Losing a parent to suicide: Posttraumatic stress, sense of coherence and family functioning in children, adolescents and remaining parents before attending a grief support program.

Parental suicide in childhood increases the risk of mental ill-health, substance use and premature mortality, particularly through suicide. Postvention supports tailored to the well-being and functioning of suicide-bereaved children and their remaining parents are thus of critical importance to counteract negative development. This explorative cross-sectional study seeks clinically relevant knowledge by investigating posttraumatic stress (PTS), sense of coherence (SOC) and family functioning among children (n = 22), adolescents (n = 18) and parents (n = 40) before their attendance at a family-based grief support program. The results demonstrate critical health outcomes for children and parents, and in particular for adolescents. Clinically relevant symptoms of PTS were found in 36% of children, 65% of adolescents, and 37% of parents. All groups showed lower SOC than the norm. Adolescents reported dysfunctional family functioning for the dimensions Communication and Affective Responsiveness. Psychoeducational and trauma-informed support is recommended where family communication and meaning construction of suicide is given special attention.

Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood.

This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5-8 months after the loss and at a 6-month follow-up, about 14-18 months after the loss. The result shows that the young adults experienced posttraumatic growth, mostly in the domains Personal strength and Appreciation of life. Posttraumatic growth was associated with bereavement outcomes, especially life satisfaction, a feeling of meaning in future life and psychological health. The result is of value for health care professionals as it adds information about the importance of supporting constructive rumination to enhance the possibility to positive psychological change after a parent's death.

Facilitators and barriers to return to work and meet financial needs in parents of children with cancer.

BACKGROUND: The aim of this study was to explore what facilitators and barriers parents of children with cancer identify for their ability to return to work and meet financial needs. PROCEDURE: Nine focus groups (21 mothers; 11 fathers) were performed across Sweden in 2015 and 2019. A deductive content analysis approach was used. A preconstructed matrix consisting of 12 codes based on previous literature was used to organize the data. The codes were grouped into subcategories, which were abstracted to four generic categories. RESULTS: Facilitators for a return to work were covered in the category "Flexibility and understanding from employers and social services," and barriers in the category "Pressure to return without consideration of the consequences." Facilitators to meeting financial needs were covered in the category "Available public, private, and employer support," and barriers in the category "Lack of organized and efficient support from employers and social services." CONCLUSIONS: The identified barriers suggest that there is room for improvement in the provision of psychosocial support, which relates to a perceived lack of organized support regarding practical, financial, and occupational matters. The results show a need for a coordinated support system that includes major stakeholders, such as the health care, welfare agencies, and employers. Moreover, employers should consider how to implement more workplace flexibility and involvement of occupational health services. Importantly, to be able to return to work and achieve a sustainable financial situation, it is necessary for all stakeholders to recognize the long-term impact of parenting a child with cancer.

Poor Psychosocial Well-Being in the First Year-and-a-Half After Losing a Parent to Cancer - A Longitudinal Study Among Young Adults Participating in Support Groups.

The purpose of this study was to investigate variations in psychosocial well-being over time among young adults who participated in a support group after the death of a parent from cancer. Fifty-five young adults, aged 16-28 years, completed questionnaires that measured self-esteem, anxiety, depression, and life satisfaction at three time-points during the first year-and-one-half after the loss. Results indicated overall poor psychosocial well-being with few increases in psychological health over the study period, despite access to support and social networks. However, these resources may help to prevent major impairments in the participants' future lives.

Trusted and doubted: Discourses of parenting training in two Swedish official inquiries, 1947 and 2008.

AIM: The aim of this study was to analyse discourses of parenting training in official inquires in Sweden that explicitly deal with the bringing up of children and parental education and how the representations of the problems and their solutions affect parental subject positions in the early welfare state and at the onset of the 21st century. METHOD: We carried out a discourse analysis of two public inquiries of 1947 and 2008, drawing on theories about governmentality and power regimes. Tools from political discourse analysis were used to investigate the objectives of political discourse practices. RESULTS: Both inquiries referred to a context of change and new life demands as a problem. Concerning suggestions for solutions, there were discrepancies in parents' estimated need of expert knowledge and in descriptions of parental capacity. In a discourse of trust and doubt, the parents in 1947 were positioned as trusted welfare partners and secure raisers of future generations, and in 2008, as doubted adults, feared to be faltering in their child-rearing tasks. CONCLUSIONS: The analysis revealed how governmental problem descriptions, reasoning about causes and suggestions of solutions influenced parents' subject positions in a discourse of trust and doubt, and made way for governmental interventions with universal parenting training in the 21st century.

