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Creating Philanthropic Foundations to Deal With Grief: Case Studies of Bereaved Parents Kelly R. Rossetto
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Department of Communication , Boston College , Chestnut Hill , Massachusetts , USA Accepted author version posted online: 16 Apr 2014.Published online: 21 May 2014.
To cite this article: Kelly R. Rossetto (2014) Creating Philanthropic Foundations to Deal With Grief: Case Studies of Bereaved Parents, Death Studies, 38:8, 531-537, DOI: 10.1080/07481187.2014.899652 To link to this article: http://dx.doi.org/10.1080/07481187.2014.899652
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Death Studies, 38: 531–537, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print=1091-7683 online DOI: 10.1080/07481187.2014.899652
Creating Philanthropic Foundations to Deal With Grief: Case Studies of Bereaved Parents Kelly R. Rossetto
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Department of Communication, Boston College, Chestnut Hill, Massachusetts, USA
The current study involves the analysis of six bereaved parents’ stories and argues that the development of philanthropic foundations helped these parents make meaning of their children’s deaths and find purpose in the midst of their grief. Furthermore, philanthropy, as a way of making meaning and finding purpose, is a mutually beneficial process because it helps both the bereaved founders and the communities the organizations reach. Connections between these narratives and the bereavement literature help us better understand the individual=family grief process and meaning making, as well as how internal grief states intersect with communities.
The death of a loved one precipitates life reorganization for the bereaved person. As grief, sadness, and despair commence, the tasks of grieving can help the bereaved re-establish equilibrium (Janoff-Bulman, 1992) and restore a balance in life (Worden, 1991). Making meaning helps bereaved individuals find a place within a world re-centered by death. It plays a central role in the process of adjusting to loss and trauma because it serves to maintain two aspects of our sense of self that often are most threatened: our self-worth and our fundamental beliefs about how the world works (Davis & Nolen-Hoeksema, 2001). Making sense of the loss in terms of pre-existing assumptions about the world can involve viewing the death as predictable, consistent with the deceased person’s view on life, and spiritually or religiously explainable (Davis & Nolen-Hoeksema, 2001). In previous studies, high levels of meaning making predicted adaptive grief outcomes early in bereavement (Neimeyer, Baldwin, & Gillies, 2006). Finding purpose is another important aspect of the grief process, which typically comes after meaning Received 23 October 2013; accepted 17 February 2014. The current article comes from data collected for her thesis research directed by Dr. Stephen Yoshimura at the University of Montana, Missoula. An initial version of the article was presented at the National Communication Association conference. Address correspondence to Kelly R. Rossetto, Department of Communication, Boston College, 21 Campanella Way, Maloney Hall #519, Chestnut Hill, MA 02467. E-mail: [email protected]
making (Neimeyer, 2000). Finding purpose can include seeking perceived benefits (Davis & Nolen-Hoeksema, 2001; Janoff-Bulman, 1992), creating or discovering the significance of an event and its implications (O’Connor, 2003), and finding value and justification for loss (Baumeister & Newman, 1994). Perceived benefits include, but are not limited to, character growth, perspective gain, and strengthened relationships (Davis & Nolen-Hoeksema, 2001). Higher levels of finding benefit and positive identity reconstruction correlate with lower complicated grief (Neimeyer et al., 2006). Through the processes of meaning making and finding purpose, bereavement prompts learning about the self and the world (Attig, 1996) from a new and unfamiliar perspective. Learning about the self and the world implies that bereaved individuals’ internal feelings of grief intersect with their social place in the world (Neimeyer, 2002). In times of stress, individuals find global meaning, which involves how family members view their internal family relationships and external community relationships (Patterson, 1988). These meanings often involve culture, religion, and identity, and they shape how families function and cope with stress (Patterson, 2002). Although global meanings embed families within a societal and cultural context, definitions of global meaning do not take into account the reciprocal effect meaning making in a family can have on society. Current conceptualizations of meaning
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making offer very little regarding outcomes of grief and their impact on the community. A previous analysis of 11 interviews revealed that two couples and two individuals developed their own philanthropic organizations following the deaths of their children (Rossetto, 2006). Connecting these narratives with the literature on grief and meaning making can help us better understand individual and family grief processes as well as how internal grief states intersect with the external world, which is the purpose of the current study. METHOD
