Selected insights and reflections on literature about people and person-centred care in epidemics | 5 June 2020
By the Evidence and Evaluation for Improvement Team (EEvIT) at Healthcare Improvement Scotland's Improvement hub (ihub).
Healthcare Improvement Scotland has recognised that person-centred care ‘is delivered when health and social care professionals work together with people who use services, tailoring them to the needs of the individual and what matters to them’1.
Despite huge challenges in the current context, we’re helping to collate examples of how staff working directly with patients in acute care are using innovative ways to practice compassionate communication and support person-centred care. We’ve also been considering insights from literature2 on approaches to person-centred care from other epidemics, in settings beyond acute care, to inform our approach to literature scanning in the context of COVID-19.
Here we share some insights from selected articles relating to the Ebola epidemic in West Africa (2013-2015) and the ongoing TB epidemic.
In particular we considered:
- Parker and colleagues (2019) Ebola and Public Authority: Saving Loved Ones in Sierra Leone plus associated letter
- Martineau (2016) People-centred health systems: building more resilient health systems in the wake of the Ebola crisis
- Jaramillo and colleagues (2019) Why every word counts: towards patient- and people-centered tuberculosis care
- Reflection #1 : Considering person-centred care as part of people-centred care
We noted the term people-centred care was used - this incorporates person-centred care in terms of ‘clinical encounters’, but broadens the focus to include the health of people in their communities and ‘their crucial role in shaping health policy and services’ (World Health Organization, 2016)
- Reflection #2: Strengthening communities and systems through person-centred care
- There appeared to be an emphasis on trust, respect and dignity, supporting communities and strengthening the health system.
For example Jaramillo and colleagues detail evidence of individual people with TB experiencing pejorative attitudes from some health workers and a ‘blame game’ for ‘non-adherence’ to treatment and argue top-down approaches to disease management and weak community engagement have contributed to individuals’ alienation from services. The authors suggest people can be supported to reclaim their health and dignity through person-centred approaches, which will in turn strengthen communities.
Writing on Ebola, Martineau notes that effective clinical care is essential, but it is not the only component of a trusted health system and its workers. He suggests that efforts to strengthen a health system must work with the local context to ‘build mutual trust, respect and dignity between health actors and the communities they serve alongside initiatives to improve the quality of care’.
Colleagues from the People-led care portfolio and the Transformational Redesign Unit have recently blogged about taking community-led support to the next level and highlighted the role of communities in strengthening community partnerships.
- Reflection #3: Understanding the importance of local context and social dynamics
For example, Martineau suggested that a community surveillance initiative could be set up in an inclusive way and engage with a range of ‘actors’ in the system to identify potential cases of Ebola as a global priority, but if priorities which were equally important to local people were not considered, the local perception of the programme could be damaged, and this could prevent working with the community on other determinants of health.
Similarly, Parker and colleagues’ anthropological study in Sierra Leone, exploring how a village responded to public authority in an Ebola outbreak, found that in practice relatives of people with Ebola chose to care for them themselves rather than take their relatives to the authorised treatment centres. The authors suggest medical and scientific interventions and impact of resources will be affected if there is a lack of understanding or respect of the local ‘norms, social values, practical capacities and public authority of affected populations’. They argue greater engagement of social scientists and anthropologists could help to improve health and social outcomes in times of crisis and in the ‘everyday functioning of the system’. In a separate letter to the Lancet, they cite the idea that everyone pays ‘lip service’ to community engagement but the ‘how and who’ are often not well defined.
We’ve used these reflections to consider a broader approach to our search strategy in future evidence scans, which support the Health and social care learning in Scotland work currently underway.
Jaramillo J, Yadav R, Herrera R. Why every word counts: towards patient- and people-centered tuberculosis care. The international journal of tuberculosis and lung disease : the official journal of the International Union against Tuberculosis and Lung Disease. 2019;23(5):547-551.
Martineau FP. People-centred health systems: building more resilient health systems in the wake of the Ebola crisis. International health. 2016;8(5):307-9.
Parker M, Hanson TM, Vandi A, Babawo LS & Allen T (2019) Ebola and Public Authority: Saving Loved Ones in Sierra Leone, Medical Anthropology, 38:5, 440-454, DOI: 10.1080/01459740.2019.1609472
Parker, M et al. Ebola, community engagement, and saving loved ones. 2019 The Lancet, Volume 393, Issue 10191, 2585
World Health Organisation (2016) Framework on integrated people-centred health services (IPCHS) https://www.who.int/servicedeliverysafety/areas/people-centred-care/framework/en/ https://www.who.int/servicedeliverysafety/areas/people-centred-care/Framework_Q-A.pdf?ua=1