Process evaluation of the CO-WORK-CARE model: Collaboration and a person-centred dialogue meeting for patients with common mental disorder in primary health care.

RATIONALE: To ensure optimal patient care based on evidence, it is crucial to understand how to implement new methods in practice. However, intervention studies often overlook parts of the implementation process. A comprehensive process evaluation is necessary to understand why interventions succeed or fail in specific contexts and to integrate new knowledge into daily practice. This evaluation examines the full implementation of the Co-Work-Care model in Swedish primary healthcare to identify strengths and weaknesses. AIM: This study aimed to evaluate the process of implementing the CO-WORK-CARE model that focuses on close collaboration and the use of a person-centred dialogue meeting in primary healthcare for patients on sick leave due to common mental disorders. METHOD: The CO-WORK-CARE model emphasises collaboration among the GP, rehabilitation coordinator and care manager, along with person-centred dialogue meetings involving employers. Following UK Medical Research Council guidelines, we conducted a process evaluation. Data from previous studies were reanalysed. We also analysed field notes and meeting notes using Malterud's qualitative method. RESULTS: The evaluation identified key facilitators for model implementation, including regular visits by facilitators and guidance from the research physician. Peer support meetings also bolstered implementation. However, challenges emerged due to conflicts with existing structures and limitations in person-centred dialogue meetings. CONCLUSION: Adapting the CO-WORK-CARE model to Swedish primary care is feasible and beneficial, with collaboration among the care manager, rehabilitation coordinator and GP and person-centred dialogue meetings. Thorough preparations, ongoing facilitator and peer support and integrated information enhanced implementation efficiency, despite challenges posed by existing structures.

The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents.

BACKGROUND: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives. METHODS: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. RESULTS: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. CONCLUSIONS: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.

Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy.

The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at -2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.

Clinical effectiveness of care managers in collaborative primary health care for patients with depression: 12- and 24-month follow-up of a pragmatic cluster randomized controlled trial.

BACKGROUND: In previous studies, we investigated the effects of a care manager intervention for patients with depression treated in primary health care. At 6 months, care management improved depressive symptoms, remission, return to work, and adherence to anti-depressive medication more than care as usual. The aim of this study was to compare the long-term effectiveness of care management and usual care for primary care patients with depression on depressive symptoms, remission, quality of life, self-efficacy, confidence in care, and quality of care 12 and 24 months after the start of the intervention. METHODS: Cluster randomized controlled trial that included 23 primary care centers (11 intervention, 12 control) in the regions of Västra Götaland and Dalarna, Sweden. Patients ≥18 years with newly diagnosed mild to moderate depression (n = 376: 192 intervention, 184 control) were included. Patients at intervention centers co-developed a structured depression care plan with a care manager. Via 6 to 8 telephone contacts over 12 weeks, the care manager followed up symptoms and treatment, encouraged behavioral activation, provided education, and communicated with the patient's general practitioner as needed. Patients at control centers received usual care. Adjusted mixed model repeated measure analysis was conducted on data gathered at 12 and 24 months on depressive symptoms and remission (MADRS-S); quality of life (EQ5D); and self-efficacy, confidence in care, and quality of care (study-specific questionnaire). RESULTS: The intervention group had less severe depressive symptoms than the control group at 12 (P = 0.02) but not 24 months (P = 0.83). They reported higher quality of life at 12 (P = 0.01) but not 24 months (P = 0.88). Differences in remission and self-efficacy were not significant, but patients in the intervention group were more confident that they could get information (53% vs 38%; P = 0.02) and professional emotional support (51% vs 40%; P = 0.05) from the primary care center. CONCLUSIONS: Patients with depression who had a care manager maintained their 6-month improvements in symptoms at the 12- and 24-month follow-ups. Without a care manager, recovery could take up to 24 months. Patients with care managers also had significantly more confidence in primary care and belief in future support than controls. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02378272. Submitted 2/2/2015. Posted 4/3/2015.

Long-term effect of a care manager on work ability for patients with depression - the PRIM-CARE RCT.