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Background The current study stems from a broader project, which involved 11 in-depth interviews with seven mothers and four fathers whose children died (Rossetto, 2006). Support group facilitators informed participants about the project; other participants heard about the project through word of mouth and volunteered to share their experiences. Couples were given the choice to participate in the interviews individually or together. The narratives that form the current cases for analysis come from interviews with four bereaved mothers and two bereaved fathers who cocreated three separate foundations to honor their deceased children (names and organization names have been changed to protect confidentiality). Tammi and Ray, who participated in a joint interview, established Nora’s Project following the death of their daughter Nora; they have two other daughters who continue to support Nora’s Project and memorialize their sister. Nora died in a postsurgical medical accident with an improperly administered feeding tube. Ali and Brent, who also participated in a joint interview, founded The Riley Project in response to their daughter Riley’s death from a rare cancer. Though deceased, Riley is considered the executive director of The Riley Foundation. Jody and Pam, strangers-turnedfriends, came together to form Moms Healing to help mothers who were experiencing the pain of losing a child. Jody’s son and Pam’s son both died in tragic accidents that caused fatal head injuries. Jody and Pam participated in individual interviews. Interviews focused on participants’ experiences with the death of their child. Guiding questions (Witmer, 1997) were developed to hear parents’ stories, the ways they coped, and how they comforted their surviving children. The questions were open-ended, and follow-up questions elicited further examples and allowed clarification. Interviews took place in a location convenient to the participants (e.g., coffee shops, participants’ homes) and lasted 90–120 min. Interviews were audiorecorded and transcribed with the participants’
permission. The present interview excerpts include participants’ stories about the foundations they created. Narrative Approach A narrative approach is well suited to exploring the experience of death and grief because it contributes to the understanding of the personal experience and allows the emergence of themes to transcend individual stories (Gilbert, 2002). Rather than a clear, direct, formulaic approach, narrative analysis aims to understand the lives of the tellers from their own perspectives (Bailey, 1996). With a narrative approach, the researcher looks for deeper meaning beyond what is said. A narrative approach seeks to understand lives from the point of view of the narrator and is a shared production with the researcher (Gilbert, 2002).
RESULTS AND DISCUSSION The following results and discussion details each foundation and the founders’ stories. Building on these stories, I present common themes with a focus on meaning making and finding purpose in grief. Three Foundations Nora’s Project is a nonprofit organization that began in 2003. Following the death of their daughter, these two parents (Ray and Tammi) reached out to the disabled community and offered wheelchairs to underprivileged children in countries around the world. Nora’s Project helps disabled children move, speak, learn, and thrive. Nora’s Project provides wheelchairs to assist in mobility, encourages alternative forms of communication, and educates families. Ray: With the proceeds from the settlement, we started Nora’s Project, which is a private foundation. Our daughter, Kasey, has been on two Nora’s Project expeditions to Peru to distribute wheelchairs to kids who need them. It was really interesting because our other daughter, who is in the Peace Corps, has communicated, ‘‘You know, this is not fair. You’re having a Nora’s Project trip, and I cannot come. This is not fair.’’ We were there in November and we actually just got back two and a half weeks ago. We were in Peru for a second trip. When we got back from our first trip, she said that she wanted to come from the Peace Corps for the second Nora’s Project expedition, that she really felt that she was left out, and that it was important. She really wanted to be a part of that. Kasey was a part of that and for her, and me, it is another real concrete way to
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connect with Nora or perhaps the spirit of Nora. Our goal is to reach out to and improve the lives of families that have kids with disabilities, and provide not only wheelchairs but training and support and help with communication. Tammi: Our mission statement is to improve the quality of life for children and their families. I think for myself it is sort of ongoing work with grief. With Nora’s Project, I am also healing. I am able to turn something that was horrific, the way she died, into something that will do good in the world. You make the world a better place for people like Nora. But Joslyn couldn’t come to Peru. She wanted so much to come, but we just felt it wasn’t the right thing to do. It was too expensive and too much stress for her. We even talked to one of the Peace Corps people, and he said it probably wouldn’t be such a good idea. But now, she is starting Nora’s ProjectJordan. She got all fired up about it, and she’s getting things organized. She is in contact with people in Jordan and has hopes for a Nora’s Project-Jordan expedition in 2006. We think maybe for Kasey, doing some of the Nora’s Project work that she’s done has also been a release, sort of a grief work for her. And maybe it will be for our other daughter in Jordan, too, for her to be able to do this stuff, something concrete like we’ve been able to do.
