Trial lecture title: Sustainable cooperation between relatives (informal caregivers) of the frail elderly and the health service with a particular focus on health-related transitions – theoretical perspectives and clinical implications.
Ordinary opponents
- First opponent: Senior Lecturer Petra Heideken Wågert, School of Health, Care and Social Welfare, Mälardalen University, Sweden
- Second opponent: Professor Grethe Eilertsen, University of South-Eastern Norway
- Leader of the committee: Associate Professor Ole Herman Ambur, Faculty of Health Sciences, OsloMet
Leader of the public defense is Associate Professor Slawomir Wojniusz, Faculty of Health Sciences, OsloMet.
The main supervisor is Professor Astrid Bergland, Faculty of Health Sciences, OsloMet.
The co-supervisors are Associate Professor Jonas Debesay, Faculty of Health Sciences, OsloMet and Associate Professor Asta Bye, Faculty of Health Sciences, OsloMet.
Thesis abstract
Previous research has reported lack of attention on how quality of healthcare is perceived by older patients themselves and by their informal caregivers, based on their reported experiences of the discharge process and how older patients and their informal caregivers experience the return to everyday life.
Thus, the overall aim of this study is to produce evidence-based knowledge that can inform policy, clinical practice, and research on how to provide high-quality healthcare services to geriatric patients in hospital, during the discharge process, and during the 30-day period after discharge.
Method
The thesis consists of two qualitative approaches:
- a metasummary
- data from semi-structured interviews.
The metasummary is based on Sandelowski and Barroso’s method. In addition, semi-structured interviews with 18 older patients (aged ≥80) and 12 informal caregivers were performed. Thematic analysis was used to analyse the data.
Results
Paper I
The analysis in the metasummary (paper I), based on 18 studies, portraying older patients’ experiences regarding participation in hospital discharge, revealed five main themes:
- the complexity of the patients’ state of health
- management and hospital routines
- the norm and preference of returning home
- challenges of mutual communication and asymmetric relationships
- the significance of networks.
The patients experience of participation was related to factors as personal health status, hospital routines, mutual communication, family networks, and the asymmetric relationship between healthcare professionals and patients.
Most patients indicated that they were given few opportunities to participate in shared decision-making regarding their own discharge.
Paper II
The older patients’ experiences of the quality of the healthcare in hospital and the first 30 days after discharge (paper II), revealed five themes:
- hospital stay and the person behind the diagnosis
- poor communication and coordination
- life after discharge
- relationship with their next of kin
- organizational and systemic determinants.
The older patients reported few invitations to participate in decisions regarding their own care, to share their concerns, or to tell the staff what was important to them. They reported insecurity and distress due to a lack of information and coordination.
The caregivers helped patients when the health service was unable to assist. The patients experienced healthcare services focused on diagnosis rather than listening to their concerns or addressing their needs.
Paper III
In paper III the informal caregivers’ experiences of the healthcare quality provided to older patients in hospital and the 30 days after hospitalisation were related to four themes:
- fast in, fast out – the tension between appropriate and efficient healthcare
- scant information – the tension between short-term versus long-term goals and openness versus closeness
- disclaimer of responsibility – the gap between the hospital, the city district and the intra-city district
- a struggle to secure professional care – the tension between competence and incompetence.
The participants reported that the healthcare system paid little attention to the mutual understanding of those involved in patient care. They experienced the healthcare as focused on the patients’ diseases rather view patients holistically. They indicated that hospital stays were short owing to financial considerations.
After discharge, they reported receiving insufficient information. They questioned who was responsible for the follow-up of the patients and stated that they felt left alone with responsibility for practical tasks and securing sufficient care.
Paper IV
Regarding how older patients and their informal caregivers perceived the informal care, (paper IV) our analysis revealed four main themes:
- bridging the gap
- family is family
- never enough
- stress and distress.
Our findings suggest that informal caregivers and care recipients experienced an imbalance between their care needs and available resources from the health services. Formal resources were not balanced against the participants’ available time, social roles, physical and emotional states.
Although the patients desired to maintain independence and equity in relation to their informal caregivers, their needs for assistance and care seemed to have a negative impact on the informal caregivers’ ability to balance care tasks against other life commitments. This influenced the relationship between them.
Conclusion
The metasummary showed that collaboration between different levels in the health systems and information between staff, patient and families which is adapted to the user's needs and preferences are crucial for the involvement of older patients in the hospital discharge process.
Organisational structure may need to be restructured to ensure older patients participation. With respect to quality of the health services, the patients disclosed that healthcare focused on measurable values and biomedical inquiries. Few opportunities for participation, scant information and suboptimal care coordination left the patients with a feeling of being in limbo, struggling to manage everyday life.
The older patient’s informal caregivers suggested that health services must consider each person’s preferences and strengthen and support the involvement of caregivers. Both old patients and informal caregivers faced strains within their roles and the care situation has potential to be burdensome.
