Next of kin’s protracted challenges with access to relevant information and involvement opportunities

Background: Next of kin are considered a resource for both the patient and the health service. Need for information varies with severity and duration of health changes. A clear requirement is about what to expect upon homecoming, and what supportive services are available. The picture of relatives’ access to involvement and information is still somewhat unclear. Objective: To investigate what information, knowledge, and involvement next of kin considered important for managing their caring role and collaboration with their close relatives who experienced events that led to chronic illness. Design, setting, and methods: A qualitative exploratory design. Seventeen informants were recruited through various courses offered to relatives. Data were collected in 2017 from individual interviews, analyzed in an interpretative tradition, and involved qualitative content analysis. Results: The results reflect a long intervening period in between the activating incident and a clarification of the situation. This period was characterized by unpreparedness for duration of anxiety and amount of energy involved in balancing the relationship. Further, the interviewees saw retrospectively that information about disease and treatment was available, but they had to find such resources themselves. Information about how to handle the situation was almost absent. Ultimately, they were disappointed over not being involved. Conclusion: Previously provided prospective information about the embedded anxiety in the situation and consequences for relationships, involvement in patients’ services, and better communication about existing services seem to be significant. Health care professionals, especially in outpatient care, may improve their services by debating how they can implement family-oriented care in personalized treatment as usual. Focus on prospective information, early involvement, and relevant information about existing resources may empower relatives and relieve the experience of care burden.publishedVersio

Primary healthcare professionals' experience with patient participation in healthcare service development: A qualitative study

This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.Objective: How healthcare professionals experience patient participation in health service development impacts its use. This participatory study explores primary healthcare professionals' perceptions of developing health services with patient representatives. Methods: Four focus group interviews with primary healthcare professionals (n = 26) were conducted. We analyzed data by applying Braun and Clarke's reflexive thematic analysis. Results: The healthcare professionals perceived having a complementary interprofessional relationship with the patient representatives and regarded them as colleagues. However, the professionals navigated between a position of authority and collaboration, reconciling the need for participation with its challenges, e.g., to identify the representatives' collective representation among their personal experience, to ensure a more evidence-informed result that they and their colleagues would endorse. Conclusions: Regarding patient representatives as colleagues can blur the line between professionals and representatives' positions and functions and further complicate health service development. Our results indicate a need for skilled facilitators to lead the process. Innovation: This study identifies issues that professionals are uncertain about when collaborating with representatives to develop primary healthcare services; difficulties that professionals must overcome to collaborate constructively with representatives. Our findings can inform healthcare professionals' education about patient participation on all levels. We have suggested topics to address.publishedVersio

Enabling primary healthcare service development with patient participation: a qualitative study of the internal facilitator role in Norway

This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.Aim: To explore how primary healthcare professionals (HCPs) tasked with facilitating primary healthcare service development with patient participation perceived their role. Introduction: Patient participation in health service development is a recognized means of ensuring that health services fit the public’s needs. However, HCPs are often uncertain about how to involve patient representatives (PRs), and patient participation is poorly implemented. Inspired by the Promoting Action on Research Implementation in Health Services framework, we address the innovation (patient participation), its recipients (PRs, HCPs, supervisors, and senior managers), and its context (primary healthcare at a local and organizational level). Methods: We conducted semi-structured individual interviews with six HCPs working as internal facilitators in primary healthcare in four Norwegian municipalities. The data were analyzed by applying Braun and Clarke’s reflexive thematic analysis. Findings: The themes show that to develop primary healthcare services with patient participation, facilitators must establish a network of PRs with relevant skills, promote involvement within their organization, engage HCPs favorable toward patient participation, and demonstrate to supervisors and senior managers its usefulness to win their support. Implementing patient participation must be a shared, collective responsibility of facilitators, supervisors, and senior management. However, supervisors and senior management appear not to fully understand the potential of involvement or how to support the facilitators. The facilitator role requires continuous and systematic work on multiple organizational levels to enable the development of health services with patient participation. It entails maintaining a network of persons with experiential knowledge, engaging HCPs, and having senior management’s understanding and support.publishedVersio

