[Palliative care in paediatric oncology - a national parental perspective]. / Palliativ vård av barn med cancer.

The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.

The self-help app My Grief: Bereaved parents' experiences of helpfulness, satisfaction and usability.

Mobile health (mHealth) apps have been shown to be useful to monitor and reduce mental health problems across a variety of stress-related and affective disorders, yet research on the value of apps for prolonged grief is scarce. Therefore, the main aim of this study was to elucidate bereaved parents' experiences of using the self-help app My Grief with a focus on helpfulness, satisfaction, and usability. Data were derived from closed-ended and open-ended questions administered at the 3-month post-assessment of the intervention group (n = 67) within a randomized controlled trial testing the effects of access to the My Grief app. The sample consisted of 88 % women, with a mean age of 47 years, who predominantly lost their child to cancer (41 %), on average 4.8 years ago. Participating parents indicated that the My Grief app helped them increase their knowledge about prolonged grief and track their grief over time. The app was experienced as easy to navigate and around half of the parents used the app more than one day a week. Almost all parents were satisfied with the app and would recommend it to other parents in similar situations. The findings add to the knowledge base justifying mHealth within support systems for bereaved adults.

Support interventions to reduce psychological distress in families experiencing stillbirth in high income countries: A systematic review.

BACKGROUND: Previous research indicates disparities in the care of bereaved parents and siblings following a stillbirth in the family. The aim of this systematic review was to assess the effects of interventions aimed at reducing psychological distress among parents or siblings in high-income countries after experiencing a stillbirth. METHODS: The databases CINAHL, Medline, PsycInfo, Cochrane Library, and EMBASE were searched in August 2022. RESULTS: Four intervention studies from the United States (US), the United Kingdom (UK), Finland, and Australia, met the inclusion criteria. The interventions comprised a perinatal grief support team; a perinatal counselling service; a grief support program; and a support package including contacts with peer supporters and health care staff. No studies of interventions for siblings were found. The results could not be synthesised due to disparities in interventions and outcome measures. The risk of bias was assessed as high in all four studies and the certainty for all outcomes was rated as very low. CONCLUSION: More controlled trials with rigorous methods are needed to evaluate the effect of bereavement support interventions in parents and siblings after stillbirth. Future studies should include a core outcome set to make them more comparable. Most of the studies in this review were assessed to have an overall high risk of bias, mainly due to problems with missing outcome data; thus, future studies could specifically target this problem.

Surviving COVID-19: patients' experiences of care and path to recovery.

PURPOSE: To examine patients' experiences of receiving care on an ICU for COVID-19 and the subsequent rehabilitation process. METHODS: An explorative and inductive design was used. Participants were recruited from two university hospitals in Sweden. Patients admitted to the ICU due to COVID-19 from March 2020 to April 2021, who enrolled in the ICU follow-up, and understood and spoke Swedish were invited to participate. In total, 20 participants completed a semi-structured interview, of whom 18 were included in the thematic analysis. RESULTS: The analysis resulted in two themes: "An isolated world with silver linings" and "Recovery in the wake of the pandemic". Findings show that patients cared for on an ICU for COVID-19 during the pandemic felt safe but experienced a sense of vulnerability. After discharge, physical rehabilitation was a slow process with frustrating day-to-day fluctuations. Mentally, participants felt isolated, fatigued, and emotionally sensitive. Patients reported that love and support from family and friends were crucial for the recovery process. CONCLUSIONS: This study highlights the challenges of recovering from COVID-19, emphasizing the importance of continued support from health care, public services, family and friends. It provides important insights into patients' experiences and can inform future healthcare strategies and policies.

Psychometric evaluation of the Swedish Traumatic Grief Inventory Self-Report Plus (TGI-SR+) in bereaved parents.

The International Classification of Diseases Eleventh Edition (ICD-11), and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR), now include prolonged grief disorder (PGD). Since criteria for PGD in both classification systems differ from prior proposed grief disorders and each other, the validation of a single instrument to screen for prolonged grief (PG) symptoms of both new diagnoses is critical for bereavement research and care. Therefore, we evaluated the psychometric properties of the Swedish version of the Traumatic Grief Inventory Self-Report Plus (TGI-SR+). Two-hundred and forty-eight bereaved parents completed questions about sociodemographic and loss-related variables, the TGI-SR+, and symptom measures of post-traumatic stress (PTS), depression and an older measure of PG symptoms, the Prolonged Grief Disorder-13 (PG-13). Confirmatory factor analyses showed that a one-factor model best fit DSM-5-TR and ICD-11 PG symptoms and the analyses of the internal consistency and inter-item correlations showed that these symptoms could be reliably assessed. In support of convergent validity, DSM-5-TR and ICD-11 PG symptoms correlated with symptoms of PTS, depression and PG assessed with the PG-13. In support of known-groups validity, DSM-5-TR and ICD-11 PG symptoms were higher among lower educated (vs. higher educated) participants and related negatively to time since loss. ROC analyses showed optimal cut-off score of ≥71 and ≥72 to determine probable caseness for DSM-5-TR and ICD-11 PGD, respectively. Results support the reliability and validity of the Swedish TGI-SR+ as a screening instrument for PG in research and bereavement care.

