Publications
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Powell R, Burmester V, Waddingham E, et al., 2024, A cross-sectional study of the psychosocial and occupational impact of COVID-19 among NHS staff: findings from a Northwest London cohort during the second wave, F1000Research, Vol: 13, ISSN: 2046-1402
Background: Evidence of the deleterious mental health impact of COVID-19 on healthcare workers shows the priority need to support their psychological wellbeing. We assessed the nature, prevalence and factors associated with the psychosocial and occupational impact of COVID-19 among NHS staff during the pandemic.Methods: A cross-sectional online survey was sent to all NHS provider organisations in Northwest London in January 2021.Results: Of 1,065 participants completing the survey, 906 (85%) provided responses to the full survey. Over half (54.1%; n=543) exceeded the cut-off score for probable mental disorders, 31.1% (n=222) for probable burnout, and similarly for PTSD (28.5%; n=210). 28.6% (n=214) had experienced suicidal thoughts. 58% (n=429) scored >5 out of 10 for emotional and physical exhaustion. Over 30% (n=328) of respondents reported using some kind of staff support service.Staff in pay bands 4-6 were more likely to have common mental disorders (CMD) (OR 2.42 [1.20,4.88]) and PTSD symptoms (OR 4.18 [1.44,12.14]) than lower banded staff. Staff working in acute care settings were more likely to experience CMD (OR 1.50 [1.08,2.07]) and PTSD (OR 1.57 [1.03,2.41]) than in non-acute settings. Low social connectedness and perceived delivery of poor-quality care were highly associated with risk of all mental health problems, apart from alcohol misuse (OR range 1.56-18.34).Conclusions: Psychosocial morbidity and adverse occupational impacts on NHS staff in the second wave of the COVID-19 pandemic echoed that reported in the first wave. Social connection and perception of delivering good care were important, potentially modifiable, mitigating factors.
Goombs M, Mah K, Namisango E, et al., 2023, The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya., Palliat Support Care, Pages: 1-10
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.
Leyns C, Williems S, Powell R, et al., 2023, From disease- to people-centred pandemic management: health equity through community organization, health information systems & community oriented primary care, International Journal for Equity in Health, Vol: 22, ISSN: 1475-9276
Background:The COVID-19 pandemic exposed the health equity gap between and within countries. Western countries were the first to receive vaccines and mortality was higher among socially deprived, minority and indigenous populations. Surprisingly, many sub-Saharan countries reported low excess mortalities. These countries share experiences with community organization and participation in health. The aim of this article was to analyse if and how this central role of people can promote a successful pandemic response.Methods:This analysis was partly based on local and national experiences shared during an international and Latin American conference on person-and people-centred care in 2021. Additionally, excess mortality data and pandemic control-relevant data, as well as literature on the pandemic response of countries with an unexpected low excess mortality were consulted.Results:Togo, Mongolia, Thailand and Kenya had a seven times lower mean excess mortality for 2020 and 2021 than the United States of America. More successful pandemic responses were observed in settings with experience in managing epidemics like Ebola and HIV, well-established community networks, a national philosophy of mutual aid, financial government assistance, more human resources for primary care and paid community health workers.Discussion:Since trust in authorities and health needs vary greatly, local strategies are needed to complement national and international pandemic responses. Three key levers were identified to promote locally-tailored pandemic management: well-organized communities, community-oriented primary care, and health information systems. An organized community structure stems from a shared ethical understanding of humanity as being interconnected with each other and the environment. This structure facilitates mutual aid and participation in decision making. Community-oriented primary care includes attention for collective community health and ways to improve health from its r
Powell RA, Rao M, 2023, Balancing climate anxiety with hope: learning from collective climate activism, BMJ-BRITISH MEDICAL JOURNAL, Vol: 383, ISSN: 0959-535X
Cartmell KB, Doherty EA, Gikaara N, et al., 2023, Kenyan palliative care providers' and leaders' perceptions of palliative care research needs and support to facilitate rigorous research, BMC Palliative Care, Vol: 22, ISSN: 1472-684X
BACKGROUND: Palliative care (PC) can reduce symptom distress and improve quality of life for patients and their families experiencing life-threatening illness. While the need for PC in Kenya is high, PC service delivery and research is limited. Qualitative research is needed to explore potential areas for PC research and support needed to enable that research. This insight is critical for informing a national PC research agenda and mobilizing limited resources for conducting rigorous PC research in Kenya. OBJECTIVES: To explore perceptions of priority areas for PC research and support needed to facilitate rigorous research from the perspective of Kenyan PC providers and leaders. METHODS: Focus groups (FGs) were conducted in November and December of 2018 using a semi-structured interview guide. FGs were audio-recorded, transcribed, and analyzed using a thematic content analysis approach. RESULTS: Three FGs were conducted (n = 22 participants). Ten themes related to PC research emerged, including research on: 1) beliefs about death, disease, and treatment to inform PC; 2) awareness about PC, 3) integration of PC within the health system; 4) understanding caregiver experiences and needs; 5) community health volunteers (CHVs) and volunteer programs; 6) evaluation of costs and benefits of PC; 7) treatment approaches, including complementary and alternative medicine (CAM) and advanced diagnostics at end of life; 8) other suggestions for research, 9) populations in need of PC research; and 10) resources for enabling research. CONCLUSIONS: Kenyan PC providers and leaders identified key areas requiring increased scientific inquiry and critical resources needed to enable this research. These findings can help to focus future PC research in Kenya and encourage funding agencies to prioritize the issues identified.
