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 astructured 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.

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.

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.

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.

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.

Introduction There is evidence that families with a child diagnosed with cancer need psychosocial support throughout the illness trajectory. Unfortunately, there is little research into psychosocial interventions for such families, especially interventions where the entire family is involved. The aim of this pilot study is therefore to evaluate a psychosocial intervention, the family talk intervention (FTI), in paediatric oncology in terms of study feasibility and potential effects.

Methods and analysis This pretest/post-test intervention pilot study is based on families with a child diagnosed with cancer. All families that include at least one child aged 6–19 years (ill child and/or sibling) at one of the six paediatric oncology centres in Sweden between September 2018 and September 2019 will be asked about participation. The intervention consists of six meetings with the family (part of the family or the entire family), led by two interventionists. The core elements in the intervention are to support the families in talking about the illness and related subjects, support the parents in understanding the needs of their children and how to support them and support the families in identifying their strengths and how to use them best. Mixed methods are used to evaluate the intervention (web-based questionnaires, interviews, field notes and observations). Self-reported data from all family members are collected at baseline, directly after the intervention and 6 months later. Study outcomes are family communication, knowledge about the illness, resilience, quality of life and grief.

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.

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.

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.

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.

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.

BACKGROUND: The collaborative care model with a care manager has previously generated beneficial results for patients with depression in terms of decreased burden of depression symptoms. A care manager function has been tested in Sweden in the PRIM-CARE RCT with successful results. The aim of the present study was to evaluate the process of implementing care managers in collaborative care for patients with depression in Swedish primary health care in the PRIM-CARE RCT.

METHODS: The study followed UK Medical Research Council guidance for process evaluation. Field notes from the implementation of the PRIM - CARE RCT were used, as well as data collected from five focus group discussions with General Practitioners (n = 29) and three focus group discussions with care managers (n = 11). Data were analysed with content analysis.

RESULTS: Training sessions, careful preparation and extensive initial support to the care manager and staff at the Primary Care Centres were important ingredients in the implementation. The close access to facilitators, the recurrent peer support meetings, and the weekly newsletter strengthened the care manager function.

CONCLUSIONS: A complex intervention adapted to the Swedish primary care context focusing on a care manager function for patients with depression could be performed through a stepwise implementation process. Financial support from the health care regions included in the study helped to reduce the impact of identified barriers. This process evaluation has revealed new and important knowledge for primary care development concerning infrastructure and organization building, knowledge sharing, and facilitating factors and barriers.

TRIAL REGISTRATION: NCT02378272 Care Manager - Coordinating Care for Person Centered Management of Depression in Primary Care (PRIM - CARE). Registered March 4 2015. Retrospectively registered.

AIM: The aim of this study was to describe surgical nurses' perceived work-related stress in the care of severely ill and dying patients with cancer after participating in an educational intervention on existential issues.

METHODS AND SAMPLE: This article reports a mixed methods pilot study of an education programme consisting of lectures and supervised discussions conducted in 2009-2010 in three surgical wards in a county hospital in Sweden. The concurrent data collections consisted of repeated interviews with eleven nurses in an educational group, and questionnaires were distributed to 42 nurses on four occasions.

RESULTS: Directly after the educational intervention, the nurses described working under high time pressure. They also described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients' needs rather than the organizational structure. They also reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work.

CONCLUSIONS: Results indicate that it may be possible to influence nurses' work-related stress through an educational intervention. According to nurses' descriptions, reflecting on their ways of caring for severely ill and dying patients, many of whom had cancer, from an existential perspective, had contributed to enhanced independent decision making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.

AIMS: To report a qualitative study conducted to gain a deeper understanding of surgical nurses' experiences of existential care situations. Background.  Existential issues are common for all humans irrespective of culture or religion and constitute man's ultimate concerns of life. Nurses often lack the strategies to deal with patients' existential issues even if they are aware of them.

DESIGN: This is a qualitative study where critical incidents were collected and analysed hermeneutically.

METHODS: During June 2010, ten surgical nurses presented 41 critical incidents, which were collected for the study. The nurses were first asked to describe existential care incidents in writing, including their own emotions, thoughts, and reactions. After 1-2 weeks, individual interviews were conducted with the same nurses, in which they reflected on their written incidents. A hermeneutic analysis was used.

FINDINGS: The majority of incidents concerned nurses' experiences of caring for patients' dying of cancer. In the analysis, three themes were identified, emphasizing the impact of integration between nurses' personal self and professional role in existential care situations: inner dialogues for meaningful caring, searching for the right path in caring, and barriers in accompanying patients beyond medical care.

CONCLUSION: Findings are interpreted and discussed in the framework of Buber's philosophy of the relationships I-Thou and I-It, emphasizing nurses' different relationships with patients during the process of caring. Some nurses integrate their personal self into caring whereas others do not. The most important finding and new knowledge are that some nurses felt insecure and were caught somewhere in between I-Thou and I-It.

AIM: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.

METHODS: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.

RESULTS: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.

CONCLUSION: Training to overcome communication issues could support the early integration of palliative care.

BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.

AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.

DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.

SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.

RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.

CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.

PURPOSE: The aim was, through analysis of dialogues in supervision sessions, to explore if health care staff in surgical care discussed existential issues when caring for cancer patients.

METHOD: A secondary analysis of the content of twelve tape-recorded supervision sessions (18 h) was conducted. The study analysed the dialogue content in supervision sessions involving a group of eight participants who worked at a surgical clinic at a county hospital in central Sweden. The sessions were held every third week during the course of one year.

RESULTS: The analysis showed that surgical health care staff contemplates existential issues. The staff discussed their existential dilemmas, which hindered them from meeting and dealing with patients' existential questions. This is illustrated in the themes: "feelings of powerlessness", "identifying with patients", and "getting close or keeping one's distance". The staff also discussed the fact that patients expressed existential distress, which is illustrated in the themes: "feelings of despair" and "feelings of isolation".

CONCLUSIONS: This study shows that there are existential issues at a surgical clinic which health care staff need to acknowledge. The staff find themselves exposed to existential dilemmas when caring for cancer patients. They are conscious of patients' existential issues, but lack strategies for dealing with this. This study highlights a need to provide support to staff for developing an existential approach, which will boost their confidence in their encounters with patients.