Health systems strengthening through person-centred care: development of a feasible and acceptable theory-based workforce approach to improve quality.

Lead Research Organisation: King's College London
Department Name: Palliative Care and Rehabilitation

Abstract

What is the problem we want to address?
Serious illness has major effects on both the patient and family. In low and middle income countries these can be physical (such as pain and their symptoms) psychological, social (with additional stressors on income, children's school fees, stigma) and spiritual. This can affect both the wellbeing of the patient and family and their ability to access and stay in care. Health systems must address more than just the disease- they must become more "person centred". Person-centred care means that the health system is organised to meet the needs of the individual in ways that respond to their preferences, values and beliefs, offering dignity and respect. Being person-centred is seen to be a way to ensure that care services are high quality. By improving the health system through the workforce (the health care staff) the information it holds (on the individual's needs and preferences) and the way things are delivered, we can make care more person-centred.
What will we do?
In this study, we want to do some of the important initial work to inform a larger study to improve person-centredness. We will use our partnership across the UK, Zimbabwe and Uganda to find out what best person-centred care looks like from the view of patients and families facing serious illness, and very importantly from those who would be responsible for delivering (health care professionals). We will use this new information to work with health care teams to develop a strategy that is acceptable to patients and staff that can be put into practice in these countries as examples of health systems strengthening. We will also look at the best way to measure person centredness, so that when we conduct a larger study we have an accurate way to knowing if we have achieved our goals.
What will be the outputs?
The World Health Organisation has a strategy to improve person-centredness of care for all- this study will provide a practical way to deliver this from an African perspective. We will also deliver an adapted way to measure the experience of care from the patient & family perspective. Our proposed strategy will be led by the views of patients, families and health professionals- making it more likely to achieve success. We are working with health organisations in the community and with Governments to make sure that we can achieve better care through stronger health systems.

Technical Summary

Background
The Institute of Medicine describes high quality care as "safe, effective, patient-centred, efficient, timely and equitable." Person-centred care (PCC) is relevant to low and middle income country (LMIC) health systems to detect and manage socio-economic barriers to health system access and retention. Re-engineering LMIC health systems to become person-centred can improve outcomes and reduce clinic time. Within the WHO 6 Health System Buildings Blocks, Block #3 (Health Workforce) Block #5 (Information) and Block #6 (Service Delivery) could promote PCC for a stronger health system and improved quality.

Methods
Sequential mixed methods design. This 24-month study will develop a mechanism to achieve improved outcomes across 3 relevant WHO Health System Building blocks, and a valid measure of PCC. These key practical outputs will enable us to design and deliver a subsequent large scale implementation and evaluation study.
We focus on conditions with high prevalence in LMIC, clinical uncertainty and prior evidence of high multidimensional needs: cancer, heart failure, and COPD.
-Objectives i & ii- qualitative in-depth interviews with patients (n=50), family caregivers (n=30) and professionals (n=30). Semi-structured topic guide data will be analysed using framework analysis, both deductive (i.e. appraise existing PCC theories) and inductive (generate new theory).
-Objective iii - design of a systems-oriented strategy. Drawing on the data from Objs i+ii, our prior work, and partner expertise we model the mechanism, intended process and outcomes. The strategy will take a multi-disciplinary approach with nurses at the centre of systems strengthening.
-Objective iv - development and validation of PCC measure.
Cognitive interviews with n=15 patients n=15 family caregivers, framework analysis and refinement of tool then validation in cross-sectional survey with n=80 patients in each of the three diagnostic groups.

Planned Impact

-Who might benefit from this research?
1. People living with serious illness
2. Their family members
3. Researchers
4. Policy makers
5. Clinicians
6. Funders
-How might they benefit from this research?
1. People with serious illness will benefit from the novel Africa-specific guidance on how to ensure care processes reflect the concerns and priorities of the individual. This has the potential to transform health care delivery by ensuring the health systems that serve the patient are centred around the individual.
2. Family member will benefit by ensuring that care is family-centred and that the family are seen as part of the unit of care.
3. Researchers will benefit through access to a valid measure of person-centredness for use in health systems. Health services and clinical research. They will also have access to feasible and acceptable guidance on how to strengthen health systems through person-centredness, and a theory readily adaptable to other low and middle income countries.
4. Policy makers will have access to the first African guidance on the meaning and potential practice of person centredness to achieve global policy goals.
5. Clinicians will have clear and practical guidance on the meaning and practice of person-centred care of patients and families facing serious illness.
6. Funders will benefit from this development grant as the aims and objectives will ensure a theoretically plausible, feasible, acceptable and measurable strategy is developed prior to the implementation phase.

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