Namisango E, Powell RA, Taylor S, et al., 2023, Depressive Symptoms and Palliative Care Concerns Among Patients With Non-communicable Diseases in Two Southern African Countries., J Pain Symptom Manage, Vol: 65, Pages: 26-37
CONTEXT: Non-communicable diseases (NCDs), associated with health-related suffering, can benefit from palliative care in resource-limited settings, where over four-fifths of these deaths occur. OBJECTIVE: To measure the prevalence of depressive symptoms, palliative care-related concerns, physical and other psychological symptoms among adult patients with NCDs in Malawi and Namibia. METHODS: This multi-center, cross-sectional study consecutively recruited outpatients from four tertiary referral hospitals. Stepwise regression analysis was used to assess factors associated with physical and psychological symptom burden. RESULTS: Among 457 participants, primary diagnosis was cancer (n=147, 32%); cardiovascular disease (CVD) (n=130, 28%), chronic respiratory disease (CRESD) (n=73, 16%) or diabetes (n=107, 23%). Over half were female (58.9%; n=269), mean age was 48 (SD=15.7). Clinically significant psychological distress was identified among cancer (57.2%), diabetes (57.0%), CRESD (45.2%) and CVD patients (43.1%), with criterion for major depression symptoms met for cancer (42.9%), diabetes (39.2%), CVD (30.0%) and CRESD (28.8%). Most severe palliative care concerns were: first sharing feelings (i.e., not at all/not very often), reported by CVD (28%), CRESD (23%), cancer (22%) and diabetes (21%) patients; second help and advice (i.e., none/very little), among cancer (28%), CVD (26%), diabetes (22%), and CRESD (16%) patients. High prevalence of moderate-to-severe pain was reported (cancer 54%, CVD 41%, CRESD 38%, diabetes 38%). Functional status, age, and presence of comorbidities were associated with physical and psychological symptom distress. CONCLUSION: Given the high burden of physical and psychosocial symptoms and symptom distress, the findings highlight the need for integrated person-centered palliative care for NCDs to optimize care outcomes.
George AP, Powell RA, Rao M, 2023, Implementing the English health inequalities agenda: addressing challenges to person-level, cross-sectoral data linkage, access and routine use for local authority public health., Int J Popul Data Sci, Vol: 8
Local authorities are central to the implementation of English Integrated Care Systems' health inequalities agendas, embedding public health into population health management planning. They work with partners to deliver a range of 'health determinant' services and facilities for people in a defined geographic area. This work is substantially premised on the use of cross-sectoral data that is linked at the individual level, readily available, longitudinal and contemporaneous. However, multiple challenges exist to such data availability. This paper elaborates upon these challenges to local authority public health systems and their potential solutions.
Wong JL, Powell RA, 2022, Untapped potential of nature-based activities for mental health: need for further research., Int Rev Psychiatry, Vol: 34, Pages: 537-540
In April 2022, the Intergovernmental Panel on Climate Change stated clearly that without immediate and deep reductions in greenhouse gas emissions, it would be impossible to limit global temperature rise to 1.5 °C above pre-industrial levels. A growing body of research shows an increasing reaction to witnessing or experiencing current climate impacts and concern regarding apparent inaction in response, manifests as negative cognitive, emotional, and behavioural responses, including eco-anxiety. This commentary contends that nature-based activities (NBAs) have a potentially important, but currently neglected, role to play in supporting those experiencing eco-anxiety. However, existing research limitations hinder their adoption in the United Kingdom's social prescribing agenda and they remain a largely untapped therapeutic resource that need to be mainstreamed into clinical and social care provision. The paper calls for investment in research that advances our understanding of the individual and community benefits of NBAs, the longevity of their impact, and their associated, comparative and opportunity costs.
