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Background: Psychosomatic complaints have increased among adolescents in recent decades, as have overweight and obesity rates. Both of these trends are regarded as public health concerns. However, the associations between weight status and psychosomatic complaints are not yet clear, necessitating further research. The aim of the present study was to investigate the associations between weight status and psychosomatic complaints in Swedish adolescent boys and girls, as well as to explore the potential buffering effect of family support., Methods: The data was obtained from the cross-sectional Swedish Health Behaviour in School-aged Children (HBSC) study conducted in 2017/18, which involved 3,135 students aged 11, 13, and 15 years. Weight status was based on self-reported information on weight and height, which allowed for the calculation of body mass index (BMI) and the categorisation of participants into three groups: non-overweight, overweight, and obese. Psychosomatic complaints were assessed based on information regarding the frequency of eight different complaints, which were summed into an index. Family support was measured using three items describing the level of perceived emotional support, and an index was created, which was dichotomised into low and high family support. Gender stratified linear regression models were run to examine the associations between weight status and psychosomatic complaints. Age and family affluence were included as covariates. Interaction terms were included to evaluate whether family support moderated the main association., Results: Obesity was associated with higher levels of psychosomatic complaints in both boys and girls when compared to being non-overweight (boys: b = 2.56, 95% CI 0.32, 4.79; girls: b = 3.35, 95% CI 0.77, 5.94), while being overweight did not show any statistically significant associations with the outcome (boys: b = 0.21, 95% CI -0.72, 1.15; girls: b = 0.78, 95% CI -0.42, 1.98). In girls, a statistically significant interaction effect between family support and weight status was observed (p = 0.031), indicating that family support buffered against psychosomatic complaints in girls with obesity. No statistically significant interaction was found for boys (p = 0.642)., Conclusions: The findings of this study highlight the importance of public health initiatives aimed at preventing childhood obesity. They also underscore the significant role of family support in reducing psychosomatic complaints among adolescents with obesity. Further research is necessary to gain a deeper understanding of these relationships., (© 2024. The Author(s).)

Objectives: Mental and cognitive health is crucial to ensure well-being in older age. However, prolonged periods of stress, grief, and bereavement might compromise mental health balance, leading to profound changes. This study investigated the sex-stratified associations between midlife bereavement experiences (e.g. sibling loss, spousal loss, and multiple losses) and late-life depression (LLD) and cognitive impairment., Method: Linked data from the Swedish Level-of-Living Survey and the Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD) were used. Multiple logistic regressions were performed to examine the associations between midlife bereavement and LLD ( n  = 1078) and cognitive impairment ( n  = 995), separately., Results: Sibling loss and multiple losses in midlife were associated with lower odds of LLD, especially among women. Among men, sibling loss in midlife was associated with lower odds of cognitive impairment, while the experience of two losses among women suggested an increased (but non-significant) risk of cognitive impairment. Interaction analyses did not show significant effects between bereavement and gender on LLD and cognitive impairment., Conclusion: Midlife bereavement might have gendered implications on LLD and cognitive impairment, but associations need to be confirmed by well-powered studies. Further research is warranted to elucidate the association between multiple midlife losses and reduced LLD risk.

Objectives: The purpose of this study was to describe the experiences and actions of part-time firefighters' family members in rural areas in Sweden., Design: The study had an inductive descriptive design and used the critical incident technique., Setting: Rural areas, primarily served by a part-time fire station, across Sweden., Participants: The study included 25 participants (21 females and 4 males) with experiences of being a family member of a part-time firefighter. Family members who themselves served as firefighters were excluded., Results: Being a part-time firefighter's family member was described into three main areas of experiences: 'affecting everyday life', 'dealing with uncertainty' and 'being in this together'. Actions taken were divided into two main areas: 'pursuing adaptations' and 'alleviating difficulties'., Conclusions: Family members of part-time firefighters faced increased responsibility at home, managing personal inconvenience and frustration. They offered emotional support for the firefighter, however, expressing a need for guidance on handling firefighters' emotions and mental health after call-outs. Despite their crucial role, they often felt unrecognised by the fire and rescue service. Nonetheless, they took pride in their firefighter's contribution to the community and noted positive impacts on the family., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice., Methods: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses., Results: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information., Conclusions: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives., Practice Implications: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family's inheritance pattern explained., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Problem gambling (PG) is a public health concern with severe repercussions for the individual, concerned significant others and the society. Foreign borns generally gamble less but are overrepresented among those with PG. Previous research has suggested that other factors, such as socio-economic status, might explain this, but also that cultural factors might play a role in the relationship to gambling and the development of PG. This qualitative study using content analysis investigates the experiences of and opinions about gambling and PG among 12 males living in Sweden with a migrant background in Afghanistan, the Middle East and North Africa. The results were show that the acculturation process could be a factor in developing PG, as well as a cultural values regarding money and wealth. PG was seen as more stigmatized in the origin country, and the family played a more important role in the rehabilitation of PG compared to the general population. The results of this study could be used to inform preventive and clinical programs to better reach people with a migrant background., (© 2024. The Author(s).)