The Riley Foundation, a nonprofit organization established in 2001, is a lifelong commitment for Brent and Ali. The Riley Foundation raises money and offers financial aid to families who are seeking medical care for their children. Financial assistance comes in the form of funding for travel, prescriptions, and reimbursements for treatments and procedures. Ali: Our strength has taught us that we can share with others. It helped us create a foundation. The Riley Foundation helps other families that are fighting cancer. I think that’s allowed us to take a very negative experience and make something good of it. As we like to say, we didn’t allow the cancer to win. We took the experience and we’re continually trying to do something good with what we’ve learned. Our feeling is that if we didn’t do something with our experience, with all that we’ve been through, then we truly would be allowing the cancer to defeat us, but in turn, our feeling is we’ll take all this knowledge, we’ll take this experience, we’ll take everything that we can, and turn it into a positive experience by taking this foundation and giving other families financial aid, and answering their questions, and trying to be there for them if we can. That in itself, is also very rewarding. Because again, it’s another reflection on our daughter’s life and the
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importance we placed on her life; not just remembering or being sorrowful that she is gone, but being able to celebrate the years she was here with us. Brent: There are also a lot of pictures. We put together a DVD presentation for her memorial, which was a series of pictures and a video and a montage of her life. Then, we created the shortened version as part of the demonstration or presentation for the foundation. It also has clips and different memories. And our daughter likes to watch the Riley video. So, there will be times when we’ll put it in and watch it and think of her and think of the times we had with her. That’s another way for us to continually allow our children to know her . . . Those were kind of neat because it is like she is still part of this family. She is part of the past, but her memory allows us to continue to appreciate her into the future. But the video that was put together is very special because it took hours and hours, and it’s put to music and it’s just a neat way for us to actually introduce people to Riley that have never known her but have heard about her or have heard about the foundation. In 11 minutes someone could say, ‘‘I know who Riley is now. I know who she was.’’ And that is a neat thing that we have, and we can do.
Moms Healing is a nondenominational faith-based support group that began in 1997. After losing their children Eli and John in tragic accidents, Pam and Jody came together to reach out to women who had also experienced the tragic death of a child. Once only four women sitting together in a living room, Moms Healing grew to offer comfort, encouragement, hope, and togetherness to many grieving mothers. Through sharing their stories of grief, these mothers seek to support others in the grieving process and to make life meaningful again. Jody: We learn to work through grief. Six months into my grief . . . it was just the strangest thing because after our son died something that I had never done before was to look at obituaries. But I began looking at all the young children and I began cutting out all these clippings. And I couldn’t for the life of me understand why am I doing this? Why do I have all these clippings of young children? So I contacted my friend Pam one day and I said, ‘‘I don’t know, but I just have this sense that maybe there is something out of this that you know we can do for all these people who have had children die,’’ and I said, ‘‘I am very willing to call these people who I don’t know and invite them to my house, and I am just wondering if you would partner with me and come over and share your story so we can see what comes out of this. You know, maybe those moms might be
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interested in meeting.’’ And so it began in 1997; when I think we had four women who didn’t know each other, who were strangers, gather in my living room and that’s how we began our group, Moms Healing. That’s how it began. It was an incredible journey because we got to know these people on a personal level as they shared their stories. We would contact more people and embrace these moms coming in because we were all so in our grief, and yet we thought, and what we told the women is we want to learn to embrace life, and to go on, and to make meaning, and to become where we don’t allow this sorrow to destroy us but to use it for good, and to help others. So that has been a focus in our group. Not only to help the women, but for the women to go out and to embrace the community and grow strong. And we have seen that. We have one mother who has taken on wheelchair outreach and has gone to Peru a couple of times. We have another mother with a foundation, and they reach out to cancer. One mother helps with the buddy walk, which is for Down’s syndrome. We ourselves had a scholarship fund. We are just seeing a lot of good things that we want to help others who are in this realm do. Our group also just recently tried to connect with the Russian women in Beslan. We have a Russian woman in our group, and we are writing letters hoping to contact the mothers over there who went thru that tragedy, that shooting. So we’re hoping that something good might come out of that. We have taken this and we have said that we don’t want to allow it to stop us from pursuing and making sense