Women's work at end of life: The intersecting gendered vulnerabilities of patients and caregivers in rural Malawi

Ngui

et al. 2021

Public Health Nursing

Objective As HIV transitions to a chronic disease, measures that foster continued health are critical. Peer support groups can help in reducing stigma and ensuring wellbeing for those living with HIV. The purpose of our study was to gain an understanding of the ways in which women living with HIV in rural areas sustain peer support groups. Design and sample For this descriptive qualitative study, 20 women living with HIV participated in the study. Women were randomly divided into two peer support groups of ten women each; the groups met over a 12‐month period. monthly for the first two months and then every three months for the remainder of the year. Results Discussion themes indicated women found ways to sustain the groups by using them as a platform for engaging in income generation; starting and participating in table banking; addressing food security; and finding financial and moral support. Problem‐solving challenges of sustaining peer support groups was also a major theme. Conclusion As people live longer with HIV, long‐term peer support will be needed to maintain wellbeing. Community‐based peer support groups can be sustained by engaging women in common income‐generation activities.

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Sustaining peer support groups: Insights from women living with HIV in rural Kenya

Ngui

et al. 2021

Public Health Nursing

“…Psychological symptoms (depression, anxiety, internalised stigma) 31,32,34,35,[38][39][40][41]56,63,66,67 Lingering fear of death and Struggling to survive 41,43,53,62 Worry (about the future, about prolonged illness and emaciation, about finances and affordability of medical bills) 35,36,[50][51][52]54,56,68,69 Body image and Self-esteem problems 41,50,51,62,70 Dignity, loss of independence, loss of control 36,37,41,43,48,49,53,56,69 Failed coping (acceptance with hopelessness), denial 31,33,36,40,49,54,71 Somatised symptoms -depression and anxiety as sleeplessness 57 Poor emotional support in hospital 39,…”

Section: Psychological Needs Emotional Needsmentioning

confidence: 99%

“…Isolation and loneliness 33,40,41,44,50,51,53,56,66,74,77 Deteriorating social and family networks 49,56,66,67,69,77 Discrimination and stigma due to illness cause (promiscuity based or mysterious) 35,40,51,53,56,62,67,77 Cultural interpretations of problems 45 Libido problems, Sexual needs and intimacy 35,50,51,52,67 Fear of disclosure 52,53,56,71 Strain on relationship with family and friends 31,48,49,52,54 Gender-specific impacts on women (exacerbated domestic violence) 67 Restricted social networks 60,79 Restricted social participation 59,61,76 Coping with complex family dynamics and Disintegrating extended family 45,59 Homec...…”

Section: Social Needs Relationship Needsmentioning

confidence: 99%

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

et al. 2021

Background: Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage. Aim: To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness. Design: We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool. Data sources: Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care. Results: Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS ( n = 99 studies) or cancer ( n = 59), from East ( n = 72) and Southern ( n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children’s school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual). Conclusions: Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level.

“…In Africa, however, though spiritual care has been deemed important in the Global South [17][18][19][20], despite the spiritual diversity on the continent and the limitations on amassing meaningful national health care data [21], studies and protocols for the development of palliative care have tended not to focus on spiritual care, but rather on issues such as pain management protocols, for which there are clear indicators [22][23][24][25].…”

Section: Introductionmentioning

confidence: 99%

Challenges and opportunities for spiritual care practice in hospices in a middle-income country

Mahilall

Swartz

2021

BMC Palliat Care

Background Spiritual care is a key component of palliative care, but it has been overlooked and understudied in low- and middle-income country contexts, especially in Africa. In this study we sought to establish what the current spiritual care practices are in hospice palliative care settings in South Africa with a focused view on what spiritual care training is currently offered and what training needs still remain unmet. Methods We explored spiritual care practices, and training needs, through a national quantitative online study of palliative care organisations in South Africa registered with the Hospice Palliative Care Association of South Africa. A survey was sent to representatives of all member organisations listed on the national database of Hospice Palliative Care Association of South Africa. Viable data from 41% (n = 40) member organisations were analysed through the use of simple statistics. Results An expressed need (75%; n = 30) was recorded for the development of a national spiritual care curriculum. Although 48% (n = 20) of the member organisations were willing to participate in the development of a spiritual care curriculum, 37% (n = 14) could not participate, citing financial (n = 27), time (n = 31) and expertise constraints (n = 22). A set of hard and soft skills were suggested to suit the diverse South African context. Conclusions Spiritual care was seen by participants as a key component of palliative care. International curricula in spiritual care, while useful, do not offer easy adaptation to the diversities of South Africa. A bespoke spiritual care curriculum was called for, for diverse South Africa.