CALIFORNIA STATE UNIVERSITY, NORTHRIDGE

The Experiences of Bereaved Adults Who Participated

in a Volunteer-Facilitated Grief Support Group

A graduate project submitted in partial fulfillment of the requirements

For the degree of Master of Social Work

By

Amanda Johns Corrigan

May 2020

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The graduate project of Amanda Johns Corrigan is approved:

_______________________________________ __________

Dr. Wendy Ashley Date

_______________________________________ ___________

Dr. Lauren Willner Date

_______________________________________ ___________

Dr. James T. Decker, Chair Date

California State University, Northridge

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Table of Contents Signature Page ii Abstract iv Introduction 1 Method 12 Results 15 Discussion 21 References 23 Appendix A: Recruitment Materials 26 Appendix B: Digital Recording Release Form 27 Appendix C: Exclusion Questionnaire 29 Appendix D: Demographic Questionnaire 30 Appendix E: Participant Instructions 31 Appendix F: Findings Table 32 Appendix G: IRB Approved Adult Consent Form 33

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Abstract

The Experiences of Bereaved Adults Who Participated

in a Volunteer-Facilitated Grief Support Group

By

Amanda Johns Corrigan

Master of Social Work

Purpose: Grief and its effects are often minimized in the United States, as evidenced by

the standard work allowance of only three days’ time off for bereavement. Support

services for grievers are not readily available in all areas, particularly support groups that

are offered outside of hospitals or religious settings. Volunteer-facilitated support groups

are more readily created than professionally-led support groups and may be a more

effective model to increase services for grievers nationwide (Pomery, Schofield, Xhilaga,

& Gough, 2016; Price, Butow, & Kirsten, 2006). However, there is a lack of current,

available research on the impact of volunteer-facilitated grief support groups on its

participants. Research Question: What were the experiences of bereaved persons 18 years

or older who participated in a completed volunteer-facilitated grief support group within

the last five years? Methods: a qualitative, exploratory case study utilizing mixed

methods, incorporating both survey and audial responses. Three (N = 3) bereaved adults,

18 years or older, who previously participated in a volunteer-facilitated grief support

group created digital audio recordings reflecting on their experiences in response to

prompt questions. Results: Common themes were identified and analyzed for insights

into the impact of participating in volunteer-facilitated grief support groups on

participants. Discussion: All three participants viewed their experiences in a volunteer-

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facilitated grief support group positively and described the group as integral to their own

healing. They conveyed a need to have a space to express their feelings and be heard by

others experiencing a similar event. All described the impact of grief in violent terms yet

felt that grief became more manageable over time.

Keywords: Grief, support group, volunteer-facilitated, bereaved, audio, voice recordings

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Introduction

Grief is a universal experience, however, its effects are often minimized in the

United States, as evidenced by the standard work allowance of only three days’ time off

for bereavement. More than just intense sadness, OUR HOUSE Grief Support Center

defines grief as all the thoughts and feelings one has when someone close to them has

died (2019). Support services for grievers are not readily available in all areas,

particularly support groups that are offered outside of hospitals – which can be a trigger

for some grievers – or religious settings, which is also problematic for those who are not

religious, questioning their faith, or simply want to discuss the event outside of religious

context (OUR HOUSE, 2018). Volunteer-facilitated support groups are more readily

created than clinically led support groups and may be a more effective model to increase

services for grievers nationwide (Pomery, Schofield, Xhilaga, & Gough, 2016; Price,

Butow, & Kirsten, 2006). However, there is a lack of current, available research on the

impact of volunteer-facilitated grief support groups on its participants. In designing this

study, the researcher wanted to capture the essence of participatory action research (PAR)

without the burden of asking participants of varying ages to create a video (video voice)

while still allowing them to speak for themselves and share their individual experiences.

Hence, an audio-only (voice) method was utilized in combination with an online survey

in order to screen participants and collect demographic information.

Literature review

Although non-clinically led support groups (peer led, volunteer led, and

volunteer-facilitated support groups) have been offered for decades, comparatively little

research is available on the subject; and what is available is primarily focused on cancer

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support groups. The studies that are published on support groups, including meta-data

analyses, frequently note that additional research is needed in this area (Pomery,

Schofield, Xhilaga, & Gough, 2016)(Price, Butow, & Kirsten, 2006). The same is true for

research specific to grief support groups, both clinician and non-clinician led. In

Dyregrov, Dyregrov, and Johnsen’s 2013 study specific to grief support groups, the

authors wrote that despite the fact that grief support groups are by no means new, “the

amount of empirical documentation for any positive impact on mental or physical health

is meager” (p. 364).

However, “participants value such groups highly and experience benefit from

being part of them” (Dyregrov et al., 2013, p. 364). Pomery et al. (2016) conducted a

meta-data analysis of research from 1984-2014 of cancer peer support groups and

observed that “[p]eer support programs have been found to provide informational and

emotional support benefits, improved wellbeing and high level of satisfaction” (p. 673).

Positive aspects of participating in a grief support group were reported to be meeting with

peers, sharing thoughts and feelings, normalization, exchanging advice and information,

and sharing hope. As reported in Greif (2010), researchers Shulman (2009) and Yalom

(1995) also noted that group members had positive reflections on the “all in the same

boat phenomenon” (a sense that the member is not alone), the discussion of taboo topics,

catharsis, and altruism (p. 563). Giving and receiving support in a safe environment and

having a space to share, cry, show anger, vent, and talk away from friends and family

without fear of astonishment or judgment was also highly valued (Dyregrov, Dyergrov, &

Johnsen, 2014).

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Negative aspects of participating in a support group that have been recorded

include “unfulfilled needs or expectations, additional personal stress, and unsatisfactory

structure, organization, and leadership” (Dyregrov et al., 2014, p. 45). Those with

“prolonged grief were less satisfied with the groups in general” (Dyregrov et al., 2014, p.

47). Interventions are most effective when the participant is actively seeking support

(MacKinnon, Smith, Henry, Berish, Milman, Körner, Copeland, Chochinov, & Cohen,

2014). Overall satisfaction with a grief group experience is connected with met or unmet

expectations that the bereaved had in advance. Therefore, it is particularly important to

clearly convey to group members the aims and limitations of a non-therapeutic grief

support group from the start (Dyregrov et al., 2014).

