OBJECTIVE:While there has been increasing attention on caring for children following a parent's cancer diagnosis or death, few studies include scalable evidence-based interventions to facilitate adjustment. The aim of this review was to summarize recent empirical studies that included interventions for minor children (0-18 years) with clear pre- and post-assessments of the child's psychological functioning from the time a parent is diagnosed with cancer through bereavement. METHODS:Two separate systematic reviews were conducted for interventions during either a parent's illness or bereavement. We searched Ovid Medline, PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Sociological Abstracts, and Social Services Abstracts for articles published in 2015 and beyond. RESULTS:For the first review, 113 articles were reviewed at the full-text level. Of those, 11 met study inclusion criteria. All were published between 2015-2023 and the sample size ranged from 16-176, including 534 children in total, aged 4-18 years. Thirteen validated measures were used. For the second review, 49 articles were reviewed at the full text level, and only one met criteria. This study, published in 2023, included 20 children aged 7-12 years. Two validated measures were used. Quality assessment indicated a generally low risk of bias and high methodological quality for both reviews. CONCLUSIONS:Evidence-based interventions for minor children whose parents have been diagnosed with cancer or who are bereaved during childhood are limited. To standardize and move the field forward, we propose a model to guide the development of interventions for children whose parents have been diagnosed with cancer through bereavement.

Outcomes1. List 5 mental health competencies in which they already have expertise.2. Identify 2 potential sources for further learning when a physician has a relative lack of expertise in a mental health competency (i.e. a licensed clinical social worker on their existing clinical team, journal articles in the palliative medicine or mental health literature, a consult-liaison psychiatrist with shared patient populations, etc).Key MessageHospice and palliative medicine physicians aim to support patients’ whole-person quality of life, but our training emphasizes physical symptoms. We used an expert panel to develop primary mental health competencies for palliative care physicians, which will undergo iterative rounds of voting from a larger stakeholder cohort for prioritization.Introduction/ContextPsychological and psychiatric care is a core domain of palliative care. Palliative care clinicians manage common psychological and psychiatric symptoms and use concepts from mental health in serious illness communication. Despite growing interest in the mental health aspects of palliative care, recent data demonstrate that training in mental health for hospice and palliative medicine (HPM) physician fellows is variable. Few guidelines exist to define scope of practice and educational goals. The lack of operationalized criteria to guide training of HPM physicians is a barrier to upskilling the HPM workforce and meeting the mental health needs of patients with serious illness.ObjectiveTo delineate preliminary HPM physician competencies in the psychological and psychiatric aspects of palliative care.MethodsWe used a purposive sampling strategy to convene a cohort of interdisciplinary experts in various domains of mental health and palliative care including experts in palliative care social work, psychology, bereavement, geriatric psychiatry, psycho-oncology, addiction medicine, and medical education. Our expert panel collaboratively created a framework and proposed competencies, which were then iteratively refined by the first and senior authors (LP, DS) through individual meetings with each group member.ResultsLeveraging the input of the expert panel, an organizational framework was developed. Competencies were organized into (A) psychological foundations of serious illness (18 competencies and sub-competencies), (B) diagnosis and management of mental health disorders in serious illness (44 competencies and sub-competencies), and (C) systems-based practice (8 competencies and sub-competencies). These proposed competencies will undergo vetting by a larger stakeholder cohort to identify those deemed most important.ConclusionWe present initial HPM physician competencies in psychological and psychiatric care, a highly significant but under-delineated domain of HPM practice. These competencies will undergo further vetting to identify priorities for developing educational content and to help define scope of practice.KeywordsWorkforce / Career Development / Scientific Research

