Bereavement Support Strategies for Grief After Child Loss

Recruiting at 7 trial locations

Overseen By Carolyn Sutter, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Ann & Robert H Lurie Children's Hospital of Chicago

Disqualifiers: Non-English/Spanish speakers, Under 18

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 6

2000 Participants Needed

Trial Summary

What is the purpose of this trial?

Parents of children who die traumatically or unexpectedly from things like suicide or an overdose suffer from mental and physical health problems and can experience massive disruptions in their family life. For about half of these parents, the first, and sometimes only, interactions they have with the healthcare system when their child dies are with a medical examiner or coroner (hereafter 'ME'). But MEs have little to no training in helping grieving families, and there are no standards guiding medical examiners or coroners on how or even if they should help grieving families. This gap leaves parents to find the help they need on their own. This research will test two different strategies for addressing this gap in the healthcare system.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment CommunityRx-Bereavement and related bereavement support strategies for grief after child loss?

Research indicates that bereavement support, including counseling and support groups, can help reduce anxiety and feelings of isolation after losing a loved one. These interventions promote communication and healing within families, which can be beneficial for those grieving the loss of a child. ^{1 2 3 4 5}

How does this bereavement support treatment differ from other treatments for grief after child loss?

This treatment is unique because it focuses on providing structured bereavement support specifically for parents who have lost a child, using a preventive model of care that includes education, guidance, and support. Unlike other general grief interventions, it targets highly distressed parents and aims to reduce psychological symptoms and marital dysfunction, offering a more tailored approach to their specific needs. ^{2 6 7 8 9}

Research Team

Stacy Lindau, MD, MAPP

Principal Investigator

University of Chicago

Kelly Michelson, MD, MPH

Principal Investigator

Lurie Children's Hospital

Eligibility Criteria

This trial is for parents or legal caregivers who have lost a child under 25 years old to unexpected or traumatic events, and are referred by medical examiners. Participants must be able to communicate in English or Spanish and give permission to the ME for referral. Those unable to understand these languages or under 18 cannot join.

Inclusion Criteria

I am the parent or legal caregiver of a minor under 25 involved in a medical examiner case.

Parents or legal caregivers who provide permission to the ME to be referred to Missing Pieces

Parent or legal caregivers who are referred to Missing Pieces by a ME

Exclusion Criteria

Parents or legal caregivers unable to read or communicate in English or Spanish

I am a parent or caregiver under 18.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants receive either CommunityRx-Bereavement (CRx-B) or General Bereavement Support Information (GBSI) to support parents after a child's unexpected or traumatic death

6.5 months

Surveys conducted approximately 6.5 months after child's death

Follow-up

Participants are monitored for self-efficacy in finding resources and symptoms of complicated grief

6.5 months

Treatment Details

Interventions

• CommunityRx-Bereavement
• General Bereavement Support Information

Trial Overview The study compares two support strategies for grieving parents post-child loss: General Bereavement Support Information versus CommunityRx-Bereavement, aiming to address the healthcare system's gap in aiding families during such crises.

Participant Groups

Group I: CommunityRx-Bereavement (CRx-B) Experimental Treatment 1 Intervention

Group II: General Bereavement Support Information (GBSI) Active Control 1 Intervention

Who Is Running the Clinical Trial?

Ann & Robert H Lurie Children's Hospital of Chicago

Lead Sponsor

Trials

275

Recruited

5,182,000+

Patient-Centered Outcomes Research Institute

Collaborator

Trials

592

Recruited

27,110,000+

University of Chicago

Collaborator

Trials

1,086

Recruited

844,000+

Missing Pieces, a program of the HAP Foundation

Collaborator

Trials

1

Recruited

2,000+

Findings from Research

Bereavement support is crucial in critical care settings, as it can significantly impact families after the loss of a loved one in the ICU.

The review suggests that effective bereavement programs should include tangible resources like brochures and memory-making activities, and utilize a bereavement risk assessment tool to tailor support to families' specific needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Bereavement Care in the Adult Intensive Care Unit: Directions for Practice. Erikson, A., McAdam, J.[2021]

A series of bereavement support groups for children and parents, developed after the loss of a loved one to cancer, effectively reduced anxiety and feelings of isolation associated with grief.