BACKGROUND: Collaborative care with a care manager in primary care improves care. OBJECTIVE: To study whether care manager support leads to improved work ability, decreased job strain and reduced time of sick leave among primary care patients with depression. METHODS: A clinical effectiveness study of care managers for depression patients seeking care in primary care was conducted in a RCT 2014 -2016. Patients in the intervention group were assigned a care manager. In the 12-month follow-up, patients with employment (n = 269; intervention n = 142, control n = 127) were studied concerning work ability, job strain and sick leave. RESULTS: An association was shown between reduction of depressive symptoms and improved work ability for the entire group. At 12-month follow-up a statistically significant difference of reduction of depressive symptoms was seen between the groups (MADRS-S: intervention 10.8 vs control 13.1, p = 0.05) as well as increased quality of life (EQ-5D: intervention 0.77 vs control 0.70, p = 0.04). In the intervention group, a concordance was found between the patient's prediction of return to work and the actual return to work (91%for intervention and 68 %for control group, p = 0.047). CONCLUSIONS: Compared to usual care, the care manager does not seem to further improve perception of work ability, job strain or perception of social support per se among the patients despite a long-term effect on depression symptoms. The lack of a long-term effect regarding these aspects may be due to the fact that care manager support was only provided during the first three months.

Older Persons' Views on Important Values in Swedish Home Care Service: A Semi-Structured Interview Study.

Introduction: Knowledge of older person's experiences of important values in home care service can facilitate the development and delivery of high-quality services supporting their well-being, dignity and participation in the care provided. To date, few studies have explored older person's values and experiences of home care services. Purpose: This study aimed to explore values that older person holds regarding home care services and their experiences of how these values manifest in home care service delivery. Participants and Methods: The study has a qualitative exploratory design. Semi-structured interviews were conducted with 16 older persons aged 74-90 who received home care service. Data were analysed using qualitative content analysis. Results: Two themes (each with sub-themes) of values relating to the experience of home care service from the perspective of the 16 older persons were identified: to be supported as an autonomous person and to be supported as a relational being. The participants experience that these two values were only partly manifested in the home care services they received. They also noted that their well-being was negatively affected when staff failed to implement these values. The fundamental values identified in study related to the older person feeling safe, being autonomous, maintaining control and independence, and having relationships. The values constitute help to guide practice from the perspective of older persons who receive home care services. Conclusion: The identified values are primarily interpersonal-level values. However, such values are also of importance for home care service organisations when promoting delivery of person-centred care. Taking such a position implies adopting a relation-oriented rather than a task-oriented approach in providing home care services for older persons.

A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study.

OBJECTIVE: The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors. METHOD: A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors. RESULTS: About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin. SIGNIFICANCE OF RESULTS: The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care.

This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

Is the family talk intervention feasible in paediatric oncology? An evaluation of a family-based psychosocial intervention.

AIM: To examine the feasibility of a family-based psychosocial intervention, Family Talk Intervention (FTI), in paediatric oncology in terms of recruitment, retention, delivery, response rate and acceptability from the parents' perspective. METHODS: This study involved 26 families affected by childhood cancer. FTI encompasses six family meetings, with the main goal being to facilitate family communication about illness-related subjects. Meeting 5 is preferably moderated by the parents. Extra meetings (7-11) can be held if needed. This paper includes observational data and surveys, and interviews with parents. RESULTS: All families who started FTI underwent the full intervention and the survey response rate varied between 100% and 71% over time. Extra meetings were held with most families. The parents stated that FTI filled a gap of support to the family as a unit and described FTI as a map they could follow. Since FTI was conducted at home, this created a safe environment, which contributed to their participation. The parents valued the children's perspectives being considered, but some felt uncomfortable moderating 'the family talk' (meeting 5). CONCLUSION: Family talk intervention was valued by parents, but it would benefit from being slightly modified before a large trial can be developed.

Needs and Perceptions Relative to Emotional Support in Parents With Preterm Infants.

Objectives of this study were to explore parents' needs for emotional support and how such support could be best delivered during admittance to a neonatal unit. This study took place at 6 neonatal units in Sweden. Forty-two semistructured interviews were analyzed using qualitative content analysis: 26 individual telephone interviews with mothers of preterm infants 6 to 10 months after discharge and 16 face-to-face interviews with parents of preterm infants admitted to neonatal units. The main category to emerge was needs and preferences for emotional support , which consisted of 2 generic categories: emotional needs and preferences for potential support interventions . Emotional needs define the importance of comprehending the new situation, finding meaning, and managing the situation through resources. Preferences for potential support interventions identify possible ways to deliver emotional support in the form of parental group, diary writing, professional counseling, and Internet support. The results highlight the importance of supporting parents' sense of coherence in their situation and parenthood by offering different interventions according to parent preferences. Parental groups could serve as a keystone for emotional support with the possibility to combine with other support mechanisms.

The care manager meeting the patients' unique needs using the care manager model-A qualitative study of experienced care managers.

