The Development of a Bereavement Support Group Curriculum for Young Adults Dealing with the Death of a Partner: A Quality Improvement Project

Abstract

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.

Introduction

In young adulthood, the death of a partner occurs at a stage in the lifecycle that is considered “off-time,”¹ outside of normal lifespan development. Even though bereavement is a major life event with serious implications for the physical and mental health of those affected,^2–5 bereavement services vary greatly and are often not readily available⁶ or specific to the needs of young adults (YAs). Given that grieving involves adaptation to change triggered by loss, the role of bereavement care is to help facilitate this adjustment so that bereaved individuals can continue to live a meaningful life.⁶ Within a preventive model of care, identifying those individuals who might be at risk of a difficult bereavement reaction has been the focus of considerable research over the past two decades.^7–11 A recent meta-analysis found that prolonged grief affects ∼10% of bereaved individuals,¹² with a prevalence of 10%–20% following the death of a romantic partner.^9,13–15

Research addressing the impact of widowhood has historically focused on the death of spouses in later life since the likelihood of being bereaved increases with age.^16,17 Limited research, however, has addressed the bereavement needs of YAs,¹⁸ including those of bereaved partners. Mash, Fullerton, Shear, and Ursano¹⁹ reported on YAs between 17 and 29 years of age, who had experienced the death of a significant loved one, including a parent, sibling, or close friend from a variety of causes. They found that 34% of their sample endorsed mild to severe depression and that 16% met the criteria for complicated grief, which is higher than that reported in the general population.¹²

The death of a YA partner is often accompanied by many losses that are future and family oriented. These losses include the loss of one's hopes or plans for the future, the loss of one's identify as a couple, the loss of income, and possibly the loss of one's co-parent of dependent children.²⁰ A particular challenge for these YAs is a sense of “difference” from their nonbereaved counterparts who are often establishing their careers, entering committed relationships, and starting families. Unfortunately, following the death of a YA, the surviving partner's developmental path is suddenly disrupted as they are forced onto a different path where their experience of loss often goes unrecognized or misunderstood by others. As such, bereaved young partners belong to a small and isolated group, where this sense of isolation has the potential to further impact their loss.

In this article, we describe the development of a YA Bereavement Support Group curriculum for young bereaved partners at Dana-Farber Cancer Institute (DFCI). This project was a quality improvement initiative between the Bereavement Program and the YA Program (YAP), incorporating techniques from the plan-do-study-act (PDSA) approach.^21,22 We begin by describing our original 6-session bereavement support group program for older spouses whose partners died from cancer and how we adapted the curriculum to address the unique needs of younger partners. Finally, we outline the curriculum we developed, incorporating feedback from nine YAs who participated in a pilot group and the changes we made to the program format based on their experience and wish for continued support.

Methods

Setting

DFCI is a large academic medical center in Boston. It officially launched a hospital-wide bereavement program for adult patient services in November 2010, adopting an education, guidance, and support model.⁶ Services include the following: information about grief and loss, seminars, individual visits, and support groups.

On average, DFCI experiences 2800 deaths each year of adult patients; ∼4% are patients between 18 and 39 years of age. The largest group of bereaved individuals who utilize the bereavement program is bereaved spouses, 60–75 years old. With the expansion of the YAP, which was launched in 2011, we became acutely aware of the unmet needs of young bereaved partners as the bereavement program received more requests for support. Adopting a quality improvement framework, we used techniques based on Deming's PDSA cycle of iterative improvement common in health care to inform changes to the curriculum for use with younger bereaved partners.²² PDSA cycles provide a four-stage structure for testing changes where a change aimed at improvement is identified (plan), tested in the setting (do), findings examined (study), and further adaptations identified to be tested in the next cycle (act).²²

Group curriculum

Before this pilot, we had offered closed bereavement support groups for spousal loss for older adults at our institute for 5 years based on our education, guidance, and support model.⁶ Within a preventive model of care, the curriculum is largely psychoeducational, incorporating strategies based on cognitive-behavioral therapy (CBT),^23,24 which has been shown to be an effective bereavement intervention.²⁵ This original 6-session curriculum was modified slightly for the pilot YA partner bereavement support group based on our clinical experience with bereaved YA partners (see Table 1, Column 1). Specifically, we added discussion topics about losing a partner as a YA and parenting. Each session provides psychoeducation about the nature of grief and loss, while introducing CBT strategies to help increase their sense of control.

