PEPFAR Public Health Evaluation-Care and Support -Phase I Kenya

Phase 1, a survey of 120 care facilities in Kenya and Uganda, found that over 90% of facilities provided some level of clinical, psychological,and preventive care. Pain control was very limited with paracetamol often the only analgesic. In focus group discussions, patients appreciated free care and positive attitudes from staff, but said that services would be improved by more staff, shorter queues, and reliable drug supplies

PEPFAR Public Health Evaluation - Care and Support - Phase 2 Kenya

Phase 2 consisted of a longitudinal cohort study to measure patient-reported outcomes of care and support, a costing survey, and qualitative interviews to understand patient and carer experiences

Establishing Cohorts to Generate the Evidence Base to Reduce the Burden of Breast Cancer in Sub-Saharan Africa: Results From a Feasibility Study in Kenya

Purpose: By 2025, Kenya is estimated to experience a two-thirds increase in the incidence of breast cancer. Local research is necessary to generate evidence to inform policy, public health, and medical practice. There have been no longitudinal cohort studies in sub-Saharan Africa of women with and without breast cancer. Our aim is to assess the feasibility of conducting cohort studies in Kenya that consider clinical characteristics, socioeconomic factors, and self-care behaviors. Methods: We initiated a short-term follow-up cohort study of women with and without a diagnosis of breast cancer with baseline face-to-face data collection and one follow-up interview (at approximately 3 months by telephone). We developed tailored instruments to capture demographics, socioeconomic factors, breast cancer risk, ability to identify breast cancer symptoms, treatments received for breast cancer, and quality of life of survivors. Results: We recruited 800 women between the ages of 20 and 60 years and successfully collected baseline data. Completeness of the data was high for demographic variables, but there was a larger proportion of missing information for specific variables required for assessing breast cancer risk. Respondents were able to complete standardized instruments to assess breast cancer knowledge among those without breast cancer and identification of symptoms among survivors. We were able to successfully contact approximately 80% of the participants for follow-up. Conclusion: This short-term follow-up study provides evidence that women can be successfully tracked and contacted for follow-up in the Kenyan setting and offers lessons to establish future longitudinal cohorts to identify approaches to improve breast cancer outcomes

Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma

We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants' experiences of receiving the intervention. The RCT was conducted from July 2011 to November 2012 in a community hospital in the city of Mombasa, Kenya, with a sample of 120 adults with HIV on ART. Thirty participants were purposively selected to take part in a qualitative exit interview, based on study arm and mental health outcome. Inductive thematic analysis revealed increased resistance to HIV-associated stigma in both the intervention and control groups. Specifically, patients in both groups described benefit from the social support, compassionate care, and open and respectful communication they received through study participation. Participants described improved self-image, increased access to social agency, and increased resistance to HIV-associated stigma. Our findings suggest that there is potential to increase resistance to stigma through simple mechanisms of support, compassion, and improved communication in routine care. The self-reported impact of trial participation on stigma also has implications for future trials in populations in resource-constrained settings where stigma is common

Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data.

BACKGROUND: A new model of care is required to meet the changing needs of people living with HIV (PLWH), particularly in low and middle-income countries, where prevalence is highest. We evaluated a palliative care intervention for PLWH in Mombasa, Kenya. Although we found no effect on pain (primary outcome), there was a positive effect on mental health (secondary outcome) in the intervention group. To inform replication and implementation, we have determined the active ingredients of the intervention and their mechanisms of action. METHODS: We conducted a randomised controlled trial (RCT) with qualitative exit interviews in HIV clinic attenders. The intervention was delivered over 5 months, with a minimum of 7 clinical contacts. Longitudinal quantitative data on components of care received were analysed using area under the curve and logistic regression. Qualitative data were analysed using inductive and deductive thematic analysis. RESULTS: Quantitative data analysis identified that intervention patients received more weak opioid, laxatives, discussion about spiritual worries, emotional support from staff for themselves and their families, time to talk about worries, discussion about future and planning ahead. Qualitative data analysis found that patients reported that having time to talk, appropriate pain medication and effective health education was of therapeutic value for their psychological well-being. Integration of mixed method findings suggest that positive effect in quantitative measures of mental health and well-being are attributable to the active ingredients of: appropriate medication, effective health education and counselling, and having time to talk in clinical encounters. Mechanisms of action include symptom relief, improved understanding of illness and treatment, and support focused on articulated concerns. CONCLUSIONS: Routine care must provide opportunities and means for existing clinical staff to make routine appointments more person-centred. This approach enabled staff to identify and manage multidimensional problems and provide tailored health education and counselling. TRIAL REGISTRATION: ClinicalTrials.gov ( NCT01608802 ). Registered 12th May 2012