Background Oncology nurses frequently contend with intense work-related emotions stemming from their roles, which include bearing witness to suffering, managing end-of-life care, and navigating ethical dilemmas. These emotional challenges can lead to burnout, compassion fatigue, and overall psychological distress. Objective To determine the feasibility, acceptability, and preliminary effect of implementing Storytelling Through Music (STM) online with oncology nurses. Intervention/Methods This study (trial registration: NCT04775524) was a 2-group, randomized wait-list controlled trial, utilizing quantitative and qualitative methods. STM is a 6-week intervention that combines storytelling, reflective writing, songwriting, and psychoeducation. Data were collected in both groups at 3 timepoints and analyzed with descriptive statistics, conventional content analysis, and nonparametric tests. Results The oncology nurses (n = 24) were primarily female (96%) and White (79%), with an average of 15.98 (range, 2-51) years of nursing experience. All STM participants completed the intervention and found it acceptable. STM participants had greater improvements in burnout, secondary traumatic stress, anxiety, depression, and posttraumatic growth. Conclusion The online delivery of STM proved feasible and acceptable, demonstrating potential scalability across diverse geographic locations, and showed promise in reducing psychological distress and burnout. Future research should consider larger-scale studies with diverse participant demographics and settings to validate these findings further. Implications for Practice Results highlight the potential value of integrating expressive arts into comprehensive support programs for nurses. By implementing interventions that acknowledge and support the emotional demands of their work, healthcare organizations can better equip oncology nurses to navigate the complexities of their roles while maintaining their well-being.

Purpose: There is limited research addressing the bereavement needs of parents whose young adult (YA) children have died from cancer. Research within oncology about the impact of child loss has tended to focus on parents of pediatric aged children. We adapted a general bereavement support group curriculum used with adults to address the unique needs of bereaved parents of YAs. Methods: Using a quality improvement framework, 25 bereaved parents of YA children participated in one of three 6-session bereavement support group programs during 2020 and 2021. Due to the coronavirus disease 2019 (COVID-19) pandemic, the programs were offered virtually. The participants provided feedback and completed an evaluation. Results: Nineteen mothers and six fathers participated with 20 (80%) completing the evaluation. The median time since the death of their child was 6 months. The participants evaluated the program highly, reporting that they felt less isolated (4.25/5 on a 5-point Likert scale); that their concerns were similar to others (4.45/5); and the discussion topics were relevant (4.20/5). Other topics that were identified included the impact on the family of losing a YA child, and how other relationships change. Forty-five percent of participants expressed a preference for a hybrid delivery model, incorporating in-person and virtual sessions. The majority also wished to continue meeting monthly, given they had little contact with other bereaved parents of YAs. Conclusion: The general bereavement support group curriculum was readily adapted for use with bereaved parents of YA children who died from cancer. A hybrid delivery model was the preferred method for future groups.

Outcomes1. Participants will be able to demonstrate knowledge about the gaps in parental bereavement support.2. Participants will be able to describe the feasibility and process of implementing a community-based expressive arts bereavement intervention.Key MessageDespite the high risk of negative health outcomes and national guidelines recommending bereavement care, the resources for bereaved parents are limited. Storytelling Through Music is a theoretically driven, innovative approach to help bereaved parents adapt to a life-long process of finding meaning after loss. Preliminary findings suggest intervention feasibility.ImportanceBereaved parents have significantly higher morbidity and mortality than non-bereaved parents, and prolonged grief can occur in up to 40%. Despite national guidelines recommending bereavement care, the resources for bereaved parents are scarce.Objective(s)To evaluate the feasibility of a six-week intervention with parents of children who have died from cancer. Storytelling Through Music (STM) includes four weekly writing groups, self-care lessons, and pairing participants with a music therapist who creates a song from their written story. This unique combination of strategies facilitates continuing bonds and loss- and restoration-coping.Scientific Methods UtilizedTwo-group RCT utilizing mixed-methods design. Participants (N=30) are randomized to STM or control. Descriptive statistics were used for feasibility data.ResultsSeventeen parents have enrolled. The average age is 53.2 years (SD=11.4; 32-68), the majority are mothers (88%), partnered (76%), white (94%), with 29% reporting Hispanic ethnicity, and not religious (53%), but spiritual (94%). The child's average age was 19.9 years (SD=10.3; 1.5-35). Eighty-seven percent of intervention sessions have been attended. When examining intervention components, most participants felt the number of writing sessions was appropriate, reading their story aloud to the group was beneficial, and the song honored their child's legacy.Conclusion(s)STM is a theoretically driven, innovative approach to addressing grief in a high-risk, underserved population. The midpoint findings suggest intervention feasibility and acceptability. A limitation is the lack of racial/ethnic diversity. Future strategies will focus on recruiting a more diverse sample.ImpactSTM utilizes multiple modalities to help bereaved parents adapt to a life-long process of finding meaning after loss. Adding music to storytelling and narrative writing may provide a unique expression that has more effect on meta-affective and meta-cognitive coping than verbal and written expression alone. Future effectiveness studies will examine the effect on psychosocial and functional well-being, coping, and prolonged grief.KeywordsPalliative care in oncology/Psychosocial support