Non-clinician led support groups are inconsistent in regard to the amount of initial

and ongoing training provided to the group leaders or facilitators. Pomery et al. (2016)

stated that, “[p]eer support models need to be guided by evidence. Leadership

inconsistencies may result in inequities between support groups and access to quality

support.... there is a clear need to establish an evidence-based framework to inform the

selection process of group leaders seeking legitimacy, funding or support from external

agencies” (p. 686 & 673). Although the qualities a group leader brings to the role has an

impact on both that leader and the group’s experience, there are few leader selection

guidelines for agencies, “formal support group leadership training programs,” or “readily

available resources for individuals who volunteer to lead support groups” (Cash,

Kilbourn, & Lageman, 2018, p. 1-2)(Pomery et al., 2016). Research shows that those

leading cancer support groups “often have little training in support group facilitation;”

and there is a distinct “need for ongoing training for both professional and volunteer

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leaders” (Zordon, Butow, Kirsten, Charles, Hobbs, Batterby, Friedsam, & O’Reilly,

2015, p. 262). “Leaders without training experience challenges relating to group

dynamics (e.g., quiet or dominating group members), psychologically unwell members,

and countertransference, particularly when group members’ issues reflect their own”

(Zordon et al., 2015, p. 262).

Research shows that group members are more likely to be aware of the negative

aspects of their groups than the leaders. Unregulated problems can result in unpredictable

attendance and attrition of group members. Key areas where volunteer led grief support

group leaders failed were in conveying their own unresolved grief, insufficient

knowledge about the variations of grief, and lacking competence or knowledge of group

processes (Dyregrov et al., 2014). Problems reported by cancer support group leaders in

Kirsten, Butow, Price, Hobbs, and Sunquist’s 2006 study include difficulty managing

differing communication styles and behaviors in group members (balancing passive or

quiet members with dominators), maintaining hope and optimism with a pessimistic or

negatively thinking member, and encountering a group member that has higher level

clinical needs (p. 772-773). Allowing active members to dominate the group and more

reserved members to become invisible was a leadership mistake mentioned in multiple

studies. Group leaders should avoid spending too much time on one person’s situation

and not allow for endless repetition of a member’s story (rumination) (Dyregrov et al.,

2014)(Greif, 2010, p. 564). A 2002 study conducted within a Social Work with Groups

Association by Maram and Rice reported in Price et al. (2006) discussed common

internal dilemmas encountered by support group leaders. These included: “counter-

transference…self-disclosure, maintaining professional boundaries, giving direct advice,

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and balancing their own needs against those of the group” (p. 657). Greif (2010) observed

that many volunteer support group leaders believe the role to be what they see in movies:

to either direct the group member to an “aha moment” or to serve as a confrontational

figure (p. 563). In reality, a volunteer leaders’ support should be kind, present-oriented,

transparent, and non-confrontational (Greif, 2010). Group leaders primarily “have the

responsibility of raising the glance of the bereaved to see others in the group, and

[helping] them to oscillate during the grief process” (Dyregrov et al., 2014, p. 56).

Well-functioning support groups

Although “[p]eer groups adopt certain aspects of psychotherapeutic and education

programs,” they “should not provide therapy or education” (Pomery et al., 2016, p. 673).

To help guide agencies, National Alliance on Mental Illness (NAMI) created a list of

“eight characteristics of a well-functioning support group”:

1. Has a facilitator skilled in using various elements of structure to counter group resistance and engage participants in group work.

2. Provides ways for the group to “do its own work” so that the facilitator does not dominate the meeting.

3. Involves as many group members as possible in group discussions so that no one group monopolizes the proceedings.

4. Encourages participants to abide by shared behavioral guidelines and to observe them in a self-enforcing way.

5. Allows group members to feel they have contributed something valuable to others in the group.

6. Provides strategies that will circumvent negativity and hopelessness. 7. Connects participants to resources and service organizations in their community,

state, and nation. 8. Makes group members feel they have directly benefited from attending the

support group meeting (Cash et al., 2018, p. 3).

A recurring theme in the literature for a well-functioning group is that both

participants and group leaders should have a “clear concept of the aim, structure, and

effects and limitations of group participation” (Dyregrov et al., 2013, p. 369). This should

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be communicated orally and in written form because grievers often experience reduced

memory capacity. Grievers who have experienced traumatic deaths or have struggled

with high levels of complicated or traumatic grief especially need to understand the

limitations of group prior to joining. For example, that group may not help them “with

their most serious problems, such as traumatic reminders, avoidance behavior, or

flashbacks” (Dyregrov et al., 2013, p. 369).

Research shows that having closed groups that organize members by time since

the death is beneficial. Having new people drop-in who are in different/earlier stages of

their grieving process can be disruptive to members who are further along, and for some,

trigger additional stress and re-traumatization (Dyregrov et. al, 2014). However, the

reverse was shown for the newly bereaved: when they met with those participants who

“had lived with their grief for some time, it often facilitated hope” in them; showing the

newly bereaved that it was possible to move on (Dyregrov et. al, 2014, p. 52). Several

studies also mentioned the importance of separating family members into different

groups, (a) to prevent subgrouping and (b) to allow the individual to process their own

feelings and perspectives regarding the death (MacKinnon et al., 2014)(Walijarvi et al.,

2012). Participants also noted that the ideal time to enter a grief group is 6-12 months

after the death. Grief group participants also preferred more homogenous groups by

grouping people by age and relationship, as well as time since the death (Dyregrov et. al,

2013). “[M]eeting with others who had experienced similar or the same loss was

extremely important to restore the feeling of normality” (Dyregrov et al., 2014).

A 2002 study conducted with the Kansas self-help network by Wituk et al. and

reported in Price, Butow, & Kirsten (2006) noted common reasons support groups

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disbanded: “76% of leaders cited attendance problems, 52% cited problems or changes in

leadership, while 35% said the group was no longer needed. Problems between members

and logistical difficulties were reported by 31% (p. 658). One small 1994 study by

Galinsky and Schopler also identified in Price et al. (2006) noted the most common

negative effects observed by cancer support group leaders were “participants finding the

open communication threatening (45%), a sense of loss when a member leaves (35%),

and feeling overwhelmed (25%)” (p. 656). The most common difficulties they reported

were irregular attendance (75%) and members at different stages (75%).