Background: The place of death of cancer patients is an important aspect of end-of-life care. However, little research has been conducted regarding factors that may influence the preferred and actual place of death in cancer patients and whether the patients die at their preferred place of death. In this study, we aimed to investigate the preferred and actual place of death for palliative cancer patients, and factors influencing these variables. Methods: Patients diagnosed with cancer and admitted to a palliative care team across three Swedish cities between 2019 and 2022 were asked for participation. Participants completed a questionnaire capturing sociodemographic data and preferred place of death. Further data regarding age, sex, and cancer type were collated at inclusion, and the actual place of death recorded for those deceased by 5-May-2023. Results: The study included 242 patients. A majority (79%) wanted to die at home which was the actual death location for 76% of the patients. When the place-of-death decision was made by the patient alone, 75% chose home, compared to 96% when decided jointly with relatives-a statistically significant variation (p = 0.0037). For the patients who wanted to die at home, 80% actually died at home, with insignificant disparities among subgroups. Conclusions: Most palliative cancer patients in this Swedish cohort preferred and achieved death at home. Involving relatives in decision-making may influence the preferred place of death, however larger studies are needed to comprehensively assess factors affecting the preferred and actual place of death in different subgroups of patients., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: Brief Admission by self-referral (BA) is a standardized crisis-management intervention for individuals with self-harm and risk for suicide. This study explored relatives' experiences of BA. Relatives' perspectives may contribute to an increased understanding of the effects of BA given the relatives' role as support and informal caregivers as well as being co-sufferers., Methods: Fourteen relatives to adults with access to BA within one Swedish region participated in focus groups analysed with reflexive thematic analysis., Results: We generated themes evolving around three meaning-based concepts: access (A low threshold to a safe back-up is crucial and obstacles may easily break faith), independence (Trust in their ability with care and respect), and recovery (The rest and relational recovery we all get are needed and invaluable)., Conclusions: BA brings considerable value to users and relatives, by supporting them to take care of themselves and each other. Communication and involvement of relatives may enhance users' ability to overcome obstacles to accessing BA. Implementation and adherence may be strengthened by supervision of BA staff and education of emergency care staff. Resources are needed to improve access. Mapping hurdles to BA, support through peers and targeted psychoeducation may improve recovery for BA users and their relatives.

To examine whether the level of genetic risk in psychiatric disorders impacts the social functioning of affected individuals, we examine the relationship between genetic risk factors for major depression (MD), anxiety disorders (AD), bipolar disorder (BD), non-affective psychosis (NAP), alcohol use disorder (AUD), and drug use disorder (DUD) in disordered individuals and five adverse social outcomes: unemployment, residence in areas of social deprivation, social welfare, early retirement, and divorce. We examine all cases with registration for these disorders from 1995 to 2015 in individuals born in Sweden. Genetic risk was assessed by the family genetic risk score (FGRS) and statistical estimates by Cox proportional hazard models. High genetic risk was significantly and modestly associated with poorer social outcomes in 23 of 30 analyses. Overall, genetic risk for MD, AD, AUD, and DUD impacted social functioning more strongly in affected individuals than did genetic risk for BD and NAP. Social welfare had the strongest associations with genetic risk, and residence in areas of high deprivation had the weakest. In individuals suffering from psychiatric and substance use disorders, high levels of genetic risk impact not only clinical features but also diverse measures of social functioning., (© 2024 The Author(s). American Journal of Medical Genetics Part B: Neuropsychiatric Genetics published by Wiley Periodicals LLC.)

Aims: Guidelines support family-witnessed resuscitation (FWR) during cardiopulmonary resuscitation in hospital if deemed to be safe, yet barriers amongst healthcare professionals (HCPs) still exist. This study aimed to evaluate the effects of an educational online video intervention on nurses' and physicians' attitudes towards in-hospital FWR and their self-confidence in managing such situations., Methods and Results: A pre- and post-test quasi-experimental study was conducted October 2022 to March 2023 at six Swedish hospitals involving the departments of emergency care, medicine, and surgery. The 10 min educational video intervention was based on previous research covering the prevalence and outcome of FWR, attitudes of HCP, patient and family experiences, and practical and ethical guidelines about FWR.In total, 193 accepted participation, whereof 91 answered the post-test survey (47.2%) with complete data available for 78 and 61 participants for self-confidence and attitudes, respectively. The self-confidence total mean scores increased from 3.83 to 4.02 (P < 0.001) as did the total mean scores for attitudes towards FWR (3.38 to 3.62, P < 0.001). The majority (71.0%) had positive views of FWR at baseline and had experiences of in-hospital FWR (58.0%). Self-confidence was highest amongst participants for the delivery of chest compressions (91.2%), defibrillation (88.6%), and drug administration (83.3%) during FWR. Self-confidence was lowest (58.1%) for encouraging and attending to the family during resuscitation., Conclusion: This study suggests that a short online educational video can be an effective way to improve HCP's self-confidence and attitudes towards the inclusion of family members during resuscitation and can support HCP in making informed decisions about FWR., Competing Interests: Conflict of interest: None declared., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Society of Cardiology.)

