A role for event centrality in prolonged grief disorder.

Having a traumatic or negative event at the centre of one's identity is associated with adverse psychological outcomes including post-traumatic stress, depression, and prolonged grief disorder (PGD). However, direct investigation of the role of centrality of a bereavement-event in the maintenance of PGD symptoms is scarce and has not compared immediate and long-term changes in event centrality nor examined the nature of the loss. Data from bereaved partners and adult children in The Aarhus Bereavement Study at four time points over 26 months post-loss were included in this study. Participants completed a PGD symptom measure and the Centrality of Events Scale (CES) on each occasion. Results suggest that bereaved partners had higher PGD and CES scores than bereaved adult children at all four post-bereavement time points. Regardless of relationship type, maintaining higher CES scores over time predicted PGD symptoms, over and above initial symptoms. Our findings suggest a risk factor for maintaining PGD symptoms is the continued centrality of the bereavement to ones' life story and autobiographical memory. This finding links the mechanisms for maintaining PGD symptoms to those involved in other disorders such as post-traumatic stress, with implications for theoretical models of prolonged grief as well as treatment.

Qualitative study on health self-management of patients with metabolic syndrome among bereaved population after earthquake.

The study explore the influencing factors and healthy self-management of MS patients with bereaved relatives after Wenchuan and Yushu Earthquake of their real life; explore difficulties and challenges in the process of self-management; and supply information that could not be sought in quantitative studies. Purposive sampling was used to recruit 36 MS patients who are bereavement population in two earthquakes, and those patients met the inclusion criteria for semi-structured focus group interview. The Nvivo11 software was used to collate and analyze the transcribed data. The main influencing factors of health self-management behavior for MS patients are as follows: the degree of understanding of disease prevention knowledge, emotion management induced by earthquake trauma, the source of disease-related information, access and identification are very limited; ethnic traditional culture, religious beliefs, and production activities and routines before and after the earthquake is an important factor in their healthy self-management behavior. The lack of health beliefs and self-efficacy of MS patients among bereaved families after Wenchuan and Yushu earthquake are key obstacle in their self-management. The overall level of the knowledge of patients' MS prevention, self-efficacy and self-management behaviors are still low. Some positive factors that can be changed including MS prevention knowledge, self-efficacy, social support, and family function. Some negative factors which can be improved afterwards, including negative coping style, traumatic life experiences from earthquake and smoking.

Neurocognition and academic achievement among bereaved children in the Generation R Cohort.

Childhood bereavement is an adverse event, yet children demonstrate considerable variability in health outcomes. Bereaved children are at risk of lower lifelong educational attainment, though the contribution of neurocognitive performance is yet to be investigated. Using data from the population-based Generation R Study wherein nearly 10,000 pregnant mothers were recruited between 2002 and 2006, we estimated the association of bereavement by age 10 years with four subtests of cognitive function and academic achievement at 13 years. Bereavement by 10 years of age was experienced by n = 796 (37.3%) of youth and was associated with a 1.12-point (SD = 0.55; p-value = 0.04) lower full-scale IQ at 13 years, which was mainly driven by lower matrix reasoning scores (ßadjusted = -0.27, SE = 0.11, p < 0.02). There were no differences in academic achievement or other subtests of neurocognitive function between bereaved and non-bereaved children. Secondary analyses adjusting for pre-bereavement nonverbal cognitive ability and mental health problems revealed an overall association between bereavement and subsequent full-scale IQ and matrix reasoning, but only among those youth whose caregivers reported that the loss had an emotional influence on the child. These novel findings leveraging prospective assessments in a population-based birth cohort highlight risk and resilience mechanisms warranting further research.

"I couldn't say goodbye": Thematic analysis of interviews with bereaved relatives who lost their loved ones during the COVID-19 pandemic.

BACKGROUND: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. AIMS: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. DESIGN: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. SETTING/PARTICIPANTS: Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. RESULTS: A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. CONCLUSIONS: Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process.