Table 1.

Original Curriculum and Adapted Young Adult Curriculum for Young Adult Bereaved Partners

Session	Topics and exercises—original curriculum	Topics and exercises—final YA curriculum
1	Introduction of group program—being a young adult and losing a partner^a Guidelines and curriculum overview Your story—brief introduction by each participant of themselves and their partner's diagnosis and illness Group exercise: Goals for the group Homework reading^b	1 Introduction of group program—being a young adult and losing a partner Guidelines and curriculum overview Your story—brief introduction by each participant of themselves and their partner's diagnosis and illness Group exercise: Goals for the group Homework reading^b
2	Understanding grief—loss and change Wave-like pattern of grief Group exercise: Writing with your other hand²⁷ Group exercise: “What's lost?”	2 Understanding grief—loss and change Wave-like pattern of grief Group exercise: Writing with your other hand²⁷ Group exercise: “What's lost?”
3	Remembering and acknowledging feelings Group exercise—each participant “introduces” their partner to the group by sharing two or three framed photos of them, telling more of their story	3 Remembering and acknowledging feelings Group exercise—each participant “introduces” their partner to the group by sharing two or three framed photos of them, telling more of their story
4	Permission to grieve Identifying needs Tackling barriers Group exercise: Discussion about barriers, e.g., feelings of guilt, regret, anger, difficult interactions with others; parenting challenges	4 Permission to grieve Identifying needs Tackling barriers Group exercise: Discussion about barriers, e.g., feelings of guilt, regret, anger, difficult interactions with others
5	Maintaining a connection with their partner—discussion of ways to do this, including legacy building Parenting Dealing with special days and anniversaries Group exercise: Framework for tackling “firsts”	5 Navigating conversations and relationships with others, including in-laws, family members, friends, and colleagues Group exercise: Framework for approaching difficult conversations
6	Moving forward Concept of a different path Group exercise: Building your new path	6 Maintaining a connection with their partner—discussion of ways to do this, including legacy building Dealing with “firsts”—special days and anniversaries Group exercise: Framework for tackling “firsts”
		7 Parenting as a “solo parent”Supporting grieving childrenGroup exercise: What are their challenges?
		8 Moving forwardConcept of a different pathChanged IdentityDating and future relationshipsGroup exercise: Building your new path

Italics refers to the YA topics that were initially added to the original curriculum for the pilot

The participants receive a copy of “An introduction to coping with grief,”²⁶ as a workbook, and each session has suggested readings and exercises.

YA, young adult.

Participants

In early 2016, bereaved YA partners of DFCI patients were invited to participate in the bereavement support group program. Potential participants who lived locally and were in commuting distance of DFCI were identified using our bereavement database. We searched for deceased patients who had died within the previous 24 months, who were 45 years or younger (assuming that their partners could be younger), and who had listed as their family contact a spouse, partner, or significant other, not a parent. A targeted mailing was sent to potential participants inviting them to join the group. Referrals were also made by social workers.

The group was limited to 10 participants and was offered free of charge on a first come, first served basis. Fifty-eight invitations were mailed and nine individuals participated (six females and three males). One other person expressed interest, but could not attend due to childcare issues. The project was determined to be a quality improvement initiative by the DFCI Institutional Review Board (IRB), and as such was exempt from formal oversight by the IRB.

