Dignity of patients with multiple sclerosis: a qualitative descriptive study

Podolinská, Lucia; Čáp, Juraj

doi:10.15452/cejnm.2021.12.0016

Cited by 4 publications

(3 citation statements)

References 19 publications

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“…This ability may result from inner creativity, helping residents to remain self-dependent, even if their bodies fail [ 53 ]. Residents in this study appeared to have found dignity by accepting disease and deterioration with a fighting spirit, which aligns with research with younger people with multiple sclerosis [ 54 ].…”

Section: Discussionsupporting

confidence: 79%

Dignity in bodily care at the end of life in a nursing home: an ethnographic study

Holmberg

Godskesen

2022

BMC Geriatr

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Background Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mental conditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly used concept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aim of this study was to explore aspects of dignity in older persons’ everyday lives in a NH. Design A focused ethnographic study design. Methods Data consisted of 170 h of fieldwork, including observations (n = 39) with residents (n = 19) and assistant nurses (n = 22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n = 35, mean 70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis. Results The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents’ dignity depended on assistant nurses’ routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters with assistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help, these circumstances placed them in a vulnerable situation. Conclusions According to residents’ narratives, important dignity-conserving abilities came from within themselves. Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents’ preferences. However, no strategies for future crises or preparing for death were observed. To protect residents’ dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily, social, spiritual, and psychological needs to increase well-being and prevent suffering.

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Section: Discussionsupporting

confidence: 79%

Dignity in bodily care at the end of life in a nursing home: an ethnographic study

Holmberg

Godskesen

2022

BMC Geriatr

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“…This ability may result from an inner creativity, helping residents to remain self-dependent, even as their bodies fail [50]. In compliance with research performed on younger people with multiple sclerosis, residents in this study appeared to have found dignity by accepting disease and deterioration with a ghting spirit [51]. Further, the residents of this study took pride in what they had achieved and what they could still do.…”

Section: Discussionsupporting

confidence: 71%

Dignity in Care at the End of Life in a Nursing Home: an Ethnographic Study

Holmberg

Godskesen

2022

Preprint

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Background: Nursing homes (NHs) are populated by the frailest older people with multiple physical or mental conditions and palliative care needs. Although dignity is a commonly used concept, it has been claimed to be complex, ambiguous, and multivalent. Nevertheless, dignity is a core value of end-of-life care and is why this study aimed to explore aspects of dignity in older persons’ everyday lives in a NH.Design: A focused ethnographic study design. Methods: Data consisted of 170 hours of fieldwork, including observations (n=39) with residents (n=19) and assistant nurses (n=22) in a NH in a Swedish urban area. Open interviews were undertaken with residents several times (in total, n=35, mean 70 minutes/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis.Results: The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of angst and loneliness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents’ dignity depended on assistant nurses’ routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, and deteriorating routines, but also by distanced and sometimes harsh encounters with assistant nurses. As the residents oin this study cherished autonomy and self-determination, while still in need of much help, these circumstances placed them in a vulnerable situation. Conclusions: To protect residents’ dignity, NHs need to apply a palliative care approach to provide holistic care that comprises attending to personal, bodily, social, spiritual and psychological needs to increase well-being and prevent suffering.

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“…However, dignity is embraced by most national and international human rights frameworks ( Chapman et al, 2022a ). Researchers have attempted to resolve these criticisms by considering the meaning of dignity as it applies to a particular practice such as palliative care ( Chochinov 2002 , 2007 ), dementia services ( Kracmarova et al, 2022 ), and healthcare ( Frounfelker & Bartone, 2021 ; Lind et al, 2014 ; Philipp et al, 2016 ; Podolinska & Cap, 2021 ). Although these examinations include lists of the barriers and enablers to dignity in individual contexts, little is known about how dignity is understood, defined, and experienced by marginalised populations, particularly people with disability ( Lohne et al, 2010 ).…”

Section: Introductionmentioning

confidence: 99%

Dignity and the Importance of Acknowledgement of Personhood for People With Disability

Chapman,

Dixon,

Ehrlich

et al. 2023

Qual Health Res

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Exploring the intricate relationship between individual and collective experiences, this study explores dignity from the perspectives of people with disability. Using an extreme citizen science approach, we engaged people with disability as active partners in gathering data through qualitative surveys and focus groups. Framework Analysis was employed to ensure the validity of findings while privileging the voices of people with lived experience of disability. Dignity was contingent on the acknowledgement of personhood and the delivery of human rights. Our research identified five key aspects to maintain and protect dignity: (1) acknowledging personhood; (2) recognising people with disability as decision-makers of their lives; (3) realising the right to access information; (4) maintaining the right to privacy; and (5) eliminating or minimising barriers to accessibility and inclusion. Undignified experiences that resulted from a lack of acknowledgement negatively affected participants’ wellbeing, and healthcare settings were identified as particularly challenging environments for dignity. These findings have significant implications for healthcare systems and services within an international and interdisciplinary context. They emphasise the need for adaptable, flexible services, co-designed with people with lived experience of disability. Addressing organisational constraints, resource limitations, and expectations is paramount to ensuring dignity is maintained through the acknowledgement of personhood and safeguarding of human rights.

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Dignity of patients with multiple sclerosis: a qualitative descriptive study

Cited by 4 publications

References 19 publications

Dignity in bodily care at the end of life in a nursing home: an ethnographic study

Dignity in bodily care at the end of life in a nursing home: an ethnographic study

Dignity in Care at the End of Life in a Nursing Home: an Ethnographic Study

Dignity and the Importance of Acknowledgement of Personhood for People With Disability

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