‘I am Dying a Slow Death of White Guilt’: Spiritual Carers in a South African Hospice Navigate Issues of Race and Cultural Diversity

Mahilall, Ronita; Swartz, Leslie

doi:10.1007/s11013-021-09750-5

Cited by 4 publications

(2 citation statements)

References 44 publications

(50 reference statements)

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“…Literature supports the participants on the thinness of the fabric, open back of the hospital attire and lack of body coverage [22,23]. The exposure of body parts adds to the depersonalisation [22] and dehumanising [24] experiences of admitted patients [25]. McDonald [3] advocates for patients to wear their clothing to maintain self-esteem and, as a conscious reminder to healthcare practitioners, to recognise them as human beings.…”

Section: The Sacredness Of the Bodymentioning

confidence: 99%

“…McDonald [3] advocates for patients to wear their clothing to maintain self-esteem and, as a conscious reminder to healthcare practitioners, to recognise them as human beings. The hospital attire forces an individual into a patient role of low status and lacks control and privacy [24] of their bodies. Understanding the patient's culture and the meaning of the attire they are wearing is essential in safe hospital care.…”

Section: The Sacredness Of the Bodymentioning

confidence: 99%

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Untangling Intimate Care Experiences for Patients Admitted to Public Hospitals in South Africa

Shakwane¹

2023

TONURSJ

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Background: Hospital admission can be a traumatic and humiliating experience for patients due to the institutionalised attire they must wear. Intimate care may trigger experiences of helplessness and disrespect due to exposure to their body parts and having to be touched by nurses. Objective: This research aimed to explore and describe patients’ perceptions of their bodies and their experiences of intimate care execution during their hospital stay. Methods: A qualitative explorative-descriptive design and Trauma-informed care framework were used to explore and describe the participants’ perceptions and experiences of intimate care execution during admission to the two sampled hospitals. Twenty participants admitted to medical and surgical units were purposively recruited. Data was collected using semi-structured interviews, and thematic analysis was used to give meaning to the data. Results: Three overarching themes emerged from the data: the sacredness of the human body; Patients want their dignity to be respected during intimate care and touch; and creating the nurse-patient intimate care relationship. Patients wish the nurses to maintain their dignity and privacy. Intimate care and touch should be initiated in a safe environment where patients can make informed decisions. Implications for Nursing: Declothing of personal attire during admission violates patients’ dignity and privacy and is dehumanising. During intimate care and touch, nurses should create a cultural, religious and gender safe environment, allowing inpatients to make informed decisions regarding the care provided to their bodies. Conclusion: Patients’ beliefs system should be incorporated into autonomy and informed decisions about the care to be provided to naked bodies. Hospitalisation should not reinforce physical and psychological trauma. Respect and dignity are paramount when caring for the patient’s body.

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Section: The Sacredness Of the Bodymentioning

confidence: 99%

Section: The Sacredness Of the Bodymentioning

confidence: 99%

Untangling Intimate Care Experiences for Patients Admitted to Public Hospitals in South Africa

Shakwane¹

2023

TONURSJ

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Flourishing, religion, and burnout among caregivers working in pediatric palliative care

Oberholzer,

Doolittle

2024

Int J Psychiatry Med

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Introduction Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities ( P = .38, P < .05), and carrying religion into all aspects of life ( P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.

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Naming racism as a root cause of inequities in palliative care research: a scoping review

Algu,

Wales,

Anderson

et al. 2024

BMC Palliat Care

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Background Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist. Objective To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings. Methods Following Arksey & O’Malley’s methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus—whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings—whether authors directly or indirectly discussed racism when contextualizing the study results. Results We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common. Conclusion While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors – including racism – during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.

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‘I am Dying a Slow Death of White Guilt’: Spiritual Carers in a South African Hospice Navigate Issues of Race and Cultural Diversity

Cited by 4 publications

References 44 publications

Untangling Intimate Care Experiences for Patients Admitted to Public Hospitals in South Africa

Untangling Intimate Care Experiences for Patients Admitted to Public Hospitals in South Africa

Flourishing, religion, and burnout among caregivers working in pediatric palliative care

Naming racism as a root cause of inequities in palliative care research: a scoping review

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