"I think that she would have wanted. . .": Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life.

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.

The parental role before and after SIDS.

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.

Burnout in psychosocial oncology clinicians: A systematic review.

OBJECTIVE: Few studies have examined burnout in psychosocial oncology clinicians. The aim of this systematic review was to summarize what is known about the prevalence and severity of burnout in psychosocial clinicians who work in oncology settings and the factors that are believed to contribute or protect against it. METHOD: Articles on burnout (including compassion fatigue and secondary trauma) in psychosocial oncology clinicians were identified by searching PubMed/MEDLINE, EMBASE, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and the Web of Science Core Collection. RESULTS: Thirty-eight articles were reviewed at the full-text level, and of those, nine met study inclusion criteria. All were published between 2004 and 2018 and included data from 678 psychosocial clinicians. Quality assessment revealed relatively low risk of bias and high methodological quality. Study composition and sample size varied greatly, and the majority of clinicians were aged between 40 and 59 years. Across studies, 10 different measures were used to assess burnout, secondary traumatic stress, and compassion fatigue, in addition to factors that might impact burnout, including work engagement, meaning, and moral distress. When compared with other medical professionals, psychosocial oncology clinicians endorsed lower levels of burnout. SIGNIFICANCE OF RESULTS: This systematic review suggests that psychosocial clinicians are not at increased risk of burnout compared with other health care professionals working in oncology or in mental health. Although the data are quite limited, several factors appear to be associated with less burnout in psychosocial clinicians, including exposure to patient recovery, discussing traumas, less moral distress, and finding meaning in their work. More research using standardized measures of burnout with larger samples of clinicians is needed to examine both prevalence rates and how the experience of burnout changes over time. By virtue of their training, psychosocial clinicians are well placed to support each other and their nursing and medical colleagues.

Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support.

PURPOSE: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instruments used to understand and assess outcomes in parents early in the grief experience are inadequate and may serve to pathologize the normal grief response. METHODS: Through review of the literature, previously conducted qualitative work, and extensive clinical experience working with bereaved parents, we developed a new framework for understanding, assessing, and studying parental grief during the first 2 years following the death of a child from cancer. RESULTS: Our novel longitudinal framework hypothesizes that short- and long-term psychosocial sequalae in parents following the death of a child from cancer depend not only on pre-death factors but on the support present through the disease experience and the oscillation between protective factors and risk factors in the post-death period. We further hypothesize that protective factors and risk factors may be modifiable, making them key potential targets for supportive interventions aimed at augmenting protective factors and diminishing the effect of risk factors. CONCLUSION: This is a new framework for understanding and assessing the grief experience of parents within the first 2 years of a child's death. Many questions about how best to support parents following the death of a child from cancer remain providing ample opportunities for future research and development of interventions to improve both short- and long-term outcomes in bereaved parents.

Initial validation of a needs instrument for young people bereaved by familial cancer.

OBJECTIVE: This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12-25 years) who have experienced the death of a parent or sibling to cancer. METHODS: In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI. RESULTS: Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation. CONCLUSIONS: The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.

Transitional objects of grief.

BACKGROUND: Transitional objects provide security and symbolic connection with valued others when separated from them. Bereaved parents often keep, cherish and visit saved objects of their deceased child. This research examined the hypothesis that these objects behave as transitional objects of grief in bereaved mothers during three years following their infants' deaths from Sudden Infant Death Syndrome. METHODS: Questionnaires were administered asking about the presence of kept objects and momentos from their deceased infant, and the frequency, location and emotions experienced during visits to them. Diagnostic criteria for Prolonged Grief Disorder (PGD) were assessed using the Parental Bereavement Questionnaire. RESULTS: 98.6% of the mothers reported having transitional objects of grief, and most visited them more frequently than once per week regardless of PGD status. Mothers with PGD reported significantly more distress when visiting the objects, especially those visiting them privately. Mothers with PGD who felt comforted by the objects had lower risk for finding life meaningless or finding discussion about the infant intolerable. CONCLUSIONS: Transitional objects of grief are common and associated with key aspects of grief. There is a need to understand the potential therapeutic uses of transitional objects in promoting bereavement adjustment.