Care and support when a baby is stillborn: A systematic review and an interpretive meta-synthesis of qualitative studies in high-income countries.

INTRODUCTION: Approximately 2 million babies are stillborn annually worldwide, most in low- and middle-income countries. Present review studies of the parental and healthcare providers' experiences of stillbirth often include a variety of settings, which may skew the findings as the available resources can vary considerably. In high-income countries, the prevalence of stillbirth is low, and support programs are often initiated immediately when a baby with no signs of life is detected. There is limited knowledge about what matters to parents, siblings, and healthcare providers when a baby is stillborn in high-income countries. OBJECTIVES: This systematic review and interpretive meta-synthesis aim to identify important aspects of care and support for parents, siblings, and healthcare professionals in high-income countries from the diagnosis of stillbirth throughout the birth and postpartum period. METHODS: A systematic review and qualitative meta-synthesis were conducted to gain a deeper and broader understanding of the available knowledge about treatment and support when stillbirth occurred. Relevant papers were identified by systematically searching international electronic databases and citation tracking. The quality of the included studies was assessed, and the data was interpreted and synthesised using Gadamer's hermeneutics. The review protocol, including qualitative and quantitative study approaches, was registered on PROSPERO (CRD42022306655). RESULTS: Sixteen studies were identified and included in the qualitative meta-synthesis. Experiences of care and support were interpreted and identified as four fusions. First, Personification is of central importance and stresses the need to acknowledge the baby as a unique person. The parents became parents even though their baby was born dead: The staff should also be recognised as the individuals they are with their personal histories. Second, the personification is reinforced by a respectful attitude where the parents are confirmed in their grief; the baby is treated the same way a live baby would be. Healthcare professionals need enough time to process their experiences before caring for other families giving birth. Third, Existential issues about life and death become intensely tangible for everyone involved, and they often feel lonely and vulnerable. Healthcare professionals also reflect on the thin line between life and death and often question their performance, especially when lacking collegial and organisational support. Finally, the fusion Stigmatisation focused on how parents, siblings, and healthcare professionals experienced stigma expressed as a sense of loneliness, vulnerability, and being deviant and marginalised when a baby died before or during birth. GRADE CERQual ratings for the four fusions ranged from moderate to high confidence. CONCLUSIONS: The profound experiences synthesised in the fusions of this meta-synthesis showed the complex impacts the birth of a baby with no signs of life had on everyone involved. These fusions can be addressed and supported by applying person-centred care to all individuals involved. Hence, grief may be facilitated for parents and siblings, and healthcare professionals may be provided with good conditions in their professional practice. Furthermore, continuing education and support to healthcare professionals may facilitate them to provide compassionate care and support to affected parents and siblings. The fusions should also be considered when implementing national recommendations, guidelines, and clinical practice.

Longitudinal follow-up of the randomized controlled trial of access to the trauma-focused self-management app PTSD Coach.

Apps that target posttraumatic stress are rarely evaluated and long-term examination of symptom change is rare. In a waitlist-controlled randomized controlled trial, we found that the Swedish version of the self-management app PTSD Coach confers benefits on posttraumatic stress and depressive symptoms after three months use. Here, we aimed to evaluate between-group effects on functional disability as well as within-group changes on mental health, somatic illness and functional disability after access to the Swedish PTSD Coach app during 9 months. In addition, we described negative effects, helpfulness and satisfaction with the app. Among the 179 trauma-exposed adults (92 % women) randomized to instant access or delayed access to PTSD Coach, symptoms of posttraumatic stress, depression, somatic illness and functional disability decreased and were maintained within 3 to 9 months of app access. Posttraumatic stress continued to improve during follow-up. PTSD Coach was considered slightly to moderately helpful and satisfactory and 43 % reported any negative effect related to using the app. PTSD Coach is an effective self-management intervention for trauma-related distress. Future research should investigate mechanisms of change, as well as individual characteristics that predict symptom reduction after access to PTSD Coach in order to inform clinical practice.

Correction: Efficacy, Benefits, and Harms of a Self-management App in a Swedish Trauma-Exposed Community Sample (PTSD Coach): Randomized Controlled Trial.