Suicide survivorship and complicated grief

However, it was observed that the suicide bereaved especially preferred

homogenous groups, including type of death (Dyregrov et. al, 2013). Research has shown

that “survivors of suicide are commonly more depressed than those experiencing other

forms of bereavement” and there is a “strong association between the experience of loss

by suicide and complicated grief” (Supiano, 2012, p. 489-490). There are additional

layers of disenfranchisement, sense-making, personal suicidality, depression, etc., to

suicide survivorship that may make some participants better suited to a clinician led

support group designed to address these concerns (Supiano, 2012)(Groos & Shakespeare-

Finch, 2013). Acknowledging the concept and role of trauma in addition to grief can be

helpful for these participants (Groos & Shakespeare-Finch, 2013). Citing Boelen, de

Keijser, van den Hout, & van den Bout (2007), Walijarvi et al. (2012), stated, “Research

has shown that interventions that include exposure therapy, combined with cognitive

behavioral therapy, are more effective in reducing complicated grief than supportive

therapy alone” (p. 165).

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Screening

Various studies noted the need to screen out participants who have higher level

psychological needs from groups that are not professionally led or do not offer

consultations with mental health professionals. Dyregrov et al. (2013) noted in particular

that those who have “experienced traumatic deaths and experienced traumatic after-

effects (traumatic reminders, avoidance behavior, or flashbacks) or high levels of

prolonged grief disorder (PGD) found little help in groups for those problems” (p. 373).

Referencing additional studies, Dyregrov et al. (2013) encouraged screening for “PTSD,

complicated grief, and status of general physical and psychological health” in order to

ensure the participant receives adequate therapeutic services. They further noted in their

2014 study that those with complicated grief who participate in non-therapeutic groups

are left with insufficient help. The time period established by Davidson (1979) for

uncomplicated grief is six weeks up until two years after the death (MacKinnon et al.,

2014).

Theories and application to group

The importance of meaning-making and creating a more positive personal

narrative came up repeatedly in several studies of clinician led grief support groups

(Walijarvi et al., 2012)(Groos & Shakespeare-Finch, 2013)(MacKinnon et al.,

2014)(Smith, E.E., 2017)(Worden, 2008). Per Neimeyer, Prigerson, and Davies (2002),

“[m]eaning-reconstruction theory posits that therapy is a process of facilitating the bereft

to re-author a life story challenged by loss into a more coherent and purposeful narrative”

(MacKinnon et al., 2014, p. 138). This concept is often incorporated in non-therapeutic

grief support groups, as well, although less directly. OUR HOUSE Grief Support Center

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models their support group program on the four tasks of mourning described in Dr. J.

William Worden’s (2008) book Grief Counseling and Grief Therapy. Worden’s four

tasks are “to accept the reality of the loss” (Task I), “to process the pain of grief” (Task

II), “to adjust to a world without the deceased” (Task III), and “to find an enduring

connection with the deceased in the midst of embarking on a new life” (Task IV) (p. 39-

50). The tasks are not linear and a griever may be in more than one task at a time

(Worden, 2008). Although the tasks are not advertised or provided to the group members

directly, throughout the course of each grief support group, OUR HOUSE volunteer

facilitators provide conversation topics and activities that are designed to assist the group

members as they work through the tasks.

Per Pomery et al. (2016), “Chambers et al. identified six theoretical approaches

(or models) that are specifically relevant to how peer support is expressed and consumed:

social support, the helper-therapy principle, experiential knowledge, social learning

theory, social comparison theory and social identity theory. The essence of peer support

is people seeking out interactions with others who have a similar experience, often as a

way of comparison to establish a sense of normalcy (social comparison theory). Social

support theory can further be used to explain how peer support encompasses emotional,

practical and informational support in a way that facilitates adjustment and engagement

in active coping strategies” (p. 673).

Social support theory also comes into play in Walijarvi et al.’s 2012 pilot study on

an 8-week, curriculum-based clinician led traumatic death support group run by Bo’s

Place in Houston, Texas. The researchers detailed how several theories influenced their

curriculum and explained, “[b]ecause of the lack of evidence indicating a definitive ‘best’

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method for helping the bereaved, and in recognition of the uniqueness of the grief

experience for each individual, the Bo’s Place program purposefully seeks to incorporate

a variety of methods and offers a range of mechanisms so that bereaved individuals may

draw upon the approaches that best meet their unique circumstances and needs”

(Walijarvi et al., 2012, p. 154). Without substantial empirical evidence, grief support

groups’ design and regulation are left to the agencies who offer them.

Aims and objectives

OUR HOUSE Grief Support Center has provided clinician-designed, volunteer-

facilitated grief support groups in the Los Angeles area for over twenty-five years.

They offer grief support, not therapy or counseling, in a nonreligious setting. OUR

HOUSE screens candidates for group appropriateness during a phone interview

followed by an intake session. Currently, they have three locations within Los Angeles,

and one satellite branch in Orange County, California. The agency provides grief

support services to both children and adults. The adult groups are held in-house. Most

groups are closed groups cohorted by age of the group member, relationship to the

deceased, and time since the death of their person. Each group is co-led by two

volunteer facilitators. Unlike the majority of other grief support programs studied in the

research, the OUR HOUSE adult program offers longer-term support. OUR HOUSE

groups run for a minimum of ten weeks (for those whose person died more than a year

prior) and maximum of two years (for parents who experienced the death of an adult or

teenaged child). Most groups offered span longer than six months. Within the

literature, the grief support groups studied typically met only for eight to twelve weeks.

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For this study, adult (18 years and older) alumni of OUR HOUSE grief support

groups from the Los Angeles locations over the past five years were asked about their

experiences with the volunteer-facilitated grief support group. In the vein of

participatory action research, former group members were given prompts and invited to

share their stories in a recorded message in order to allow them to relay and control

their own narratives within this project. The resulting audio may be heard in the

PowerPoint presentation that accompanies this document.

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Method

Participants

Recruitment emails were sent to 906 adult alumni of OUR HOUSE Grief Support

Center who completed a closed (not drop-in) support group with start dates ranging from

January 1, 2015 to December 31, 2019. The alumni completed their groups at either the

West Los Angeles, Woodland Hills, or Koreatown locations of OUR HOUSE Grief

Support Center. Participants were excluded if they were under the age of 18, had received

services for their grief in addition to the support group (i.e.: individual therapy), and/or if

they had become a volunteer grief support group facilitator since the completion of their

group. The study received 45 initial responses to the survey, 22 of which were screened

out due to exclusion criteria – all because the potential participant was also receiving

individual therapy at the time they attended their grief support group (one of whom had

also become a grief support group facilitator). Ultimately, three participants (N = 3)

created voice responses for the study.