Background: Dravet syndrome (DS) is a Developmental and Epileptic Encephalopathy (DEE) with onset typically in infancy. Seizures are pharmaco-resistant, and neurodevelopment is compromised in almost all children. There is limited data on the impact of the condition on the family, support needs and hopes and fears in Sweden., Methods: Interviews were undertaken with the caregivers of 36 of 48 (75%) living children with DS in Sweden focusing on the perceived impact on the family, current supports and hopes and fears for the future. Data from the interviews were analyzed by two raters using reflexive thematic analysis., Results: The analysis revealed seven main themes focusing on the perceived negative impact the disease has on caregivers and family functioning. These negative impacts concerned: caregiver sleep (e.g., frequent night waking), siblings (e.g., gets less attention/time), social life (e.g., limited vacations), family finances (e.g., limited career progression), parental health (both mental and physical) and need for constant supervision (e.g., child's need for constant supervision for fear of seizures). Another theme concerned the impact on family relationships. Whilst some caregivers perceived the impact to be negative (e.g., limited time for each other) others felt that having a child with DS lead to stronger relationships and more 'teamwork'. With respect to supports, the caregivers identified a number of areas where they felt the family could access appropriate supports. Themes regarding supports included: support from the wider family and friends, support from DS support groups (online or in-person), support from the child's hospital or disability service and respite care (e.g., child was looked after on weekends or had paid carers in the home). Regarding hopes and fears for the future, responses focused mainly on fears, including concerns about premature death of the child, transition to adult healthcare services and care arrangements for child when parents are dead. Hopes for the future included better treatment for epilepsy and associated neurodevelopmental problems and finding a cure for DS., Conclusions: Caregivers of children with DS report that the disease can have a very comprehensive negative impact on caregiver and family functioning. Identifying and providing the supports to ameliorate these negative impacts is vital to optimize caregiver and family wellbeing and quality of life., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: The use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering predetermined questions in a template., Aim and Methods: Using a constructionist approach, this study will (1) chart what versions of a person's life story the templates produce, and (2) establish the intended purpose of such life stories, as communicated by the templates. This study departs from the assumption that life story templates communicate something about the conceptions of people living with dementia. The thematic analysis used data comprising 30 blank templates, totalling about 1,700 questions., Findings: The life story templates were found to generate two very different versions of the individual: (1) a person before symptoms of dementia or (2) a patient with dementia. We also found contradictions about what information should be included, whose life story it was, and the intended use., Discussion: Despite strong pressure on dementia care providers to collect life stories from residents, the life story templates they use are without clear direction, ideology, or purpose. The lack of direction is key given that life stories can be considered actants that shape assumptions about people with dementia and construct realities in dementia care settings. We highlight the need to develop ethical guidelines for life story template design, matched with guidelines for their intended use., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Social support provided by a family member has been found to have a buffering effect on distress and is associated with better diabetes self-care. This study explores the meaning of social support, as described by close family members of foreign-born people living with type 2 diabetes (PWDM) in Sweden. It also explores the support provided by family members, and the support they need to be able to support the PWDM., Methods: Qualitative explorative study, semi-structured interviews for data collection. Qualitative content analysis based on a theoretical framework on social support. Purposive sample of 13 family members, 18-52-years-old, born in countries in the Middle East, Africa, and Russia., Results: The meaning of support was described as social and emotional. Most participants described a stressful situation; feelings of sadness/worry about the risk of the PWDM developing complications added to a strained life situation from which one could not opt out. Frequent daily contacts in a family network were evident, particularly by children trained as healthcare professionals. Caring for a family member was considered a filial piety, but it was also a chance to reciprocate. The support provided was mainly informational (e.g., reminders about nutritional intake), but it was also instrumental/practical (administering medicines, helping with economy/logistics, planning/cooking meals, basic care) and emotional (sharing meals, thoughts, and activities). The support the family members needed was getting first-hand information by attending the physician visits, being able to book appointments themselves at suitable times, and preventing the withholding of important information about the PWDM. They also desired an open telephone-line, oral and written information, particularly on diet., Conclusions: To family-members, supporting the PWDM was normal and a filial piety. Support provided and needed was not only informational but also instrumental/practical and emotional. In diabetes care, addressing foreign-born individuals, diabetes education needs to be developed, also including family members. Informational material, particularly on diet, and improved access to healthcare and information about the healthcare system have the potential to increase family members' control over the situation and prevent a negative trajectory in caregiving with perceived demands causing high levels of stress., (© 2024. The Author(s).)

Introduction: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home., Methods: This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis., Results: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support., Conclusions: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home., (© 2024 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Direct contact may be an option for supporting disclosure in families with hereditary cancer risk. In this qualitative interview study, we explored how healthy at-risk relatives experience receiving a letter with information about hereditary cancer directly from healthcare rather than via a relative. The study is part of an ongoing multicentre randomised clinical trial in Sweden that evaluates the effectiveness of direct letters from cancer genetics clinics to at-risk relatives. After conducting semi-structured interviews with 14 relatives who had received a letter and contacted the clinic, we analysed the data using thematic analysis. The relatives had different levels of prior knowledge about the hereditary cancer assessment. Many had been notified by family that a letter was coming but some had not. Overall, these participants believed healthcare-mediated disclosure could complement family-mediated disclosure. They expressed that the letter and the message raised concerns and a need for counselling, and they wanted healthcare to be accessible and informed when making contact. The participants found the message easier to cope with when they had been notified by a family member beforehand, with a general attitude that notifying relatives was the appropriate step to take. They thought healthcare should help patients with the disclosure process but also guard the right of at-risk relatives to be informed. The findings support a direct approach from healthcare as a possible complement to an established model of family-mediated risk disclosure, but implementation must be made within existing frameworks of good practice for genetic counselling., (© 2024. The Author(s).)

Background/objectives: Call-bells are often taken-for-granted systems to heighten safety. In joint discussions among residential care home (RCH) residents, their family members, and staff, issues related to call-bell use in everyday life and work were repeatedly raised. In this article, we explore these experience-based perspectives, addressing several key questions important for call-bell use and communication., Research Design/methods: We inductively analyzed a series of individual interviews and group discussions with 44 individuals at two units of the same Swedish RCH, conducted as part of a participatory action research project to strengthen supportive end-of-life environments., Results: While the call-bell was a central part of RCH communication, we found: fragmented understanding about how the call bell functioned among all participants; many residents lacked the physical and cognitive competencies demanded for call-bell use; tensions between use of the call-bell for social/existential communication versus purely discrete tasks; and that a call-bell system assuming room-bound residents exacerbated issues related to varied response times, lack of feedback mechanisms, and pressured work situations., Discussion and Implications: Investigation of the call-bell system provides an empirical example of how complex relationships among stakeholders are played out in concrete situations. Tensions between different logics of care, and between clock and embodied time become evident., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

When addressing child and youth mental health, policy makers around the world call for collaboration between welfare providers. Research shows, however, that cross-sector collaboration is challenging. This article aims to scrutinize the issue of sustainability in the collaborative work undertaken between welfare providers to jointly support and promote child and youth mental health. In a qualitative interview study, 19 key officials involved in collaborative mental health work in three Swedish municipalities were interviewed, 13 individually and 6 in three small groups. Data were analyzed through content analysis and the application of practice-oriented collaboration theories. The results show that informants feel collaboration is beneficial for child and youth mental health. The results also show that five aspects of this collaborative work can affect its sustainability: (1) how the collaborative work was set up: if it was a special project or part of existing organizational structures; (2) what model of funding was used; (3) how many organizational levels were involved; (4) if goals were common, concurrent or contradictive; and (5) if important stakeholders were seen to be 'missing'. Collaboration members felt their collaborative work had caused them to drift away from important non-participant stakeholders. This article concludes that to develop long-term sustainable collaborations addressing child and youth mental health, key features of collaborative work need to be taken into consideration.