[This corrects the article DOI: 10.2196/31419.].

Losing a child to adolescent cancer: A register-based cohort study of psychotropic medication use in bereaved parents.

PURPOSE: To investigate the short- and long-term risk of psychotropic medication use in parents who lose a child to cancer diagnosed in adolescence. METHODS: This is a Swedish nationwide register-based study including 184 bereaved mothers and 184 bereaved fathers of 184 children diagnosed with cancer in adolescence. Logistic regression analyses, adjusted for sociodemographic characteristics and history of mental health problems, were performed to estimate risk of a prescription of psychotropic medication (anxiolytics, hypnotics/sedatives, antidepressants) in cancer-bereaved parents from 1 year before to 5 years after the child's death, with a general population sample of non-bereaved parents (n = 3291) as referents. RESULTS: At the year of the child's death, 28%-36% of mothers and 11%-20% of fathers had a prescription of anxiolytics, hypnotics/sedatives or antidepressants. The corresponding percentages for non-bereaved mothers and fathers were 7%-12% and 4%-7%, respectively. Compared to non-bereaved mothers, bereaved mothers showed higher odds of prescriptions from 1 year before up to four (anxiolytics) and 5 years (hypnotics/sedatives and antidepressants) after the child's death. Bereaved fathers showed higher odds than non-bereaved fathers of prescriptions from 1 year before up to the year of (anxiolytics and hypnotics/sedatives) and 1 year after (antidepressants) the child's death. No differences in odds between bereaved and non-bereaved fathers were found at 2 years after the child's death. Being unmarried, born outside Sweden, and having a history of mental health problems were associated with higher odds of prescribed medications. CONCLUSIONS: Indicative of mental health problems of clinical importance, cancer-bereaved parents had a higher prevalence of use of psychotropic medication. A decrease in medication use was evident with time, but still at 5 years after the child's death mothers displayed a higher use while fathers showed no difference to non-bereaved fathers after 2 years.

Communication about diagnosis and prognosis-A population-based survey among bereaved parents in pediatric oncology.

INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals. OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable. METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness. RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87% of children received diagnostic information and 44% of the children received prognostic information. CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed.

My Grief App for Prolonged Grief in Bereaved Parents: A Pilot Study.

The death of a child is a devastating experience for most parents. Consequently, bereaved parents are at risk to develop physical and mental health problems, including prolonged grief disorder. Nevertheless, there is a lack of evaluated psychosocial interventions for bereaved parents. The primary aim of this study was to examine the feasibility of the My Grief app for bereaved parents. The secondary aim was to evaluate the potential reduction of symptoms of prolonged grief, depression and post-traumatic stress, and cognitive-behavioral processes proposed to prolong grief reactions. The study was a mixed-method open trial design, using pre- and post-intervention surveys and post-intervention interviews. Thirteen parents had access to the app for 4 weeks, eight parents participated in interviews and 10 parents answered the follow-up survey. The study provided evidence for the app's feasibility and acceptability, with participants reporting satisfaction with the app and stating that they would recommend it to parents in similar situations. According to the participants, the app was easy to use, the content gave a feeling of not being alone or weird in how one grieves, and the app gave a valuable overview of information, knowledge and further support. In addition, all parents expressed that an app like My Grief is needed and would be particularly useful to access early in the grieving process. Significant reductions of prolonged grief symptoms (d within = 0.86) and grief-related rumination (d within = 0.72), loss avoidance (d within = 0.95) and negative cognitions (d within = 1.36) from pre- to post-assessment were found. In conclusion, the app appears acceptable and feasible to use and will be evaluated in a larger randomized controlled trial (Trial registration number: NCT04552717, https://clinicaltrials.gov/ct2/show/NCT04552717).

Efficacy, Benefits, and Harms of a Self-management App in a Swedish Trauma-Exposed Community Sample (PTSD Coach): Randomized Controlled Trial.