Demographically, all three participants identified as white females, one between

18-24 years old, another between 25-34 years old, and the third between 35-44 years of

age. All had experienced the death of their person between 2-3 years ago. Two identified

themselves as not religious, and one preferred not to answer. The length of their

individual support groups varied: one attended a group for 3-6 months, another for 6-9

months, and another for 12-18 months.

Research Design and Measures

This is an exploratory, qualitative case study that utilized a mixed methods

approach, incorporating both survey and audial responses. Much like video voice

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research (PAR), the intent of the study was to empower participants to be heard in their

own words and contribute their narrative to the study. Given that OUR HOUSE Grief

Support Center offers groups to all ages, including the elderly, conducting the study in a

video voice format was viewed to be too much of a burden on potential participants, and

a “voice only” alternative was devised. The researcher had no contact with participants.

Participants first completed an online exclusion questionnaire (three questions, see

Appendix C), an adult consent form (see Appendix G), a digital audio release form (see

Appendix B), followed by a six-question demographic survey (see Appendix D). The

participant then received instructions that included eight prompt questions and a phone

number, where they could leave audial responses on an extended voicemail (see

Appendix E). The questions were written by the researcher in an effort to gain greater

understanding of participants’ perspective on their grief experience, the role of a

volunteer-facilitated grief support group in their process, and what they found to be most

helpful in their grief.

Submissions

Participants were each given a color pseudonym (Red-Orange, Purple, and

Turquoise). Reviewers may listen to the participants’ audio responses in this study’s

accompanied PowerPoint presentation. Each participant’s pseudonym corresponds with

the color of the button listeners may click within that presentation to playback the

participant’s response to each question. In total, Red-Orange submitted a 5 minute, 39

second voicemail; Purple submitted an 8 minute, 39 second voicemail; and Turquoise

submitted a 15 minute and 5 second-long voicemail.

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Method of Analysis

The researcher listened to each voicemail repeatedly, first transcribing each

message, then breaking up the responses to individual questions. After transcription, the

researcher coded the responses in two phases. The first phase used In Vivo coding,

focusing on the actual spoken words of the participants – not just on what was said, but

how the participants said it; the emotion and importance conveyed within the voice

response (Manning, 2017). The second phase of coding was content analysis, specifically

to identify commonalities and themes amongst the participants (Rubin & Babbie, 2011).

The In Vivo coding was performed in Microsoft Word, by highlighting and color coding

the transcription while listening to the audio playback through Quicktime. Once In Vivo

coding was complete, content analysis began, which was also conducted using Microsoft

Word.

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Results

Within their responses, all three participants conveyed the overwhelming nature

of their grief and the complicated mix of emotions and thoughts that the umbrella term

“grief” includes. Participant Purple shared, “Grief to me is still an unimaginable and all-

encompassing emotion. And even though I've gone through grief, I still have trouble

imagining it, which might sound ridiculous.” All three participants reflected positively on

their experiences within a volunteer-facilitated grief support group and expressed that the

group was integral to their healing process. As to group activities, both Turquoise and

Purple cited the activity where they brought in pictures and presented their loved one to

the group as being valuable, and Red-Orange felt that, in general, the activities that had

her write down her emotions and each meeting’s closing poem were most helpful (a

grief-related poem is read collectively at the end of each OUR HOUSE support group

meeting).

When asked about the role of their group leaders, participants level of enthusiasm

varied. One participant (Red-Orange) referred to her group leaders as being “the most

important people in [her] journey” who helped her “gain perspective.” Both Purple and

Turquoise commented on the leaders’ importance as group moderators, and Turquoise

noted that her group leader was validating. Purple’s tone of voice conveyed mixed

emotions towards the group leaders and she expressed a desire to know their personal

stories [OUR HOUSE follows a non-disclosure model for group facilitators, with the

intent of keeping the group’s focus on the group itself and preventing group members

from turning to or treating group facilitators as authorities on the grief experience

(2018)].

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When asked what they found to be most helpful and unhelpful throughout their

journeys with grief, the participants all responded differently. Red-Orange said being

surrounded by family and staying in contact with the support group were the most

helpful, while friends claiming to be there for her then not following through were the

most unhelpful. Purple said that talking was the most helpful, while the most unhelpful

was feeling obligated to attend grief support group despite having “a good day” (OUR

HOUSE discourages group members from missing too many meetings in order to protect

the emotional safety of the group, and to stress the importance of giving support as well

as receiving it)(2018). Turquoise named “keeping the conversation alive” around her

mother (her person who died) and discussing both the positive and negative memories

and emotions she held towards her mother as being the most helpful. As for unhelpful,

Turquoise cited other people within her life projecting their personal religious beliefs and

coping mechanisms onto her.

Themes

The In Vivo and content analysis coding produced a common list of themes across

responses. Themes identified include: the impact of grief, feelings, the benefits of support

group, and healing (see Table 1 on page 17 or in Appendix F).

The impact of grief. When participants were asked how they would describe

grief, a notable theme throughout the responses was how hard and violent the grief

experience can be. Purple called grief “such a heavy weight to bear.” Red-Orange shared

that death “hits you” and that the other part of her heart or soul was gone, which she

didn’t believe could be repaired. Turquoise compared the grief experience to being

kidnapped and taken hostage; one, because grief’s impact is so (continued on page 18)

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Table 1

THEME

RED-ORANGE

PURPLE TURQUOISE

IMPACT OF GRIEF How hard it is/violent experience x x x Being unable to prepare / unpredictable / it “hits you”

x x x

Permanently life-altering x x x FEELINGS Grief is all-encompassing x x x All feelings are valid & a need to have feelings normalized

x x x

A need to talk and express feelings, positive and negative

x x

Relationships are complicated x x x Death feels surreal x

BENEFITS OF SUPPORT GROUP Meeting people who have been through the same thing

x x x

Not feeling alone/being seen x x x Importance of receiving support from others

x x x

Importance of witnessing the experience of others

x x x

Importance of being the supporter x Group facilitator support x x Group helped the participant understand feelings of family members

x

HEALING Grief never ends but becomes manageable

x x x

Importance of group to healing x x x Sharing about your person keeps their memory alive

x x

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unexpected; two, because it is so frightening and threatening; and finally:

It’s also a lot like being kidnapped because you don't know where it's going to take you and you don't know how long it will be until you get to go back home to your normal life, or if you will ever make it back home to your normal life, or if you can even have a normal life after this event. So, a lot of people describe the grief as being like a rollercoaster, but, I honestly, I feel like it's more like getting kidnapped because you didn't sign up to go on this ride. It just happened.