Journal Article The Social Worker's Guide to The Care Act 2014, Pete Feldon Get access The Social Worker's Guide to The Care Act 2014, Pete Feldon, St Albans, Critical Publishing, 2nd edn, 2023, pp. v1 + 353, ISBN: 9781913453053 (pbk), £29.99 P/B Sue Morris Sue Morris Independent Social Worker, Practice Educator/Placement Tutor, ex Mental Health Manager, UK Search for other works by this author on: Oxford Academic Google Scholar The British Journal of Social Work, bcad213, https://doi.org/10.1093/bjsw/bcad213 Published: 29 September 2023 Article history Accepted: 07 September 2023 Published: 29 September 2023

Background: The COVID-19 pandemic has highlighted that bereavement care is under-recognized with few hospitals offering universal bereavement services. Methods: One hundred sixty-nine bereaved individuals, whose loved ones died at our hospital during 2021 and 2022, completed a survey about their experience with the bereavement program. Results: Of respondents who recalled receiving bereavement outreach, 79% rated speaking to a team member soon after the death as having a positive impact on their bereavement, and 75% rated receiving a condolence call or note from the team positively. Feedback also identified opportunities for improvements in care: (1) importance of compassionate communication and connection with family members after a death; (2) more flexible hospital visitation policies; and (3) additional support for families during the end-of-life (EOL) period. Conclusions: The findings demonstrated that a hospital-based bereavement program can positively impact an individual's bereavement experience with a formal letter of condolence, psychoeducation information, and direct outreach from team members soon after death, being positively evaluated.

Background: As the field of palliative care continues to grow, many clinicians will care for patients with whom they have personal connections. Breaching the boundary between a clinician's personal and professional life is potentially an unrecognized risk for burnout. Objective: We explored the challenges of caring for patients personally known to clinicians and the types of support needed, with a view to developing preliminary practice guidelines. Design: Focus groups. Setting/Subjects: Thirteen psychosocial oncology and palliative care clinicians who care for adult patients participated in one of two focus groups. Six participants were physicians, four were nurse practitioner/registered nurse/physician assistant (NP/RN/PAs), and three were psychosocial clinicians. Measurement: Using NVivo 12, we analyzed focus group transcripts from clinicians about their experiences caring for patients they know personally, the impact of such experiences, and the type of support and guidelines that could benefit clinicians in these unique situations. Results: Navigating boundaries and managing the psychological impact on the clinician, including fear of negative evaluation, increased anxiety and emotional exhaustion were the most challenging aspects of providing such care. Suggested guidelines include an early team meeting, a buddy system, a conversation guide to address the dual relationship, and embedded psychological support and mentorship. Conclusions: Feedback from clinicians identified preliminary guidelines that incorporate tools palliative care teams can use to improve support for clinicians caring for patients with whom they have a personal connection. These tools address the psychosocial aspects of care and have the potential to help clinicians feel a greater sense of control in these often, challenging and emotionally taxing situations.