of life and enjoying and helping and doing those kinds of things that we need to do. And I think that’s significant. You know one of the things we did after our son died was go to a counselor to seek help. He said, ‘‘When you are hurting, one of the most significant things you can do is help somebody else who’s hurting,’’ and that really impacted our life. So, now my husband and I both, but even more so him, will go overseas and do a lot of work in different areas, such as dental work, and help people in areas that have never had that kind of care. I think that is significant because that has come as a result of this. Pam: Moms Healing gives me a purpose for what happened. If you can’t grow and help other people through the same thing, then there is no purpose. And I guess we want to know the whys and the purpose, even if we accept god the almighty, we want to know why and what the purpose is. And if I can help somebody else because I have been there, then I am more than willing to do that. In fact, our group just sent letters to Russian women in Beslan where they had that tragedy. I hope in some way we can help somebody else
because we have a Russian lady in our group who said they don’t have anything like [Moms Healing] in Russia. Women need to get together and help each other, support each other. And so we sent letters to them to build a relationship if they want to accept it. Where that goes from here, I don’t know. It may never come to fruition, but if it does, I am willing to go there and help them set up support groups and help them support each other because it is hard to go through those things on your own. You need the support of others. And there are so many women there that had children die from that. There were 600 kids, and a lot of grown ups died too because it was the first day of school. They were all going. It is a big celebration in Russia, the first day of school. So tragic. So all of that helps you reach out, and it is healing. Although at this point sometimes it brings back feelings that I’ve gone past. You never forget the feeling, the pain. You never forget that. And yet life is good for me now, it’s good again, and that doesn’t mean I don’t miss John, I still do. I’ll always love him, I’ll always be his mother, but at the same time, life is good. I have grandbabies, I’m busy, I’m working, I’m reaching out to other people, so my life is really full, but still sometimes going back to that place is painful. It brings back that pain, but yet, at the same time I’m willing to do that if it helps somebody else. So, it’s changed a lot of my focus. And it is healing to reach out to other people and to help other people in no matter what you are doing at the time . . . You know, somebody said once, ‘‘Why is a short walk to insanity,’’ and in a lot of ways it is. We may never understand why, but it is something that happened, and you have to accept it happened and move on and cope with it.
Common Thread: Meaning Making Although each of these foundations had a different mission, they were similar in that they stemmed from the death of a child. These grieving parents traveled through grief in unique ways, but each developed a new organization in memory of their deceased child. Common within each of these interviews was a theme of meaning construction, finding a way to make sense of and find purpose for their losses. Through suffering, the founders discovered a space to offer emotional, financial, and=or material support to others in need. Each of the parents within these narratives spoke of meaning making and seeking purpose in ways that illustrate how grief and meaning making extends from the self and can impact society in a striking way. These cases are stories not only of meaning, but also of philanthropy, compassion, and community. Following the death of a child, these parents looked beyond their
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own circumstances and into a world where they could benefit others. This component of meaning making is similar to searching for meaning as significance (Janoff-Bulman & Frantz, 1997), which often comes later in the progression of grief and encompasses aspects of both meaning making and finding purpose or benefits. This makes sense in the current cases, given that they started their organizations years after the deaths of their children. When searching for meaning as significance, bereaved persons move away from meaning as comprehensibility, where they have previously sought information, made causal attributions, and questioned themselves and their responsibility for the death (Janoff-Bulman & Frantz, 1997). Seeking meaning as significance entails transcendence from meaning making surrounding the death event to meaning making surrounding life and the deceased child (Janoff-Bulman & Frantz). This process involves initiating memorials, gaining new insights into the meaning of life, moving toward existential beliefs, valuing deceased children, perceiving benefits, and acting altruistically (Murphy, Johnson, & Lohan, 2003). The current stories illustrate this process because creating the foundations went beyond accepting the death or reorganizing a sense of self-worth and assumptions about the world (Davis & Nolen-Hoeksema, 2001). It signified movement into deeper meaning. As Ali stated, Our strength has taught us that we can share with others. . . . Our feeling is we’ll take all this knowledge, we’ll take this experience, we’ll take everything that we can, and turn it into a positive experience by taking this foundation and giving other families financial aid and answering their questions and trying to be there for them if we can. (Italics added for emphasis.)