Psychosocial Well-Being of Young People Who Participated in a Support Group Following the Loss of a Parent to Cancer.

Despite the evidence of unmet support needs among young people who have lost a parent to cancer, only a few support group initiatives have been reported. This observational prospective study explored the psychosocial well-being of young people who participated in support groups at a Swedish specialist palliative care setting. On three occasions, 29 participants, aged 16-28 years, answered questionnaires covering characteristics of the participants, circumstances of the losses, psychosocial well-being of the young people, and their own assessment of the support groups. The support groups attracted mostly young women who were often unprepared for the loss. The living arrangements differed between younger and older participants; however, the loss-related variables did not differ. Significant positive changes were found regarding a sense of meaning in their future life and life satisfaction. The helpfulness of the group was assessed as high/very high and the group brought a valuable fellowship with others in a similar situation. Universality and beneficial interactions were reported and strengthened psychosocial well-being developed over time. This change, according to the young people themselves, may be attributed to the group support. The findings are useful for planning interventions to support young people in bereavement in order to enhance their psychosocial well-being.

Different Aspects of Psychological Ill Health in a National Sample of Swedish Parents after Successful Paediatric Stem Cell Transplantation.

BACKGROUND: Paediatric hematopoietic stem cell transplantation (HSCT) may have great psychological impact on parents during the intense treatment period as well as many years after a successful transplantation. Since different psychological disorders require different interventions, a differentiation of general distress into specific types of psychological ill health is essential. The aim of this descriptive study was to distinguish anxiety, depression, and burnout, and investigate occurrence and co-occurrence of these in a national Swedish sample of parents of children who had undergone HSCT and survived. PROCEDURE: Established self-report instruments (Hospital Anxiety and Depression Scale, posttraumatic stress checklist, and Shirom-Melamed Burnout Questionnaire) were used to assess parents' subjective suffering. INCLUSION CRITERIA: the child had to be alive; ≤18 years of age; >6 months since HSCT. RESULTS: Four hundred twenty-one eligible parents (220 mothers and 201 fathers) were identified, of whom 284 choose to participate (response rate 67%). In total, 134 parents (87 mothers, 47 fathers) reported clinically relevant levels of one or more of the assessed types of psychological ill health, representing 48% of the responding participants and 32% of the entire national population of parents of children who had undergone HSCT and survived. Anxiety and/or burnout were reported most frequently. A majority reported more than one type of psychological ill health. Depression only was rare. CONCLUSIONS: The findings underscore the importance of recognizing-in research as well as in clinical practice-that different types of psychological ill health may affect parents after successful HSCT. When parents present with psychological suffering, a referral for qualified assessment is warranted to obtain the proper treatment.

Associations between lower urinary tract dysfunction and health-related quality of life in children with chronic kidney disease.

AIM: Little is known about the health-related quality of life (HRQoL) of children with lower urinary tract dysfunction (LUTD) and chronic kidney disease (CKD). We investigated LUTD and other possible predictors of impaired HRQoL in children with conservatively treated moderate-to-severe CKD or with a kidney transplant. METHODS: All 64 children with CKD or a kidney transplant treated at Karolinska University Hospital, Stockholm, Sweden, between June 2011 and December 2012 were approached and 59 children aged 8-18 were enrolled in the study. Lower urinary tract function was evaluated with voiding history, frequency and volume chart, uroflowmetry and postvoid ultrasound measurements. Self-reported HRQoL was assessed with validated generic instruments. RESULTS: The HRQoL of the study cohort was as good as the general paediatric population, apart from the physical and psychological well-being dimensions, and was no different to children with other chronic conditions. Urinary incontinence, but not LUTD in general, was associated with impaired HRQoL, as was having a kidney transplant and being female in some dimensions. CONCLUSION: LUTD was common in children with CKD or a kidney transplant but did not affect their general HRQoL. Predictors of impaired HRQoL included incontinence, having had a kidney transplant and being female.