Benefits of powered standing wheelchair devices for adolescents with Duchenne muscular dystrophy in the first year of use.

AIM: Poorer physical and mental health often accompany loss of walking in Duchenne muscular dystrophy. This study assessed the impacts of powered wheelchair standing device (PWSD) use on muscle and joint pain, joint angles when standing and mental health in adolescents with Duchenne muscular dystrophy. METHODS: Fourteen adolescents and parents participated in a stepped wedge design study over 12 months. During a baseline and intervention period, adolescents described pain and mental health, and parents reported their child's mental health. Video data were collected to measure hip, knee and ankle joint angles in the preferred standing position. RESULTS: Compared with baseline and adjusting for covariates, standing wheelchair use was associated with no change in muscle or joint pain or videoed joint angles in standing. Child-reported Strengths and Difficulties total scores decreased (coefficient -3.1, 95% confidence interval -4.6, -1.5); and parent-reported Personal Adjustment and Role Skills Scale total scores increased (coefficient 7.9, 95% confidence interval 3.3-12.5). CONCLUSIONS: PWSD use was associated with maintenance of musculoskeletal status and advantages to mental health. Long-term observations are necessary to improve understanding of how to support wellbeing in adolescents with Duchenne muscular dystrophy.

A standardized approach to bereavement risk-screening: a quality improvement project.

Objectives: Identifying family members at-risk of poor bereavement outcomes poses a challenge for clinicians, resulting in inconsistent bereavement follow-up. The current quality improvement study tests a method for identification of at-risk family members, and describes follow-up they received from the bereavement service at Dana-Farber Cancer Institute.Design: A standardized bereavement risk assessment, referral and follow-up process was piloted as part of a quality improvement project using a plan-do-study-act approach (PDSA).Methods: A convenience sample of eleven clinical social workers completed paper and pencil bereavement risk-screening assessments using the Bereavement Risk-Screening Tool (BRST) on a sample of bereaved family members known to them. The results of the BRST were passed onto the bereavement program for follow-up.Findings: Eleven out of a total of 17 social workers participated in the study. Social workers screened 100% (52/52) of identified bereaved family members, corresponding to 52 patient deaths. Approximately half (28/52) were identified as being 'at-risk' of a poor bereavement outcome based on the social worker's consideration of the presence of potential risk-factors and their response to a prediction-type question about the bereaved individual's future coping. 'Lack of preparation for the death', 'unexpected death within the context of an illness' and 'witnessing a difficult death' were the most commonly identified risk factors. Of those individuals who were identified to be 'at-risk', 89% received an outreach attempt by telephone from the director of bereavement services, surpassing our project target of 80%. Conclusions: The BRST has the potential to help clinicians in health care settings identify those family members who might be considered at heightened risk of a poor bereavement outcome, facilitating early outreach and recommendations for support. The tool was easy to complete and helped streamline the referral process to the bereavement program.

Pre-loss personal factors and prolonged grief disorder in bereaved mothers.

BACKGROUND: Identifying characteristics of individuals at greatest risk for prolonged grief disorder (PGD) can improve its detection and elucidate the etiology of the disorder. The Safe Passage Study, a study of women at high risk for sudden infant death syndrome (SIDS), prospectively examined the psychosocial functioning of women while monitoring their healthy pregnancies. Mothers whose infants died of SIDS were followed in bereavement. METHODS: Pre-loss data were collected from 12 000 pregnant mothers and analyzed for their associations with grief symptoms and PGD in 50 mothers whose infants died from SIDS, from 2 to 48 months after their infant's death, focusing on pre-loss risk factors of anxiety, depression, alcohol use, maternal age, the presence of other living children in the home, and previous child loss. RESULTS: The presence of any four risk factors significantly predicted PGD for 24 months post-loss (p < 0.003); 2-3 risk factors predicted PGD for 12 months (p = 0.02). PGD rates increased in the second post-loss year, converging in all groups to approximately 40% by 3 years. Pre-loss depressive symptoms were significantly associated with PGD. Higher alcohol intake and older maternal age were consistently positively associated with PGD. Predicted risk scores showed good discrimination between PGD and no PGD 6-24 months after loss (C-statistic = 0.83). CONCLUSIONS: A combination of personal risk factors predicted PGD in 2 years of bereavement. There is a convergence of risk groups to high rates at 2-3 years, marked by increased PGD rates in mothers at low risk. The risk factors showed different effects on PGD.