These three foundations benefit people from all over the world. This global function reiterates the point that although meaning making and finding purpose are internal and grief-invoked processes, they can also be external, social performances used to make good of tragedy. Parents regard their foundations as opportunities for finding deeper meaning, seeking purpose, and making good for self and others out of something tragic. Pam said, Moms Healing gives me a purpose for what happened. If you can’t grow and help other people through the same thing, then there is no purpose. . . . So, it’s changed a lot of my focus. And it is healing to reach out to other people and to help other people in no matter what you are doing at the time. (Italics added for emphasis.)
Jody said, We want to learn to embrace life, and to go on, and to make meaning, and to become where we don’t allow this
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sorrow to destroy us but to use it for good, and to help others. So that has been a focus in our group. Not only to help the women, but for the women to go out and to embrace the community and grow strong. (Italics added for emphasis.)
Tammi said, ‘‘We are able to turn something that was horrific, the way she died, into something that will do good in the world’’ (italics added for emphasis). If making meaning can aid in seeking purpose for the bereaved and benefit members of society, there may be ways for practitioners to encourage such responses. This type of meaning making deserves further attention in grief, stress, and coping literatures. Finally, participants believed that their foundations helped keep the spirit of their children alive. Ray said, ‘‘I know for me, it is another real concrete way to connect with Nora or perhaps the spirit of Nora’’ (italics added for emphasis). Ali said, ‘‘It’s another reflection on our daughter’s life and the importance we placed on her life’’ (italics added for emphasis). Brent said, So, there will be times when we’ll put [the Riley video] in and watch it and think of her and think of the times we had with her. . . . Those were kind of neat because it is like she is still part of this family. She is part of the past, but her memory allows us to continue to appreciate her into the future. (Italics added for emphasis.)
In contemporary conceptualizations of grief, maintaining bonds with the deceased is seen as an adaptive grief reaction (Klass, Silverman, & Nickman, 1996) if the person recognizes that bonds are internal not actual (Field, 2006) and different from when the deceased lived (Klass, 2001). However, scholars acknowledge the maladaptive potential of continued bonds. The inability to differentiate the changed relationship (external to internal), the past from present, and the living from the dead, indicates maladaptive continued bonds and could promote complicated grief (Field, 2006). Refusal to give up goals to regain proximity to the deceased over time, for example, may be a maladaptive continued bond expression (Field, Gao, & Paderna, 2005). On the other hand, comfort through fond memories, representing the deceased as a role model, focusing on the legacy, and recognizing past and current relationship gains associated with the deceased may be more adaptive forms of enduring connections when they are not accompanied by a failure to accept the permanence of the separation (Field, 2006; Field et al., 2005). The ability to make meaning, as opposed to failing to understand the external reality of the death, may also help mitigate the negative potential of continuing bonds. Strong continued bonds are associated with more distress when sense making is low (Neimeyer et al., 2006).
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These parents referred to the ongoing connection their foundations preserved with their deceased children and how this helped them make meaning, even through the pain of acknowledging the loss. Pam stated, ‘‘I’m reaching out to other people, so my life is really full, but still sometimes going back to that place is painful. It brings back that pain, but at the same time I’m willing to do that if it helps somebody else’’ (italics added for emphasis). This statement implies that Pam has moved beyond the acute pain that would indicate prolonged, complicated grief but is willing to revisit the pain to help others and find purpose. Other parents also referenced the death while discussing the positive impact of starting the organizations, suggesting they were not denying the death or replacing the memories. Instead, they were finding meaning and purpose among the grief and sadness they still experienced, often through keeping their children’s legacies and past relationship going in their current lives. Ali said, ‘‘Not just remembering or being sorrowful that she is gone, but being able to celebrate the years she was here with us.’’ Brent elaborated, ‘‘She is part of the past, but her memory allows us to continue to appreciate her into the future.’’ Like Pam, they recognize the death and differentiate past from present, while also feeling the ongoing connection with their child through their foundation work. As such, meaning making and continuing bonds through developing foundations seems consistent with functional aspects of continued bond expressions and could be adaptive for bereaved parents. Experts have recommended researching connections among meaning making and continued bonds, including who benefits from continuing as opposed to relinquishing bonds with the deceased (Stroebe & Schut, 2005). Missing from arguments surrounding continuing bonds are social and cultural elements—social notions have only considered the family system (Klass, 2006). This study’s focus on developing philanthropic, memorial organizations as an aspect of the grief process that can aid in making meaning and continuing bonds, while simultaneously helping others and society, addresses these limitations in previous research. In a turn from standard grief therapy, an emphasis on meaning making shifts the focus from medical treatment and recovery into meaning reconstruction (Neimeyer, 2000). Although supportive others (e.g., practitioners, family, friends) can facilitate meaning making, bereaved persons should not be forced into seeking purpose for the death of their loved ones (Neimeyer, 2000). Bereaved individuals who are able to find meaning adjust better than those who do not seek existential meaning (Neimeyer, 2000). However, researchers have connected the best adjustment to high degrees of sense-making, but low benefits, perhaps because finding benefits seems
selfish to some (Neimeyer, Laurie, Mehta, Hardison, & Currier, 2008). The current study may have departed from this idea regarding self-interest, as these charitable organizations helped participants create purpose and think about the deaths in meaningful ways while also acting nonselfishly and helping others. However, charitable foundations are time-consuming and financially and emotionally demanding, so they could produce strain for some bereaved individuals. For example, the inability for Tammi’s and Brent’s daughter to participate in the foundation’s work, based on travel expense and job stress, was upsetting for her and may have heightened her sense of loss. Yet, she felt the mission was important and later began an extension of the program. Although the foundation may have also helped this bereaved sibling, the timing of the benefit was different for each family member. This exemplifies the individualized nature of grief and how it should be handled as such when counseling or supporting the bereaved person. Neimeyer (2000) advocated a more ‘‘refined and clinically rich conception of the process of meaning reconstruction, one that accredits its complexity, its social character, and the conditions that facilitate or impede it’’ (p. 555). The present project works toward these goals.
CONCLUSION The current study has limitations, particularly in terms of sample size and combined dyadic and individual interviews. Nevertheless, the narrative approach enabled me to recognize the complex feelings and endeavors involved in making meaning. The themes that arose across the stories helped further develop meaning making from a theoretical perspective, adding the notion of foundation formation and philanthropy. These parents expressed the pain brought forth in developing their organizations and continuing bonds, but also the joy that came from helping others and finding purpose in their children’s deaths. They highlighted the social character of meaning construction and the importance of the impact they have made on various communities. They are reaching out to people other than themselves to memorialize their children, make sense of the death, and create good. Jody shared a quote from her counselor, who may have had it right when he said, ‘‘When you are hurting one of the most significant things you can do is help somebody else who’s hurting.’’ Although this coping strategy may not work for everyone, helping others may be a viable source of renewal, reconstruction, and continued bonds for bereaved individuals attempting to make meaning and find purpose in their grief processes.
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Klass, D., Silverman, P. R., & Nickman, S. L. (Eds.). (1996). Continuing bonds: New understandings of grief. Washington, DC: Taylor & Francis. Murphy, S. A., Johnson, L. C., & Lohan, J. (2003). Finding meaning in a child’s violent death: A five-year prospective analysis of parents’ personal narratives and empirical data. Death Studies, 27, 381–404. doi:10.1080=07481180390208621 Neimeyer, R. A. (2000). Searching for the meaning of meaning: Grief therapy and the process of reconstruction. Death Studies, 24, 541–558. doi:10.1007=s10879-009-9135-3 Neimeyer, R. A. (2002). Lessons of loss (2nd ed.). New York, NY: Brunner Routledge. Neimeyer, R. A., Baldwin, S. A., & Gillies, J. (2006). Continuing bonds and reconstructing meaning: Mitigating complications in bereavement. Death Studies, 30, 715–738. doi:10.1080=07481180600848322 Neimeyer, R. A., Laurie, A., Mehta, T., Hardison, H., & Currier, J. M. (2008). Lessons of loss: Meaning-making in bereaved college students. New Directions for Social Services, 121, 27–39. O’Connor, M. F. (2003). Making meaning of life events: Theory, evidence, and research directions for an alternative model. Omega, 46, 51–75. Patterson, J. M. (1988). Families experiencing stress: The family adjustment and adaptation response model and applying the FAAR model to health-related issues for intervention and research. Family Systems Medicine, 6, 202–237. doi:10.1037=h0089739 Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 58, 233–246. Rossetto, K. R. (2006). A child left behind: An examination of comforting strategies, goals, and outcomes following the death of a child. Master’s thesis, University of Montana, Missoula. Stroebe, M., & Schut, H. (2005). To continue or relinquish bonds: A review of consequences for the bereaved. Death Studies, 29, 477–494. doi:10.1080=07481180590962659 Witmer, D. F. (1997). Communication and recovery: Structuration as an ontological approach to organizational culture. Communication Monographs, 64, 324–349. Worden, H. (1991). Grief counseling and grief therapy: A handbook for the mental health practitioner. New York, NY: Springer Publishing Company.
