Understanding women's and men's perspectives on cervical cancer screening in Uganda: a qualitative study.

BACKGROUND: Cervical cancer remains a significant but preventable threat to women's health throughout much of the developing world, including Uganda. Cervical cancer screening and timely treatment of pre-cancerous lesions is a cost-effective means of mitigating cervical cancer morbidity and mortality. However, only 5% of women in Uganda have ever been screened. Barriers to screening, such as social stigma and access to safe conditions, have been previously identified, but insights into the role of male spouses in encouraging or discouraging screening have been limited. To our knowledge, no studies have compared barriers and facilitators among women who had or had not yet been screened and male partners of screened and unscreened women. METHODS: To resolve this gap, we conducted 7 focus groups- 3 among women who had been screened, 3 among those who had not been screened, and 1 among men whose female partners had or had not been screened. We performed qualitative thematic analysis on the focus group data. RESULTS: We identified several important factors impacting screening and the decision to screen among women, ranging from stigma, availability of screening, false beliefs around the procedure and side effects, and the role of spousal support in screening promotion. Male spousal perspectives for screening ranged from full support to hesitancy around male-performed exams and possible prolonged periods without intercourse. CONCLUSION: This exploratory work demonstrates the importance of dialogue both among women and their male partners in enhancing screening uptake. Efforts to address screening uptake are necessary given that it is an important means of mitigating the burden of cervical cancer. Interventions along these lines need to take these barriers and facilitators into account in order to drive up demand for screening.

Measuring palliative care integration in Malawi through service provision, access, and training indicators: the Waterloo Coalition Initiative.

BACKGROUND: Fewer than 1 in 20 people on the African continent in need of palliative care receive it. Malawi is a low-income country in sub-Saharan Africa that has yet to achieve advanced palliative care integration accompanied by unrestricted access to pain and symptom relieving palliative medicines. This paper studied the impact of Malawi's Waterloo Coalition Initiative (WCI) - a local project promoting palliative care integration through service development, staff training, and increased service access. METHODS: Interdisciplinary health professionals at 13 hospitals in southern Malawi were provided robust palliative care training over a 10-month period. We used a cross-sectional evaluation to measure palliative care integration based on 11 consensus-based indicators over a one-year period. RESULTS: 92% of hospitals made significant progress in all 11 indicators. Specifically, there was a 69% increase in the number of dedicated palliative care rooms/clinics, a total of 253 staff trained across all hospitals (a 220% increase in the region), substantive increases in the number of patients receiving or assessed for palliative care, and the number of hospitals that maintained access to morphine or other opioid analgesics while increasing the proportion of referrals to hospice or other palliative care programs. CONCLUSION: Palliative care is a component of universal health coverage and Sustainable Development Goal 3. The WCI has made tremendous strides in establishing and integrating palliative care services in Malawi with notable progress across 11 project indicators, demonstrating that increased palliative care access is possible in severely resource-constrained settings through sustained models of partnership at the local level.

In-hospital psychoeducation for family caregivers of Nigerian children with cancer (The RESCUE Study).

OBJECTIVES: High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers' outcomes relating to preparedness to provide care, burden of caregiving, and quality of life (QoL). METHODS: This quasi-experimental (pre-and-posttest) design, involved family caregivers of children on admission for cancer treatment in 4 Nigerian tertiary hospitals. Eligible participants received 2 structured, psychoeducational training sessions delivered by a multidisciplinary oncology team, focusing on the management of patients' condition, spiritual care, self-care, and support. RESULTS: Subjects were mainly female (79.5%) and mostly mothers to children undergoing cancer treatment (74.7%). Commonest cancer type was acute lymphoblastic leukemia (23.9%) with evidence of metastatic disease found in 9.6% of children. Significant improvements were observed between pre- and posttest for unmet needs (z = -9.3; p < 0.001), preparedness for caregiving in palliative care (PCPC) (z = -7.0; p < 0.001), and overall QoL (z = -7.3; p < 0.001). A significant reduction in CB was also reported (z = -8.7; p < 0.001). SIGNIFICANCE OF RESULTS: This psychoeducational intervention (PEI) resulted in significant improvements in unmet needs, CB and significant improvements in PCPC. However, a reduction in QoL of the family caregivers was also observed. Findings from this study should encourage the use of well-crafted PEIs, delivered within hospital settings to promote improvements in outcomes for informal caregivers of hospitalized children suffering from cancer, in an African context. Further intervention development is required to better understand intervention components influencing changes in outcomes, while exploring feasibility testing and adaptation to similar settings in Nigeria and within Africa.

Mediators and moderators of the effect of the game changers for cervical cancer prevention intervention on cervical cancer screening among previously unscreened social network members in Uganda.

