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Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development.

ABSTRACT: As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.

SUBMITTER: Spraker-Perlman HL

PROVIDER: S-EPMC8226717 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:This study reports on the findings from a 6-year follow-up of a randomized trial of the Family Bereavement Program (FBP) on the outcomes for spousally bereaved parents. Spousally bereaved parents (N = 131) participated in the trial in which they were randomly assigned to receive the FBP (N = 72) or literature control (N = 59). Parents were assessed at four time points: pretest, posttest, and 11-month and 6-year follow-up. They reported on mental health problems, grief, and parenting at all four time periods. At the 6-year follow-up, parents reported on additional measures of persistent complex bereavement disorder, alcohol abuse problems, and coping efficacy. Bereaved parents in the FBP as compared to those in the literature control had lower levels of symptoms of depression, general psychiatric distress, prolonged grief, and alcohol problems, and higher coping efficacy (for mothers) at the 6-year follow-up. Multiple characteristics of the parent (e.g., gender, age, and baseline mental health problems) and of the spousal death (e.g., cause of death) were tested as moderators of program effects on each outcome, but only 3 of 45 tests of moderation were significant. Latent growth modeling found that the effects of the FBP on depression, psychiatric distress, and grief occurred immediately following program participation and were maintained over 6 years. Mediation analysis found that improvement in positive parenting partially mediated program effects to reduce depression and psychiatric distress, but had an indirect effect to higher levels of grief at the 6-year follow-up. Mediation analysis also found that improved parenting at the 6-year follow-up was partially mediated by program effects to reduce depression and that program effects to increase coping efficacy at the 6-year follow-up was partially mediated through reduced depression and grief and improved parenting. FBP reduced mental health problems, prolonged grief, and alcohol abuse, and increased coping efficacy of spousally bereaved parents 6 years later. Mediation pathways for program effects differed across outcomes at the 6-year follow-up.

Project description:IntroductionBereaved 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 analysisWe 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 disseminationEthical 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 numberNCT04552717.

Project description:ImportanceEarly palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory.ObjectiveTo determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs.Design, setting, and participantsNovel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate).Main outcomes and measuresDegree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results.ResultsOf the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001).Conclusions and relevancePediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.

Project description:BackgroundGrief following stillbirth and child death are one of the most traumatic experience for parents with psychosomatic, social and economic impacts. The grief profile, severity and its impacts in Indian context are not well documented. This study documented the grief and coping experiences of the Indian parents following stillbirth and child death.MethodsThis exploratory qualitative study in Delhi (India) included in-depth interviews with parents (50 mothers and 49 fathers), who had stillbirth or child death, their family members (n = 41) and community representatives (n = 12). Eight focus group discussions were done with community members (n = 72). Inductive data analysis included thematic content analysis. Perinatal Grief Scale was used to document the mother's grief severity after 6-9 months of loss.ResultsThe four themes emerged were grief anticipation and expression, impact of the bereavement, coping mechanism, and sociocultural norms and practices. The parents suffered from disbelief, severe pain and helplessness. Mothers expressed severe grief openly and some fainted. Fathers also had severe grief, but didn't express openly. Some parents shared self-guilt and blamed the hospital/healthcare providers, themselves or family. Majority had no/positive change in couple relationship, but few faced marital disharmony. Majority experienced sleep, eating and psychological disturbances for several weeks. Mothers coped through engaging in household work, caring other child(ren) and spiritual activities. Fathers coped through avoiding discussion and work and professional engagement. Fathers resumed work after 5-20 days and mothers took 2-6 weeks to resume household chores. Unanticipated loss, limited family support and financial strain affected the severity and duration of grief. 57.5% of all mothers and 80% mothers with stillbirth had severe grief after 6-9 months.ConclusionsStillbirth and child death have lasting psychosomatic, social and economic impacts on parents, which are usually ignored. Sociocultural and religion appropriate bereavement support for the parents are needed to reduce the impacts.

Project description:Purpose:Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication. Methods:Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey. Results:Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families. Conclusion:The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.

Project description:BACKGROUND:In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). METHODS:Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. RESULTS:Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9-10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants' reasoning about whether LDTs would change their own clinical practice (3-10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. CONCLUSION:The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research.

Project description:BackgroundAdaption to the loss of a loved one due to suicide can be complicated by feelings of guilt, shame, responsibility, rejection, and stigmatization. Therefore people bereaved by suicide have an increased risk for developing complicated grief which is related to negative physical and mental disorders and an increased risk for suicidal behavior. Grief interventions are needed for this vulnerable population. The aim of this systematic review was to provide an overview of the current state of evidence concerning the effectiveness of interventions that focus on grief for people bereaved by suicide.MethodsWe conducted a systematic literature search using PubMed, Web of Science, and PsycINFO for articles published up until November 2016. Relevant papers were identified and methodological quality was assessed by independent raters. A narrative synthesis was conducted.ResultsSeven intervention studies met the inclusion criteria. Two interventions were based on cognitive-behavioral approaches, four consisted of bereavement groups, and one utilized writing therapy. As five of the seven interventions were effective in reducing grief intensity on at least one outcome measure, there is some evidence that they are beneficial. Bereavement groups tend to be effective in lowering the intensity of uncomplicated grief, as are writing interventions in lowering suicide-specific aspects of grief. Cognitive-behavioral programs were helpful for a subpopulation of people who had high levels of suicidal ideation.LimitationOn average, methodological quality was low so the evidence for benefits is not robust. The stability of treatment effects could not be determined as follow-up assessments are rare. Generalizability is limited due to homogeneous enrollments of mainly female, white, middle-aged individuals.ConclusionsPeople bereaved by suicide are especially vulnerable to developing complicated grief. Therefore, grief therapies should be adapted to and evaluated in this population. Prevention of complicated grief may be successful in populations of high risk individuals.

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Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development.

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