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Creating Philanthropic Foundations to Deal With Grief: Case Studies of Bereaved Parents Kelly R. Rossetto
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Department of Communication , Boston College , Chestnut Hill , Massachusetts , USA Accepted author version posted online: 16 Apr 2014.Published online: 21 May 2014.
To cite this article: Kelly R. Rossetto (2014) Creating Philanthropic Foundations to Deal With Grief: Case Studies of Bereaved Parents, Death Studies, 38:8, 531-537, DOI: 10.1080/07481187.2014.899652 To link to this article: http://dx.doi.org/10.1080/07481187.2014.899652
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Death Studies, 38: 531–537, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print=1091-7683 online DOI: 10.1080/07481187.2014.899652
Creating Philanthropic Foundations to Deal With Grief: Case Studies of Bereaved Parents Kelly R. Rossetto
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Department of Communication, Boston College, Chestnut Hill, Massachusetts, USA
The current study involves the analysis of six bereaved parents’ stories and argues that the development of philanthropic foundations helped these parents make meaning of their children’s deaths and find purpose in the midst of their grief. Furthermore, philanthropy, as a way of making meaning and finding purpose, is a mutually beneficial process because it helps both the bereaved founders and the communities the organizations reach. Connections between these narratives and the bereavement literature help us better understand the individual=family grief process and meaning making, as well as how internal grief states intersect with communities.
The death of a loved one precipitates life reorganization for the bereaved person. As grief, sadness, and despair commence, the tasks of grieving can help the bereaved re-establish equilibrium (Janoff-Bulman, 1992) and restore a balance in life (Worden, 1991). Making meaning helps bereaved individuals find a place within a world re-centered by death. It plays a central role in the process of adjusting to loss and trauma because it serves to maintain two aspects of our sense of self that often are most threatened: our self-worth and our fundamental beliefs about how the world works (Davis & Nolen-Hoeksema, 2001). Making sense of the loss in terms of pre-existing assumptions about the world can involve viewing the death as predictable, consistent with the deceased person’s view on life, and spiritually or religiously explainable (Davis & Nolen-Hoeksema, 2001). In previous studies, high levels of meaning making predicted adaptive grief outcomes early in bereavement (Neimeyer, Baldwin, & Gillies, 2006). Finding purpose is another important aspect of the grief process, which typically comes after meaning Received 23 October 2013; accepted 17 February 2014. The current article comes from data collected for her thesis research directed by Dr. Stephen Yoshimura at the University of Montana, Missoula. An initial version of the article was presented at the National Communication Association conference. Address correspondence to Kelly R. Rossetto, Department of Communication, Boston College, 21 Campanella Way, Maloney Hall #519, Chestnut Hill, MA 02467. E-mail: [email protected]
making (Neimeyer, 2000). Finding purpose can include seeking perceived benefits (Davis & Nolen-Hoeksema, 2001; Janoff-Bulman, 1992), creating or discovering the significance of an event and its implications (O’Connor, 2003), and finding value and justification for loss (Baumeister & Newman, 1994). Perceived benefits include, but are not limited to, character growth, perspective gain, and strengthened relationships (Davis & Nolen-Hoeksema, 2001). Higher levels of finding benefit and positive identity reconstruction correlate with lower complicated grief (Neimeyer et al., 2006). Through the processes of meaning making and finding purpose, bereavement prompts learning about the self and the world (Attig, 1996) from a new and unfamiliar perspective. Learning about the self and the world implies that bereaved individuals’ internal feelings of grief intersect with their social place in the world (Neimeyer, 2002). In times of stress, individuals find global meaning, which involves how family members view their internal family relationships and external community relationships (Patterson, 1988). These meanings often involve culture, religion, and identity, and they shape how families function and cope with stress (Patterson, 2002). Although global meanings embed families within a societal and cultural context, definitions of global meaning do not take into account the reciprocal effect meaning making in a family can have on society. Current conceptualizations of meaning
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making offer very little regarding outcomes of grief and their impact on the community. A previous analysis of 11 interviews revealed that two couples and two individuals developed their own philanthropic organizations following the deaths of their children (Rossetto, 2006). Connecting these narratives with the literature on grief and meaning making can help us better understand individual and family grief processes as well as how internal grief states intersect with the external world, which is the purpose of the current study. METHOD