INTRODUCTION: Cervical cancer (CC) rates are high in Uganda, yet CC screening rates are very low. Our peer advocacy group intervention, Game Changers for Cervical Cancer Prevention (GC-CCP), was shown to increase CC screening uptake among social network members. In this secondary analysis, we examined mediators and moderators of this effect to better understand how and for whom the intervention was most successful in promoting CC screening. METHODS: We conducted a pilot randomized controlled trial of GC-CCP in Namayingo district, Eastern Uganda between September 2021 and April 2022. Forty adult women who had screened for CC in the past year (index participants) enrolled at baseline: 20 were randomized to receive the 7-session intervention to empower women to engage in CC prevention advocacy, and 20 were assigned to the waitlist control; from these index participants, 103 unscreened social network members (alters) also enrolled. All participants were assessed at baseline and month 6 follow-up. Change in cognitive and behavioral CC-related constructs from baseline to month 6 were examined as mediators, using multivariate linear regression analysis. Index and alter demographics and index CC treatment status were examined as moderators. RESULTS: Increased alter engagement in CC prevention advocacy fully mediated the intervention effect on alter uptake of CC screening, and was associated with an increased likelihood of alter CC screening. CC treatment status of the index participant was the sole moderator of the intervention effect, as those in the intervention group who had screened positive and received treatment for pre-cancerous lesions were more likely to have alters who got screened for CC by month 6. CONCLUSION: The effect of GC-CCP on alter CC screening is greater when the alter reports increased engagement in her own advocacy for CC prevention with others. The intervention effects on increased engagement in CC prevention advocacy among both index and alter participants suggest a diffusion of advocacy, which bodes well for dissemination of knowledge and screening activation throughout a network and the larger community.

Effects of a peer advocacy intervention on cervical cancer screening among social network members: results of a randomized controlled trial in Uganda.

Cervical cancer (CC) is the most common cancer among women in Uganda, yet lifetime CC screening is as low as 5%. Training women who have screened for CC to engage in peer advocacy could increase uptake of CC screening in social networks. We conducted a randomized controlled trial of a peer-facilitated, manualized, 7-session group intervention to train women to engage in CC prevention advocacy. Forty women recently screened for CC (index participants) enrolled and were assigned to receive the intervention (n = 20) or wait-list control (n = 20). Each index was asked to recruit up to three female social network members (alters) who had not been screened for CC (n = 103 enrolled alters). All index and alter participants were assessed at baseline and month-6 follow-up. All but one (n = 39; 98%) index and 98 (95%) alter participants completed the month 6 assessment. In multivariate regression models controlling for baseline outcome measures and demographic covariates, intervention alters were more likely to have been screened for CC at month 6 [67% vs. 16%; adjusted OR (95% CI) = 12.13 (4.07, 36.16)], compared to control alters. Data also revealed significant increased engagement in CC prevention advocacy, among both index and alter participants in the intervention group at month 6, compared to the control group. The intervention was highly effective in increasing CC screening uptake among social network members, and engagement in CC prevention advocacy among not only intervention recipients, but also targets of advocacy, suggesting the potential for wide dissemination of CC knowledge.Trial Registration. NIH Clinical Trial Registry NCT04960748 ( clinicaltrials.gov ).

Increased Knowledge Mediates the Effect of Game Changers for Cervical Cancer Prevention on Diffusion of Cervical Cancer Screening Advocacy Among Social Network Members in a Pilot Trial.

BACKGROUND: Game Changers for Cervical Cancer Prevention (GC-CCP), a peer-led, group advocacy training intervention, increased cervical cancer (CC) prevention advocacy not only among intervention recipients, but also their social network members (referred to as "alters") who were targeted with advocacy in a pilot randomized controlled trial. We examined mediators and moderators of this effect on alter advocacy, to understand how and for whom the intervention had such an effect. METHOD: Forty women (index participants) who had recently screened for CC enrolled and were randomly assigned to receive the GC-CCP intervention (n = 20) or the wait-list control (n = 20). Up to three alters from each participant (n = 103) were surveyed at baseline and month 6. Measures of CC-related cognitive constructs (knowledge, enacted stigma, and risk management self-efficacy), as well as extent of advocacy received from index participants, were assessed as mediators of the intervention effect on alter advocacy using multivariate regression analyses. Alter characteristics were examined as moderators. RESULTS: Increased CC-related knowledge partially mediated the intervention effect on increased alter engagement in CC prevention advocacy; those with greater gains in knowledge reported greater engagement in advocacy. No moderators of the intervention effect were identified. CONCLUSION: The effect of GC-CCP on alter CC prevention advocacy is enhanced by increased alter knowledge pertaining to CC prevention, causes, and treatment and suggests this may be key for diffusion of intervention effects on increased CC prevention advocacy throughout a social network. TRIAL REGISTRATION: NCT04960748 (registered on clinicaltrials.gov , 7/14/2021).