The Norwegian traumatic grief inventory-self report plus (TGI-SR+): a psychometric evaluation in traumatically bereaved people.

Background: Prolonged grief disorder (PGD) has been added to the ICD-11 and DSM-5-TR. The Traumatic Grief Inventory-Self Report Plus (TGI-SR+) assesses self-rated PGD intensity as defined in ICD-11 and DSM-5-TR. The TGI-SR + is available in multiple languages, but has not been validated yet in Norwegian.Objective: The aim of this study was to evaluate the psychometric properties of the Norwegian TGI-SR + .Method: Bereaved adults (N = 307) whose child or sibling died ≥6 months ago due to a sudden or violent loss completed the TGI-SR + and measures for posttraumatic stress, depression, and precursor PGD symptoms. We examined the factor structure and internal consistency of the ICD-11 and DSM-5-TR PGD items. Convergent validity and known-groups validity was evaluated. Probable PGD cases, pair-wise agreement between diagnostic scoring rules for both PGD criteria-sets, and cut-off scores were calculated.Results: The 1-factor model for ICD-11 and DSM-5-TR PGD showed the best fit and demonstrated good internal consistency. Convergent validity was supported by strong associations between summed ICD-11 and DSM-5-TR PGD scores and summed posttraumatic stress, depression, and precursor prolonged grief scores. Known-groups validity was supported by PGD intensity being related to educational level and time since loss. The perfect pair-wise agreement was reached using the ICD-11 and DSM-5-TR PGD diagnostic scoring rules. The optimal cut-off score for detecting probable PGD cases, when summing all TGI-SR + items, was ≥73.Conclusions: The Norwegian TGI-SR + seems a valid and reliable instrument to assess ICD-11 and DSM-5-TR PGD intensity after losing a child or sibling under traumatic circumstances.

The TGI-SR + is a self-report instrument assessing ICD-11 and DSM-5-TR prolonged grief disorder intensity.The Norwegian TGI-SR + seems to be a valid and reliable instrument to assess prolonged grief disorder intensity.Optimal cut-off for detecting probable prolonged grief disorder cases is ≥73 in this traumatically bereaved sample of parents and siblings.

Aftercare Provision for Bereaved Relatives Following Euthanasia or Physician-Assisted Suicide: A Cross-Sectional Questionnaire Study Among Physicians.

Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare. Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses. Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives' current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%). Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for "at risk" populations typically targeted by policies and guidelines.

Preliminary findings on the experiences of care for women who suffered early pregnancy losses during the COVID-19 pandemic: a qualitative study.

BACKGROUND: Women who suffer an early pregnancy loss require specific clinical care, aftercare, and ongoing support. In the UK, the clinical management of early pregnancy complications, including loss is provided mainly through specialist Early Pregnancy Assessment Units. The COVID-19 pandemic fundamentally changed the way in which maternity and gynaecological care was delivered, as health systems moved to rapidly reconfigure and re-organise services, aiming to reduce the risk and spread of SARS-CoV-2 infection. PUDDLES is an international collaboration investigating the pandemic's impact on care for people who suffered a perinatal bereavement. Presented here are initial qualitative findings undertaken with UK-based women who suffered early pregnancy losses during the pandemic, about how they navigated the healthcare system and its restrictions, and how they were supported. METHODS: In-keeping with a qualitative research design, in-depth semi-structured interviews were undertaken with an opportunity sample of women (N = 32) who suffered any early pregnancy loss during the COVID-19 pandemic. Data were analysed using a template analysis to understand women's access to services, care, and networks of support, during the pandemic following their pregnancy loss. The thematic template was based on findings from parents who had suffered a late-miscarriage, stillbirth, or neonatal death in the UK, during the pandemic. RESULTS: All women had experienced reconfigured maternity and early pregnancy services. Data supported themes of: 1) COVID-19 Restrictions as Impractical & Impersonal; 2) Alone, with Only Staff to Support Them; 3) Reduction in Service Provision Leading to Perceived Devaluation in Care; and 4) Seeking Their Own Support. Results suggest access to early pregnancy loss services was reduced and pandemic-related restrictions were often impractical (i.e., restrictions added to burden of accessing or receiving care). Women often reported being isolated and, concerningly, aspects of early pregnancy loss services were reported as sub-optimal. CONCLUSIONS: These findings provide important insight for the recovery and rebuilding of health services in the post-pandemic period and help us prepare for providing a higher standard of care in the future and through any other health system shocks. Conclusions made can inform future policy and planning to ensure best possible support for women who experience early pregnancy loss.