Purpose: Talking and grieving together may be advantageous for maintaining belief in a meaningful future and can help bereaved adolescents and their parents to cope better with the situation. The aim of this study was to explore communication, self-esteem and prolonged grief in adolescent-parent dyads, following the death of a parent to cancer., Method: This study has a descriptive and comparative design. Twenty family dyads consisting of parentally bereaved adolescents (12-19 years) and their widowed parents completed the Parent and Adolescent Communication Scale, Rosenberg Self-Esteem Scale and Prolonged Grief-13, 1-4 years following the death of a parent., Results: Twelve family dyads reported normal-high parent-adolescent communication, 11 dyads rated normal-high self-esteem. Two adolescents and three parents scored above the cut-off for possible prolonged grief disorder (≥35), none of these were in the same dyads. There was a difference (p < .05) between boys (mean 40.0) and girls (mean 41.9) with regard to open family communication, as assessed by parents. Girls reported lower self-esteem (mean 26.0) than boys (mean 34.1, p < .01)., Conclusions: This study provides insights from parentally bereaved families which indicate that despite experiencing the often-traumatic life event of losing a parent or partner, most participants reported normal parent-adolescent communication, normal self-esteem and few symptoms of prolonged grief. The potential usefulness of identifying families who may need professional support in family communication following the death of a parent is discussed., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Physical activity and exercise are central components in rehabilitation after a myocardial infarction. Kinesiophobia (fear of movement) is a well-known barrier for a good rehabilitation outcome in these patients; however, there is a lack of studies focusing on the patient perspective. The aim of this study was to explore patients' perceptions of kinesiophobia in relation to physical activity and exercise 2 to 3 months after an acute myocardial infarction., Methods: This qualitative study design used individual semi-structured interviews. Face-to-face interviews were conducted with 21 patients post-myocardial infarction who were screened for kinesiophobia (≥32 on the Tampa Scale for Kinesiophobia Heart). The interviews were transcribed and analyzed according to an inductive content analysis., Results: An overarching theme was defined as "coping with fear of movement after a myocardial infarction-a dynamic process over time" comprising 2 subthemes and explaining how coping with kinesiophobia runs in parallel processes integrating the patient's internal process and a contextual external process. The 2 processes are described in a total of 8 categories. The internal process was an iterative process governed by a combination of factors: ambivalence, hypervigilance, insecurity about progression, and avoidance behavior. The external process contains the categories of relatives' anxiety, prerequisites for feeling safe, information, and the exercise-based cardiac rehabilitation program., Conclusion: Coping with fear of movement after a myocardial infarction is a dynamic process that requires internal and external support. To further improve cardiac rehabilitation programs, person-centered strategies that support the process of each person-as well as new treatment strategies to reduce kinesiophobia-need to be elaborated., Impact: Patients with a myocardial infarction were found to be ambivalent about how they expressed their fear of movement; therefore, it is crucial for physical therapists to acknowledge signs of fear by listening carefully to the patient's full story in addition to using adequate self-reports and tests of physical fitness. These results will inform the design, development, and evaluation of new treatment strategies, with the overall aim of reducing kinesiophobia and increasing physical activity and participation in exercise-based cardiac rehabilitation., (© The Author(s) 2020. Published by Oxford University Press on behalf of the American Physical Therapy Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objective: The purpose of this study was to determine whether ease of access to alcohol at the neighborhood level moderates the impact of familial liability and marital status on risk for alcohol use disorder (AUD)., Method: Individuals in Sweden were divided into those residing in a neighborhood with (n = 14.1%) versus without (n = 85.9%) an alcohol outlet (bars/nightclubs or government stores). AUD was detected through national medical, legal, and pharmacy registries. Using an additive model predicting AUD registration over 5 years in 1,624,814 individuals, we tested for interactions between the presence of outlets in the individuals' neighborhoods and familial risk for externalizing syndromes and marital status., Results: In both males and females, we found positive and significant interactions in the prediction of AUD between the presence versus absence of a nearby alcohol outlet with (a) familial risk and (b) single and divorced versus married status. Similar but nonsignificant interactions were seen between nearby outlets and widowed versus married status. These results changed little when all cases with prior AUD were removed from the sample. For males, most of the interaction arose from the proximity of bars/nightclubs, whereas for females the results varied across different kinds of outlets., Conclusions: Environments that provide easy access to alcohol augment the impact of a range of risk factors for AUD, especially familial vulnerability and the reduced social constraints associated with single, divorced, and widowed marital status.

Background: The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals., Methods: Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed., Results: A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions., Conclusions: This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients' and family members' preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

Background: Today people can live a long time with a chronic cancer diagnosis, and it affects the entire family. Family members to patients in palliative care often have to leave valued occupations due to lack of time and energy, while new roles are forced upon them, potentially affecting their health. Objective: To explore occupational balance, needs and roles among family members to persons in palliative care. Methods: Six semi-structured interviews were conducted with family members to terminally ill persons enrolled to specialized palliative care. A qualitative content analysis guided the data collection and analysis. Result: An overarching theme Striving for control while being in the disease, and two categories Changing roles and occupations in the family; and Handling emotions in the end of life emerged from the data. Conclusion: The findings suggest that family members could benefit from strategies to maintain valued roles and occupations, and that palliative care provision need to develop new ways to take family members needs into consideration.