Content. Parents who experience the death of a child have significantly higher rates of psychological distress compared to non-bereaved parents. The effectiveness of current bereavement supports, and ideal types and timing of future supportive interventions aimed at improving negative sequalae are relatively unknown. Objectives. This interview-based study explored the early bereavement needs of 15 parents of children who died from cancer, including the bereavement support received, perceived barriers to support, and desired additional supportive interventions. Methods. Parents who previously participated in a survey-based study examining the early grief experience were invited to partake in a semi-structured interview. Interviews focused on examining bereavement support for parents within the first three years following the child's death and barriers to adequate support; transcribed interviews underwent thematic analysis. Results. Fifteen parents completed the interview; 14 parents (93%) were White and non-Hispanic, five were male. Parents participated on average 19 months (range 12-34) following their child's death. Parents identified numerous supports that were and were not helpful. Augmented informative materials, professional, organized, and religious/spiritual support, and connections with others were identified as key elements in a supportive intervention. Conclusion. Bereaved parents identified many supportive needs, most of which already exist at the community and institution level. Suggestions outlined by parents may provide a useful framework for developing novel supportive interventions and ways to tailor strategies to support bereaved parents. Researchers must continue to seek feedback from bereaved parents and families about their met and unmet needs and use this information to design early supportive bereavement interventions. J Pain Symptom Manage 2022;63:366-373. (C) 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Background: Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient’s wishes and values, little is known about bereaved family caregivers’ perceptions of how end-of-life care aligns with patient goals and preferences. Aim: To understand caregivers’ perceptions about patients’ care experiences, the extent to which care was perceived as goal-concordant, and the factors that contextualized the end-of-life care experience. Design: Qualitative interview study employing a semi-structured interview guide based on the National Health and Aging Trends Survey end-of-life planning module. Template analysis was used to identify themes. Setting/participants: Nineteen recently bereaved family caregivers of people with serious illness in two academic medical centers in the Northeastern United States. Results: Most caregivers reported goal-concordant care, though many also recalled experiences of goal discordance. Three themes characterized care perceptions and related to perceived quality: communication, relationships and humanistic care, and care transitions. Within communication, caregivers described the importance of clear communication, inadequate prognostic communication, and information gaps that undermined caregiver confidence in decision making. Patient-clinician relationships enriched care and were considered higher-quality when felt to be humanistic. Finally, care transitions impacted goal discordance when marked by logistical barriers, a need to establish relationships with new providers, inadequate information transfer, and poor care coordination. Conclusions: Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.

Context. The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance. Objectives. We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies. Methods. We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert scale based with additional free-text responses. Results. Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N = 43, 88%), female (N = 32, 65%), and non-Hispanic/Latino (N = 43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free-text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies. Conclusions. Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.

Context. Bereaved parents provide an important perspective for improving care for patients and families throughout the illness and after a child's death. However, involvement of bereaved parents in research studies is fraught with concerns over inflicting psychological distress and issues with study recruitment. Data on research strategies to engage parents early in their bereavement are limited. Objectives. To describe involvement of bereaved parents in the development of a comprehensive survey, examine the response rates with varying recruitment strategies and describe participation experiences of parent participants. Methods. Parents of children who endured the death of their child from cancer six to 24 months prior were invited to complete a 195-item survey examining their early grief experience. Results. Forty-nine of the 137 eligible parents from 36 different households completed the survey (response rate 36%). The respondents were predominantly white (N = 43; 88%), female (N = 32; 65%), and non-Hispanic (N = 43; 88%). The median length of time from child's death to survey completion was 11 months (range 7-26). Thirty parents (61%) indicated they were comfortable/very comfortable answering the survey, 40 (82%) answered that they experienced at least a little benefit from involvement, and 36 (73%) indicated they experienced at least some distress. Conclusion. Some parents of children who died of cancer are willing to participate in research early in their bereavement, and although most experience some distress, they are comfortable answering questions about their experience and benefit from participation. Recruitment strategies including personal outreach may result in better response rates. (C) 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