Prevalence and correlates of ICD-11-based prolonged grief disorder in a representative Slovakian sample of recently bereaved adults.

Background: Prolonged Grief Disorder (PGD) has recently been included in both the ICD-11 and DSM-5-TR diagnostic manuals. Studying its prevalence and correlates across cultures is vital for more effective identification, treatment, and prevention.Objective: This study aimed to examine prevalence rates of ICD-11-based PGD, in a representative Slovakian sample in response to deaths of loved ones occurring during the previous year. Further aims were to examine the factor structure of PGD symptoms and correlates of summed PGD item scores and PGD 'caseness'.Method: Self-reported data on PGD, depression, anxiety, alcohol use, and descriptive characteristics were gathered from a representative sample of the Slovak population (N = 319).Results: Data were gathered from N = 1853 people; 319 participants (17.2%) reported a loss in the past year. The prevalence of probable PGD among these bereaved participants was 1.99% for recent losses (<6 months, n = 151) and 7.75% for more distant losses (6-12 months, n = 130). The most frequently endorsed symptoms included longing/yearning for the deceased, sadness, denial/unrealness, and difficulty accepting the death. PGD symptoms had a unitary factor structure which was consistent for subsamples bereaved 1-5 and 6-12 months. The severity of PGD varied with kinship. Depression and anxiety, but not alcohol misuse, were associated with PGD severity and PGD caseness.Conclusions: These findings underscore that a significant group of people develop PGD between 6-12 months following a loss. This emphasises the need for targeted psychological interventions.

Prolonged Grief Disorder (PGD) is newly included in ICD-11 and knowledge about its prevalence and correlates in the general population is urgently needed.In a representative Slovakian sample (N = 1853), 319 people (17.2%) reported a loss during the past year; 7.75% of people, bereaved 6­12 months earlier, met criteria for ICD-11-based PGD.PGD severity and caseness were associated with kinship (but less strongly with other sociodemographic and loss characteristics) and with depression and anxiety (but less strongly with problematic alcohol use).At 6­12 months following loss, PGD seems fairly common in the general population and timely identification and mitigation of PGD is an important public health issue.

Self-compassion-based online group psychotherapy for bereavement-related grief: The COMPACT feasibility trial.

OBJECTIVE: This study aimed to examine the feasibility and effectiveness of online group psychotherapy focused on self-compassion for individuals experiencing bereavement-related grief. METHOD: This single-arm feasibility trial involved participants aged 18 years or older who had experienced bereavement at least 6 months prior the five-week intervention. Outcomes were measured at baseline, immediately post-intervention, and 4 and 12 weeks later. The primary endpoint was the percentage of participants who completed four out of five sessions; the pre-defined feasibility criterion was 70%. Secondary endpoints included measures of grief, depression, anxiety, self-compassion, and resilience. RESULTS: The program was conducted in three courses with 18, 26, and 16 participants, respectively. The primary endpoint was met for 83.1% of participants (54/65). Cohen's d effect sizes ([95% CI] 12 weeks vs. baseline) for grief, depression, anxiety, self-compassion, and resilience were - 0.25 [-0.52, 0.03], -0.64 [-0.94, -0.34], -0.48 [-0.77, -0.19], 0.50 [0.21, 0.79], and - 0.07 [-0.34, 0.21], respectively. CONCLUSIONS: Online group psychotherapy focused on self-compassion for individuals with bereavement-related grief is feasible and effective for addressing grief and psychological distress. Randomized controlled trials are warranted to confirm the intervention's efficacy. TRIAL REGISTRATION NUMBER: UMIN000048554, registered 2 August 2022.