The idea that grief is something one is unable to prepare for, whether a death is expected

or not, was common throughout all responses; as well as the fact that it is a life-altering

experience. Participants noted that they could divide their life experience by the death of

their loved one (when their person was alive versus after they had died).

Feelings. All three participants expressed the critical role of discussing their

feelings and having them normalized and validated by their support groups. They also

expressed that in their experience, grief was all-encompassing. As Purple detailed, “For a

long time, it is the only emotions that you identify with. For a while, it was, if someone

asked how I was doing, my answer was, ‘I lost my father.’ That was the only thing that

came to my mind as a way to describe myself.” All three participants either indicated or

expressly commented on the complicated nature of relationships, in life and in death.

With that, they had a need to share both positive and negative feelings they held directed

toward their person who died or were personally experiencing.

The benefits of support group. Their volunteer-facilitated grief support group

gave participants the opportunity to meet others who were going through a similar

experience. All participants reported feeling less alone after joining their support group

and feeling seen by their peers. Turquoise referred to the group as a “safe space.”

Participants shared the importance of having their own stories heard and receiving the

support of others, as well as the validating and normalizing benefits of witnessing the

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experiences of their peers. One participant (Purple) expressly called out the role of giving

support as well as receiving it. Another group member (Turquoise) shared that group

helped her to understand what her family members may be feeling, as they were not

experiencing the death in the same way:

[E]ven if you have family who has also experienced this loss with you, just because you’re both grieving it doesn't mean that you're grieving together because there's so many different ways that grief can take form and you may end up diverging at the time when you would expect to have their support most. I think that witnessing different experiences of grief through strangers, who may later become friends, I might add, actually helped me to get a better understanding of what some of my family might have been going through when I felt like we were disconnecting in that way. Healing. The participants relayed that being in a support group helped them move

through their grief process and felt that it was important to their healing. Within their

responses to this study, the participants described what it was like for them at various

stages of their journey, which can be corresponded to the four tasks of mourning outlined

by Dr. J. William Worden’s (2008) book Grief Counseling and Grief Therapy. Although

the tasks are not linear, Task IV, “to find an enduring connection with the deceased in the

midst of embarking on a new life,” is regarded as a later-stage task (p. 50). Two

participants, Purple and Turquoise, specifically said that sharing about their person helps

them keep their person’s memory alive. Turquoise explained how group gave her the

space to do that:

People stop bringing up your loved one, because they think it's gonna [sic] make you sad and they don't really understand that it's that continuous conversation about them that keeps them alive.

Through her support group, Purple found a way to incorporate this idea into her everyday

life:

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I realized that the only way to keep him alive and here with us is to talk about him, and tell his stories, and share his funny comments and, and present his life to others. And that would be my insight: is there's a spark that they leave behind and it’s our duty to keep that spark lit. And… I'm trying every day to do that for him. And I am now way more perceptive to listening to other people talk about their loss because they're just keeping their person alive and I will always want to hear about somebody's life that I did not have the ability to meet.

All three participants shared that although grief never ends, it does become more

manageable.

When asked if they had advice or insights to share with the newly bereaved, both

Red-Orange and Purple encouraged others to get into a grief support group. Red-Orange

suggested taking time for yourself and surrounding yourself with supportive people

(friends, family, group members). She also encouraged grievers not to feel like a burden

on others. The participants noted that although everyone’s grief experience is different,

and it is unpredictable, everything one may feel in the wake of a death is valid. All three

ended with the hopeful message that with time, living with grief becomes easier to do

each day.

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Discussion

The common themes of the tremendous impact of grief and the overwhelming and

wide variety of feelings that grief encompasses indicate that for some, grief is much more

oppressive and debilitating than is often acknowledged by American society. The themes

of the benefits of peer support and healing indicate that the volunteer-facilitated grief

support groups attended by the participants provided them with a safe forum to express

these feelings and experience a sense of normalcy and validation that helped them

progress through their grief. Participant responses imply that, in their experience, the

OUR HOUSE grief support model was effective.

Limitations

There are several limitations to this study. All three participants were white

women under the age of 45, representing only a narrow segment of the population. As a

qualitative case study with a small sample size, the results cannot be used to draw

conclusions about the general population or the OUR HOUSE program as a whole. Also,

participants were recruited from OUR HOUSE’s alumni list which any former group

members who were dissatisfied with their support group experience may have opted out

from. Additionally, there were likely inherent design flaws to this study leading to the

low response rate. Many people are referred to grief support groups by individual

therapists and would therefore have been excluded from this study. The lengthy details of

the study process in the recruitment email may have been too overwhelming for potential

participants or created the assumption that participation would take more time and effort

than actually required. Participants also may have missed the directive to download a

copy of the prompt questions, which may account for those who completed the online

22

section but did not call and leave an audio response. The PAR portion of the study may

have intimidated those potential participants who are shy or value their privacy. Data

collection also occurred during the worldwide COVID-19 outbreak, which may have also

been a deterrent for potential participants.

Conclusion

The intent of this research study was twofold: (1) to allow participants to share

their personal narrative with the idea that, in line with Neimeyer, Prigerson, and Davies’

(2002) meaning-reconstruction theory, over time and through support participants have

been able to shape their stories into “a more coherent and purposeful narrative”; and (2)

to help reduce the deficit of literature regarding volunteer-facilitated and grief support

groups (MacKinnon et al., 2014, p. 138). Objective (1) was accomplished for the three

people that participated, but unfortunately, due to low response, objective (2) was not. If

the researcher were to replicate the study, they would eliminate the PAR element and

solely distribute an online questionnaire, allowing the participants to free write responses

to the prompt questions in hopes of encouraging broader participation.

However, in listening to the stories shared by the participants, observers can hear

for themselves the devastating emotional impact a death may have on a person. Allowing

grievers to discuss the deceased in an ongoing manner – not avoiding the subject out of

fear of making them sad – may help grievers keep their person’s memory alive. Providing

a nonjudgmental, volunteer-facilitated safe space for the bereaved to share their feelings

with appropriate moderation and guidelines may be beneficial to their healing process.