From Model to Everyday Practice: A Qualitative Observational Study of Daily Fact Team Board Meetings

Introduction: The Flexible Assertive Community Treatment (FACT) model has rapidly become a way of organising services for people with severe mental illness. FACT describes the integrated approach of interprofessional teams. Method: A qualitative study of interprofessional collaboration in three FACT teams was conducted. Thirty observations of the teams’ board meetings were conducted, and field notes were thematically analysed. Results: This study generated three themes in interprofessional collaboration in FACT teams. The first theme reflects the challenges of working in line with the model, the second suggests an unclear understanding of a shared caseload, and the third shows different approaches to working with a shared caseload. Discussion: The themes suggest that there is increased opportunity for the shared caseload in the FACT team board meeting. The findings reflect that there is a lack of either the resources necessary for working with a shared caseload or an understanding of the intention of a shared caseload. Conclusion: The potential of the shared caseload in FACT team board meetings are dependent on sufficient resources and a collective understanding of the FACT model and the shared caseload among professionals. Further research on how a shared caseload is experienced and facilitated in FACT teams can provide insight into their practices

How can we describe impact of adult patient participation in health-service development? A scoping review

This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).Objective: Patient participation represents a worldwide policy, but its impact lacks research. This study investigates impact of patient participation in health-service development by providing a comprehensive overview of how the literature describes it. Method: A scoping review with a broad search strategy was conducted. The literature was examined for study characteristics, purpose for, approaches to and impact of patient participation. The data were analyzed using a thematic analysis. Results: The 34 included primary studies reported impacts of patient participation that were interpreted to constitute two categories: 1. The participatory process impact on involved patient representatives and health professionals, and the organization s patient participation practice itself. 2. The participatory service development s impact on the design and delivery of services regarding patients and health professionals, and the organization. Conclusion: The literature describes a broad variation of impacts from health-service development, relevant for health professionals and patient representatives when initiating or participating in such processes. Our review provides an overview and discussion of these types of impact. Practice implications: The findings can be of practical relevance to those aiming to develop services, quality indicators regarding effects of patient participation, or to further investigate aspects of participatory service development.publishedVersio

Terror leaves adolescents behind: Identifying risk and protective factors for high-school completion among survivors of terrorism

Terror exposure increases the risk of somatic and psychological health problems in survivors. Yet, knowledge of how such exposure affects survivors’ ability to stay in school is lacking. This study examined whether exposure to the 2011 Utøya terrorist attack in Norway impacted survivors’ ability to complete high school. Further, it aimed to identify important peri- and posttraumatic risk and protective factors. Interview data from the Utøya study, collected 4–5 months postterror, were linked to individual educational registry data for 265 survivors. Chi-square tests and ordinal logistic regression analyses were used to examine (a) high school completion among younger survivors (n = 185, age range: 13–18 years, 52.4% female) compared to both older survivors (i.e., who had the possibility of completing high school before the terror attacks; n = 80, age range: 19–21 years, 40.0% female) and the national average and (b) associations between high school completion and physical injury, posttraumatic stress symptoms (PTSS), somatic symptoms, and social support among younger survivors. Younger survivors were significantly less likely to complete high school on time. Among younger adolescents, physical injury, aOR = 0.36, 95% CI [0.16, 0.81]; higherlevel PTSS, aOR = 0.54, 95% CI [0.33, 0.88]; and somatic symptoms, aOR = 0.51, 95% CI [0.29, 0.91], lowered the likelihood of on-time completion. Terror exposure in adolescence adversely affects long-term educational functioning in young survivors, which can severely hamper their future prospects. These findings reinforce the need for trauma-sensitive teaching and educator-provided support for adolescents exposed to trauma

Being “on the alert” and “a forced volunteer”: a qualitative study of the invisible care provided by the next of kin of patients with chronic heart failure