Undergraduate midwifery students' experiential learning of perinatal bereavement care: A qualitative analysis.

BACKGROUND: It is widely acknowledged that midwives are essential in providing care for mothers experiencing perinatal death. However, midwifery students lack the knowledge and skills needed to deal with perinatal death, and. There is limited research on perinatal bereavement care training for midwifery students. AIM: To investigate undergraduate midwifery students' experiential learning of perinatal bereavement care and serve as a reference for future perinatal bereavement care teaching and training. DESIGN: Qualitative descriptive design. SETTING: University in Guangzhou, China. PARTICIPANTS: Undergraduate midwifery students at a university in Guangzhou, China. METHOD: This research was conducted at a university in Guangzhou, China. The participants were recruited using purposeful sampling. Semi-structured, in-depth interviews were conducted with 11 midwifery students who participated in perinatal bereavement care training from May to June 2023. The Colalizzi 7-step data analysis method was used for data analysis. RESULTS: From the data, five themes emerged: 1) immersive experience of perinatal bereavement care, 2) formation of perspectives on perinatal bereavement care, 3) clarification of the service boundaries and internalization of the professional service spirit, 4) emotional impact and coping strategies, and 5)) factors influencing practice optimization. CONCLUSIONS: Experiential learning is an effective teaching strategy. However, participants continued to feel unprepared to provide perinatal bereavement care. Implementing relevant training, disseminating perinatal bereavement care knowledge and skills, and enhancing the ability of midwifery students to manage and cope with the psychological impact of perinatal death are important.

Testing the distinctiveness of prolonged grief disorder from posttraumatic stress disorder and depression in large bereaved community samples.

BACKGROUND: This study sought to test the distinctiveness of symptoms of prolonged grief disorder (PGD) from posttraumatic stress disorder (PTSD) and depression. METHODS: Confirmatory factor analysis (CFA) and target exploratory factor analysis (EFA), were used to test the distinctiveness of PGD from PTSD and depression symptoms in a large sample of adults bereaved for at least six months (N = 1917). Identified factors were explored in relation to demographic (i.e., age, gender) and loss-related (i.e., time since bereavement, nature of death, relationship to deceased, age of deceased, and frequency of contact with deceased) correlates. RESULTS: The CFA model provided a good fit to the data, while the target EFA provided a slightly improved fit. All items loading strongly and significantly onto their respectively factors, and the IGQ items had few significant cross-factor loadings. All demographic and loss-related variables (except for death of a sibling and death from other causes) were associated with each of the factors, however, these associations were strongest for the PGD factor. LIMITATIONS: Participants were recruited using a non-probability sampling method and were from a relatively affluent Western nation. CONCLUSION: Findings from the current study demonstrate that PGD reflects an empirically distinguishable albeit related disorder to PTSD and depression in a sample of bereaved adults. The identification of correlates common to PGD, PTSD, and depression, as well as those unique to PGD, affords a comprehensive understanding of the risk factors associated with bereavement-related psychopathology.

Mother's Milk Donation to a Human Milk Bank During Bereavement: Circumstances Associated with Completing the Donation Process.

