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.

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.

Correlates of cervical cancer prevention advocacy and cervical cancer screening in Uganda: Cross-sectional evaluation of a conceptual model.

An approach to increasing cervical cancer (CC) screening is to empower women who have been screened to act as advocates and encourage other women they know to get screened. We examined correlates of CC screening advocacy and CC screening uptake among constructs in our conceptual model of factors driving engagement in advocacy. A cross-sectional, correlational analysis was conducted with survey data from 40 women (index participants) who had recently screened for CC, and 103 female members of their social network (alter participants) who had not been screened. Variables measured included CC prevention advocacy, as well as internalized CC stigma, sharing of CC screening result, CC knowledge, healthy bodily intake (i.e., diet; alcohol and cigarette use) and self-efficacy related to CC service utilization and CC prevention advocacy, which were hypothesized to be associated with advocacy. Bivariate and multivariable regression analyses, controlling for clustering, were conducted. Among index participants, greater engagement in advocacy was positively correlated with CC knowledge, sharing of CC screening result, and CC service utilization self-efficacy. Women who had screened positive and received treatment for precancerous lesions reported greater CC prevention advocacy, CC knowledge and healthy living, compared to those who screened negative. In multiple regression analyses, CC screening was positively associated with CC prevention advocacy and being age 36 or older, and CC prevention advocacy was also positively associated with CC service utilization self-efficacy. These findings support the validity of our conceptual model regarding factors associated with engagement in CC prevention advocacy among women screened for CC. The strong association between CC prevention advocacy and both CC screening uptake and CC service utilization self-efficacy suggests the potential value of advocacy promotion among women who have been screened, as well as for increasing screening uptake.

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).

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.

Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda.

PURPOSE: Despite advances in palliative care in Uganda, there has been relatively little recent patient-centered research investigating end-of-life outcomes in this region. We assessed the quality of dying and death of patients with cancer in hospice care in Uganda. METHODS: Bereaved caregivers of patients who received hospice care in Uganda and died 2-12 months earlier (N = 201) completed the Quality of Dying and Death Questionnaire, which includes 31 items and single-item ratings of overall quality of dying and moment of death, and the FAMCARE measure of family satisfaction with cancer care. RESULTS: Caregivers reported low-intermediate overall quality of dying (mean [M] standard deviation [SD], 3.25 [2.98]) and overall quality of moment of death (M [SD], 3.59 [3.51]), with 47.0% of the ratings of these two outcomes in the poor range, but the mean family satisfaction with care was high (M [SD], 77.75 [10.26]). Most Quality of Dying and Death Questionnaire items (74.2%) were rated within the intermediate range. Items rated within the good range were religious-spiritual, interpersonal, and personal facets; two items within the poor range reflected physical functioning. Overall quality of dying was most strongly correlated with pain control (Spearman's rho [rs] = 0.45, P < .001), and overall quality of moment of death with state of consciousness before death and being unafraid of dying (rs = 0.42, P < .001). The FAMCARE score was not correlated with overall quality of dying or moment of death (P = .576-.813). Only one FAMCARE item, information on managing patient's pain, was correlated with overall quality of moment of death (rs = -0.19, P = .008). CONCLUSION: End-of-life care in hospices in Uganda requires further improvement, particularly with regard to symptom control. Patient-centered data could bolster advocacy efforts to support quality improvement of palliative care in this and other countries.

The Meaning of Healing to Adult Patients with Advanced Cancer.

BACKGROUND: This study aimed to explore the meaning of healing from the perspective of adult patients with advanced cancer. METHODS: We conducted a secondary analysis of data from a primary study which used a cognitive interview approach to assess the face and content validity of a spiritual and psychological healing measure (NIH-HEALS). This analysis focused on responses to the question, "What does the term 'healing' mean to you?" Data were de-identified, transcribed verbatim, and imported in NVivo for thematic analysis in line with interpretive phenomenological methods. RESULTS: Thirty-five adults with advanced cancer participated in the study. We identified nine major themes: acceptance, surrender, faith, hope, peace, freedom from suffering (e.g., pain, problems, or other bothersome factors), overcoming/transcending disease, positive emotions (e.g., happiness), recovery from illness or disease. One participant discussed healing as synonymous with death, and two associated it with social relations and social support. CONCLUSION: Themes from patients' responses suggest subjective and varied definitions of healing which encompass physical, social, spiritual, and psychological domains of well-being, distinct from the physical cure of disease. Clinicians should adopt a holistic, person-centered approach to care, attending to bodily, psychosocial, spiritual, and emotional needs to help patients find meaning in their experiences, nourish resilience, and experience a sense of healing-as they define it.

Depressive Symptoms and Palliative Care Concerns Among Patients With Non-communicable Diseases in Two Southern African Countries.

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.

Social network-based group intervention to promote uptake of cervical cancer screening in Uganda: study protocol for a pilot randomized controlled trial.