BACKGROUND: Self-guided interventions may complement and overcome obstacles to in-person treatment options. The efficacy of app interventions targeting posttraumatic stress disorder (PTSD) is unclear, and results from previous studies on PTSD Coach-an app for managing trauma-related distress-are inconsistent. OBJECTIVE: This study investigates whether access to the Swedish version of the PTSD Coach affects posttraumatic stress, depressive, and somatic symptoms. In addition, we aim to assess the perceived helpfulness, satisfaction, negative effects, response, and remission related to PTSD Coach. METHODS: Adults who had experienced potentially traumatic events in the past 2 years were randomized (1:1) to have access to PTSD Coach (n=89) or be on the waitlist (n=90). We assessed clinical characteristics at baseline (semistructured interviews and self-rating scales) and after 3 months (self-rating scales). We analyzed the data in R software using linear mixed effects models, chi-square tests, and Fisher exact test. RESULTS: Intention-to-treat analyses indicated that access to PTSD Coach decreased posttraumatic stress and depressive symptoms but not somatic symptoms. More participants who had access to PTSD Coach responded with clinically significant improvement and fewer instances of probable PTSD after 3 months compared with waitlist controls. Overall, participants found that PTSD Coach was slightly to moderately helpful and moderately satisfactory. Half of the intervention group (36/71, 51%) reported at least one negative reaction related to using PTSD Coach (eg, disappointment with the app or its results, arousal of stress, or distressing memories). CONCLUSIONS: Using PTSD Coach may trigger symptoms among a few users; however, most of them perceived PTSD Coach as helpful and satisfactory. This study showed that having access to PTSD Coach helped improve psychological trauma-related symptoms. In addition, we have discussed implications for future research and clinical practice. TRIAL REGISTRATION: ClinicalTrials.gov NCT04094922; https://clinicaltrials.gov/ct2/show/NCT04094922.

Daily uplifts during the COVID-19 pandemic: what is considered helpful in everyday life?

BACKGROUND: Knowledge of what is uplifting and helpful during pandemics could inform the design of sustainable pandemic recommendations in the future. We have explored individuals' views on helpful and uplifting aspects of everyday life during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: Participants answered a brief, daily survey via text messages during 14 consecutive days in July-August, 2020. The survey included the question: "During the past 24 hours, is there anything that has made you feel good or helped you in your life?" We used content analysis to compile responses from 693 participants, who provided 4,490 free-text answers, which resulted in 24 categories subsumed under 7 themes. RESULTS: Positive aspects during the COVID-19 pandemic primarily related to social interactions, in real life or digitally, with family, friends and others. Other important aspects concerning work, colleagues and maintaining everyday life routines. One theme concerning vacations, going on excursions and being in nature. Leisure and recreation activities, such as hobbies and physical exercise, also emerged as important, as did health-related factors. Bodily sensations, thoughts, feelings and activities that benefited well-being were mentioned frequently. Lastly, people commented on the government strategies for containing COVID-19, and whether to comply with restrictions. CONCLUSIONS: To summarize, daily uplifts and helpful aspects of everyday life centered around social relationships. To comply with recommendations on physical distancing, people found creative ways to maintain social connections both digitally and face-to-face. Social interaction, maintenance of everyday life routines, hobbies and physical activity appeared to be important for well-being.

End-of-Life-Related Factors Associated with Posttraumatic Stress and Prolonged Grief in Parentally Bereaved Adolescents.

Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.

Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study.

The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.

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

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

Outcomes of the grief and communication family support intervention on parent and child psychological health and communication.

Parents and children risk developing psychological health problems following the death of a partner/parent and may need professional support. This study used the reliable change criterion and clinically significant change to examine the outcomes of the Grief and Communication Family Support Intervention, comprising three family meetings with a family therapist, among 10 parents and 14 children, using pre-post outcome scores. The results provided preliminary evidence that the Grief and Communication Family Support Intervention may improve self-esteem and reduce anxiety in some parents and may improve communication and reduce internalizing and externalizing problems in some children.

The grief and communication family support intervention: Intervention fidelity, participant experiences, and potential outcomes.

This study aimed to evaluate intervention fidelity and explore participants' experiences and potential outcomes after participating in the intervention. Using a pretest post-test pilot study, 10 parentally bereaved families completed the three-session manual-based intervention with a family therapist. Sessions were audio-recorded. Therapists completed an adherence checklist to assess fidelity. Assessments via questionnaires and interviews occurred at one month post-intervention and via questionnaires at baseline and six months post-intervention. This study showed a high level of fidelity. The study shows preliminary evidence of the intervention's capacity to improve communication and relationships in parentally bereaved families.

Mobile app for prolonged grief among bereaved parents: study protocol for a randomised controlled trial.

INTRODUCTION: Bereaved parents, who have lost a child, have an elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive-behavioural therapy (CBT), both face to face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, called My Grief, in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users' experiences and adverse events of My Grief. METHODS AND ANALYSIS: We will conduct a two-armed randomised waitlist-controlled trial. Parents living in Sweden, who lost a child between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content of My Grief covers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effective PTSD Coach app. Participants in the intervention group will fill out online questionnaires at baseline and at 3, 6 and 12 months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are post-traumatic stress and depression symptoms, quality of life and cognitive behavioural variables (ie, avoidance, rumination, negative cognitions). ETHICS AND DISSEMINATION: Ethical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents. TRIAL REGISTRATION NUMBER: NCT04552717.