The Grief of Parents After the Death of a Young Child.

Research demonstrates that severe forms of grief and grief-related pathology exist in the general population. Less attention, however, has been paid to the grief of parents following the death of a young, dependent child. In this review, we summarize a search of Pubmed, PsycINFO and Web of Science from 1995 to 2017, using the terms 'parental complicated grief', 'parental traumatic grief', and 'parent Prolonged Grief Disorder', specifically addressing parental grief and identified risk factors for complicated or prolonged grief. Forty-two studies met criteria and indicate a significant burden of complicated or prolonged grief in parents of children dying from virtually any cause. It appears that the empiric literature is undermined by great variability, including the composition of samples, the causes of death studied, the psychometric measures used, and post-loss intervals. We conclude that the uniform severity of grief experiences following the death of a young child is potentially a distinct subtype of grief, deserving of attention in its own right in future research and diagnostic formulations.

Primary Care for the Elderly Bereaved: Recommendations for Medical Education.

The aim of this study was to explore the current practices of primary care physicians (PCPs) in providing bereavement care to elderly patients, with implications for medical education. A total of 63 PCPs answered a brief online survey about their typical practices, barriers, comfort level with bereavement, and confidence in their ability to diagnose prolonged grief disorder (PGD). They were recruited through an online newsletter and contacts of one of the authors. The results found that two-thirds of the PCPs do not routinely screen their elderly patients for recent losses, nor do they refer to mental health clinicians when loss is identified. Barriers included not learning of the deaths in patients' lives and lack of time during clinic visits. Those PCPs who had experienced their own losses were significantly more comfortable in speaking to patients about recent losses and more confident in their ability to diagnose PGD. We recommend bereavement education be incorporated into the medical school curriculum from the outset, utilizing the psychological principle of graded exposure to bereaved individuals.

Coupling of online control and inhibitory systems in children with atypical motor development: A growth curve modelling study.

INTRODUCTION: Previous research indicates that children with Developmental Coordination Disorder (DCD) show deficits performing online corrections, an issue exacerbated by adding inhibitory constraints; however, cross-sectional data suggests that these deficits may reduce with age. Using a longitudinal design, the aim of the study presented here was to model the coupling that occurs between inhibitory systems and (predictive) online control in typically developing children (TDC) and in those with Developmental Coordination Disorder (DCD) over an extended period of time, using a framework of interactive specialization. We predicted that TDC would show a non-linear growth pattern, consistent with re-organisation in the coupling during the middle childhood period, while DCD would display a developmental lag. METHOD: A group of 196 children (111 girls and 85 boys) aged between 6 and 12years participated in the study. Children were classified as DCD according to research criteria. Using a cohort sequential design, both TDC and DCD groups were divided into age cohorts. Predictive (online) control was defined operationally by performance on a Double-Jump Reaching Task (DJRT), which was assessed at 6-month intervals over two years (5 time points in total). Inhibitory control was examined using an anti-jump condition of the DJRT paradigm whereby children were instructed to touch a target location in the hemispace opposite a cued location. RESULTS: For the TDC group, model comparison using growth curve analysis revealed that a quadratic trend was the most appropriate fit with evidence of rapid improvement in anti-reach performance up until middle childhood (around 8-9years of age), followed by a more gradual rate of improvement into late childhood and early adolescence. This pattern was evident on both chronometric and kinematic measures. In contrast, for children with DCD, a linear function provided the best to fit on the key metrics, with a slower rate of improvement than controls. CONCLUSION: We conclude that children with DCD require a more extended period of development to effectively couple online motor control and executive systems when completing anti-reach movements, whereas TDC show rapid improvement in early and middle childhood. These group differences in growth curves are likely to reflect a maturational lag in the development of motor-cognitive networks in children with DCD.