INTRODUCTION: Cervical cancer (CC) is the most common cancer and accounts for one quarter of all cancer-related deaths among women in Uganda, where lifetime CC screening is estimated to be as low as 5%. This study will evaluate the feasibility, acceptability, and preliminary efficacy of a social network-based group intervention designed to empower women who have received CC screening to encourage women in their social network to also screen. METHODS: Forty adult women (index participants) who have recently screened for CC will be recruited, 20 of whom will be randomly assigned to take part in the intervention and 20 to the wait-list control. Each index participant will be asked to recruit up to three female social network members (i.e., alters; maximum total = 120 alters) who have not screened for CC to participate in the study. Assessments (survey and chart abstraction) will be administered at baseline and month 6 to index and alter participants. The primary outcome is CC screening among participating alters, with a secondary outcome being engagement in CC prevention advocacy among index participants. Repeated-measure multivariable regression analyses will be conducted to compare outcomes between the intervention and control arms. DISCUSSION: If successful, this intervention model has the potential not only to impact uptake of CC screening and treatment but also to establish a paradigm that can be applied to other health conditions. TRIAL REGISTRATION: NIH Clinical Trial Registry NCT04960748 (clinicaltrials.gov).

Turnaround time and barriers to treatment of newly diagnosed cancer in Uganda: a mixed-methods longitudinal study.

Introduction: Cancer represents a growing public health concern. Late-stage at diagnosis, limited access to effective treatment, and loss to follow-up are responsible for dismal outcomes. Objective: To describe care pathways, turnaround times, and identify barriers to timely initiation of cancer treatment. Methods: Using a sequential mixed-methods design involving focus group discussions, we followed up 50 participants between January, and June 2018. We computed the median observed turnaround time to treatment (TTT) at each care step and reported delay as deviations from the proposed ideal turnaround times. Results: The ideal TTT with either chemotherapy, or radiotherapy, or surgery was 8, 14, and 21 days respectively. At a median follow-up time of 35.5 days (IQR 17-66), only 29 of the 50 study participants had completed all steps between registration and initiation of treatment, and the observed median TTT was 16 days (9 - 22 days) for chemotherapy, and 30 days (17 - 49 days) for radiotherapy, reflecting a significant delay (p-value = 0.017). Reported barriers were; shortage of specialists, patients required visits to outside facilities for staging investigations, prohibitive costs, poor navigation system and time wastage. Conclusions: When compared to the recommended ideal turnaround time, there was significant institutional delay in access to chemotherapy and radiotherapy attributed to multiple external and internal healthcare system barriers.

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.

Cross Cultural Adaptation and Cognitive Testing of a Psycho-Social-Spiritual Healing Measure, the NIH Healing Experiences in All Life Stressors-NIH-HEALS.

BACKGROUND: Cancer is associated with trauma and stress which impacts the physical, psychological, and spiritual/existential well-being of patients. Psychological/behavioral healing may help alleviate this distress and the associated health-related suffering. Psycho-Social-Spiritual healing outcome measures are thus needed to stimulate service development. The NIH Healing Experiences in All Life Stressors (NIH-HEALS), is a novel 35-item measure of psycho-social-spiritual healing, developed in USA and is yet to be validated and adapted for use in African countries. OBJECTIVES: This study aimed to assess the face and content validity of the NIH-HEALS in the population of cancer patients in Uganda and to culturally adapt this measure. METHODS: Cross-sectional study using cognitive interviewing alongside standard piloting. We recruited adult (18 years and above) patients with advanced cancer from Hospice Africa Uganda. Interviews were conducted in two phases, using the think aloud technique and concurrent probing and were audio recorded. Phase 1 was used to identify initial concerns around clarity of the statements, and phase 2 further explored whether the issues of clarity had been addressed, alongside the standard cognitive interview parameters. The transcripts were imported into NVivo-12 analyzed using the content analysis technique and categorized using Tourengeau's information processing model. RESULTS: We recruited thirty-five (35) patients: phase one (n = 5) two (n = 30). The median completion time was 20 minutes. Problems identified included comprehension of some statements, words, and phrases, suggestions to include local examples, highlighting of potentially sensitive statements that lean towards difficult conversations, and some cultural differences in the construction of the "Trust and Acceptance" construct, our sample showed less emphasis on family/friend relations. This feedback was used to adapt the NIH-HEALS for the local context. CONCLUSION: The NIH-HEALS has sufficient face and content validity properties to be used among palliative cancer patients in Uganda. We propose some changes to inform the adaptation of this measure for the local context.

Progress Update: Palliative Care Development Between 2017 and 2020 in Five African Countries.

