Trial lecture title: Which factors are important for people with dementia to live as long as possible in their own home.
Ordinary opponents:
- First opponent: Professor Staffan Karlson, Kristanstad University
- Second opponent: Professor Ådel Bergland, Lovisenberg Diaconal University College
- Leader of the committee: Professor Vibeke Lohne, OsloMet
Leader of the public defense is Hege Bentzen, Head of Department of Physiotherapy, OsloMet.
The main supervisor is Professor Astrid Bergland, OsloMet.
The co-supervisors are Professor Liv Halvorsrud, OsloMet and Professor Ellen Karine Grov, OsloMet.
Thesis abstract
The topic of this PhD project is patient and public involvement in health services research, including the James Lind Alliance approach, as well as a focus on what matters to nursing home residents regarding the nursing home as a home and an institution.
This study aims to:
- summarise study descriptions of the James Lind Alliance approach to the priority setting partnership process and how this process is used to identify uncertainties and develop lists of Top 10 research priorities
- describe the reflections of informal caregivers of people with dementia on the possibility of participating in the James Lind Alliance’s priority setting partnership process, for both themselves and the recipients of their care, as well as explore barriers to and facilitators of their participation
- explore what matters to nursing home residents with dementia based on their perceptions of nursing home as their home and an institution.
Method
The study design in this thesis consists of three approaches, which are as follows:
- a scoping review
- data from focus groups
- data from individual qualitative interviews.
In the scoping review, data from 37 studies were included, following specific selection criteria, in order to collect information about demographic details, study aims, sample and patient group details, priority setting partnership details, lists of Top 10 research priorities, descriptions of James Lind Alliance facilitator roles and the priority setting partnership stages followed the scoping review.
In addition, four focus groups were performed with 36 informal caregivers of people with dementia, as well as unstructured individual interviews with 35 people with dementia living in nursing homes. Data from the focus groups and individual qualitative interviews were analysed using thematic analysis.
Results
The scoping review revealed 37 studies published from 2010–2018. The James Lind Alliance approach participants were patients, informal caregivers and health care professionals, aged 18 years and older. Uncertainties were typically collected via an online survey hosted on the priority setting partnership website.
The number of submitted uncertainties varied across the included studies, from 323 submitted by 58 participants to 8,227 submitted by 2,587 participants. No studies reported difficulties in developing their lists of top 10 research priorities. The informal caregivers of people with dementia highlighted, in the focus group, the importance of creating empowering teams where all voices are heard during the priority setting partnership process.
The overall results indicated that informal caregivers are willing to participate in a priority setting partnership processes and that they thought it was important for people with dementia to participate in these processes as well, even if some might need extra support to do so. The informal caregivers also identified the need for research topics that influence policy development, health care services and their everyday lives.
The statements of the nursing home residents regarding what was important when the nursing home was their home and an institution. The analysis resulted in one overarching theme, ‘Tension between the experiences of a nursing home being a home and an institution’.
The residents found it challenging to create relationships with fellow residents and appreciated having single rooms with personal decor that enhances a sense of connectedness. The transition between the old home and the new home was reported as difficult to accept because of few possibilities for doing meaningful everyday activities.
Furthermore, nursing home residents suggested that, with respect to the nursing home being their institution for health care, there was a mismatch between the goal of person-centered care and everyday routines in health care. The analysis resulted in an overarching theme, ‘Mismatch between the goal of person-centred care and everyday routines in health care’.
The residents wanted health care professionals to have more time to sit down and talk with them. The residents felt that their own needs often disappeared in the daily nursing home routine. Health care in nursing homes must focus more on how to enable the residents to participate in daily activities and sustain their personhood as well as their sense of self.
Conclusions
The scoping review indicates that the James Lind Alliance based priority setting partnership process makes a useful contribution to identifying research questions in health care services. Informal caregivers of people with dementia stated that both informal caregivers and the people with dementia are able to contribute to the priority setting partnership process when given sufficient support.
What mattered to nursing home residents regarding the nursing home as a home was the feeling of being safe, having single rooms, and having possibilities for meaningful relations and opportunities to continue some activities that they did in their previous home.
The residents’ reports indicated a mismatch between the goal of person-centred care and everyday routines in health care services. Health care services in nursing homes should focus on how to operationalise the person-centered dimensions of health care.
