The caring experiences of family caregivers for patients with advanced cancer in Uganda: A qualitative study.

BACKGROUND: Cancer morbidity and mortality is rising in sub-Saharan Africa. Given this rise, family caregivers play an integral role in provision of quality cancer care services. This study explored the family caregivers (FCGs)/relatives' experiences of caring for patients with advanced cancer (stage 3 or stage 4) in Uganda. METHODS: This was a descriptive qualitative study exploring the lived experiences of FCGs of patients with advanced cancer attending care at the Uganda cancer institute. We purposively recruited twelve FCGs and conducted face-to-face in-depth interviews using an interviewer-guided semi-structured questionnaire. Data were analyzed by thematic analysis. RESULTS: The age range of participants was 19 to 49 years. Most participants were children of the patients (n = 7), had attained tertiary education (n = 7), and had taken care of their loved ones for at least one year (n = 10). Six themes emerged from data analysis; (i) caring roles, (ii) caring burdens, (iii) role conflict, (iv) health system tensions, (v) support and motivation, (vi) caring benefits, lessons and recommendations. CONCLUSION: Study findings highlight the fundamental role of FCGs in the care of their loved ones, and illuminate the neglected physical, psychological and social challenges of family caregivers amidst health system tensions and conflicting roles. The needs of family caregivers should be embedded within cancer care, prevention and control programs particularly in low resource settings.

Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings.

OBJECTIVES: This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating' healthcare professionals' (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child's own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda. DESIGN: A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions. SETTING: Health and social care and third sector organisations in South Africa and Uganda. PARTICIPANTS: Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English. RESULTS: Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients' beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations. CONCLUSIONS: Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals' and communities' understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.

The use of and need for data and information by health professionals supporting the delivery of palliative cancer care services in sub-Saharan Africa: A qualitative study.

PURPOSE: The ability to develop and evaluate approaches to the management of advanced cancer in sub-Saharan Africa is limited by the lack of local, reliable and valid data to ensure that practice is evidence-based, replicable and reflects the needs of the population served. METHODS: A secondary qualitative analysis of in-depth interviews with 59 health professionals delivering palliative cancer care in Nigeria, Uganda and Zimbabwe were conducted to determine the use and needs for data and information for patient care and service delivery. Framework analysis was used, informed by a conceptual model for data use in low and middle-income countries. RESULTS: Three meta-themes include: (1) Current practice in data gathering and use; (2) Gaps for capturing, storing information and supporting communication, and; (3) Needs and opportunities for data use. Deficits in current data access and use were identified, alongside targets for improving the quality, accessibility and utility of data to inform the development of palliative cancer care. CONCLUSIONS: The availability and use of relevant and reliable data relating to the current provision of palliative cancer care are requisite for the contextually appropriate and effective development of health services. The requirements and constraints articulated by participants can guide future development and optimisation of digital health approaches for palliative cancer care in the participating countries, with relevance to the wider sub-Saharan Africa region.

"From the Time You Start With them Until the Lord Calls You": A Qualitative Study on the Experiences and Expectations of People Living with Advanced Cancer Interacting With Palliative Care Services in Uganda, Nigeria and Zimbabwe.

CONTEXT: A challenge facing the provision of palliative care in sub-Saharan Africa is a means of increasing coverage of services whilst maintaining quality. Developing an evidence base that reflects patients' experiences and expectations of palliative care services, the context within which services are provided, and the approaches adopted by services in caring for patients, could facilitate and inform the planning and development of patient-centered and responsive services. OBJECTIVES: To explore the experiences and expectations of palliative care for people living with advanced cancer in Nigeria, Uganda, and Zimbabwe. METHODS: A secondary qualitative analysis of in-depth interviews with 62 people with advanced cancer in Nigeria, Uganda, and Zimbabwe. Framework approach to thematic analysis of transcripts was adopted, focusing on patients' experiences and expectations when interacting with palliative care services, aligning reporting with the COnsolidated criteria for REporting Qualitative research (COREQ). RESULTS: Four main themes were generated from the analysis: 1) Condition and community as drivers of a multidimensional burden when living with advanced cancer; 2) The expectations and endeavors of palliative care to ameliorate the impact of cancer on physical, psychological and basic needs; 3) Processes and preferences for interacting and communicating with palliative care services, and; 4) Restoration of hope in the context of limited resources. CONCLUSION: Wide-ranging physical, psychological, social and financial impacts on participants were outlined. These concerns were largely met with compassionate and responsive care in the context of constrained resources. Study findings can inform evolving notions of patient-centred care for serious illnesses in the participating countries.

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.

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.

Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study.

INTRODUCTION: Palliative care is a clinically and cost-effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions. METHODS AND ANALYSIS: This is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies. ETHICS AND DISSEMINATION: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media. TRIAL REGISTRATION NUMBER: ISRCTN15727711.