Purpose: The health-related quality of life (HRQoL) for patients with glioblastoma is known to be largely affected. Little is known about the HRQoL for relatives and the relationship between these two. To optimize family care, such issues need to be addressed early on, preferably from the time of diagnosis. This study aimed to describe and compare the HRQoL of patients with glioblastoma and their relatives before surgery., Methods: A prospective cohort study including 89 patients diagnosed with glioblastoma and their relatives. HRQoL (Short Form Health Survey, SF-36) and emotional well-being (hospital anxiety and depression scale, HADS) were analysed with descriptive, comparative and multivariable regression analyses., Results: Relatives scored worse for mental HRQoL (p < 0.001) and for symptoms of anxiety (p < 0.001) and depression (p = 0.022) compared to patients. The multivariable regression showed an increased risk of affected mental HRQoL in relatives of patients with poor functional status (WHO) (p = 0.01) and higher levels in symptoms of anxiety (p = 0.03), or when relatives had low physical HRQoL themselves (p = 0.01). There was increased risk of affected mental HRQoL in patients with comorbidities (p = 0.003), and when the respective relative showed higher levels in symptoms of anxiety (p = 0.005)., Conclusion: Relatives scored worse for mental HRQoL and emotional well-being than patients, suggesting that HRQoL in patients and relatives might be connected to symptoms of anxiety in the respective individual at disease onset. The results illustrate the need to screen HRQoL and emotional well-being in both patients and relatives from an early stage-before surgery.

Background: In a rural environment where distances and access to ambulance resources in people's immediate area are limited, other responders like firefighters dispatched to perform a first aid before ambulance arrives in areas where a longer response time exists; an assignment called 'While Waiting for the Ambulance' (WWFA). Knowledge is limited about the experience from a caller's perspective when a person has a life-threatening condition needing emergency help and both firefighters in a WWFA assignment and ambulance staff are involved., Aim: The aim of the study is to describe the emergency situation involving a WWFA assignment in a rural environment from the caller's perspective., Method: A descriptive design using qualitative methodology with a reflective lifeworld research (RLR) approach was used for this study, including in-depth interviews with eight callers., Results: An emergency situation involving WWFA assignment in a rural environment mean a sense of being lone and lonely with a vulnerability in while waiting to hand over responsibility for the affected person. Ambivalence in several dimensions arises with simultaneous and conflicting emotions. A tension between powerlessness and power of action where the throw between doubt and hope are abrupt with a simultaneous pendulum between being in a chaos and in a calm., Conclusion: A double ambivalence emerges between, on one hand feeling alone in the situation and having full control, on the other hand, with trust handing over the responsibility, thereby losing control. Contact with the emergency medical dispatcher becomes a saving lifeline to hold onto, and access to emergency help in the immediate area of WWFA is valuable and important. Trust and confidence are experienced when callers are met with empathy, regardless of personal acquaintance with arriving responders., (© 2019 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background: Post-intensive care syndrome-family is a common problem in relatives of patients who die in an intensive care unit. Family-centred end-of-life care with support for the family during and after the death is supposed to prevent suffering and avoid illness., Aims and Objectives: This study aimed to investigate family-centred end-of-life care and bereavement follow-up services offered to family members of patients who die in Swedish intensive care units., Design, Methods: A cross-sectional study using a 16-question survey based on family-centred end-of-life care was sent to all 81 adult intensive care units. Data were analysed by descriptive statistics and chi-square. Respondents were able to add individual comments to the questionnaire., Results: Although the majority (76.7%) offered some kind of follow up, this service was not always offered. Modes for invitation, timing, and contents in the follow up varied between the units. The staff tried to individualize the follow-up service according to the family's needs. Nurses and social workers were the only professionals who provided follow-up conversations on their own. Most of the intensive care units (97.3%) kept diaries that were handed over to the family when they left the unit after the patient's death or at a follow-up visit. Only 8.8% reported that they always offer the family the opportunity to be present during resuscitation. Most respondents reported that patients (60.6%) died in a private room., Conclusions: Family-centred end-of-life care varied among the intensive care units, and some families were not offered any follow up at all. Timing, invitation, and elements in the follow up differ between the units. Diaries were commonly kept and usually given to the family. Few units offered the family to be present during resuscitation., Relevance to Clinical Practice: There is a need for national guidelines to ensure that all bereaved families receive equal and individual family-centred end-of-life care., (© 2019 British Association of Critical Care Nurses.)

Background: Family members' participation in care is internationally advocated as a way to improve patient outcomes admitted to the intensive care unit (ICU)., Objective: to provide an overview of current understandings about family participation in the care of older adult patients admitted to ICU., Design, Data Sources, and Methods: The Arksey and O'Malley's framework for scoping review was used. We searched PubMed, CINAHL, EmBase, Scopus, and Cochrane from their inception until 10 October 2019 to answer this question: What are the dimensions, prerequisites, facilitators, barriers, and consequences of family member's participation in the care of older adult patient admitted to ICU?, Results: Of 3410 search results, 33 articles were included (10 descriptive; 3 interventional or quality improvement project; 12 qualitative; 5 reviews; 1 expert opinion; 1 evidence-practice recommendation and 1 clinical guideline). The included studies were conducted internationally (n = 7), USA (n = 8), Canada (n = 3), France (n = 2), Britannia, Australia (n = 6), (n = 2), and Sweden (n = 5). No article from Asian and African countries was retrieved. The supporting level of evidence for most studies (28 out of 33) was low., Conclusions: This review showed that family members could participate in the provision of physical and non-physical care (emotional, mental, cognitive, and psychosocial) to older adult patients admitted to ICU. Their participation in ICU care has the potential to improve the physical, emotional, psychological and psychological outcomes of older adult patients and their family members as well as reduce the burden of the healthcare system. The barriers were grouped into patient-related factors, ICU staff-related factors, family-related factors, and ICU setting-related factors. In addition, several facilitators of participation in ICU care were discussed., The Implication for Future Research: This review showed a lack of experimental studies on the effectiveness of family members' participation in ICU care for the patient, family, and care system. This provides an opportunity for future research to develop and test interventions based on the multiple dimensions described in this paper., Competing Interests: Declaration of Competing Interest The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.

Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care., Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6-19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation., Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8-12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family., Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience., Trial Registration: ClinicalTrials.gov, Identifier NCT03119545, retrospectively registered 18 April 2017.