Towards person-centered quality care for children with life-limiting and life-threatening illness: self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

Abstract Background: Paediatric life-limiting and life-threatening conditionslife-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: 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). 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

Silver linings: a qualitative study of desirable changes to cancer care during the COVID-19 pandemic

Introduction: Public health emergencies and crises such as the current COVID-19 pandemic can accelerate innovation and place renewed focus on the value of health interventions. Capturing important lessons learnt, both positive and negative, is vital. We aimed to document the perceived positive changes (silver linings) in cancer care that emerged during the COVID-19 pandemic and identify challenges that may limit their long-term adoption. Methods: This study employed a qualitative design. Semi-structured interviews (n = 20) were conducted with key opinion leaders from 14 countries. The participants were predominantly members of the International COVID-19 and Cancer Taskforce, who convened in March 2020 to address delivery of cancer care in the context of the pandemic. The Framework Method was employed to analyse the positive changes of the pandemic with corresponding challenges to their maintenance post-pandemic. Results: Ten themes of positive changes were identified which included: value in cancer care, digital communication, convenience, inclusivity and cooperation, decentralisation of cancer care, acceleration of policy change, human interactions, hygiene practices, health awareness and promotion and systems improvement. Impediments to the scale-up of these positive changes included resource disparities and variation in legal frameworks across regions. Barriers were largely attributed to behaviours and attitudes of stakeholders. Conclusion: The COVID-19 pandemic has led to important value-based innovations and changes for better cancer care across different health systems. The challenges to maintaining/implementing these changes vary by setting. Efforts are needed to implement improved elements of care that evolved during the pandemic

Redefining palliative care-a new consensus-based definition

Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span

Reframing Non-Communicable Diseases and Injuries for Equity in the Era of Universal Health Coverage: Findings and Recommendations from the Kenya NCDI Poverty Commission.

Background: Kenya has implemented a robust response to non-communicable diseases and injuries (NCDIs); however, key gaps in health services for NCDIs still exist in the attainment of Universal Health Coverage (UHC). The Kenya Non-Communicable Diseases and Injury (NCDI) Poverty Commission was established to estimate the burden of NCDIs, determine the availability and coverage of health services, prioritize an expanded set of NCDI conditions, and propose cost-effective and equity-promoting interventions to avert the health and economic consequences of NCDIs in Kenya. Methods: Burden of NCDIs in Kenya was determined using desk review of published literature, estimates from the Global Burden of Disease Study, and secondary analysis of local health surveillance data. Secondary analysis of nationally representative surveys was conducted to estimate current availability and coverage of services by socioeconomic status. The Commission then conducted a structured priority setting process to determine priority NCDI conditions and health sector interventions based on published evidence. Findings: There is a large and diverse burden of NCDIs in Kenya, with the majority of disability-adjusted life-years occurring before age of 40. The poorest wealth quintiles experience a substantially higher deaths rate from NCDIs, lower coverage of diagnosis and treatment for NCDIs, and lower availability of NCDI-related health services. The Commission prioritized 14 NCDIs and selected 34 accompanying interventions for recommendation to achieve UHC. These interventions were estimated to cost $11.76 USD per capita annually, which represents 15% of current total health expenditure. This investment could potentially avert 9,322 premature deaths per year by 2030. Conclusions and Recommendations: An expanded set of priority NCDI conditions and health sector interventions are required in Kenya to achieve UHC, particularly for disadvantaged socioeconomic groups. We provided recommendations for integration of services within existing health services platforms and financing mechanisms and coordination of whole-of-government approaches for the prevention and treatment of NCDIs

Redefining Palliative CaredA New Consensus-Based Definition

Context. The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective. The main objective of this article is to present the research behind the new definition. Methods. The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results. The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion. Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span