Palliative care in Malawi: a scoping review.

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.

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

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.

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.

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.

Impact of accreditation on health care services performance in Kiryandongo district, Uganda: a longitudinal study.

BACKGROUND: The COVID-19 pandemic has emphasised the need for quality laboratory services worldwide. There is renewed focus to strengthen country capacities and laboratories to effectively respond to public health emergencies and patient outcomes. Uganda launched the accreditation program for public health facilities in 2016 with sixteen laboratories. As of June 2021, twenty-three public laboratories have attained ISO 15189:2012 accreditation status. Despite the tremendous achievements of accrediting laboratories in Uganda, laboratory services still face challenges like stock out of commodities and limited testing scopes. We conducted this study to evaluate the impact of accreditation on health care services performance in Kiryandongo district, Uganda. METHODS: We conducted a longitudinal study from January 1, 2020- April 30, 2021 at ten health facilities in Kiryandongo district. We collected health care services performance data from the MoH dhis-2 on selected indicators for HIV, TB, Malaria, Laboratory, Maternal & child health and dhis-2 reporting. We used Generalized Estimating Equations to estimate the impact of accreditation on health care services performance at the different health facilities. RESULTS: The odds at the accredited facility in comparison to the non-accredited public facilities were; 14% higher for ART enrolment (OR = 1.14, 95% CI: 1.04-1.25), 9% lower for determine testing kits stock out (OR = 0.91, 95% CI: 0.85-0.97), 28% higher for TB case diagnosis (OR = 1.28, 95% CI: 1.10-1.49), 19% higher for TB case enrolment (OR = 1.19, 95% CI: 1.04-1.36), 104% higher for maternity admissions (OR = 2.04, 95% CI: 1.60-2.59), 63% higher for maternity deliveries (OR = 1.63, 95% CI: 1.39-1.90) and 17% higher for reporting hmis 10:01 data to dhis-2 (OR = 1.17, 95% CI: 1.04-1.31). The odds at the accredited facility in comparison to the non-accredited PNFP facilities were; 26% higher for ART enrolment (OR = 1.26, 95% CI: 1.17-1.36), 33% higher for TB case diagnosis (OR = 1.33, 95% CI: 1.15-1.55), 24% higher for TB case enrolment (OR = 1.24, 95% CI: 1.09-1.42), 136% higher for maternity admissions (OR = 2.36, 95% CI: 1.89-2.94), 76% higher for maternity deliveries (OR = 1.76, 95% CI: 1.51-2.04) and 2% higher for reporting of hmis-10:01 data to dhis-2 (OR = 1.02, 95% CI: 1.01-1.03). CONCLUSIONS: HIV, TB, laboratory, MCH, and reporting to dhis-2 selected indicators were positively impacted by accreditation. This impact translated into increased health care services performance at the accredited facility as compared to the non-accredited facilities.

Prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda.

Caregiving for cancer and HIV/AIDS patients is complex, and the burden may vary with the type of disease, stages of the illness, and the type of palliative care intervention. Cancer and HIV/AIDS diagnosis and treatment adversely affect not only the patients but also their families and caregivers. They are vulnerable to stress, distress, and depression. Studies in developed countries have shown high prevalence of depression among family caregivers, but the scale of the problem among family caregivers in Uganda is not known. OBJECTIVE: This study aimed to establish the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. METHOD: We used a mixed method study to determine the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9) and collected socio-demographic data using a tailored questionnaire. We used binary logistic regression to assess for the association between depressive symptomatology and caregiver socio-demographic and clinical characteristics. RESULTS: We recruited 161 family caregivers, 64% of whom were female. The study revealed a high prevalence of depressive symptoms (46%) (n = 74) among the family caregivers. Education status and religious affiliation were significantly associated with depressive symptomatology. SIGNIFICANCE OF RESULTS: Family caregivers of palliative care patients face a high burden of depressive symptoms. Efforts to care for family caregivers within palliative care should include assessment and management of depressive symptoms in this population.

Developing a short-form version of the HIV Disability Questionnaire (SF-HDQ) for use in clinical practice: a Rasch analysis.

