been insufficiently investigated. The literature on mother-blaming and mothers’ roles in the development of women's eating disorders has provided macro-level theoretical explanations for this attribution of blame but lacks depictions of women who subscribe to these macro narratives and yet subsequently attribute blame to their own mothers on the micro level. In this paper, I address these two gaps by conducting a feminist autoethnographic inquiry into my own history of blaming my mother for my anorexia and other disordered eating patterns. I use classical structuralist and post-structuralist theoretical concepts, as well as Althusser's proposed neo-Marxist idea of ideological state apparatuses (ISAs). Results indicate that my mother-blaming behavior was mainly influenced by apparatuses of medicine, church, education, family, and culture. Legal, political, civic, and media apparatuses were less involved in the construction of my perception in this area. All in all, my findings provide richer insight into mother-blaming internalization on the micro level and enlarge the “palette” of feminist approaches to eating disorder analysis.

show abstract

“…Numerous studies have dealt with family caregivers' burden ( Hemingway et al, 2016 ; Kjällman Alm et al, 2013 ; Zwerling et al, 2016 ), and with the emotion work of professional formal caregivers and institutional staff members ( Bailey et al, 2015 ; Brighton et al, 2019 ). This paper wishes to apply the concept of emotion work to the case of family caregivers, as their role is similar regarding length of care, burn out and emotional exhaustion ( Herron et al, 2019 ; Vandrevala et al, 2017 ; Wilkinson & Wilkinson, 2020 ). There has been very little discussion regarding family caregivers’ burden using terms of emotion work, although the use of this concept may clarify family caregivers' complex role.…”

Section: Introductionmentioning

confidence: 99%

Emotion work and feeling rules: Coping strategies of family caregivers of people with end stage dementia in Israel—A qualitative study

et al. 2022

View full text Add to dashboard Cite

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.

show abstract

Performingcare: emotion work and ‘dignity work’ – a joint autoethnography of caring for our mum at the end of life

Cited by 9 publications

References 47 publications

Preliminary findings on the experiences of care for parents who suffered perinatal bereavement during the COVID-19 pandemic

Preliminary findings on the experiences of care for parents who suffered perinatal bereavement during the COVID-19 pandemic

Mother blaming and anorexia: How ideological state apparatuses have informed my perception of my mother's role in the formation of my eating disorder

Emotion work and feeling rules: Coping strategies of family caregivers of people with end stage dementia in Israel—A qualitative study

Contact Info

Product

Resources

About