Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale

An, Ekaterina; Tilly, Alyssa; Mah, Kenneth; Lewin, Warren; Chandrakumar, Mano; Baguio, Arnell; Jaffer, Nazira; Chikasema, Maria; Thambo, Lameck; Ntizimira, Christian; Namisango, Eve; Hales, Sarah; Zimmermann, Camilla; Wolofsky, Kayla T; Goombs, Mary; Rodin, Gary

doi:10.1136/bmjopen-2022-064508

Cited by 2 publications

(1 citation statement)

References 33 publications

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“…These findings highlight the urgent need for funding, training, and resources to improve the quality of palliative and end-of-life care in this region. Future research may benefit from a modified QODD to enhance its cultural relevance and validity for use in diverse end-of-life care settings; such research is now underway (An et al 2022).…”

Section: Discussionmentioning

confidence: 99%

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya

Goombs,

Mah,

Namisango

et al. 2023

Pall Supp Care

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Objectives Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya. Methods Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE). Results Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004). Significance of results Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

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Section: Discussionmentioning

confidence: 99%

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya

Goombs,

Mah,

Namisango

et al. 2023

Pall Supp Care

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Palliative care in Malawi: a scoping review

Palumbo,

Tilly,

Namisango

et al. 2023

BMC Palliat Care

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Background Universal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates. Methods A scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi. Results 114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified. Conclusions Malawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.

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Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale

Cited by 2 publications

References 33 publications

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya

Palliative care in Malawi: a scoping review

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