1.Examine the prevalence of decisional regret expressed by parents of children that died from cancer in their early grief experience (6-24 months following their child’s death).2.Characterize the types of regrets expressed by bereaved parents early in their grief experience.3.Explore ways in which the interdisciplinary palliative care team may reduce parental decisional regret. Previous research suggests that parents who express regret after the death of their child may experience more intense grief reactions. However, little is known about the degree of decisional regret in bereaved parents and the types of regrets expressed early in their grief experience. To quantify the percentage of parents expressing regret over decisions made at the end of their child’s life and to characterize these regrets. As a part of a larger survey-based study examining the experience of parents 6-24 months following the death of their child, parents were asked if they had regrets about decisions made at the end of their child's life (yes/no/I don’t know) and to elaborate using free text. These responses were categorized. Forty-nine (36%) of 137 eligible parents completed the survey; 48 answered about regrets. Nineteen (40%) endorsed having regret(s), 23 (48%) indicated having no regrets and 6 (12%) said I don’t know. Notably, 4 parents who indicated having no regrets/I don’t know used the free text-response to report one or more regret(s). More mothers (48%) than fathers (31%) had regrets and most parents expressed multiple regrets. The free text responses fell into the following categories: not having enough information/knowledge; not advocating strongly for their child; not doing enough or more of certain treatments; regretting certain treatments or continued treatment, and not controlling symptoms. Many parents expressed regret over decisions made at the end of their child’s life. The regrets were multiple and varied. Further research is needed to examine the association between decisional regret and parental grief reactions and psychosocial outcomes.

Role confusion is a prominent constituent symptom of Prolonged Grief Disorder in parents after their infants die from sudden infant death syndrome (SIDS). We interviewed 31 parents of SIDS infants 2-5 years post-loss examining the parental role before death, at the time of loss, and in bereavement. Thematic analysis found disruption of the role and re-imagined responsibilities for their child's physical security, emotional security, and meaning. Tasks within these domains changed from concrete and apparent to representational and self-generated. Parents in bereavement locate ongoing, imperative parental responsibilities, particularly asserting their child's meaningful place in the world and in their family.

Click to increase image sizeClick to decrease image size AcknowledgementsWe would like to thank the many bereaved family members who participated in the Zoom bereavement groups during this incredibly challenging time.Disclosure statementMs. Ryan has no financial disclosures. Dr. Morris receives royalties for her self-help book, An Introduction to Coping with Grief.

Purpose: Little is known about the bereavement needs of young adults (YAs) whose partners have died from cancer. Historically, research about the impact of widowhood has focused on adults in later life. We adapted a bereavement support group curriculum used with older adults to address the unique needs of younger bereaved partners. Methods: Applying a quality improvement framework, nine bereaved YAs whose partners had recently died participated in a 6-session bereavement support group program. The participants completed an evaluation and provided feedback throughout the program. Results: The participants were six females and three males (30-43 years). The average time since the death of their partner was 7 months and four participants had dependent children. The participants evaluated the program highly, reporting they felt less isolated (4.75/5 on a 5-point Likert Scale); their concerns were similar to others (5/5); and the discussion topics were relevant to their situation (4.75/5). Additional topics for the next version of the curriculum included maintaining a relationship with in-laws, being a "solo parent," and dating. The participants also wanted the program to be extended given they had little contact with other bereaved partners. Based on this feedback, we converted the program into a drop-in group format meeting every 3 weeks, accepting new participants on a rolling basis. In parallel with the drop-in group, we plan to offer a revised 8-session bereavement support group twice a year. Conclusion: This pilot demonstrated that the bereavement support group curriculum for older bereaved adults was readily adapted for use with younger bereaved partners.