The Family Talk Intervention Among Families Affected by Severe Illness: Hospital Social Workers' Experiences of Facilitators and Barriers to its Use in Clinical Practice.

Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study. Within the study, HSWs were educated and trained in the use of FTI in clinical practice. This study examined HSWs' experiences of barriers and facilitating factors during their initial use of FTI in clinical practice. Altogether, 10 semi-structured focus groups were held with HSWs (n = 38) employed in cancer care and specialized palliative home care for adults, pediatric hospital care, and a children's hospice. Data were analyzed using content analysis. HSWs considered FTI to be a suitable psychosocial intervention for families affected by severe illness with dependent children. However, the way in which the care was organized acted either as a barrier or facilitator to the use of FTI, such as the HSWs' integration in the team and their possibility to organize their own work. The HSWs' work environment also impacted the use of FTI, where time and support from managers was seen as a significant facilitating factor, but which varied between the healthcare contexts. In conclusion, HSWs believed that FTI was a suitable family intervention for families involving dependent children where one family member had a severe illness. For successful initial implementation, strategies should be multi-functional, targeting the care organization and the work environment.

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.

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.

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.

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.

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).

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.

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.

Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured.

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.

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.

Clinical effectiveness of care managers in collaborative care for patients with depression in Swedish primary health care: a pragmatic cluster randomized controlled trial.

BACKGROUND: Depression is one of the leading causes of disability and affects 10-15% of the population. The majority of people with depressive symptoms seek care and are treated in primary care. Evidence internationally for high quality care supports collaborative care with a care manager. Our aim was to study clinical effectiveness of a care manager intervention in management of primary care patients with depression in Sweden. METHODS: In a pragmatic cluster randomized controlled trial 23 primary care centers (PCCs), urban and rural, included patients aged ≥ 18 years with a new (< 1 month) depression diagnosis. Intervention consisted of Care management including continuous contact between care manager and patient, a structured management plan, and behavioral activation, altogether around 6-7 contacts over 12 weeks. Control condition was care as usual (CAU). OUTCOME MEASURES: Depression symptoms (measured by Mongomery-Asberg depression score-self (MADRS-S) and BDI-II), quality of life (QoL) (EQ-5D), return to work and sick leave, service satisfaction, and antidepressant medication. Data were analyzed with the intention-to-treat principle. RESULTS: One hundred ninety two patients with depression at PCCs with care managers were allocated to the intervention group, and 184 patients at control PCCs were allocated to the control group. Mean depression score measured by MADRS-S was 2.17 lower in the intervention vs. the control group (95% CI [0.56; 3.79], p = 0.009) at 3 months and 2.27 lower (95% CI [0.59; 3.95], p = 0.008) at 6 months; corresponding BDI-II scores were 1.96 lower (95% CI [- 0.19; 4.11], p = 0.07) in the intervention vs. control group at 6 months. Remission was significantly higher in the intervention group at 6 months (61% vs. 47%, p = 0.006). QoL showed a steeper increase in the intervention group at 3 months (p = 0.01). During the first 3 months, return to work was significantly higher in the intervention vs. the control group. Patients in the intervention group were more consistently on antidepressant medication than patients in the control group. CONCLUSIONS: Care managers for depression treatment have positive effects on depression course, return to work, remission frequency, antidepressant frequency, and quality of life compared to usual care and is valued by the patients. TRIAL REGISTRATION: Identifier: NCT02378272 . February 2, 2015. Retrospectively registered.

Creating a safety net for patients with depression in primary care; a qualitative study of care managers' experiences.

OBJECTIVE: The aim of this study was to explore nurses' experiences and perceptions of working as care managers at primary care centers. DESIGN: Qualitative, focus group study. Systematic text condensation was used to analyze the data. SETTING: Primary health care in the region of Västra Götaland and region of Dalarna in Sweden. SUBJECTS: Eight nurses were trained during three days including treatment of depression and how to work as care managers. The training was followed by continuous support. MAIN OUTCOME MEASURES: The nurses' experiences and perceptions of working as care managers at primary care centers. RESULTS: The care managers described their role as providing additional support to the already existing care at the primary care center, working in teams with a person-centered focus, where they were given the opportunity to follow, support, and constitute a safety net for patients with depression. Further, they perceived that the care manager increased continuity and accessibility to primary care for patients with depression. CONCLUSION: The nurses perceived that working as care managers enabled them to follow and support patients with depression and to maintain close contact during the illness. The care manager function helped to provide continuity in care which is a main task of primary health care. Key Points The care managers described their role as an additional support to the already existing care at the primary care center. • They emphasized that as care managers, they had a person-centered focus and constituted a safety net for patients with depression. • Their role as care managers enabled them to follow and support patients with depression over time, which made their work more meaningful. • Care managers helped to achieve continuity and accessibility to primary health care for patients with depression.

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.

Existential issues among nurses in surgical care--a hermeneutical study of critical incidents.

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.

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.

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.

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.