Namisango E, Bristowe K, Murtagh FE, et al., 2022, Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries., Palliat Med, Vol: 36, Pages: 1140-1153
BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.
Powell RA, Yussuf M, 2022, Medical narrative and religious norm driving cut type and medicalization changes in female genital mutilation/cutting in Somaliland., Health Care Women Int, Vol: 43, Pages: 722-745
The authors' aim was to examine if the nature of female genital mutilation/cutting (FGM/C) in Somaliland is changing and any contributing factors. In this mixed method qualitative study the researchers used 24 focus groups, 20 key informant interviews and 28 in-depth interviews with multiple stakeholders. We found a shift from the pharaonic to Sunna cut, an age decrease at which FGM/C is performed and an increase in its medicalization. Shift in cut type and medicalization appears to be partly a response to the medical narrative of anti-FGM/C campaigns, partly an intertwining of messaging regarding health risks and religious norms. We recommend a need to consider programs that reflect upon the utility and appropriateness of moving the dominant narrative to issues around the right to bodily integrity and bodily autonomy, and melding that messaging with the Islamic discourse on protecting health that focuses on collective welfare.
Powell RA, Njoku C, Elangovan R, et al., 2022, Tackling racism in UK health research, BMJ: British Medical Journal, Vol: 376, Pages: 1-4, ISSN: 0959-535X
Hayhoe BW, Powell RA, Barber S, et al., 2022, Impact of COVID-19 on individuals with multimorbidity in primary care, British Journal of General Practice, Vol: 72, Pages: 38-39, ISSN: 0960-1643
Jesuthasan J, Powell R, Burmester V, et al., 2021, “We weren't checked in on, nobody spoke to us”: An exploratory qualitative analysis of two focus groups on the concerns of ethnic minority NHS staff during COVID-19, BMJ Open, Vol: 12, Pages: 1-8, ISSN: 2044-6055
Objective:To gain exploratory insights into the multi-faceted, lived-experience impact of COVID-19 on a small sample of ethnic minority healthcare staff to co-create a module of questions for follow-up online surveys on the wellbeing of healthcare staff during the pandemic. Design:A cross-sectional design using two online focus groups among ethnic minority healthcare workers who worked in care or supportive roles in a hospital, community health or GP surgery setting for at least 12 months.ParticipantsThirteen healthcare workers (11 female) aged 26 to 62 years from diverse ethnic minority backgrounds, eleven working in clinical roles.Results:Five primary thematic domains emerged: 1) viral vulnerability, centring around perceived individual risk and vulnerability perceptions; 2) risk assessment, comprising of pressures to comply, perception of a tick-box exercise, and issues with risk and resource stratification; 3) interpersonal relations in the workplace, highlighting deficient consultation of ethnic minority staff, cultural insensitivity, need for support, and collegiate judgement; 4) lived experience of racial inequality, consisting of job insecurity and the exacerbation of systemic racism and its emotional burden; 5) community attitudes, including public prejudice and judgement, and patient appreciation.Conclusions:Our novel study has shown ethnic minority NHS staff have experienced COVID-19 in a complex, multi-dimensional manner. Future research with a larger sample should further examine the complexity of these experiences and should enumerate the extent to which these varied thematic experiences are shared among ethnic minority NHS workers so that more empathetic and supportive management and related occupational practices can be instituted.
Powell RA, Lakhani S, Alter M, et al., 2021, COVID-19’s impact on neglected pharmaceutical staff: wake-up call for needed research, Journal of Pharmaceutical Policy and Practice, Vol: 14, ISSN: 2052-3211
Discussion of the necessity of the compulsory vaccination of UK patient-facing care workers as an employment conditionality has defected from the initial and ongoing impact of Coronavirus disease on relatively neglected occupational groups themselves, including community pharmacists. This commentary highlights the relative lack of researchinvestigating the mental health and wellbeing impact of the pandemic on this occupational group in England andurges further study of their needs and experiences to inform evidence-based supportive psychological interventions
Powell RA, Kendall K, Cislaghi B, et al., 2021, Self-care, social norms and anomie during COVID-19: from contestation of the greater good to building future normative resilience in the UK, Journal of Epidemiology and Community Health, Vol: 75, Pages: 925-926, ISSN: 0143-005X
Namisango E, Bhakta N, Wolfe J, et al., 2021, Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers., JCO Glob Oncol, Vol: 7, Pages: 1395-1405
PURPOSE: The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa. METHODS: This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development. RESULTS: We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans. CONCLUSION: This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems.