Aim: The aim of this study was to explore family members' perceptions of assisted bodily care in a nursing home., Background: Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses., Design: This study has a qualitative design with a phenomenographic approach., Methods: Data were collected through semi-structured interviews (n = 13) with family members of older people who were aged > 80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method., Results: Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older person's self-determination, practically supported by assistant nurses, and complemented by family members., Conclusions: In the family members' perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons' need for self-determination and need for help, and, further, between their trust in the assistant nurses' skills and their own perceived inadequacies in intimate assisted bodily care., Implications for Practice: Policies that address the family members' role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members' perceptions of their situation and learn from them., (© 2019 John Wiley & Sons Ltd.)

Background: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life., Aim: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home., Methods: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process., Findings: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships., Conclusion: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law., (© 2019 Nordic College of Caring Science.)

Aim: To describe family members' experiences of living with persons with neuropsychiatric symptoms (NPS) related to frontotemporal dementia (FTD)., Background: The majority of persons with dementia during the disease trajectory develop NPS. Persons with FTD are likely to develop greater levels of NPS than persons with other types of dementias. Research-based knowledge regarding family members' experiences of living with persons with FTD and NPS is limited., Methods: Nine family members of persons with FTD were interviewed. Interviews commenced with completion of the Neuropsychiatric Inventory (NPI). Upon completion of the NPI, questions were posed from an interview guide where study participants provided in-depth information about NPS identified. Interview data were analysed using qualitative content analysis., Results: Interviewed family members highlighted that persons with FTD had developed between four and eight co-existing NPS. Irritability and disinhibition were the most common NPS, with variations in severity, frequency and distress. From the interview data, two themes emerged: Living with a well-known stranger and Coping and overstepping social norms., Conclusions: Living with a well-known stranger depicted a new co-existence with a loved one with changes in personality and behaviour, which were not inherent to the person or predictable any more. The presence of NPS can threaten the safety of the person with FTD and their family in real world and on social media. Support offered should focus on the person's physical and psychological needs, not on a diagnosis., Implications for Practice: From a health care perspective it is important to see the person with FTD and their family as unique individuals with specific needs., (© 2019 John Wiley & Sons Ltd.)

We seek to identify factors that facilitate or inhibit transmission of drug abuse (DA) from high-risk parents to their children. In 44,250 offspring of these parents, ascertained from a Swedish national sample for having a mother and/or father with DA, we explored, using Cox models, how the prevalence of DA was predicted by potentially malleable risk factors in these high-risk parents, their spouses and the rearing environment they provided. Analyses of offspring of discordant high-risk siblings and offspring of discordant sibling-in-laws and step-parents aided causal inference. Risk for DA in the children was associated with high-risk and married-in parental externalizing psychopathology, a range of other features of these parents (e.g., low education and receipt of welfare), and aspects of the rearing environment (e.g., neighborhood deprivation and number of nearby drug dealers). Offspring of discordant high-risk siblings, siblings-in-laws and step-parents suggested that nearly all these associations were partly causal. A multivariate analysis utilizing offspring of discordant high-risk siblings identified the six most significant potentially malleable risk factors for offspring DA: (1) criminal behavior (CB) in married-in parent, (2) community peer deviance, (3) broken family, (4) DA in high-risk parent, (5) CB in high-risk parent and (6) number of family moves. Children in the lowest decile of risk had a 50% reduction in their DA prevalence, similar to that seen in the general population. We conclude that transmission of DA from high-risk parents to children partly results from a range of potentially malleable risk factors that could serve as foci for intervention.

Objectives: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample., Methods: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden., Results: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61)., Significance of Results: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.

Background: Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes., Objective: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes., Methods: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis., Results: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances)., Conclusion: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention., Trial Registration: The KUPA project has Clinical Trials number NCT02708498., Competing Interests: The authors have declared that no competing interests exist.

Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results : Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative's safety net. A percieved inability to improve their loved one's well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions : By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient's experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

Background: The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care., Methods: This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes., Results: The next of kin's experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple'slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person's vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin., Conclusions: The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person's health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin., Trial Registration: NCT02708498, 15 March 2016.

Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described., Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT., Intervention/methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis., Results: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement., Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential., Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Objective: The aim of this study was to explore the nature, potential usefulness and meaning of complaints lodged by patients and their relatives., Design: A retrospective, descriptive design was used., Setting: The study was based on a sample of formal patient complaints made through a patient complaint reporting system for publicly funded healthcare services in Sweden., Participants: A systematic random sample of 170 patient complaints was yielded from a total of 5689 patient complaints made in a Swedish county in 2015., Main Outcome Measure: Themes emerging from patient complaints analysed using a qualitative thematic method., Results: The patient complaints reported patients' or their relatives' experiences of disadvantages and problems faced when seeking healthcare services. The meanings of the complaints reflected six themes regarding access to healthcare services, continuity and follow-up, incidents and patient harm, communication, attitudes and approaches, and healthcare options pursued against the patient's wishes., Conclusions: The patient complaints analysed in this study clearly indicate a number of specific areas that commonly give rise to dissatisfaction; however, the key findings point to the significance of patients' exposure and vulnerability. The findings suggest that communication needs to be improved overall and that patient vulnerability could be successfully reduced with a strong interpersonal focus. Prerequisites for meeting patients' needs include accounting for patients' preferences and views both at the individual and organizational levels., (© The Author(s) 2018. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: It has been recognised that more evidence about important aspects of family members' sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members' sense of security during palliative care, and iii) to evaluate if family members' sense of security during ongoing palliative care predicts well-being during bereavement., Methods: Between September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patient's death (70%). They answered a single question regarding the family members' sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link)., Results: Sixteen variables were positively related to family members' sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members' mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members' perceived quality of life. Moreover, the family members' sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patient's death, e.g. psychological well-being, complicated grief symptoms, health related quality of life., Conclusions: The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