Patterns of psychological responses in parents of children that underwent stem cell transplantation.

OBJECTIVE: Hematopoietic stem cell transplantation (HSCT) is curative in several life-threatening pediatric diseases but may affect children and their families inducing depression, anxiety, burnout symptoms, and post-traumatic stress symptoms, as well as post-traumatic growth (PTG). The aim of this study was to investigate the co-occurrence of different aspects of such responses in parents of children that had undergone HSCT. METHODS: Questionnaires were completed by 260 parents (146 mothers and 114 fathers) 11-198 months after HSCT: the Hospital Anxiety and Depression Scale, the Shirom-Melamed Burnout Questionnaire, the post-traumatic stress disorders checklist, civilian version, and the PTG inventory. Additional variables were also investigated: perceived support, time elapsed since HSCT, job stress, partner-relationship satisfaction, trauma appraisal, and the child's health problems. A hierarchical cluster analysis and a k-means cluster analysis were used to identify patterns of psychological responses. RESULTS: Four clusters of parents with different psychological responses were identified. One cluster (n = 40) significantly differed from the other groups and reported levels of depression, anxiety, burnout symptoms, and post-traumatic stress symptoms above the cut-off. In contrast, another cluster (n = 66) reported higher levels of PTG than the other groups did. CONCLUSIONS: This study shows a subgroup of parents maintaining high levels of several aspects of distress years after HSCT. Differences between clusters might be explained by differences in perceived support, the child's health problems, job stress, and partner-relationship satisfaction.

Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation.

A few studies have indicated that parents' reactions to a child's serious disease may entail long-term stress for the parents. However, further knowledge of its consequences is valuable. The aim of the study was to investigate the occurrence of burnout in a Swedish national sample of parents of children who had undergone HSCT and survived. Burnout (Shirom-Melamed Burnout Questionnaire) and estimations of the child's health status (Lansky/Karnofsky estimations and study-specific questions) were self-reported by 159 mothers and 123 fathers. In addition, physicians made estimations of the child's health status (Lansky/Karnofsky estimations). Nonparametric tests revealed that burnout symptoms occurred more often among fathers of children who had undergone transplantation within the last five yr compared to fathers of children with no history of serious disease (34.4% vs. 19.9%). Burnout among mothers and fathers was associated with the child's number and severity of health impairments up to five yr after the child underwent HSCT (Spearman's rho for mothers 0.26-0.36 and for fathers 0.36-0.61). In conclusion, chronic stress in parents after a child's HSCT seems to abate eventually. However, parents should be monitored and offered adequate support when needed. Moreover, the situation of fathers in the often mother-dominated pediatric setting should receive more attention in research as well as in the clinic.

Barns upplevelser av en intervention i familjer där vuxna har ett problematiskt bruk av alkohol och droger.

Aim: To investigate children's experiences of the intervention Me and my Family. Me and my Family is an intervention, for families with parental substance use problems (SUP) provided by Swedish social services outpatient care, includes eight weekly sessions where family members communicate how the SUP affects the family. Method: Data consists of 17 qualitative interviews with children, 7 to 19 years old. The qualitative data were analysed using a thematic approach, initially inductively and then discussed by adding salutogenic perspective. Results: The results are presented in three themes. Regardless of the children's varying ages, the results indicate that participating in the intervention has helped the family break the taboo surrounding parental substance use and enabled the young participants to communicate with their family members differently. The intervention also contributed to stronger bonds between children and their parents.

The distorted memories of patients treated in the intensive care unit during the COVID-19 pandemic: A qualitative study.