Background: Relatives’ support is an important factor in how well people with chronic heart failure (CHF) manage their illness and everyday life. Deepening professionals' understanding of the content of relatives’ invisible care activities, often characterized as care burden, is necessary to strengthen support services. Objective: To explore the next of kin’s experiences of invisible care and the inherent responsibilities in caring for a relative with CHF. Design, setting, and methods: Relatives were recruited from CHF outpatient clinics and home care services. Seventeen women and two men were interviewed, age range 45–83 years; 12 were partners, and seven were daughters. The qualitative interviews were taped and transcribed and thematic cross-case analyses were performed. Results: Two main themes were revealed. The first, “being on the alert”, refers to a perceived need, real or assumed, to be aware day and night, whether present with the patient or not, that occupies the mind, emotions, and body. The second theme, “being a forced volunteer”, refers to two different dimensions: relatives'’ own perceptions of responsibility with regard to the patient's needs; and voiced or silent expectations from the patient, family members, and health personnel that the relative will help the patient. Both findings appeared to have positive and negative impacts on the relationship with the patient. Conclusion: The identified themes reflect how challenging being a next of kin of CHF patients can be. The results may deepen professionals’ understanding of the relatives’ invisible care burden and the importance of their subjective task-related feelings. More studies on invisible care and the attendant responsibilities are needed and also on relatives’ inherent resources

Place of residence and coach-athlete relationship predict drop-out from competitive cross-country skiing

The current study investigated whether factors such as living residence, the coach-athlete working alliance, goal orientation, and intrinsic motivation could explain drop-out, and whether these factors differed between athletes included in the elite- vs. general sport programs during high school years. In total 257 cross-country skiers, graduated from three different Norwegian Top Sport schools during the period from 2015 to 2019, were recruited to retrospectively investigate their experiences related to the time period when they participated in programs for cross-country skiing at high school. In total 116 of these athletes completed an online survey including validated and standardized instruments for the assessment of the coach-athlete working alliance (CAWAI), goal orientation (GO), perceived satisfaction with their performances (PAP) and intrinsic motivation (IM). The results showed that 84% of the athletes had dropped out from cross-country skiing, while 16% were still active. The highest ranked fixed statements of causes for drop-out was “a natural choice” (3.79 ± 1.11), “priority of education or work” (3.61 ± 1.30), “lack of motivation” (3.49 ± 1.28), “negative performance development” (3.46 ± 1.18), and “challenges with health” (3.25 ± 1.54). There were significant differences between active and drop-out in scores for reciprocity between the coaches' and the athletes' perceptions of goals (CAWAI-goal; 5.87 ± .98 vs. 5.07 ± 1.15; p = .004), the coach-athlete relationship bond (CAWAI-bond; 6.08 ± .91 vs. 5.07 ± 1.38; p = .001), and tasks chosen to reach the defined goals (CAWAI-task; 5.61 ± .92 vs. 4.90 ± 1.09; p = .006). Furthermore, active athletes had higher mastery orientation (22.11 ± 2.88 vs. 20.00 ± 3.74; p = .010). A hierarchical binary logistic regression analysis showed that place of residence and the coach-athlete working alliance were significant predictors of drop-out while mastery and performance goal orientation or intrinsic motivation were not significant. All five predictors explained 23% of the variability in drop out from cross-country skiing. Overall, 58% and 42% of the athletes participated in the elite and general programs for cross-country skiing during high school, respectively. The athletes that took part in the elite programs reported significantly stronger coach-athlete working alliances (CAWAI-sum; 14.46±3.10 vs. 14.28±3.37; p = .000), higher mastery orientation (21.19±3.50 vs. 19.36±3.66; p = .008), and performance satisfaction (PAP; 19.17±5.98 vs. 15.69±5.19; p = .001) compared to the athletes attending general programs. The results are discussed in terms of existing knowledge on how place of residence, the coach-athlete working alliance, goal orientation, performances, and motivation might impact drop-out in cross-country skiing