Objective: The determinants of increased psychosis risk among immigrants remain unclear. Given ethnic density may be protective, we investigated whether the presence of immediate family, or "family networks", at time of immigration was associated with risk of non-affective psychosis., Methods: We followed a cohort of migrants (n = 838,717) to Sweden, born 1968-1997, from their 14 th birthday, or earliest immigration thereafter, until diagnosis of non-affective psychosis (ICD-9/ICD-10), emigration, death, or 2011. Using record linkage, we measured family network as the presence of adult first-degree relatives immigrating with the cohort participant or already residing in Sweden. We used Cox proportional hazards regression to examine whether risk varied between those migrating with family, migrating to join family, or migrating alone., Results: Migrating with immediate family was associated with increased psychosis risk amongst males compared to males who did not migrate with family (adjusted Hazard Ratio [aHR]: 1.16, 95% CI: 1.00-1.34). Migrating with family did not increase risk among females (aHR: 0.91, 95% CI: 0.78-1.07); similar observations were observed for males who immigrated to join family (aHR: 1.35, 95% CI: 1.21-1.51). In contrast, females who migrated alone were at increased risk compared to females who did not migrate alone (aHR: 1.31, 95% CI: 1.11-1.54)., Conclusion: Family networks at the time of immigration were associated with differential patterns of non-affective psychotic disorders for males and females. These results suggest sex-specific differences in the perceived role of family networks during the migration process., (Copyright © 2019 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Being involved in the care of a loved one is a desire of many next of kin. However, according to several studies of the perceptions of nursing home staff, the involvement of next of kin is not an obvious part of care. To be able to involve next of kin in care at nursing homes, the perceptions of what participation means are an important piece of knowledge. The aim of this study was therefore to describe variations in next of kin's perceptions of the meaning of participation in the care of older persons living in nursing homes., Methods: Eighteen next of kin of older persons living in ten nursing homes in Sweden were recruited for interviews. The study design was based on a phenomenographic approach, focusing on the qualitatively different ways in which a person perceives, experiences or conceptualises a phenomenon or certain aspect of reality., Results: Five categories emerged from analysis of the interviews, representing the next of kin's perceptions of the meaning of participation in the care of older persons in nursing homes: be present; communicate; monitor; do practical tasks; and to represent. The next of kin expressed meanings that belonged to more than one category, and the categories were interdependent., Conclusions: Our results indicate that there are several meanings of next of kin's perceptions of participation at nursing homes. Nursing home staff's knowledge of these perceptions is important to enable next of kin to participate according to their own preferences., (© 2019 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background: Most studies underline the contribution of heritable factors for psychiatric disorders. However, heritability estimates depend on the population under study, diagnostic instruments, and study designs that each has its inherent assumptions, strengths, and biases. We aim to test the homogeneity in heritability estimates between two powerful, and state of the art study designs for eight psychiatric disorders., Methods: We assessed heritability based on data of Swedish siblings (N = 4 408 646 full and maternal half-siblings), and based on summary data of eight samples with measured genotypes (N = 125 533 cases and 208 215 controls). All data were based on standard diagnostic criteria. Eight psychiatric disorders were studied: (1) alcohol dependence (AD), (2) anorexia nervosa, (3) attention deficit/hyperactivity disorder (ADHD), (4) autism spectrum disorder, (5) bipolar disorder, (6) major depressive disorder, (7) obsessive-compulsive disorder (OCD), and (8) schizophrenia., Results: Heritability estimates from sibling data varied from 0.30 for Major Depression to 0.80 for ADHD. The estimates based on the measured genotypes were lower, ranging from 0.10 for AD to 0.28 for OCD, but were significant, and correlated positively (0.19) with national sibling-based estimates. When removing OCD from the data the correlation increased to 0.50., Conclusions: Given the unique character of each study design, the convergent findings for these eight psychiatric conditions suggest that heritability estimates are robust across different methods. The findings also highlight large differences in genetic and environmental influences between psychiatric disorders, providing future directions for etiological psychiatric research.

Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.

Background: The aim was to use a theoretical framework developed by Bronfenbrenner in order to investigate if the association between school connectedness and family climate at age 16 and mental health symptoms at age 43 is mediated by social and professional establishment at age 30., Methods: Data were drawn from The Northern Swedish Cohort, a prospective population-based cohort. The present study included 506 women and 577 men who responded to questionnaires at age 16 (in year 1981), age 30 (in 1995) and age 43 (in 2008). Mediation was tested by fitting structural equation models (SEM) and estimating direct effects between proximal processes (school connectedness and family climate) and symptoms of depression and anxiety respectively, and indirect effects via social and professional establishment (professional activity, educational level, and civil status)., Results: The standardised estimate for the direct path from school connectedness to depression was -0.147 (p = .000) and the indirect effect mediated by professional activity -0.017 (p = .011) and by civil status -0.020 (p = .002). The standardised direct effect between school connectedness and anxiety was -0.147 (p = .000) and the indirect effect mediated by civil status -0.018 (p = .005). Family climate was not significantly associated with the outcomes or mediators., Limitations: Self-reported data; mental health measures not diagnostic; closed cohort; intelligence, personality and home situation before age 16 not accounted for., Conclusions: Professional and social establishment in early adulthood appear to partially mediate the association between adolescent school connectedness and mental health symptoms in middle-age., (Copyright © 2018. Published by Elsevier B.V.)

Objective: The purpose of this study was to determine whether, controlling for genetic effects, drug abuse was transmitted within families as predicted by a contagion model., Methods: The authors examined 65,006 parent-offspring, sibling, and cousin pairs ascertained from Swedish population registries in which the primary case subject had a drug abuse registration. The rate of drug abuse registration among at-risk secondary case subjects ages 19-23 was studied. Utilizing matched control pairs, a difference-in-difference approach was used to infer causal effects., Results: In offspring, risk for drug abuse registration in the 3 years after an index registration of a parent residing in the same household, neighborhood, or municipality increased 5.9%, 3.4%, and 1.8%, respectively. For siblings of sibling index case subjects, parallel results were 5.9%, 3.9%, and 1.2%. For cousins of cousin index case subjects, excess risk for those in the same neighborhood or municipality was 2.9% and 0.9%, respectively. In all sets of relatives, drug abuse transmission was strongest in male-male pairs and in pairs closest in age. In sibling pairs, stronger transmission was observed in older to younger siblings compared with younger to older siblings. Transmission was stronger within than across the two drug classes with sufficient data (opiates and cannabis)., Conclusions: These results suggest that drug abuse can be transmitted within families by an environmentally mediated temporally defined model of contagion. The most important methodological limitation is that drug abuse registration is an inaccurate measure of the onset of drug abuse. Indeed, as predicted, drug abuse risk increased among potential secondary case subjects in the year before drug abuse registration of the index case subject.