BACKGROUND: During the COVID-19 pandemic, patients cared for in the intensive care unit were exposed to many risk factors for developing delirium and subsequent distorted memories. Further, seeing healthcare professionals who have been dressed in personal protective equipment and face masks could have affected the patients' memories. Therefore, the aim of this study was to explore memories and how they are experienced and managed by former patients who have been treated for COVID-19 in an intensive care unit. METHODS: Sixteen former patients treated for COVID-19 at a large emergency hospital in Sweden were interviewed 3-8 months after discharge from the intensive care unit. The data were interpreted using thematic analysis. The Consolidated Criteria for Reporting Qualitative Research checklist was followed in the reporting of the study. FINDINGS: Participants' descriptions of their memories of treatment in the intensive care unit for COVID-19 generated three themes: 'Distorted truth' the content in the memories which implied facing death in an unreal distorted environment. 'Captive,' was the experience and feelings linked to memories with a feeling of being exposed and alone, and 'Coping with memories' explained how participants managed the implications of the memories using a mixture of strategies. CONCLUSIONS: For former patients who were admitted to an intensive care unit after a diagnosis of COVID-19, memories caused considerable distress, which were similar to other intensive care patients experiences, before the pandemic. Emotion-focused and problem-focused strategies could be used to cope with these memories. Healthcare professionals wearing protective equipment gave the patient a distant feeling, but more important was to be treated with attention/care and respect. IMPLICATIONS FOR CLINICAL PRACTICE: Awareness of the impact of distorted memories on patients who are severely ill and their needs and strategies to cope with these memories can form the basis for early interventions that promotes well-being during care and recovery. Healthcare professionals have an important task to inform patients and their family members about the existence of distorted memories, and talk about the patients' experience of them, to facilitate their recovery.

Shifting focus: A grounded theory of how family members to critically ill patients manage their situation.

OBJECTIVES: Critical illness is a life-threatening condition for the patient, which affects their family members as a traumatic experience. Well-known long-term consequences include impact on mental health and health-related quality of life. This study aims to develop a grounded theory to explain pattern of behaviours in family members of critically ill patients cared for in an intensive care unit, addressing the period from when the patient becomes critically ill until recovery at home. RESEARCH METHODOLOGY/DESIGN: We used a classic grounded theory to explore the main concern for family members of intensive care patients. Fourteen interviews and seven observations with a total of 21 participants were analysed. Data were collected from February 2019 to June 2021. SETTING: Three general intensive care units in Sweden, consisting of a university hospital and two county hospitals. FINDINGS: The theory Shifting focus explains how family members' main concern, living on hold, is managed. This theory involves different strategies: decoding, sheltering and emotional processing. The theory has three different outcomes: adjusting focus, emotional resigning or remaining in focus. CONCLUSION: Family members could stand in the shadow of the patients' critical illness and needs. This emotional adversity is processed through shifting focus from one's own needs and well-being to the patient's survival, needs and well-being. This theory can raise awareness of how family members of critically ill patients manage the process from critical illness until return to everyday life at home. Future research focusing on family members' need for support and information, to reduce stress in everyday life, is needed. IMPLICATIONS FOR CLINICAL PRACTICE: Healthcare professionals should support family members in shifting focus by interaction, clear and honest communication, and through mediating hope.

Higher Self-Esteem Associated With Less Symptoms of Anxiety and Depression Among Young Adults After the Loss of a Parent to Cancer-A Longitudinal Study.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

The socioeconomic and psychosocial circumstances of adult long-term survivors of hematopoietic stem cell transplantation in childhood.

Socioeconomic factors such as education, employment, financial circumstances, marital status, and psychological well-being were investigated in 51 Swedish adults (age 19-42) surviving for at least five yr following pediatric allogeneic SCT (age at SCT 1-16 yr) using items derived from a Living Condition Survey (ULF). Psychological well-being and cognitive faculties were measured by HAD and SWED-QUAL. Socioeconomic data and marital status were compared with a norm group matched for gender and age, derived from the Swedish national population registry. Most subjects function well and lead normal lives, and they are nevertheless more likely than the norm to encounter problems with establishing themselves on the labor market. The SCT group demonstrated a lower level of employment, and the likelihood of having a disability pension was higher than in the normal population. Younger subjects and women encountered most financial difficulties and a higher risk of poverty. Cognitive difficulties intercorrelated both with inferior financial circumstances and with higher levels of anxiety and depression. These results indicate the importance of recognizing and attempting to tackle the possible cumulative disadvantage of problems that affect the adult following SCT in childhood.

Stabilizing life: A grounded theory of surviving critical illness.