23

References

Cash, T., Kilbourn, C., & Lageman, S. (2018). Training neurodegenerative disease

support group leaders: A new support group functioning scale. Gerontology and

Geriatric Medicine, 4. doi: 10.1177/2333721418811755

Dyregrov, K., Dyregrov, A., & Johnsen, I. (2013). Participants' recommendations for the

ideal grief group: A qualitative study. OMEGA: Journal of Death and Dying,

67(4), 363-377. doi: 10.2190/OM.67.4.b

Dyregrov, K., Dyregrov, A., & Johnsen, I. (2014). Positive and negative experiences

from grief group participation: A qualitative study. OMEGA: Journal of Death

and Dying, 68(1), 45-62. doi: 10.2190/OM.68.1.c

Greif, G. (2010). Ten steps in training volunteer support group facilitators. American

Journal of Alzheimer's Disease and Other Dementias, 25(7), 562-565. doi:

10.1177/1533317510382288

Groos, A., & Shakespeare-Finch, J. (2013). Positive experiences for participants in

suicide bereavement groups: A grounded theory model. Death Studies, 37(1), 1-

24. doi: 10.1080/07481187.2012.687898

Kirsten, L., Butow, P., Price, M., Hobbs, K., & Sunquist, K. (2006). Who helps the

leaders? Difficulties experienced by cancer support group leaders. Supportive

Care in Cancer, 14(7), 770-778. doi: 10.1007/s00520-005-0896-2

Mackinnon, C., Smith, N., Henry, M., Berish, M., Milman, E., Körner, A., Copeland, L.,

Chochinov, H., & Cohen, S. (2014). Meaning-based group counseling for

bereavement: Bridging theory with emerging trends in intervention research.

Death Studies, 38(3), 1-8. doi: 10.1080/07481187.2012.738768

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Manning, J. (2017). In vivo coding. The International Encyclopedia of Communication

Research Methods. doi: 10.1002/9781118901731.iecrm0270.

OUR HOUSE Grief Support Center. (2018). Volunteer training, adult program. Training

program presented at OUR HOUSE Grief Support Center, Los Angeles, CA.

OUR HOUSE Grief Support Center. (2019). OUR HOUSE School program: Intake

assessment script. Training document. Los Angeles, CA.

Pomery, A., Schofield, P., Xhilaga, M., & Gough, K. (2016). Skills, knowledge and

attributes of support group leaders: A systematic review. Patient Education and

Counseling, 99(5), 672-688. doi: 10.1016/j.pec.2015.11.017

Price, M., Butow, P., & Kirsten, L. (2006). Support and training needs of cancer support

group leaders: A review. Psycho‐Oncology, 15(8), 651-663.

https://doi.org/10.1002/pon.1009

Rubin, A., & Babbie, E. (2011). Research Methods for Social Work, 8th edition. Belmont,

CA: Thomson Brook/Cole.

Smith, E. E. (2017). There's more to life than being happy [video file]. Retrieved from

https://www.ted.com/talks/emily_esfahani_smith_there_s_more_to_life_than_bei

ng_happy?language=en

Supiano, K. (2012). Sense-making in suicide survivorship: A qualitative study of the

effect of grief support group participation. Journal of Loss and Trauma, 17(6),

489-507. doi: 10.1080/15325024.2012.665298

Walijarvi, C., Weiss, A., & Weinman, M. (2012). A traumatic death support group

program: Applying an integrated conceptual framework. Death Studies, 36(2),

152-181. doi: 10.1080/07481187.2011.553344

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Worden, J. W. (2008). Grief counseling and grief therapy: A handbook for the mental

health practitioner, 4th edition. New York: Springer Pub.

Zordan, R., Butow, P., Kirsten, L., Charles, M., Hobbs, K., Batterby, E., Friedsam, J.,

O’Reilly, A., and Juraskova, I. (2015). Supporting the supporters: A randomized

controlled trial of interventions to assist the leaders of cancer support groups.

Journal of Community Psychology, 43(3), 261-277. doi: 10.1002/jcop.21677

26

Appendix A

Recruitment Materials

We need your VOICE! At OUR HOUSE Grief Support Center, our mission is to provide the community with grief support services, education, resources, and hope. In line with this vision, we have an exciting opportunity to participate in academic research and need to hear from you! Your experience matters! Amanda Corrigan, a researcher from the Social Work department at California State University, Northridge, is conducting a qualitative study on the experiences of adults who participated in a grief support group at OUR HOUSE within the last five years. You are invited to participate in the study if you are receiving this email and only received services for your grief through OUR HOUSE Grief Support Center. The study consists of two parts: (1) a brief online survey, and (2) a voicemail audio recording of your experiences. The research has been approved by CSUN’s Institutional Review Board (IRB). Although your name will be redacted and steps taken to conceal your identity, the study includes an audio recording of your voice which is considered identifiable information and not confidential. The recording may be played before an audience as part of the study presentation. This study will not only help our program, but potentially be applied worldwide to assist social workers, doctors, nurses, hospice workers and laypersons in providing effective support to grievers around the globe. To participate, simply click on the link below. You will be directed to:

• A consent form • A digital audio release form • A brief demographic questionnaire • A prompt page with eight questions. You will be given a phone number and asked to

leave a voice message with your responses once you are ready. You may call anytime in the next three weeks to leave your recording.

The consent form, release form, and demographic questionnaire will take approximately 10 minutes of your time. The length of your verbal responses is entirely dependent on how much of your story you would like to share. There is no minimum or time limit. The researcher wants to hear your experience and opinions. If you have any questions regarding the study, please contact amanda.corrigan.793@my.csun.edu. You can access the study through this link: https://csunsbs.qualtrics.com/jfe/form/SV_aWRXA2ftdwKMNsF Thank you for taking the time to give back and make an important contribution to the field of grief support.

27

Appendix B

DIGITAL RECORDING RELEASE FORM FOR ADULT RESEARCH PARTICIPANTS

California State University, Northridge

The Experiences of Bereaved Adults Who Participated in a Volunteer-Facilitated Grief Support Group

This research project includes digital audio recordings. These recordings are needed for research. These recordings may be used in creative and scholarly works that may be available to the public, such as a research publication or presentation, in promotional materials, or in interviews. If you have any questions, the researcher named below will be available to answer them.

