Different views on collaboration between older persons, informal caregivers and care professionals

Background:Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods:Using Q-methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow-up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by-person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision-making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications.</p

An impact model to understand and improve work-life balance in early-career researchers in radiation oncology

Purpose: The COVID-19 pandemic had a substantial effect on mental health and work productivity of early-career researchers working in Radiation Oncology (RO). However, the underlying mechanisms of these effects are unclear. The aim of the current qualitative study was therefore to achieve a better understanding of how these effects arose and could be managed in the future.Methods: This study was conducted jointly by RO and qualitative health researchers. Data was collected in four online Focus Groups with 6-11 RO researchers (total N = 31) working in Europe. The transcripts were analysed through a qualitative cross-impact analysis.Results: Causal relations were identified between seventeen variables that depict the impact of disrupted working conditions. Mental health and work productivity were indeed the most important affected variables, but relations between variables towards these impacts were complex. Relations could either be positive or negative and direct or indirect, leading to a cascade of interrelated events which are highly personal and could change over time. We developed the model 'impact of disrupted working conditions' depicting the identified variables and their re-lations, to allow more individual assessment and personalised solutions.Conclusion: The impacts of disrupted working conditions on RO researchers varied due to the complexity of interrelated variables. Consequently, collective actions are not sufficient, and a more personal approach is needed. Our impact model is recommended to help guide conversations and reflections with the aim of improving work/life balance. The participants showed high levels of personal responsibility towards their own mental health and work productivity. Although being an individual issue, a collective responsibility in devel-oping such approaches is key due to the dependency on organizational variables

An impact model to understand and improve work-life balance in early-career researchers in radiation oncology.

Purpose The COVID-19 pandemic had a substantial effect on mental health and work productivity of early-career researchers working in Radiation Oncology (RO). However, the underlying mechanisms of these effects are unclear. The aim of the current qualitative study was therefore to achieve a better understanding of how these effects arose and could be managed in the future. Methods This study was conducted jointly by RO and qualitative health researchers. Data was collected in four online Focus Groups with 6-11 RO researchers (total N = 31) working in Europe. The transcripts were analysed through a qualitative cross-impact analysis. Results Causal relations were identified between seventeen variables that depict the impact of disrupted working conditions. Mental health and work productivity were indeed the most important affected variables, but relations between variables towards these impacts were complex. Relations could either be positive or negative and direct or indirect, leading to a cascade of interrelated events which are highly personal and could change over time. We developed the model 'impact of disrupted working conditions' depicting the identified variables and their relations, to allow more individual assessment and personalised solutions. Conclusion The impacts of disrupted working conditions on RO researchers varied due to the complexity of interrelated variables. Consequently, collective actions are not sufficient, and a more personal approach is needed. Our impact model is recommended to help guide conversations and reflections with the aim of improving work/life balance. The participants showed high levels of personal responsibility towards their own mental health and work productivity. Although being an individual issue, a collective responsibility in developing such approaches is key due to the dependency on organizational variables

A qualitative research on co-creating care pathways for Sarcoma and GIST by stimulating reflection

Introduction: Care Pathway Management intends to enhance the quality of care by restructuring care services. As recipients of care, patients have relevant experiential knowledge on the provision of care, but they are rarely involved in Care Pathway Management due to various barriers. This study aims to acquire insights into how patients can be meaningfully involved in Care Pathway Management. Methods: A case study was cond

Co-creating an empowering health education intervention for urological cancer patients

Objective: The effectiveness of health education for patients has often been suboptimal. The neglect of a focus on empowerment and the presence of implementation barriers have been put forward as possible explanations for this. This study aimed to gain insight into how to co-create and develop an empowerment theory-based health education intervention for urological cancer patients. Design: Bravo’s empowerment intervention model provided the theoretical foundations for the work undertaken with urological cancer patients in the Netherlands, using a participatory interactive learning and action approach. Method: Insights into needs regarding health education were obtained through semi-structured interviews with patients (n = 22) and health professionals (n = 17). Subsequently, eight co-creation sessions (n = 30) were organised to translate these needs into a health education intervention. Results: An intervention in the form of digital patient information was developed. The information offered provides a view of the different care steps based on clinical guidelines but personalised in different ways. By connecting patients’ empowerment needs to the information provided, and by taking health professionals’ perspectives into account, barriers to health education were made visible and addressed. Conclusion: Patient empowerment theory proved valuable in better aligning a participatory research process with the empowerment needs of urological cancer patients. The programme theory developed may offer a valuable template for the development of future health education interventions

“The challenge of managing insecurities”: Parents’ experiences with the care for their child with congenital diaphragmatic hernia

Purpose: Last decennia remarkable advances have been made in decreasing the mortality rate of children with congenital diaphragmatic hernia (CDH), resulting in a relatively growing patient group with long-term complications and complex care needs. These consequences have a huge impact on the quality of life of both children and their families. To provide practical recommendations for improving the quality of care for this patient group, the present study sought to obtain insights into the experiences and needs of parents with a child with CDH. Design and Methods: A qualitative study was conducted on the experiences and needs of parents with a child with CDH living in the Netherlands. Data was obtained by means of a discourse analyses of 17 weblogs written by parents and three online focus groups with 8–12 parents per group (n = 29). The data was analysed thematically and structured by using the model of Lawoko (2007) on parental satisfaction with care. Results: Although parents were generally satisfied with the delivered care, they frequently encountered challenges in managing insecurities throughout the care process. Besides the unpredictable disease progress, insecurities were exacerbated by: (a) limited specialized knowledge of long-term consequences, (b) logistical problems, and (c) nontransparent communication. Providing security through, for instance, a clear care plan and by engaging parents in the decision-making process helped them feel more in control. Practice Implications: This study showed that parents’ main challenge was to manage insecurities. Creating securities by providing a care plan and involving parents in the decision-making process helped parents to feel more in control. To improve quality of care for children with CDH, future measures should, therefore, focus on reducing insecurities by managing expectations, improving transparency and stimulating engagement