BACKGROUND: Implementation of a care manager in a collaborative care team in Swedish primary care via a randomized controlled trial showed successful outcome. As four years have elapsed since the implementation of care managers, it is important to gain knowledge about the care managers' long-term skills and experiences. The purpose was to examine how long-term experienced care managers perceived and experienced their role and how they related to and applied the care manager model. METHOD: Qualitative study with a focus group and interviews with nine nurses who had worked for more than two years as care managers for common mental disorders. The analysis used Systematic Text Condensation. RESULTS: Four codes arose from the analysis: Person-centred; Acting outside the comfort zone; Successful, albeit some difficulties; Pride and satisfaction. The care manager model served as a handrail for the care manager, providing a trustful and safe environment. Difficulties sometimes arose in the collaboration with other professionals. CONCLUSION: This study shows that long-term experience of working as a care manager contributed to an in-depth insight and understanding of the care manager model and enabled care managers to be flexible and act outside the comfort zone when providing care and support to the patient. A new concept emerged during the analytical process, i.e. the Anchored Care Manager, which described the special competencies gained through experience. TRIAL REGISTRATION: NCT02378272  Care Manager-Coordinating Care for Person Centered Management of Depression in Primary Care (PRIM-CARE).

A sense of health and coherence in young rural schoolchildren in Sweden.

Background: Little is known about how younger schoolchildren in a rural setting experience their sense of coherence (SOC), how they think and reason about health and what they perceive as important to achieve health goals. This study aimed to investigate children's SOC and their health perceptions.Method: In this mixed-method study 94 children (8-12 years) from three rural schools answered several questionnaires: The Child-SOC (CSOC), Positive Health Scale (PHS) and Cantril's ladder of life scale. Another 23 children (of 94) participated in four focus group interviews. Thematic analysis was used to identify themes from the interview transcripts.Results: High SOC was reported by 48% of the boys and 22% of the girls. However, no significant gender differences were found. Four themes were generated from the qualitative analysis: Understanding health, Managing health, Doing bodily health and Socialising health. Both younger and older children had a holistic view of health in which health was seen as an individual's living habits in which social contacts mattered.Conclusion: In a rural context children need to adapt to activities that exist in their immediate environment. Thus, activities during school hours can be an important complement in health promotion.

Important aspects of home care service: An interview study of persons with dementia.

BACKGROUND AND AIM: Because of the policy of 'ageing in place' and a decreasing number of beds in residential settings, more persons with dementia live at home with support from home care services. However, previous studies have revealed more unmet needs and a lower quality of life in this group than in other groups. Because few qualitative studies are performed in which persons with dementia have the opportunity to tell their own stories and describe what they find important, this study aimed to interview persons with dementia and describe their views on the important aspects of receiving home care service. METHODS: The study used a qualitative approach, and 14 persons with dementia participated in the interviews. The interviews were analysed using qualitative content analysis. FINDINGS: The findings revealed one overarching theme. The importance of being supported as a unique and capable human, that is the persons with dementia stated that despite their dementia diagnoses, it was important to be seen as a person with capabilities, although in need of support. This theme was built on three subthemes: being seen as a person, being informed and involved, and being part of a relationship. CONCLUSIONS: Our study showed that persons with dementia are able to express, formulate and reflect on their needs and preferences about their daily care as well as what is important to them when receiving home care service. Therefore, their point of view should be taken into consideration when planning, providing and evaluating care.

Much is left unspoken: Self-reports from families in pediatric oncology.

BACKGROUND: Communication about illness-related subjects is complex and difficult. To support entire families in pediatric oncology, health care professionals need to know what family members think, but leave unspoken. The aim of this study was to explore how families in pediatric oncology experienced illness-related information and communication with professionals and within the family. PROCEDURE: A cross-sectional web survey was used. Families were recruited from one pediatric oncology center in Sweden, 2-3 months after diagnosis. One hundred eighteen family members (ill children, siblings, and parents) representing 27 families filled out age-adapted surveys. RESULTS: Eighty-six percent of the parents and 71% of the siblings reported that they had not received enough or any information about how the cancer and its treatment could affect the child's psychological health. The families reported that they did not dare ask professionals questions about psychosocial issues and future-related subjects. Nor did they talk with one another, even though 55% of the parents and 24% of the children wanted to reveal more about how they felt to someone in the family. The parents reported the lowest family communication, and few families had all members reporting the same perception of family communication. CONCLUSIONS: Much is still left unspoken in pediatric oncology and the needs of the families are prominent. Assessments of each family member's needs might form a basis for professionals to give each person adequate information and family support. An increased awareness in families about family members' different needs might lead to mutual understanding.

Longitudinal cohort study reveals different patterns of stress in parents of preterm infants during the first year after birth.