I consent to release the digital recording of my voice.

□ Yes □ No

I, the undersigned participant, hereby give Amanda Johns Corrigan specific permission to publish, copyright, distribute digital recordings of me that have been created as part of the study referenced above under the following conditions:

1. The digital recording can be used for educational or scientific purposes.

□ Yes Initial __________ □ No

2. The digital recording can be posted to a website, used in a podcast, or otherwise broadcasted.

□ Yes Initial __________ □ No

3. The digital recording can be used in public presentations to non-scientific groups.

□ Yes Initial __________ □ No

Prior to submitting your digital audio recording, you are free to withdraw your permission to use your recording at any time without penalty.

By signing below, I acknowledge that: 1) I have read this agreement carefully; 2) any questions I have about the use of my digital recording have been answered to my satisfaction; 3) any additional changes or restrictions that I have requested have been

28

added in writing to this document; and that 4) I have been given a copy of this form, including any changes or restrictions, initialed by me.

I understand and agree to the conditions outlined in this digital recording release form. I have read the above information and give my consent for the use of digital recordings of me by initialing in the selected sections above.

By signing below, you are signing that you have read and agree to the terms of the "Digital Release Form" provided on the previous page. I agree to participate in the study. Using your cursor, please sign below: _________________________________________ Please type today's date: mm/dd/yyyy (example: 01/15/2020) _________________________________________

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Appendix C

Exclusion Questionnaire Are you over 18?

□ Yes

□ No

Did you receive any services for your grief in addition to attending an OUR HOUSE Grief Support group (i.e.: did you attend any other support groups or seek outside counseling or therapy)?

□ Yes

□ No

In the time since your grief support group has ended, have you become a volunteer group leader with OUR HOUSE Grief Support Center?

□ Yes

□ No

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Appendix D

Demographic Questionnaire 1) What is your age?

� 18-24 years old � 25-34 years old � 35-44 years old � 45-54 years old � 55-64 years old � 65-74 years old � 75 years or older

2) Please specify your ethnicity (if multi-racial, select all that apply):

� White � Latinx or Hispanic � Black or African American � American Indian or Alaska Native � Asian or Pacific Islander � Other

3) What is your gender?

� Male � Female � Non-binary

4) Do you identify as religious?

� Yes � No � Prefer not to answer

5) How long has it been since the death of your person (that you attended group for)?

� Less than a year � 1-2 years � 2-3 years � 4 years or longer

6) How long did you attend your support group?

� Less than 3 months � 3 to 6 months � 6 to 9 months � 9 to 12 months � 12 to 18 months � 18 to 24 months

31

Appendix E

Participant Instructions

Please review the following questions. You may proceed through to the next (final) page prior to calling. *** The questions are available for download below. You are highly encouraged to download the questions before proceeding. *** When you are ready, call 818-949-2785 and leave your responses on the voicemail line. Take as much time as you need to answer each question; there is no time limit or minimum. If you are disconnected at any time, simply call back and continue where you left off. 1) How would you describe grief? 2) What impact did participating in a volunteer-facilitated support group have on your grief? 3) Were there any activities or particular conversations in your support group that changed your perspective? 4) Throughout your journey with grief, what have you found to be most helpful? 5) What have you found to be unhelpful? 6) What role, if any, did your group leaders play in your journey? 7) What message would you share with the newly bereaved? 8) Any other insights or suggestions you would like to share? You may download a copy of these questions for your reference here: BEREAVED STUDY QUESTIONS.pdf Please provide the phone number you will be calling from: This number will be used for the sole purpose of linking your consent and survey responses to your voice recording and will not be distributed. By providing this number, you will not need to state your name at any point during the recording. Your phone number will be deleted from our records entirely within 90 days of receipt. ____________________

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Appendix F

Findings Table Table 1

THEME

RED-ORANGE

PURPLE TURQUOISE

IMPACT OF GRIEF How hard it is/violent experience x x x Being unable to prepare / unpredictable / it “hits you”

x x x

Permanently life-altering x x x FEELINGS Grief is all-encompassing x x x All feelings are valid & a need to have feelings normalized

x x x

A need to talk and express feelings, positive and negative

x x

Relationships are complicated x x x Death feels surreal x

BENEFITS OF SUPPORT GROUP Meeting people who have been through the same thing

x x x

Not feeling alone/being seen x x x Importance of receiving support from others

x x x

Importance of witnessing the experience of others

x x x

Importance of being the supporter x Group facilitator support x x Group helped the participant understand feelings of family members

x

HEALING Grief never ends but becomes manageable

x x x

Importance of group to healing x x x Sharing about your person keeps their memory alive

x x

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Page 1 of 4

California State University, Northridge CONSENT TO ACT AS A HUMAN RESEARCH PARTICIPANT

The Experiences of Bereaved Adults Who Participated in a

Volunteer-Facilitated Grief Support Group You are being asked to participate in a research study, The Experiences of Bereaved Adults Who Participated in a Volunteer-Facilitated Grief Support Group, a study conducted by Amanda Johns Corrigan as part of the requirements for the Master’s degree in Social Work. Participation in this study is completely voluntary. Please read the information below and ask questions about anything that you do not understand before deciding if you want to participate. The researcher listed below will be available to answer your questions.

RESEARCH TEAM Researcher:

Amanda Johns Corrigan Department of Social Work

18111 Nordhoff St. Northridge, CA 91330-8226

310-729-4592 amanda.corrigan.793@my.csun.edu

Faculty Advisor:

James Decker, Ph.D. Department of Social Work

18111 Nordhoff St. Northridge, CA 91330-8226

818-677-3710 jdecker@csun.edu

PURPOSE OF STUDY The purpose of this research study is to explore the impact of volunteer-facilitated grief support groups on the bereaved. Asking former participants their perspective on their grief experience, the role of the support group in their process, and what they found to be most helpful throughout their journey with grief may assist social workers, doctors, nurses, hospice workers and laypersons in providing effective support to grievers. SUBJECTS Inclusion Requirements You are eligible to participate in this study if you are at least 18 years of age or older and were a member of an adult grief support group run by OUR HOUSE Grief Support Center that finished within the last five years. To be included in this study, you must consent to a voice recording. This recording may be replayed as part of the presentation of this study. Exclusion Requirements You are not eligible to participate in this study if you sought outside services (such as therapy, counseling, or another grief support group) in addition to those provided by OUR HOUSE Grief

California State University NorthridgeIRB-FY20-52Approved on 1-31-2020Expires on 1-30-2021

Appendix G

IRB Approved Adult Consent Form

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Page 2 of 4

Support Center. You are also ineligible if you became a volunteer group leader with OUR HOUSE upon completion of your support group, if you are under the age of 18, or if you do not wish to have your voice recorded. Time Commitment This study will require approximately 15 to 30 minutes of your time, to be completed on your own schedule within the next 3 weeks. PROCEDURES The following procedures will occur:

1. You will review this consent form. Please contact the researcher listed above if you have any questions or need clarification. You may contact the researcher at any time throughout the next seven steps.

