Participatory Approaches to Support Patient-centred Sickle Cell Disease Management in Africa (PACTS): Implementation Research
Patient-centred sickle cell disease management in sub-Saharan Africa
Within each country (Ghana, Zambia, Nigeria), PACTS will work with six health facilities with known sickle cell disease care provision, by identifying a team of healthcare providers with responsibility around sickle cell disease care and will work with a community group from the catchment area of each facility. This group will be comprised of individuals with sickle cell disease, carers of patients with sickle cell disease, and community influencers. The facility group will carry out a standards-based audit (SBA) to embed the use of the clinical mainstays. The community group will use participatory action cycles (PACs) to drive community sensitisation to improve earlier detection and uptake of care and to overcome access barriers. The facility and community groups will come together to co-develop guidance for patient-centred sickle cell disease care in biannual learning collaboratives, which should be reflected in the care provided at each facility. To study the use of PACs and SBA to drive earlier uptake of patient-centred sickle cell disease care, PACTS will conduct a realist evaluation with three phases. In phase one, PACTS will undertake a situational analysis to understand current knowledge on social factors affecting access to sickle cell disease care; patient/carer expectations of patient-centred care; and key barriers constraining implementation of evidence-based sickle cell disease clinical mainstays and adopting patient-centredness in care provision. Information from a scoping (literature, policy), and media review summarising what is known about sickle cell disease and the accuracy of public information and a patient survey about barriers to accessing care will be used to brief the PACs and SBA research teams. Additional information will be obtained from a qualitative study. Insights from the situational analysis will also be collated and then discussed in a participatory workshop with key stakeholders to generate an initial programme theory for the
Adolescents living with sickle cell disease 1. Aged 15 and older 2. Parent/caregiver has provided informed consent 3. Adolescent has given assent to participate Carers of people living with sickle cell disease 1. Aged 18 and older 2. Caring for at least one person with sickle cell disease Sickle cell disease healthcare providers 1. Aged 18 and older 2. Playing a role in supporting clinical management of patients with sickle cell disease Sickle cell disease decision-makers/stakeholders 1. Aged 18 and older 2. Playing a role: in policymaking/guideline development for sickle cell disease; resource allocation for sickle cell disease; clinical training for sickle cell disease 3. Working with community-based or non-governmental organisations that support people living with sickle cell disease and their families Standards-Based Audit and Participatory Action Cycle leads 1. Members of the study team facilitating PAC and SBA activities
1. Any participant not consenting to participate. If an adolescent does not give assent, this will be prioritised, even if the parent/guardian has given consent. 2. Adolescent carers of someone living with sickle cell disease