YA pilot curriculum

The group was facilitated by two clinicians (S.E.M. and P.M.S.) and participants were screened individually by one of the facilitators before joining. The closed-group format aims to decrease the participants' sense of isolation by providing an opportunity to meet other YAs who have experienced a similar loss from cancer. An overview of the program and ground rules was discussed during the first session. A workbook accompanying the curriculum was also given to each participant.²⁶

We were deliberate in trying to contain how much information about the patients' disease and treatment was shared initially, given these details could be distressing to others. We adopted a “graded exposure” approach based on behavior therapy²³ where we followed a “not too much too soon” approach regarding the sharing of information. Rather, the focus was to facilitate the connection between the participants and their shared sense of loss. During the first session, participants were asked to briefly introduce themselves and the clinicians provided a basic overview of grief. Each participant was also asked to share their goals for attending the program, which helped to develop the group process and identify a common purpose.

The main focus of the second session was highlighting the psychological factors of grief, including loss, change, and control. Realistic expectations of progress were discussed. Participants were encouraged to resist the view that grief is something that can be “fixed” or something that they will “get over quickly” in the same way that they would recover from a cold. The wave-like pattern of grief was described and the concept of heightened or “trigger waves” was introduced, which provides a useful model to help bereaved individuals understand their experience, and in turn, increase their sense of control.²⁴

Two exercises were completed in the second session to help create realistic expectations of progress. The first is “Writing with your other hand,” adapted from Cole and Johnson,²⁷ where the participants are asked to write their name and address with their nondominant hand and reflect on this experience. The second exercise, “What's Lost?” asks each to identify what they have lost with the death of their partner, apart from the person themselves.²⁴ This exercise, while confronting, underscores that with their partner's death, they have lost many things, all of which need to be attended to in some way. The group responses are listed and the participants are asked to identify which roles or tasks they can take on themselves, which ones they might need to delegate, and which ones they need to mourn, such as the co-parent of their child or their future plans as a couple.

In the third session, participants share photos and stories of their partners, consistent with a graded exposure framework.²³ The range of feelings that accompany grief is normalized and reminiscing is seen as an important intervention that helps to promote a connection with the deceased.²⁸ Session four focuses on challenging unrealistic beliefs about progress and the importance of giving themselves permission to grieve. Potential barriers to healthy grieving, such as unanswered questions and feelings of regret or guilt, are discussed.

Session five addresses maintaining a connection with their partner, including legacy building and how to continue to parent, while grieving and planning for “firsts” and other special days. A framework for tackling “firsts” is also reviewed and participants were invited to apply their own examples. The final session, “Moving forward,” addresses re-defining who they are now and the possibility of dating again. The concept of building a different path is introduced.

Evaluation

After each session, the facilitators recorded additional topics specific to YAs to be included in the modified version of the curriculum based on group discussion. During the sixth session, the participants completed a brief evaluation asking for feedback about how we could improve the curriculum, including other topics. Their answers were anonymous and no identifying information was collected. In total, there were eight questions on the survey. Three questions were 5-point Likert-type questions that asked the participants to choose the rating that best reflected their opinion. Five questions were open ended and addressed aspects of the group that were most and least helpful, other topics to be included, and any feedback they wanted to share.

Results

Nine bereaved YA partners participated in a 6-session bereavement support group to pilot the curriculum and provide feedback. Six (67%) participants attended all six sessions and three (33%) attended five, with work and childcare issues being the reasons given for missing a session. Six participants were female and three were male, ranging in age from 30 to 43 years. The average time since the death of their partner was 7 months (range 2–18 months) and four participants had dependent children (6 months to 4 years of age).

The goals identified by the participants for attending the group program are listed in Table 2 and include connecting with others and understanding and articulating emotions. Topics specific to YAs that arose throughout the sessions and considered important to add to the YA version of the curriculum are described in the second column of Table 1. Not surprisingly, a common theme related to the language used to express changed identity and roles following the death of their partner. For example, the parents in this group did not like the label “single parent” as they believed it was associated with being divorced or choosing to have a child on one's own. Instead, they preferred the term “solo parent,” which they felt reflected their position more accurately. Given that only half of the participants had children, we also sought their feedback about whether they would prefer to discuss parenting issues as a whole group or to divide into those who had children and those who did not. The group chose to stay together because the participants who were not parents said it was helpful for them to hear the challenges the parents faced, especially as some were very close to nieces and nephews who had also been affected by the death. The facilitators also believed this preference reflected the bond that this group had formed.