Background: Bereaved mothers describe positive experiences donating breast milk and negative experiences when not informed of opportunities to donate. Predictors of whether mothers donate milk are unknown, impairing efforts to optimize support in completing donation. Objective: To define circumstances associated with completing mother's milk (MM) donation during bereavement. Methods: A retrospective cohort study included dyads of bereaved mothers and their deceased children if a child's death occurred on-site at a quaternary care children's hospital during 2016-2020, the child had documentation of MM availability, and age at death <24 months. The primary outcome was the completion of MM donation to the milk bank. Multivariate logistic regression measured associations between clinical variables and odds of completion. Results: Of 124 deceased children with documented MM exposure, 34 mothers (28%) of 35 of those children completed MM donation, donating a mean of 13.7 liters (SD 16.8). The child's race/ethnicity documented in the medical record was White for 25 (71%), Black/African American (AA) for 1 (3%), Asian for 1 (3%), and Hispanic/Latino for 8 (23%). Referenced to mothers of White children, being a mother of an AA [OR 0.05 (95% CI: 0.01-0.43)] or Asian [0.08 (0.01-0.75)] child was associated with lower odds of donation. Referenced to mothers delivering full term (≥37 weeks'), mothers delivering <34 weeks showed higher odds [5.0 (1.5-17.5)] of donation. Conclusion: Relatively few bereaved mothers of children with indicators of MM exposure completed donation. The results suggest an opportunity to ensure bereaved mothers are uniformly informed and supported in donating.

Virtual Bereavement Support Program in a Children's Hospice Care Center During COVID-19 Pandemic and Beyond.

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the feedback of families who participated in the program following the death of a child or grandchild. Participants expressed high levels of satisfaction, indicating its potential as an effective approach for pediatric bereavement care beyond the pandemic.

A comprehensive investigation of comorbidities of prolonged grief disorder in a bereaved inpatient psychiatric sample.

Prolonged Grief Disorder (PGD) was recently added to ICD-11 and DSM-5-TR. Depression and Posttraumatic Stress Disorder (PTSD) are frequent comorbidities, but findings regarding comorbid somatoform disorder and personality disorders remain mixed and studies with severely impaired patients are scarce. It was therefore the objective of the present study to examine comorbidities of PGD in a bereaved inpatient psychiatric sample. We assessed N = 101 bereaved inpatients in a psychiatric hospital with clinical interviews and self-report questionnaires. We calculated differences between patients with and without a PGD-diagnosis in number and type of comorbid disorders as well as associations between the severity of PGD and comorbid disorders. On average, patients had 2.53 comorbid psychiatric diagnoses. Patients with and without a PGD-diagnosis did not differ in their number of comorbid diagnoses, and there was no association between number of comorbid diagnoses and PGD-severity. However, patients with PGD, had significantly more comorbid diagnoses belonging to neurotic-, stress-related and somatoform disorders of the ICD-10. Patients with PGDICD-11 also had significantly higher scores in self-reported depressive, PTSD-, and somatoform symptoms, as well as the negative affectivity personality domain than those without a PGD diagnosis. To the best of our knowledge, this is the first study to provide insights into comorbidities of PGD in a bereaved inpatient psychiatric sample. It highlights the importance of considering PGD symptoms as part of the complaints of bereaved patients to achieve a tailored treatment approach. Future longitudinal studies are needed to unveil relationships between pre-existing mental disorders and PGD.

Racial disparities in death of someone close during pregnancy: Findings from the Pregnancy Risk Assessment Monitoring System (PRAMS), 2017-2021.