2. After submitting your digital signature consenting to participate, you will be directed to a digital release form. Please digitally sign your consent.

3. After submitting your digital release form, you will be directed to a brief demographic information survey. It will take approximately 3 minutes to complete.

4. You will then be provided with instructions and several prompt questions. When you are ready, please call the phone number provided and leave an audio response to each question. The length of your responses is entirely dependent on how much of your story you would like to share. There is no minimum or time limit. The researcher wants to hear your experience and opinions.

5. Once your voice recording is received, the researcher will download the recording and store it on a password protected personal computer.

6. The researcher will listen to, transcribe, code, and analyze your recording along with other submissions. The researcher will use that analysis to write a research paper.

7. Some of the analyzed data including excerpts of the actual digital audio recordings submitted may be selected to be played, published, or exhibited as part of the presentation of this paper.

8. Within one year, any written personal identifying information will be destroyed, although analyzed data, including the digital audio recordings submitted, will be held securely by the researcher indefinitely. Steps will be taken to keep your responses anonymous, but your voice is considering identifiable information, therefore confidentiality is not guaranteed.

RISKS AND DISCOMFORTS The possible risks and/or discomforts associated with the procedures described in this study include: feeling uneasy, upset, sad, or uncomfortable from sharing personal stories. The digital audio recording of your voice is considered identifiable information, so there is a risk of the loss of privacy. In case any part of your participation brings up psychological or emotional discomfort, you will be provided with phone numbers to support and helplines. This study involves no more than minimal risk. There are no known harms or discomforts associated with this study beyond those encountered in normal daily life.

California State University NorthridgeIRB-FY20-52Approved on 1-31-2020Expires on 1-30-2021

35

Page 3 of 4

Crisis support, helplines, and warmlines:

1) OUR HOUSE Grief Support Center: (310) 473-1511 2) LA Warmline: (855) 952-9276 3) Project Return Warmline: (888) 448-9777 4) ACCESS-LA County Helpline: (800) 854-7771 5) National Suicide Prevention Lifeline: (800) 273-8255 6) 9-1-1 7) NAMI National Helpline: (800) 950-6264 8) Didi Hirsch Mental Health Services: (888) 807-7250

BENEFITS Subject Benefits There are no direct benefits to research participants. Benefits to Others or Society There is a benefit to society by contributing to the literature and broader knowledge base on grief support and volunteer-facilitated support groups, and possible improvement in a program, organization, or agency that serves adult grievers. ALTERNATIVES TO PARTICIPATION The only alternative to participation in this study is not to participate. COMPENSATION, COSTS AND REIMBURSEMENT Compensation for Participation You will not be paid for your participation in this research study. Costs You will be responsible for all costs, if any, incurred from your phone carrier for leaving a voicemail message. Reimbursement You will not be reimbursed for any out of pocket expenses. WITHDRAWAL OR TERMINATION FROM THE STUDY AND CONSEQUENCES You are free to withdraw from this study at any time prior to submitting your audio recording. If you decide to withdraw from this study you should notify the research team immediately. The research team may also end your participation in this study if you do not follow instructions, or if your safety and welfare are at risk. CONFIDENTIALITY Subject Identifiable Data All identifiable information that will be collected about you will be removed at the end of data collection. Any digital audio recordings submitted by you will be considered identifiable information and are not confidential, however, the researcher will take steps to protect you from being publicly identified from the publication or presentation of this research. Your name will not be used.

California State University NorthridgeIRB-FY20-52Approved on 1-31-2020Expires on 1-30-2021

36

Page 4 of 4

Data Storage All research data will be stored on a laptop computer that is password protected. The digital audio recordings will also be stored on a laptop computer that is password protected and transcribed prior to May 31, 2020. The unused coded audio recordings will be destroyed by May 31, 2023, while select coded audio clips will be retained indefinitely with the other research data. Data Access The researcher and faculty advisor named on the first page of this form will have access to your study records. Any information derived from this research project that personally identifies you will not be voluntarily released or disclosed without your separate consent, except as specifically required by law. Printed publications that result from this study will not include identifiable information about you. Data Retention The researchers intend to keep your original data until May 31, 2020 and then it will be destroyed, although most analyzed data will be held indefinitely. Unused coded audio files will be destroyed by May 31, 2023. Select coded audio clips will be retained indefinitely for presentation purposes. Mandated Reporting Under California law, the researchers are required to report known or reasonably suspected incidents of abuse or neglect of a child, dependent adult or elder, including, but not limited to, physical, sexual, emotional, and financial abuse or neglect. If any researcher has or is given such information in the course of conducting this study, he or she may be required to report it to the authorities. IF YOU HAVE QUESTIONS If you have any comments, concerns, or questions regarding the conduct of this research please contact the research team listed on the first page of this form. If you have concerns or complaints about the research study, research team, or questions about your rights as a research participant, please contact the Research and Sponsored Programs office, 18111 Nordhoff Street, California State University, Northridge, Northridge, CA 91330-8232, by phone at (818) 677-2901 or email at irb@csun.edu. VOLUNTARY PARTICIPATION STATEMENT You should not sign this form unless you have read it and been given a copy of it to keep. Participation in this study is voluntary. You may refuse to answer any question or discontinue your involvement at any time without penalty or loss of benefits to which you might otherwise be entitled. Your decision will not affect your relationship with California State University, Northridge. Your digital signature below indicates that you have read the information in this consent form and have had a chance to ask any questions that you have about the study. I agree to participate in the study. □ Yes □ No

California State University NorthridgeIRB-FY20-52Approved on 1-31-2020Expires on 1-30-2021