Background: Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies., Objective: This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams., Methods: Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis., Results: We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into illness experiences, and (4) readiness to engage appears critical for clinic implementation., Conclusions: A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes., (©Stuart W Grande, Meghan R Longacre, Karin Palmblad, Meera V Montan, Rikard P Berquist, Andreas Hager, Greg Kotzbauer. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 22.02.2019.)

Background: After intensive care unit treatment, patients often have prolonged impairments that affect their physical, cognitive and mental health. Family members can face overwhelming and emotionally challenging situations and their concerns and needs must be addressed., Objective: We investigated the outcomes of pilot randomised control trial, a nurse-led family intervention, Health Promoting Conversations, which focused on family functioning and wellbeing in families with a critically ill member., Study Design: This randomised controlled pilot study used a pre-test, post-test design with intervention and control groups to investigate the outcomes of the nurse-led intervention in 17 families., Outcome Measures: The Health Promoting Conversations intervention was evaluated using validated instruments that measure family functioning and family wellbeing: the General Functioning sub-scale from the McMaster Family Assessment Device; the Family Sense of Coherence, the Herth Hope Index, and the Medical Outcome Short-Form Health Survey. Descriptive and analytical statistical methods were used to analyse the data., Results: After 12 months, the intervention group reported better family functioning than the control group. The intervention group also had better social functioning and mental health after 12 months., Conclusion: This intervention may improve family wellbeing by improving family function, reducing stress, and promoting better mental health., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Objective: Although oncology social workers (OSWs) have emerged as a core profession in the provision of psychosocial services, there is a lack of empirical studies that describe their daily clinical work with next of kin (NOK). The overall aim of this study was to explore NOK's motives for consulting an OSW. This can provide us with insights into what types of skills OSWs need to have in order to fulfil their duties., Methods: From a nationwide survey, we used data from 54 NOK cases that Swedish OSWs met face to face., Results: About half of the motives concerned help in dealing with personal grief connected to the patients' cancer and distressing symptoms, while the other half concerned needs for help in dealing with the position of being the NOK, relationship conflicts, and assistance with socio-economic issues., Conclusions: The motives show that NOK does not just ask for help to come to terms with distress related to the patient's situation. Based on the diversity of motives, we suggest that OSWs (at least in Sweden) need a broad education in counselling psychology. Furthermore, health care personnel need to be attentive to the NOK's own voice and not reduce it to the voice of the patient and the patient's needs in referrals., (© 2018 John Wiley & Sons, Ltd.)

Background: Family-witnessed resuscitation (FWR) offers the option for family to be present during a cardiac arrest, which has been proven to help them in their grieving process. International guidelines highlight the importance of FWR, but this has not yet been widely implemented in clinical practice in Europe., Aim: Explore nurses' and physicians' experiences and attitudes toward FWR in cardiac care units., Methods: Cross-sectional web-based multicentre survey study including the seven university hospitals in Sweden, with 189 participants., Results: The most common concern was that the resuscitation team may say things that are upsetting to the family member during resuscitation, with 68% agreeing with this statement. Physicians opposed FWR more strongly than nurses (3.22 vs. 2.93, p < .001). Twenty-five percent stated that family should not be present during resuscitation, as it would be far too painful for them, while 23% of the nurses and 11% of the physicians considered that FWR is beneficial to the patient, p < 0.001. There was strong agreement that there should always be a healthcare professional dedicated to take care of family (92%). None of the hospitals had local guidelines regarding FWR., Conclusion: Many concerns still exist in relation to FWR, suggesting that those barriers must be taken into consideration when planning for implementation of FWR in everyday practice., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Objectives: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member., Methods: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording., Results: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable., Significance of Results: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations., (© 2017 Nordic College of Caring Science.)

Background: Applying the Process-Person-Context-Time (PPCT) model of the bioecological theory, this study considers whether proximal processes between the individual and the microsystem (social relationships within family, peer group and school) during adolescence are associated with heavy episodic drinking (HED), from youth to midlife, and whether the macro level context (country) plays a role in these associations., Methods: Participants of two prospective cohort studies from Finland and Sweden, recruited in 1983/1981 at age 16 (n = 2194/1080), were followed-up until their forties using postal questionnaires. Logistic regression analysis was used to examine associations between social relationships at age 16 and HED (at least monthly intoxication or having six or more units of alcohol in one occasion) at ages 22/21, 32/30 and 42/43. Additive interactions between microsystem settings, as well as between settings and country, were also considered., Results: Consistent with the PPCT model, we found individual, contextual and temporal aspects to be associated with drinking habits. Higher levels of poor family relationships were associated with an increased likelihood of HED (ages 22/21 and 32/30) in both Finnish women and men and Swedish men. Higher levels of peer contact were associated with an increased likelihood of HED in both Finnish women (ages 32 and 42) and men (ages 22 and 32), and Swedish men (age 21). In contrast with the other groups, poorer relationships with classmates were associated with an increased likelihood of HED (age 30) for Swedish women only. For women, the combined effect of having both daily peer contact and living in Finland for HED at age 42/43 was statistically distinguishable from a pure additive effect., Conclusions: Micro and to a lesser extent macro level contexts are associated with heavy episodic drinking well into adulthood. The most relevant processes in the adolescent microsystem occur in family and peer settings. However, long-lasting protective or risk-raising effects between different settings and later HED were not found. Promoting good relationships across different contexts during adolescence may reduce the incidence of HED in adulthood.