BACKGROUND: Disability is an increasingly important health-related outcome to consider as more individuals are now aging with Human Immunodeficiency Virus (HIV) and multimorbidity. The HIV Disability Questionnaire (HDQ) is a patient-reported outcome measure (PROM), developed to measure the presence, severity and episodic nature of disability among adults living with HIV. The 69-item HDQ includes six domains: physical, cognitive, mental-emotional symptoms and impairments, uncertainty and worrying about the future, difficulties with day-to-day activities, and challenges to social inclusion. Our aim was to develop a short-form version of the HIV Disability Questionnaire (SF-HDQ) to facilitate use in clinical and community-based practice among adults living with HIV. METHODS: We used Rasch analysis to inform item reduction using an existing dataset of adults living with HIV in Canada (n = 941) and Ireland (n = 96) who completed the HDQ (n = 1037). We evaluated overall model fit with Cronbach's alpha and Person Separation Indices (PSIs) (≥ 0.70 acceptable). Individual items were evaluated for item threshold ordering, fit residuals, differential item functioning (DIF) and unidimensionality. For item threshold ordering, we examined item characteristic curves and threshold maps merging response options of items with disordered thresholds to obtain order. Items with fit residuals > 2.5 or less than - 2.5 and statistically significant after Bonferroni-adjustment were considered for removal. For DIF, we considered removing items with response patterns that varied according to country, age group (≥ 50 years versus < 50 years), and gender. Subscales were considered unidimensional if ≤ 5% of t-tests comparing possible patterns in residuals were significant. RESULTS: We removed 34 items, resulting in a 35-item SF-HDQ with domain structure: physical (10 items); cognitive (3 items); mental-emotional (5 items); uncertainty (5 items); difficulties with day-to-day activities (5 items) and challenges to social inclusion (7 items). Overall models' fit: Cronbach's alphas ranged from 0.78 (cognitive) to 0.85 (physical and mental-emotional) and PSIs from 0.69 (day-to-day activities) to 0.79 (physical and mental-emotional). Three items were rescored to achieve ordered thresholds. All domains demonstrated unidimensionality. Three items with DIF were retained because of their clinical importance. CONCLUSION: The 35-item SF-HDQ offers a brief, comprehensive disability PROM for use in clinical and community-based practice with adults living with HIV.

The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study.

BACKGROUND: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. AIM: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. DESIGN: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. SETTING/PARTICIPANTS: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. RESULTS: A total of 48 transcripts were analyzed. Mean age was 37 (range 19-75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. CONCLUSIONS: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe.

INTRODUCTION: Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders' data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe. METHODS: We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care. RESULTS: Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients. CONCLUSION: We identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.

Data and information needs of policymakers for palliative cancer care: a multi-country qualitative study.

BACKGROUND: Despite regional efforts to address concerns regarding the burden of advanced cancer in Africa, urgent attention is still required. Widespread issues include late symptom presentation, inaccessibility of palliative care services, limited resources, poor data quality, disparity in data availability, and lack of stakeholder engagement. One way of helping to address these issues is by understanding and meeting the data and information needs of policymakers in palliative cancer care. AIMS: To explore the views of policymakers regarding data availability, data gaps and preferred data formats to support policy and decision making for palliative cancer care in Nigeria, Uganda and Zimbabwe. METHODS: A secondary analysis of interview data collected as part of a cross-sectional qualitative study that aimed to explore the data and information needs of patients, policymakers and caregivers in Nigeria, Uganda and Zimbabwe. Framework analysis, guided by the MEASURE evaluation framework, was used to qualitatively analyse the data. RESULTS: Twenty-six policymakers were recruited. The policymakers data and information concerns are aligned to the MEASURE evaluation framework of data and information use and include; assessing and improving data use (e.g. low prioritisation of cancer); identifying and engaging the data user (e.g. data processes); improving data quality (e.g. manual data collection processes); improving data availability (e.g. the accessibility of data); identifying information needs (e.g. what is 'need to know'?); capacity building in core competencies (e.g. skills gaps); strengthening organisational data demand and use (e.g. policy frameworks); monitoring, evaluating and communicating of data demand and use (e.g. trustworthiness of data). CONCLUSIONS: We present evidence of data sources, challenges to their access and use, guidance on data needs for policymakers, and opportunities for better engagement between data producers, brokers and users. This framework of evidence should inform the development of strategies to improve data access and use for policy and decision making to improve palliative cancer services in participating countries with relevance to the wider region.

Preparedness and Capacity of Indian Palliative Care Services to Respond to the COVID-19 Pandemic: An Online Rapid Assessment Survey.

BACKGROUND: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. AIM: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. METHODS: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used. RESULTS: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1-10 scale). CONCLUSION: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans.

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.

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.

"From good hearted community members we get volunteers" - an exploratory study of palliative care volunteers across Africa.

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 workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.

Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.

Policy Points We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis. CONTEXT: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide. METHODS: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively. RESULTS: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered. CONCLUSIONS: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.

Change in multidimensional problems and quality of life over three months after HIV diagnosis: a multicentre longitudinal study in Kenya and Uganda.

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 = 0·42-0·96, p = 0·033). CONCLUSION: Although some self-reported outcomes improve over time, burden of interpersonal problems remains substantial and existential concerns do not improve.