Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Afolabi OA

PROVIDER: S-EPMC8371282 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ObjectiveTo estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery.DesignWe estimated the prevalence of palliative care need by analysing the proportion of deaths from defined chronic progressive illnesses. We described linear projections up to 2040 using national death registry data and official mortality forecasts. An expert consultation and subsequent online consensus survey generated recommendations on meeting future palliative care need.SettingScotland, population of 5.4 million.ParticipantsAll decedents in Scotland over 11 years (2007 to 2017). The consultation had 34 participants; 24 completed the consensus survey.Primary and secondary outcomesEstimates of past and future palliative care need in Scotland from 2007 up to 2040. Multimorbidity was operationalised as two or more registered causes of death from different disease groups (cancer, organ failure, dementia, other). Consultation and survey data were analysed descriptively.ResultsWe project that by 2040, the number of people requiring palliative care will increase by at least 14%; and by 20% if we factor in multimorbidity. The number of people dying from multiple diseases associated with different disease groups is projected to increase from 27% of all deaths in 2017 to 43% by 2040. To address increased need and complexity, experts prioritised sustained investment in a national digital platform, roll-out of integrated electronic health and social care records; and approaches that remain person-centred.ConclusionsBy 2040 more people in Scotland are projected to die with palliative care needs, and the complexity of need will increase markedly. Service delivery models must adapt to serve growing demand and complexity associated with dying from multiple diseases from different disease groups. We need sustained investment in secure, accessible, integrated and person-centred health and social care digital systems, to improve care coordination and optimise palliative care for people across care settings.

Project description:BackgroundPalliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals.MethodsMixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals.ResultsFifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39-0.52). The assignment of the phase 'deteriorating' has caused the most difficulties.ConclusionOverall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation.

Project description:ObjectiveTo identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.DesignA mixed methods rapid review.MethodsPUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.OutcomesThe impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.Results18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.ConclusionsThis rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.

Project description:Recently, we initiated a new research line on fulfillment in life by developing a conceptual framework and a self-report measure. To enhance conceptual clarity and complement theoretical considerations and empirical findings, we investigated lay conceptions of a fulfilled life in German-speaking participants at different life stages. First, we selected a qualitative approach using an open-ended question asking participants to describe a fulfilled life. Second, for a more comprehensive understanding, quantitative data were collected about the relevance of sources in providing fulfillment and ratings on a fulfilling life in the present and a fulfilled life in retrospect. Qualitative content analysis was used to assess the responses to the open-ended question. One-fifth of the data was double coded, and intercoder reliability was high (Kappa = 0.89). Responses comprised a variety of descriptions, and we grouped them into seven themes, three of which overlapped with the prior conceptualization, namely the core elements of (a) general description, (b) cognitive appraisals, and (c) affective appraisals. Cognitive evaluations related to intrapersonal aspects, particularly having lived life fully, attained personally significant goals, and developed oneself, as well as interpersonal, generative aspects, such as having made a contribution and been able to leave something of value. These categories are mostly in line with what the Fulfilled Life Scale (FLS) measures. Further themes referred to correlates-including (d) sources-and antecedents, including (e) resources, (f) personal characteristics, and (g) quality of life, all considered worthy to be the subject of empirical investigation but which were not included in the conceptual model. Qualitative and quantitative results suggest that individuals derive fulfillment from different sources. Fulfillment from a profession and having a life task was strongly associated with longer-term fulfillment. Only a few age and sex differences were found. The overarching framework developed from the qualitative results can stimulate further investigation. Our findings underscore that a fulfilled life as a distinct construct should be measured directly rather than via a proxy. Insights into the constituents, sources, and antecedents of a fulfilled life can inform practice to promote a life well lived.