These groups not only facilitated family communication and healing but also ensured continuity of care within the outpatient cancer care program, highlighting their importance in supporting families during difficult times.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A bereavement support group for children: fostering communication about grief and healing. Mulcahey, AL., Young, MA.[2004]

Recent research has improved understanding of bereavement care, helping clinicians distinguish between normal grief and Complicated Grief Disorder, which can lead to better identification and support for vulnerable individuals.

New psychotherapies for Complicated Grief Disorder have shown clinical efficacy, but more research is needed to enhance detection of at-risk individuals and to develop tailored interventions that address underlying attachment issues.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement. Zhang, B., El-Jawahri, A., Prigerson, HG.[2007]

A systematic review of 74 studies on bereavement interventions found that while pharmacotherapy is effective for treating bereavement-related depression, other therapeutic approaches lack consistent evidence of benefit.

The review highlights significant challenges in establishing effective bereavement care, including variability in study designs and insufficient reporting, which hinder the development of evidence-based recommendations.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Bereavement care interventions: a systematic review. Forte, AL., Hill, M., Pazder, R., et al.[2019]

Bereavement care in critical care units is essential and should include support and counseling for family members before and after a patient's death, as well as follow-up support in the months following the loss.

This approach recognizes the significant emotional transition family members undergo from anticipating a loss to experiencing bereavement, highlighting the need for comprehensive care during these critical moments.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Bereavement care in the critical care setting. Warren, NA.[2004]

The article provides a comprehensive overview of grief support in Pediatric Palliative Care, addressing anticipatory grief, grief at the time of death, and post-death bereavement support.

It emphasizes the importance of evolving grief support methods based on current grief theory and research, aiming to enhance the effectiveness of programs for families dealing with pediatric illness and loss.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Current Grief Support in Pediatric Palliative Care. Schuelke, T., Crawford, C., Kentor, R., et al.[2023]

The death of a child is an extremely challenging experience for parents, highlighting the need for effective bereavement care in hospitals, which is currently inconsistent across facilities.

Boston Children's Hospital has developed a comprehensive bereavement program focused on education, guidance, and support, advocating for all pediatric hospitals to adopt similar programs as a standard practice to better assist grieving families.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Development of a Hospital-Wide Bereavement Program: Ensuring Bereavement Care for All Families of Pediatric Patients. Morris, SE., Dole, OR., Joselow, M., et al.[2018]

A systematic review of bereavement support programs for parents who lost a child found no overall benefit from these interventions, based on three controlled studies from 1990 to 2001.

However, highly distressed mothers showed significant reductions in psychological symptoms and marital dysfunction, suggesting that targeted support may be more effective for certain individuals rather than a one-size-fits-all approach.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Do interventions make a difference to bereaved parents? A systematic review of controlled studies. Rowa-Dewar, N.[2018]

A review of eight studies on bereavement camps for children indicates that these camps are effective interventions for helping children cope with grief and build resilience after loss.

Despite variations in camp structure and theoretical approaches, many camps share common goals and activities that contribute to positive outcomes for bereaved children.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Are children's grief camps effective? Clute, MA., Kobayashi, R.[2013]

References

1. United States pubmed.ncbi.nlm.nih.gov

Bereavement Care in the Adult Intensive Care Unit: Directions for Practice. [2021]

2. United States pubmed.ncbi.nlm.nih.gov

A bereavement support group for children: fostering communication about grief and healing. [2004]

3. United States pubmed.ncbi.nlm.nih.gov

Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement. [2007]

4. England pubmed.ncbi.nlm.nih.gov

Bereavement care interventions: a systematic review. [2019]

5. United States pubmed.ncbi.nlm.nih.gov

Bereavement care in the critical care setting. [2004]

6. Switzerland pubmed.ncbi.nlm.nih.gov

Current Grief Support in Pediatric Palliative Care. [2023]

7. United States pubmed.ncbi.nlm.nih.gov

The Development of a Hospital-Wide Bereavement Program: Ensuring Bereavement Care for All Families of Pediatric Patients. [2018]

8. England pubmed.ncbi.nlm.nih.gov

Do interventions make a difference to bereaved parents? A systematic review of controlled studies. [2018]

9. United States pubmed.ncbi.nlm.nih.gov

Are children's grief camps effective? [2013]