Powell RA, Rodriquez-Campos L, Opare-Lokko EB, et al., 2021, 'Flattening' one curve: what about 'raising the line' on the other? COVID-19 and palliative care in low-income and middle-income countries., BMJ Support Palliat Care, Vol: 11, Pages: 119-121
Mayland CR, Powell RA, Clarke GC, et al., 2021, Bereavement care for ethnic minority communities: a systematic review of access to, models of, outcomes from, and satisfaction with, service provision, PLoS One, Vol: 16, Pages: 1-18, ISSN: 1932-6203
OBJECTIVES: To review and synthesize the existing evidence on bereavement care, within the United Kingdom (UK), for ethnic minority communities in terms of barriers and facilitators to access; models of care; outcomes from, and satisfaction with, service provision. DESIGN: A systematic review adopting a framework synthesis approach was conducted. An electronic search of the literature was undertaken in MEDLINE, Embase, PsycINFO, Social Work Abstract and CINAHL via EBSCO, Global Health, Cochrane library, the Trip database and ProQuest between 1995 and 2020. Search terms included bereavement care, ethnic minority populations and the UK setting. RESULTS: From 3,185 initial records, following screening for eligibility, and full-text review of 164 articles, seven studies were identified. There was no research literature outlining the role of family, friends and existing networks; and a real absence of evidence about outcomes and levels of satisfaction for those from an ethnic minority background who receive bereavement care. From the limited literature, the overarching theme for barriers to bereavement care was 'unfamiliarity and irregularities'. Four identified subthemes were 'lack of awareness'; 'variability in support'; 'type and format of support'; and 'culturally specific beliefs'. The overarching theme for facilitators for bereavement care was 'accessibility' with the two subthemes being 'readily available information' and 'inclusive approaches'. Three studies reported on examples of different models of care provision. CONCLUSIONS: This review reveals a stark lack of evidence about bereavement care for ethnic minority populations. In particular, understanding more about the role of family, friends and existing support systems, alongside outcomes and satisfaction will begin to develop the evidence base underpinning current provision. Direct user-representation through proactive engagement and co-design approaches may begin to determine the most appropriate models an
Hall EJ, Powell RA, 2021, Valuing the spiritual, Journal of Religion and Health, Vol: 60, Pages: 1430-1435, ISSN: 0022-4197
Identifying reforms that minimize US healthcare costs is imperative. This commentary explores one intervention with potential cost-saving implications that has received comparably minimal consideration: spiritual care provision. It highlights the staff and patient costing benefits of spiritual care in addressing spiritual distress and urges practical policy and research initiatives to maximize its impact.
McNeil MJ, Namisango E, Hunt J, et al., 2020, Grief and bereavement in parents after the death of a child in low- and middle-income countries, Children, Vol: 7, ISSN: 2227-9067
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.
Loth CC, Namisango E, Powell RA, et al., 2020, "From good hearted community members we get volunteers" - an exploratory study of palliative care volunteers across Africa, BMC Palliative Care, Vol: 19, ISSN: 1472-684X
BACKGROUND: Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery. METHODS: Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis. RESULTS: Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients' families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers' most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation. CONCLUSIONS: The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30-50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high
Namisango E, Bristowe K, Murtagh FE, et al., 2020, Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study., Palliat Med, Vol: 34, Pages: 319-335
BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. AIM: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa. SETTING AND PARTICIPANTS: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report. RESULTS: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7-17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0-17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns - pain and symptom distress; psycho-social concerns - family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns - worry about death, and loss of ambitions; health care quality - child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age. CONCLUSION: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.