The Welsh study of mothers and babies: protocol for a population-based cohort study to investigate the clinical significance of defined ultrasound findings of uncertain significance.

BACKGROUND: Improvement in ultrasound imaging has led to the identification of subtle non-structural markers during the 18 - 20 week fetal anomaly scan, such as echogenic bowel, mild cerebral ventriculomegaly, renal pelvicalyceal dilatation, and nuchal thickening. These markers are estimated to occur in between 0.6% and 4.3% of pregnancies. Their clinical significance, for pregnancy outcomes or childhood morbidity, is largely unknown. The aim of this study is to estimate the prevalence of seven markers in the general obstetric population and establish a cohort of children for longer terms follow-up to assess the clinical significance of these markers. METHODS/DESIGN: All women receiving antenatal care within six of seven Welsh Health Boards who had an 18 to 20 week ultrasound scan in Welsh NHS Trusts between July 2008 and March 2011 were eligible for inclusion. Data were collected on seven markers (echogenic bowel, cerebral ventriculomegaly, renal pelvicalyceal dilatation, nuchal thickening, cardiac echogenic foci, choroid plexus cysts, and short femur) at the time of 18 - 20 week fetal anomaly scan. Ultrasound records were linked to routinely collected data on pregnancy outcomes (work completed during 2012 and 2013). Images were stored and reviewed by an expert panel.The prevalence of each marker (reported and validated) will be estimated. A projected sample size of 23,000 will allow the prevalence of each marker to be estimated with the following precision: a marker with 0.50% prevalence to within 0.10%; a marker with 1.00% prevalence to within 0.13%; and a marker with 4.50% prevalence to within 0.27%. The relative risk of major congenital abnormalities, stillbirths, pre-term birth and small for gestational age, given the presence of a validated marker, will be reported. DISCUSSION: This is a large, prospective study designed to estimate the prevalence of markers in a population-based cohort of pregnant women and to investigate associations with adverse pregnancy outcomes. The study will also establish a cohort of children that can be followed-up to explore associations between specific markers and longer-term health and social outcomes.

Diagnostic ultrasound features and outcome of restrictive foramen ovale in fetuses with structurally normal hearts.

Intrauterine foramen ovale (FO) restriction in association with congenital heart disease (CHD) carries a poor prognosis. However, in the absence of CHD, the clinical importance of restrictive FO in the fetus is not well understood. We evaluated the antenatal prevalence, clinical presentation, diagnostic ultrasound features, and outcome of restrictive FO in fetuses without CHD. We reviewed the echocardiographic and clinical records of 23 fetuses diagnosed with a restrictive FO and structurally normal heart between 2001 and 2012. The atrial septum, dimensions of cardiac structures, left and right cardiac output and Doppler interrogation of cardiac flows were examined. The clinical outcomes of all fetuses with restrictive FO were analysed. Restrictive FO was identified in 23 of 1,682 (1.4%) fetuses with no CHD. Enlarged right heart structures (100%), hypermobile or redundant primum atrial septum (91%), increased right-to-left ventricular cardiac output ratio (91%), and posteriorly angulated ductus arteriosus (68%) were the most common echocardiographic findings associated with this rare phenomenon. Additional noncardiac systemic abnormalities were identified in 13 (56%) babies. Seven (30%) neonates developed persistent pulmonary hypertension, and 7 infants died. Antenatal restrictive FO is an underrecognised entity despite being a common cause of right heart dilatation in the fetus. In the absence of CHD, restrictive FO is well tolerated antenatally, but its frequent association with noncardiac abnormalities and pulmonary hypertension in the neonate are noteworthy.

The Development of a Bereavement Support Group Curriculum for Bereaved Parents of Young Adult Children: Bridging the Gap.

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.

Survey Study of a Hospital-Based Bereavement Program During COVID-19: Insights to Improve Support of the Bereaved.

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.

Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning.

PURPOSE: The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes. METHODS: Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning. RESULTS: One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores. CONCLUSION: Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.

Caring for People We Know: An Unrecognized Risk for Burnout?

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.