Table 2.

Goals of Young Adult Participants in the Pilot Group Program

1. Find connection with others who “get it”

2. Hear how other parents deal with loss

3. Understand and articulate emotions

4. Understand one's needs

5. Learn how to communicate needs with support people in the moment

6. Decrease isolation

7. Accept feelings

8. Charting the course—understanding what to expect

9. Remember the happy times

10. Working out “Who am I now?”

At the end of the sixth session, eight participants completed the evaluation of the program. One participant was absent during this session. The questions asked about the following topics are summarized below:

Isolation

Using a 5-point Likert scale, where one corresponded to “strongly disagree” and five to “strongly agree,” participants were asked the following: “I feel less isolated in my grief after participating in this group.” The average rating was 4.75, indicating that the participants strongly agreed that they felt less isolated after attending the group.

Similar concerns to others

The second question asked was as follows: “I feel like many of my concerns are similar to those of others in the group.” Again, using a 5-point scale, the average rating for this question was 5.0, indicating unanimous agreement.

Discussion topics were relevant to my experience

The question asked was as follows: “I felt the weekly discussion topics were relevant to my experience.” The average rating was 4.75, indicating strong agreement.

Most and least helpful aspects of the group

Two open-ended questions addressed which aspects of the group they found most and least helpful. The first question: “What aspects of the group were most helpful for you?,” identified four themes: 1. Hearing from others like me—being a partner and a caretaker (seven mentions). For example, one participant wrote, “being in a group where everyone was a caretaker for someone who was sick” and another commented that it “felt like I wasn't alone on an island.” 2. Talking and listening (four mentions): one participant said, “I really liked when we brainstormed all that we lost in addition to the actual person.” 3. Topics and strategies (three mentions): for example, “Learning about the waves of grief helped me greatly.” 4. Being in a safe place (two mentions): for example, “The group felt like a safe and honest space to share thoughts and feelings.”

The second question asked was as follows: “What aspects of the group were least helpful?” Four participants said nothing was unhelpful. Other comments referred to wanting more time in each session (sessions were 1.5 hours long) (two mentions), weekly meetings instead of bi-weekly meetings (one mention) and meeting for more sessions (four mentions). Two participants stated they would have preferred to have an opportunity to break into pairs or small groups to learn more about each other.

Other feedback

Five participants expressed appreciation for the group and four said they wished the group could be extended. When the participants were invited to continue as a drop-in group, eight of the nine said they wanted to, given they felt there were limited opportunities in their daily lives to meet other bereaved young partners.

Discussion

Little is known about the needs of YA bereaved partners. Applying a quality improvement framework,^21,22 we adapted the original bereavement support group curriculum used with older bereaved spouses based on CBT^24,25 for specific use with younger bereaved partners at our cancer center. Incorporating feedback from nine YA participants, the 6-session support group curriculum was readily adapted to suit the needs of YA bereaved partners. The group program was evaluated highly by the YA bereaved partners who also provided feedback for improvement throughout the program. In the final evaluation, the participants reported feeling 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 experience (4.75/5). They also expressed a desire for the group to continue, which interestingly is similar to those of older bereaved spouses who also attend bereavement groups at our cancer center, perhaps reflecting the isolating nature of grief and a connection to where their loved one was treated.⁶

Throughout the pilot, we also inquired about other topics for inclusion in the curriculum. Suggestions included being a “solo parent,” maintaining a relationship with in-laws, supporting grieving children while grieving, strategies for dealing with questions from acquaintances, colleagues, and family, and dating and future relationships. At the end of the program, the general consensus was that the group wanted to continue to meet. Both facilitators felt that there was great benefit in continuing the group despite the small numbers, given how little opportunity the participants had in their own lives to meet other bereaved YAs who had lost a partner. As such, a decision was made to transition to a drop-in group format meeting every 3 weeks, welcoming new participants on a rolling basis. To date, we have continued this model, with both original and new participants attending the sessions. Of the nine participants, eight started in the drop-in group and seven continued to participate for the next 2 years. The group currently consists of ∼15 participants, including four from the original group. Reasons for leaving the group included starting a new committed relationship, relocating, and childcare issues.