Allsop MJ, Namisango E, Powell RA, 2019, A survey of mobile phone use in the provision of palliative care services in the African region and priorities for future development., J Telemed Telecare, Vol: 25, Pages: 230-240
INTRODUCTION: Palliative care (PC) services in the African region need to adapt to manage rising numbers of patients with cancer or other life-limiting conditions. Mobile phone use in healthcare delivery (mHealth) is at an early stage of development for PC, but may provide new approaches to supporting patients regionally, particularly those with non-communicable diseases. METHODS: We conducted an online survey of 51 PC providers across 21 countries in the African region to identify: (i) current mHealth use in PC service delivery; (ii) potential barriers to mHealth use; and (iii) provider priorities for research development. RESULTS: mHealth approaches were reported across 71.4% of services in which respondents were based. Barriers to mHealth research include patients not having access to phones, mobile network access, and limited access to expertise and hardware required for mHealth. Research priorities were identified which included exploring ways of incorporating mHealth into patient care and ensuring access and relevance of mHealth for patients and health professionals. DISCUSSION: mHealth approaches are present across PC services in the African region, but so too are barriers to their use. Further work is required to explore how existing mHealth activities might be further developed and aligned with priority areas for PC development. Crucially, user engagement that seeks to understand the preferences and priorities of patients with PC needs, their caregivers, and those involved in the provision of PC should remain central to these efforts.
Simms V, Downing J, Namisango E, et al., 2019, Change in multidimensional problems and quality of life over three months after HIV diagnosis: a multicentre longitudinal study in Kenya and Uganda, BMC Infectious Diseases, Vol: 19, ISSN: 1471-2334
BACKGROUND: Evidence on patient-reported outcomes of newly diagnosed HIV patients is scarce, and largely cross-sectional. This prospective cohort study describes the prevalence of, and changes in, patient-reported outcomes in the three months after HIV diagnosis, in 11 HIV outpatient centres in Kenya and Uganda. METHODS: Adults were recruited within 14 days of result, completing self-report measures four times at monthly intervals. Multilevel mixed-effects linear regression (quality of life continuous outcomes) and ordinal logistic regression (symptoms and concerns categorical outcomes) modelled change over time, with repeated observations grouped within individuals adjusted for demographic/clinical characteristics, and multiple imputation for missing data. RESULTS: 438 adults were enrolled and 234 (53·4%) initiated ART. Improvement was found for MOS-HIV physical health (from 46·3 [95% CI 45·1-47·3], to 53·7 [95% CI 52.8-54·6], p < 0.001), and mental health (from 46·4 [95% CI 45·5-47·3] to 54·5 [95% CI 53·7-55·4], p < 0.001). POS subscale 'interpersonal problems' improved but remained burdensome (OR = 0·91, 95% CI = 0·87-0·94, p < 0.001; 22·7% reported severe problems at final time point). The scores for the existential POS subscale (OR = 0·95, 95% CI = 0.90-1·00, p = 0.056) and physical/psychological problems POS subscale (OR = 0·97, 95% CI = 0.92-1·02, p = 0.259) did not improve. Participants who initiated ART had worsening physical/psychological (OR = 0·64, 95% CI = 0·41-0·99, p = 0·045) and interpersonal problems (OR = 0·64, 95% CI = 0·42-0·
Fraser BA, Powell RA, Mwangi-Powell FN, et al., 2018, Palliative Care Development in Africa: Lessons From Uganda and Kenya., J Glob Oncol, Vol: 4, Pages: 1-10
PURPOSE: Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly. METHODS: This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used. RESULTS: Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries. CONCLUSION: A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries.
Rhee JY, Garralda E, Namisango E, et al., 2018, An Analysis of Palliative Care Development in Africa: A Ranking Based on Region-Specific Macroindicators., J Pain Symptom Manage, Vol: 56, Pages: 230-238
CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries. OBJECTIVES: To analyze comparatively PC development in African countries based on region-specific indicators. METHODS: Data were obtained from the African PC Association Atlas of PC in Africa, and a comparative analysis was conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the World Health Organization public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52 of 54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. RESULTS: Surveys were received from 89% (48 of 54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; and in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.
Allsop MJ, Powell RA, Namisango E, 2018, The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature., BMJ Support Palliat Care, Vol: 8, Pages: 155-163
BACKGROUND: Current coverage of palliative care services in sub-Saharan Africa (SSA) remains woefully inadequate, but harnessing mHealth could be one approach to facilitate greater service coverage and engagement with patients with life-limiting progressive disease. AIMS: A systematic literature review to identify the development and use of mHealth in palliative care services in SSA. METHODS: 13 electronic databases from 1990 to 2015 were searched alongside the manual searching of journals and citation searching of included article reference lists. Articles were assessed against inclusion and exclusion criteria and study details extracted and tabulated by two researchers. Studies were plotted against a modified WHO mHealth and ICT framework to classify how they are targeting health system strengthening. RESULTS: Of the 1110 articles identified, 5 met the inclusion criteria, describing mHealth use in Nigeria, Uganda, Kenya and Malawi. Descriptive analysis has shown that existing mHealth interventions for palliative care services in SSA are limited in number and are being developed for use at the palliative treatment, guidance and coordination stage of care provision. Levels of detail about the development and structure of interventions are low. CONCLUSIONS: mHealth interventions for palliative care in SSA are limited. This is an opportune time to explore how evidence-based mHealth interventions could form part of the evolving palliative care services in the region.