AIM: To compare experiences of stress in mothers and fathers of preterm infants during the first year of life, assess changes in parental stress and explore potential predictors of parental stress. METHODS: Between 2013 and 2015, data on parental stress were collected at 8 weeks after discharge and at 6 and 12 months postpartum from 493 mothers and 329 fathers of 547 preterm infants in Sweden. The Swedish Parenting Stress Questionnaire was used as a secondary outcome in a randomised clinical trial of breastfeeding support. RESULTS: At the three time points, mothers perceived more role restriction and fathers more social isolation (P < .001). Stress decreased in mothers during the first year (P = .018), whereas stress increased in fathers between 6 and 12 months (P = .048). Mothers of very preterm infants (P = .024), parents of twins (P = .038) and parents with lower perceived general health (P = .003) reported higher levels of stress during the first year after birth. CONCLUSION: This study identified several factors that influenced parental stress. Mothers and fathers showed different patterns of stress levels during the first year after birth. This finding indicates different needs for mothers and fathers regarding the time at which parental support after discharge might be most beneficial.

Cancer-bereaved siblings' advice to peers - A nationwide follow-up survey.

The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings' advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.

[Effects of a care manager organization for care of people with mild-moderate depression in Swedish primary care]. / Vårdsamordnare för depression ­ effektivt grepp i primärvården - Gav friskare patienter och hälsoekonomiska vinster.

By strengthening accessibility and continuity and support via a care manager for primary care patients with depression corresponding to 20-30% of a nursing service, patients recovered significantly faster and to a greater extent than in primary care-as-usual. Return to work occurred significantly earlier in the first three months, and net sick leave period was significantly shorter during the following 4-6 months. To introduce a collaborative care organizational change where the care manager is the hub and coordinates care for the patient and makes it possible to adapt the care according to the patient's needs throughout the care process, is thus the individual effort shown to have the greatest efficiency in Swedish primary care to increase the quality of care of depression. This approach, where the clinic and academy work closely and continuously in the development and evaluation phases, makes it possible to rapidly develop new ways of working where consideration is given to the complexity of primary care and the complexity of care needs and care efforts.

An interview study of the care manager function-Opening the door to continuity of care for patients with depression in primary care.

AIM: To explore experiences among patients with depression of contact with a care manager at a primary care centre. DESIGN: A qualitative explorative study. METHODS: During spring and summer 2016, 20 individual face-to-face interviews were conducted with patients with experience of care manager contact. The material was analysed using systematic text condensation. RESULTS: The participants described that having contact with a care manager was a support in their recovery process. Care became more available, and the structured continuous contact and the care manager's availability contributed to a trusting relationship. Having someone to share their burden with was a relief. However, it was described as negative when the care manager was perceived as inflexible and not open to issues that the participants felt a need to discuss. For the care manager contact to be successful, there is a need for flexibility and individually tailored contact.

Care managers can be useful for patients with depression but their role must be clear: a qualitative study of GPs' experiences.

Objective: Explore general practitioners' (GPs') views on and experiences of working with care managers for patients treated for depression in primary care settings. Care managers are specially trained health care professionals, often specialist nurses, who coordinate care for patients with chronic diseases. Design: Qualitative content analysis of five focus-group discussions. Setting: Primary health care centers in the Region of Västra Götaland and Dalarna County, Sweden. Subjects: 29 GPs. Main outcome measures: GPs' views and experiences of care managers for patients with depression. Results: GPs expressed a broad variety of views and experiences. Care managers could ensure care quality while freeing GPs from case management by providing support for patients and security and relief for GPs and by coordinating patient care. GPs could also express concern about role overlap; specifically, that GPs are already care managers, that too many caregivers disrupt patient contact, and that the roles of care managers and psychotherapists seem to compete. GPs thought care managers should be assigned to patients who need them the most (e.g. patients with life difficulties or severe mental health problems). They also found that transition to a chronic care model required change, including alterations in the way GPs worked and changes that made depression treatment more like treatment for other chronic diseases. Conclusion: GPs have varied experiences of care managers. As a complementary part of the primary health care team, care managers can be useful for patients with depression, but team members' roles must be clear. KEY POINTS A growing number of primary health care centers are introducing care managers for patients with depression, but knowledge about GPs' experiences of this kind of collaborative care is limited. GPs find that care managers provide support for patients and security and relief for GPs. GPs are concerned about potential role overlap and desire greater latitude in deciding which patients can be assigned a care manager. GPs think depression can be treated using a chronic care model that includes care managers but that adjusting to the new way of working will take time.