OBJECTIVES: The experience of critical illness among patients is both complex and multifaceted. It can make patients vulnerable to long-term consequences such as impairment in cognition, mental health and physical functional ability which affects health related quality of life. This study aims to explore patients' patterns of behaviour during the process from becoming critical ill to recovery at home. DESIGN: We used a classic grounded theory methodology to explore the main concern for intensive care patients. Thirteen participants were interviewed and seven different participants were observed. SETTING: Three general intensive care units in Sweden, consisting of a university hospital, a county hospital and a district hospital. FINDINGS: The theory Stabilizing life explains how patients' main concern, being out of control, can be resolved. This theory involves two processes, recapturing life and recoding life, and one underlying strategy, emotional balancing that is used during the whole process. CONCLUSION: The process from becoming critically ill until recovery home is perceived as a constant fight in actions and mind to achieve control and stabilize life. This theory can form the basis for further qualitative and quantitative research about interventions that promotes wellbeing during the whole process.

"Now we have to cope with the rest of our lives". Existential issues related to parenting a child surviving a brain tumour.

AIM: The aim of the paper was to explore the existential issues expressed by parents of children who had been treated for brain tumours. BACKGROUND: A brain tumour in childhood is an event that triggers acute traumatic stress and it has long-term consequences for the child as well as for the parents. Due to advanced treatment techniques, more children survive brain tumours today. However, for most survivors a brain tumour is associated with sequelae and uncertainty about the future. METHOD: Eleven parents of seven children successfully treated for brain tumours were interviewed in 2006. The semi-structured interviews were conducted by two licensed psychologists. The Inductive Thematic method was used to analyse the data. FINDINGS: Consequences of a perceived threat, uncertainty and loss were described in terms of grief and sadness, loneliness, changes in the conditions for parenting, and changed views regarding identity and meaning. A traumatic experience is typically followed by an existential crisis, i.e. a process of restoring the person's assumptive world. As summarized by one parent: "Now we have to cope with the rest of our lives". The statement can be seen as a metaphor for the reconstruction of everyday life - a new picture including the child's disease and its sequelae, as well as the uncertainty about what the future might be like. CONCLUSION: The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

'A life on hold': adolescents' experiences of stem cell transplantation in a long-term perspective.

Stem cell transplantation is one of the treatment methods for cancer in children and adolescents which has resulted in a positive outcome. Unfortunately this method of treatment brings with it a number of late effects such as short stature, cognitive effects and infertility. However, a majority of children and adolescents experience a good quality of life. By examining their medical records this study has gained a deeper understanding of the situation for the minority of young people who describe themselves as suffering severe mental distress which they relate to their illness and treatment. The population comprised seven adolescents who sought psychotherapeutic support several years after treatment. They describe how they are affected by the feeling of being different, the loss of contact with friends and their dependence on parents. The study points to the need for long-term psychosocial support for children and adolescents who have undergone stem cell transplantation.

What do people agree to when stating willingness to donate? On the medical interventions enabling organ donation after death.

PURPOSE OF THE STUDY: The purpose of this study is to explore donor relatives' experiences of the medical interventions enabling organ donation, as well as to examine the donor relatives' attitudes towards donating their own organs, and whether or not their experiences have influenced their own inclination to donate. METHODS: The experiences of donor relatives were explored via in-depth interviews. The interviews covered every step from the deceased family member being struck by a severe bleeding in the brain till after the organ recovery, including the medical interventions enabling organ donation. The interviews were analysed through qualitative and quantitative content analysis. RESULTS: Brain death and organ donation proved to be hard to understand for many donor relatives. The prolonged interventions provided after death in order to enable organ donation misled some relatives to believe that their family member still was alive. In general, the understanding for what treatment aimed at saving the family member and what interventions aimed at maintaining organ viability was low. However, most donor relatives were either inspired to, or reinforced in their willingness to, donate their own organs after having experienced the loss of a family member who donated organs. CONCLUSIONS: There is a need for greater transparency regarding the whole chain of events during the donation process. Yet, having experienced the donation process closely did not discourage the donor relatives from donating their own organs-but rather inspired a willingness to donate. This indicates an acceptance of the medical procedures necessary in order to enable organ donation after death.