Rhee JY, Garralda E, Namisango E, et al., 2018, Factors Affecting Palliative Care Development in Africa: In-Country Experts' Perceptions in Seven Countries., J Pain Symptom Manage, Vol: 55, Pages: 1313-1320.e2
CONTEXT: Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. OBJECTIVES: To identify key factors affecting PC development in African countries from in-country PC experts' perspectives. METHODS: About 16 PC experts from seven African countries undertook semistructured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison. RESULTS: Emerged themes included drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education; lack of standardization in implementation; limited availability of and/or accessibility to morphine; poverty and disease burden; and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed. CONCLUSION: The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates who built on existing strengths to maximize opportunities. However, the current approach is at high risk in terms of its sustainability, and strategies for maximizing existing resources and growing infrastructure support are needed moving forward.
Namisango E, Allsop MJ, Powell RA, et al., 2018, Investigation of the Practices, Legislation, Supply Chain, and Regulation of Opioids for Clinical Pain Management in Southern Africa: A Multi-sectoral, Cross-National, Mixed Methods Study., J Pain Symptom Manage, Vol: 55, Pages: 851-863
CONTEXT: Sub-Saharan Africa faces an increasing incidence and prevalence of life-limiting and life-threatening conditions. These conditions are associated with a significant burden of pain linked to high morbidity and disability that is poorly assessed and undertreated. Barriers to effective pain management partly relate to lack of access to opioid analgesia and challenges in their administration. OBJECTIVES: To identify country-specific and broader regional barriers to access, as well as the administration of opioids, and generate recommendations for advancing pain management in Southern Africa. METHODS: A parallel mixed methods design was used across three countries: Mozambique, Swaziland, and Zimbabwe. Three activities were undertaken: 1) a review of regulatory and policy documentation, 2) group interviews, and 3) a self-administered key informant survey. RESULTS: Barriers to accessing opioid analgesics for medical use include overly restrictive controlled medicines' laws; use of stigmatizing language in key documents; inaccurate actual opioid consumption estimation practices; knowledge gaps in the distribution, storage, and prescription of opioids; critical shortage of prescribers; and high out-of-pocket financial expenditures for patients against a backdrop of high levels of poverty. CONCLUSION: Policies and relevant laws should be updated to ensure that the legislative environment supports opioid access for pain management. Action plans for improving pain treatment for patients suffering from HIV or non-communicable diseases should address barriers at the different levels of the supply chain that involve policymakers, administrators, and service providers.
Rhee JY, Garralda E, Namisango E, et al., 2018, Developing Macroindicators of Palliative Care Development in Africa: A Process with In-Country and International Experts., J Palliat Med, Vol: 21, Pages: 342-353
BACKGROUND: Indicators specific to the African context are important to measure palliative care (PC) development accurately. OBJECTIVE: To describe the process used to develop a set of PC macroindicators for Africa. DESIGN: Open-ended interviews on national PC development were conducted with five African Country Experts. Indicators were rated (1-4) by 14 Country Experts for validity and feasibility. An additional 11 interviews were conducted to ensure indicator saturation. Indicators scoring ≥3 proceeded to a modified two-round RAND/UCLA Delphi with global experts on PC development (International Committee). Finally, indicators were ranked by the project team. SETTING/SUBJECTS: Sixteen country experts from 7 African countries and 14 International Committee members. RESULTS: One hundred three indicators were rated by Country Experts, and 58 proceeded to the Delphi. Thirty-eight indicators were rated as important by the International Committee, and the project team ranked 19 of these as most important. Service indicators (n = 6) included the number of types of services most important in Africa (e.g., hospices, home based) and coverage. Policy indicators (n = 4) included the existence of PC in national policies, guidelines, and budget and a responsible person. Education indicators (n = 3) consisted of inclusion of PC in medical and nursing curricula and recognition as a specialty. Medicine indicators (n = 4) focused on morphine availability, consumption, and prescribing barriers. Vitality indicators (n = 2) reflected the existence of a national association and its activity. CONCLUSION: The process to develop African-specific PC indicators resulted in 19 indicators that were used to measure PC development as a comparative baseline for development in African countries.
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