The drop-in group is facilitated by one clinician only and is unstructured. However, now 3 years later, one clinical challenge is managing the different needs of the participants. For example, it can be difficult having group members who are several years out from their loss talking about their experience of dating, with those members whose partners have just died. While the participants are welcoming and supportive of each other, the drop-in group worked best when the issues were similar. With time, some issues have changed and do not always seem appropriate to the experiences of recently bereaved participants, or in line with our graded-exposure approach.²³ This observation is consistent with the findings of Dyregrov et al.²⁹ who found that bereavement group participants preferred to be with those whose experiences were similar. Another challenge relates to the program content. Because new members have only attended the drop-in group, they have not received the psychoeducation and CBT strategies that the original pilot group members found beneficial.

To address these challenges, we have decided to offer an 8-session closed group twice a year for YAs whose partners have died within the past 18 months with the option to join the drop-in group as an ongoing layer of support. Each closed group will be limited to eight participants and will be facilitated by one clinician, being mindful of our clinical resources. Potential new members are referred by social work or the YAP and will meet individually with the facilitator to screen for readiness to join either group. During this meeting, the challenges of participating in the drop-in group, if recently bereaved, are discussed. Individual support is offered to those YAs who feel it is too soon to join the group. To accommodate the extra topics identified in this pilot, the group will meet for eight sessions and the revised curriculum is shown in the second column of Table 1.

Limitations

This quality improvement project included only one PDSA cycle. It also only included those participants who lived in close geographical distance to DFCI in Boston. Nine individuals participated and we do not have any information about the reasons why people did not participate, other than childcare difficulties. Future considerations would be to offer the modified 8-session group virtually as well as in-person, which potentially would allow us to reach more participants by removing barriers related to distance and childcare. We will continue to seek feedback from the participants of future groups and modify the curriculum as indicated.

Conclusion

The 6-session bereavement support group curriculum for older bereaved spouses based on CBT strategies was readily adapted for use with their younger bereaved counterparts. Utilizing a quality improvement framework, we sought input from a small group of young bereaved adults whose partners had died after receiving care at our cancer center. The YA participants evaluated the program highly stating that they felt less isolated and that their concerns were similar to other group members. Additional topics were identified for inclusion in the revised 8-session version of the curriculum, including dealing with and maintaining a relationship with in-laws, managing the challenges of being a “solo parent,” and approaching the possibility of dating again. While the participants at the completion of the pilot continued to meet as a drop-in group, we are now at the stage to test the next version of the curriculum with a new group of recently bereaved YA partners.

Footnotes

Author Disclosure Statement

No competing financial interests exist for Ms. Souza and Dr. Fasciano. Dr. Morris receives royalties on the sale of her self-help books, Overcoming Grief and An Introduction to Coping with Grief.

Funding Information

There was no funding for this project.

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The Development of a Bereavement Support Group Curriculum for Young Adults Dealing with the Death of a Partner: A Quality Improvement Project

Abstract

Purpose:

Methods:

Results:

Conclusion:

Introduction

Methods

Setting

Group curriculum

Participants

YA pilot curriculum

Evaluation

Results

Isolation

Similar concerns to others

Discussion topics were relevant to my experience

Most and least helpful aspects of the group

Other topics for discussion

Other feedback

Discussion

Limitations

Conclusion

Footnotes

Author Disclosure Statement

Funding Information

References