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Research group

Patient and Family Participation in Clinical Practice

About the research group

Patient and family participation focuses on involving patients and their loved ones in all aspects of care and decision-making. This requires a mutually respectful partnership between healthcare professionals and the family, who often become the primary caregivers after discharge. For example, they assist with personal hygiene and mobilisation. While these basic care tasks may seem simple, many family members feel unprepared for their role. They often lack the necessary knowledge, which can lead to feelings of being overwhelmed.

Limited health literacy

Actively involving family members during hospitalisation can help them prepare for their caregiving role after discharge, under the guidance of healthcare professionals. Investing in family systems is crucial, especially since 1 in 3 people in the Netherlands has limited health literacy, hindering their ability to manage health and illness at home.

Health literacy is influenced by factors like age, education level, socioeconomic status, culture, and social environment. In Amsterdam, specific challenges arise: 15% of residents are aged 65 or older, 23% have low education levels, 17% live on a low income, and 34% have a non-Western migration background. These groups often report poorer health, higher rates of co-morbidity, and longer hospital stays.

Research Questions

The research group focuses on the best ways to engage patients and families in care, guided by 5 key questions:

  1. How can patients and families be involved during hospitalisation, and what are the effects on the patient?
  2. How can family members be best prepared for their role after discharge, and how does this impact their quality of life and caregiver burden?
  3. How can a supportive environment be created for healthcare professionals to encourage participation during hospitalisation?
  4. How can family members with limited health literacy be optimally supported?
  5. What is required from healthcare professionals, considering language barriers, diversity, and low literacy?
Involving patients and their families during hospitalisation is essential. Research show this reduces the need for home care after discharge and increases patient satisfaction with the care they receive.
Anne Eskes professor AUAS

Anne Eskes

Professor

Collaboration: AUAS, Amsterdam UMC, and OLVG

The Patient and Family Participation in Clinical Practice research group is linked to Amsterdam UMC and the AUAS working closely with OLVG. This collaboration ensures alignment between practice, research, and education. Practical challenges inform research, and AUAS students in paramedical and nursing programmes are actively involved. The results feed into Bachelor’s and Master’s programmes, leading to well-trained healthcare professionals and improved care quality.