Centre of Expertise Urban Vitality

Patient and Family Participation in Clinical Practice

Patients are staying in hospital for shorter and shorter periods, while the complexity of care is increasing, and there is a shortage of care workers. The government is encouraging hospital patients to rely on their family and friends for care after discharge from the hospital. The Patient and Family Participation in Clinical Care Research Group by Special Appointment is investigating how patients and their families can be involved in the patient's recovery during and after hospitalisation, and what care professionals need to facilitate this.

Anne Eskes, Professor by Special Appointment of Patient and Family Participation in Clinical Practice

Involving patients and their families in patient care during hospitalisation helps family carers better prepare for the hospital discharge phase. Research shows that this involvement means patients need less home care and are more satisfied with the care provided.

Family members inadequately prepared

Patient and family participation involves all aspects of care and decision-making. This form of participation requires a mutual and respectful partnership and cooperation between healthcare professionals and patients and their relatives. Family members are often the primary caregiver at home and play an important role in providing basic care for their loved ones after hospitalisation, such as helping with personal hygiene and mobility. Providing basic care may seem simple, but family members often feel unprepared for this role. They often lack knowledge on how to provide suitable care, and this increases the risk of them being unable to cope.

By actively involving family members during a patient’s hospital stay, they can prepare for this role under the guidance of healthcare professionals. The importance of investing in the family system around the patient is also clear from the fact that one in three Dutch people are uninformed about health care. As a result, they often struggle to deal properly with health care and illness in the home.

Health care skills

An individual’s health literacy is determined partly by factors such as their age, level of education, socio-economic status, culture and the social context in which they live. Inhabitants of the Amsterdam region present particular challenges: 15% are age 65 or older, 23% are low educated, 17% of households are low income and 34% have a non-western migration background. This is precisely the group that often feels less healthy, has multiple diseases and is more likely to spend time in the hospital.

Research questions

The Patient and Family Participation in Clinical Care Research Group by Special Appointment is investigating the best ways to involve patients and families by asking 5 questions.

How can we:

  1. actively involve patients and family members during hospitalisation, and what are the effects of this on the patient?
  2. best prepare family members for an active carer role after patient discharge, and what are the effects of this on the perceived quality of life and the extent of being able to cope?
  3. create an environment in which care provision during hospitalisation is encouraged by healthcare professionals?
  4. provide the best possible support to family members with limited health literacy?
  5. what does this require from care professionals, that is, how can they take into account language problems, diversity and poor health literacy?

Cooperation between AUAS and Amsterdam UMC

The Patient and Family Participation in Clinical Care Research Group by Special Appointment is linked to the Amsterdam University Medical Centre (UMC) and the Faculty of Health of the AUAS and closely cooperates with Amsterdam’s Onze Lieve Vrouw Hospital (OLVG). This cooperation benefits healthcare in the Amsterdam region and strengthens the synergy between professional practice, research and education.

Professional healthcare practice provides academic research with practice-related research questions. The research conducted by the research group then answers these research questions, and researchers involve as many students as possible from the Faculty of Health. Bachelor's and Master's degree programmes subsequently incorporate this research into their educational programmes. The result is state-of-the-art education, well-trained healthcare professionals and better quality of care.

More information

Contact Anne Eskes at a.m.eskes@amsterdamumc.nl

Published by  Urban Vitality 20 July 2023