There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to ...heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers' experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30-40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers' experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner's social ecological model which aided our development of a framework for understanding informal carers' experiences'. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers' allowance, should be incorporated as part of universal health coverage.
IntroductionThe number of people requiring palliative care is increasing with an ageing comorbid population. Pain is a prevalent symptom for palliative care patients and is often managed with ...opioids. Opioids reduce reaction time and can cause drowsiness and visual disturbance. Evidence recommends that driving should be avoided until a stable dose of opioids has been reached. It is vital for patient and public safety that these facts are communicated to patients who are prescribed opioids, as well as the legal consequences if guidance is not followed. These discussions facilitate joint decisions, optimising patient freedom and quality of life. Surprisingly though these important discussions around driving and opioids do not always occur, and so this project sought to develop a systematic approach to integrating them into practice.DesignRetrospective case note analysis and prospective interventional quality improvement study.SettingA 16 bedded specialist palliative care inpatient unit.PopulationHospice inpatients with an Eastern Council Oncology Group performance score of 0–3 who had been prescribed opioids.InterventionThree plan–do–study–act cycles were performed. First, the issue was discussed in the daily multidisciplinary team meeting to raise awareness, second a prompt was added to a pre-existing clerking proforma. Finally, a reminder poster was placed in the ward office to promote discussion prior to discharge.Outcome measuresPrimary measures were the proportion of patients with the presence of documented driving status, and the presence of a documented discussion surrounding driving and opioids.ResultsBaseline data found that 11.5% of patients had a documented driving status and 11.5% had a documented discussion surrounding driving and opioids. Over the course of the study, the proportion improved to 65.2% and 60.9%, respectively.ConclusionUse of quality improvement change methods have resulted in the successful integration of new interventions to increase discussions around driving when prescribed opioids. A previously overlooked issue in this facility, thus improving clinical and patient information sharing, and patient empowerment to take charge of their own health.