CONTEXT: This article provides a progress update on the development of palliative care in five countries in Africa-Kenya, Rwanda, South Africa, Tanzania, and Uganda-between 2017 and 2021, and explores the role of palliative care advocates and the Open Society Foundations in this process. OBJECTIVES: To provide a progress update on the development of palliative care in Kenya, Rwanda, South Africa, Tanzania, and Uganda between 2017 and 2021 and to examine the impact of twenty years of Open Society Foundations support for palliative care in the region on the integration of palliative care into publicly funded health systems. METHODS: In the mid-2000s, palliative care pioneers in these five countries, supported by Open Society Foundations, began to train health care providers and engage policy makers to ensure that people with life-limiting illnesses and their families had access to appropriate services and essential medicines. In the late 2010s, it embraced an approach that mixed strategic communications and advocacy for inclusion of palliative care into universal health coverage with technical assistance. RESULTS: By the mid-2010s, a vibrant palliative care community existed that worked closely with governments to develop palliative care policies, train providers, and ensure access to morphine. By 2021, Kenya and Rwanda had made significant progress scaling up palliative care services as part of the public health care system, and Uganda's government had instructed public hospitals to start providing these services. In South Africa and Tanzania, governments had yet to commit to publicly funded palliative care services. CONCLUSION: The experiences in these countries suggest that mixing advocacy, communications, and technical assistance can lead to substantial progress for patient access although full inclusion in universal health coverage remained uncertain in all but Rwanda.

The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health Meeting and the 7th International African Palliative Care Conference, held from the 24th to 26th August 2022 in Kampala, Uganda and virtually.

The 7th International African Palliative Care Conference and the 4th African Ministers of Health Meeting were held in Kampala from the 24th to 26th August 2022. The theme of the conference - Palliative Care in a Pandemic - reflected the reality of palliative care provision on the continent, and the experience of patients and providers over the past 2 years. It was hosted by the African Palliative Care Association and the Worldwide Hospice Palliative Care Alliance with co-sponsors being the International Children's Palliative Care Network, the International Association of Hospice and Palliative Care, Global Partners in Care and Palliative care in Humanitarian Aid Situations and Emergencies. The conference was held in Kampala as a hybrid event, with a mix of in-person, pre-recorded and virtual presentations. The African Ministers of Health Meeting held on the 24th August was attended by delegates from 25 Ministries of Health, with 92 participants in-person and 122 attending virtually. Hosted by the Minister of State for Primary Health Care in Uganda, the participants at the meeting endorsed a Declaration on Palliative Care in a Pandemic. The main conference, held on the 25th and 26th August, was attended by 334 delegates from 40 countries, 199 (60%) of whom attended in-person. Key themes discussed throughout the conference included: contagious compassion; building a business case and evidence for palliative care in Africa; palliative care policy, funding and sustainability; the importance of collaboration and global partnerships; palliative care for all ages, children through to the elderly, and all conditions; the need to be innovative and creative, embracing technology; and a feeling of hopefulness in the future of palliative care in the region as we go forward together. The impact of the pandemic has been significant on everyone. Despite this, and the limitations imposed by the pandemic, the African palliative care community has come through it stronger, is committed to continuing the development of palliative care across the region, working together and is hopeful for the future.

Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers.

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.

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.

Do the Clinical Management Guidelines for Covid-19 in African Countries Reflect the African Quality Palliative Care Standards? A Review of Current Guidelines.

CONTEXT: Palliative care should be a component of COVID-19 management to relieve suffering, improve patient outcomes and save cost. OBJECTIVES: We aimed to identify and critically appraise the palliative care recommendations within COVID-19 case management guidelines in African countries. METHODS: The study employed systematic guideline review design. All guidelines from any country in Africa, of any language, published between December 2019 and June 2020 were retrieved through online search and email to in-country key contacts. We conducted a content analysis of the palliative care recommendations within the guidelines and appraised the recommendations using African Palliative Care Association standards for providing quality palliative care. RESULTS: We retrieved documents from 29 of 54 African countries. Fifteen documents from 15 countries were included in the final analysis, of which eight countries have identifiable PC recommendations in their COVID-19 management guidelines. Of these eight, only one country (South Sudan) provided comprehensive palliative care recommendations covering the domains of physical, psychological, social and spiritual wellbeing, two (Namibia and Uganda) addressed only physical and psychological wellbeing while the remaining five countries addressed only physical symptom management. CONCLUSIONS: Comprehensive palliative care which addresses physical, psychological, social and spiritual concerns must be prioritized within case management guidelines in African countries.

Design and Evaluation of a Novel Mobile Phone Application to Improve Palliative Home-Care in Resource-Limited Settings.

CONTEXT: Mobile health (mHealth) provides an opportunity to use internet coverage in low- and middle-income countries to improve palliative care access and quality. OBJECTIVES: This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. METHODS: A codesign process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda, and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. RESULTS: N = 149 caregivers participated and uploaded n = 837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n = 355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) a need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. CONCLUSION: An outcomes-focused app and data dashboard are acceptable to caregivers and health-care professionals. They are beneficial in identifying, monitoring, and communicating patient outcomes and in allocating staff resource to those most in need.