PURPOSE: The COVID-19 pandemic increased the mortality rate in the U.S. and exposed many to the unexpected death of someone close. No prior research has assessed whether the COVID-19 pandemic was followed by an increase in bereavement during pregnancy, and whether patterns varied by race and ethnicity. METHODS: Using data from the Pregnancy Risk Assessment Monitoring System from 2017-2021 across 23 U.S. sites (N = 107,226), we assessed trends in the odds of experiencing the death of someone close before and after the onset of the COVID-19 pandemic. RESULTS: Findings revealed an increased percentage of women who reported having someone close to them die in the year prior to childbirth after the start of the COVID-19 pandemic (March 2020 or later) (aPR=1.121, 95 % CI (1.079 - 1.165). Analysis by mother's race and ethnicity showed death of someone close increased significantly after the COVID-19 pandemic for Hispanic (aPR = 1.192, 95 % CI = 1.062, 1.337), non-Hispanic Black (aPR = 1.115, 95 % CI = 1.015 - 1.225), and American Indian-Alaskan Native pregnant women (aPR = 1.391, 1.023 - 1.891) compared to White, Non-Hispanic pregnant women. CONCLUSIONS: Increased bereavement among pregnant women during the COVID-19 pandemic warrants routine grief screening and response training in prenatal care.

Assessing Pediatric Resident Needs in Grief and Bereavement Education.

CONTEXT: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. OBJECTIVES: This work aims to assess pediatric residents' needs and preferences for content included in a curriculum on grief and bereavement. METHODS: Pediatric residents, at a single institution, completed an electronic survey in Spring 2023 on how they cope with patient deaths and their preferences on content in a proposed grief and bereavement curriculum. RESULTS: The survey was emailed to 165 current or recent trainees; 71 surveys were fully completed (43% response rate). Most respondents (63/71, 89%) indicated that a formalized bereavement curriculum for pediatric residents is important. The resources most frequently utilized by residents following a pediatric death included peer support (59/71, 83%), attending a debrief coordinated by residency leadership or the supportive care division (38/71, 54%), and reading a patient's obituary (23/71, 32%). The most desired content areas were institutional services provided to bereaved families (66/71, 93%), unique aspects of healthcare professional grief (58/71, 82%), and experiences of bereaved families hearing from providers after their child's death (56/71, 79%). CONCLUSION: Pediatric residents indicate a strong desire for structured curricula on grief and bereavement focusing on resources that exist for families, approaches to grieving as a healthcare professional, and better understanding the experiences of bereaved families. These data may inform educators on priorities in training and support of pediatric residents on grief and bereavement.

Implementation of a hospital-based end-of-life and bereavement care program in a latin American middle-income country. A source of light and compassion in the midst of cloudy times.

BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. METHODS: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. RESULTS: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. CONCLUSIONS: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.

Development of a self-management mobile app for bereaved adolescents: evaluating patient and public involvement.

Background: Losing a family member during childhood is a potentially traumatic event and increases the risk of mental health difficulties. Adolescents have the right to express their views in research of relevance to them, but few studies have involved bereaved adolescents as collaborators (i.e. Patient and Public Involvement (PPI)). Furthermore, to ensure meaningful and non-tokenistic involvement, bereaved adolescents' levels of participation and experiences of taking part in research need to be evaluated.Objectives: The aim was to describe and evaluate a PPI process working with bereaved adolescents to develop a self-management mobile app for adolescents in grief.Methods: The PPI process consisted of four workshops during which the app's logo, colours, name, content, and layout were discussed with six parentally bereaved adolescents aged 13-18 years. The adolescents were recruited through a non-profit organisation providing support for adolescents in grief. The PPI process was documented and evaluated using participant observations and an online survey completed by the adolescents, covering the themes of social context, participation, and influence.Results: The adolescents perceived the social context as comfortable and inclusive, where their knowledge was valued. Their participation was characterised by ownership and motivated by a desire to help others with similar experiences. The adolescents' ability to participate in PPI activities was assisted by the researchers' flexibility, although challenging assignments may have made participation harder. Throughout PPI activities, adolescents contributed with relevant input and reported feeling influential. The study reached the intended levels of participation and appeared to adequately fulfil the adolescents' right to participation.Conclusions: Engaging adolescents who have undergone a potentially traumatic event, such as the loss of a family member, in research can enhance the overall relevance of the study. Moreover, it can entail a meaningful and positive experience for the participating adolescents, while also fulfilling their fundamental right to participation.

A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.