Patient-centred sickle cell disease management in sub-Saharan Africa Haematological Disorders
Conditions
Interventions
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 responsibilit
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
Sponsors
Liverpool School of Tropical Medicine
Eligibility
Sex/Gender
All
Age
15 Years to 100 Years
Inclusion criteria
Inclusion criteria: 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
Exclusion criteria
Exclusion criteria: 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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Facilities and access/care-seeking measured from data collected at baseline using qualitative and quantitative methods between years 1-2 2. Access to care/facilities measured using Geographic information science (GIS) in epidemiology data between years 2-4 3. Changes in media awareness of SCD measured using media content analysis of SCD newspaper articles at year 1 (baseline) and years 3-4 4. Institutional research capacity strengthening measured using a needs analysis (year 1) and progress against action plans for year 1 and years 2-4 | — |
Secondary
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures | — |
Countries
Ghana, Nigeria, Zambia
Contacts
Public ContactImelda Bates
Outcome results
None listed