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Background The current study stems from a broader project, which involved 11 in-depth interviews with seven mothers and four fathers whose children died (Rossetto, 2006). Support group facilitators informed participants about the project; other participants heard about the project through word of mouth and volunteered to share their experiences. Couples were given the choice to participate in the interviews individually or together. The narratives that form the current cases for analysis come from interviews with four bereaved mothers and two bereaved fathers who cocreated three separate foundations to honor their deceased children (names and organization names have been changed to protect confidentiality). Tammi and Ray, who participated in a joint interview, established Nora’s Project following the death of their daughter Nora; they have two other daughters who continue to support Nora’s Project and memorialize their sister. Nora died in a postsurgical medical accident with an improperly administered feeding tube. Ali and Brent, who also participated in a joint interview, founded The Riley Project in response to their daughter Riley’s death from a rare cancer. Though deceased, Riley is considered the executive director of The Riley Foundation. Jody and Pam, strangers-turnedfriends, came together to form Moms Healing to help mothers who were experiencing the pain of losing a child. Jody’s son and Pam’s son both died in tragic accidents that caused fatal head injuries. Jody and Pam participated in individual interviews. Interviews focused on participants’ experiences with the death of their child. Guiding questions (Witmer, 1997) were developed to hear parents’ stories, the ways they coped, and how they comforted their surviving children. The questions were open-ended, and follow-up questions elicited further examples and allowed clarification. Interviews took place in a location convenient to the participants (e.g., coffee shops, participants’ homes) and lasted 90–120 min. Interviews were audiorecorded and transcribed with the participants’
permission. The present interview excerpts include participants’ stories about the foundations they created. Narrative Approach A narrative approach is well suited to exploring the experience of death and grief because it contributes to the understanding of the personal experience and allows the emergence of themes to transcend individual stories (Gilbert, 2002). Rather than a clear, direct, formulaic approach, narrative analysis aims to understand the lives of the tellers from their own perspectives (Bailey, 1996). With a narrative approach, the researcher looks for deeper meaning beyond what is said. A narrative approach seeks to understand lives from the point of view of the narrator and is a shared production with the researcher (Gilbert, 2002).
RESULTS AND DISCUSSION The following results and discussion details each foundation and the founders’ stories. Building on these stories, I present common themes with a focus on meaning making and finding purpose in grief. Three Foundations Nora’s Project is a nonprofit organization that began in 2003. Following the death of their daughter, these two parents (Ray and Tammi) reached out to the disabled community and offered wheelchairs to underprivileged children in countries around the world. Nora’s Project helps disabled children move, speak, learn, and thrive. Nora’s Project provides wheelchairs to assist in mobility, encourages alternative forms of communication, and educates families. Ray: With the proceeds from the settlement, we started Nora’s Project, which is a private foundation. Our daughter, Kasey, has been on two Nora’s Project expeditions to Peru to distribute wheelchairs to kids who need them. It was really interesting because our other daughter, who is in the Peace Corps, has communicated, ‘‘You know, this is not fair. You’re having a Nora’s Project trip, and I cannot come. This is not fair.’’ We were there in November and we actually just got back two and a half weeks ago. We were in Peru for a second trip. When we got back from our first trip, she said that she wanted to come from the Peace Corps for the second Nora’s Project expedition, that she really felt that she was left out, and that it was important. She really wanted to be a part of that. Kasey was a part of that and for her, and me, it is another real concrete way to
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connect with Nora or perhaps the spirit of Nora. Our goal is to reach out to and improve the lives of families that have kids with disabilities, and provide not only wheelchairs but training and support and help with communication. Tammi: Our mission statement is to improve the quality of life for children and their families. I think for myself it is sort of ongoing work with grief. With Nora’s Project, I am also healing. I am able to turn something that was horrific, the way she died, into something that will do good in the world. You make the world a better place for people like Nora. But Joslyn couldn’t come to Peru. She wanted so much to come, but we just felt it wasn’t the right thing to do. It was too expensive and too much stress for her. We even talked to one of the Peace Corps people, and he said it probably wouldn’t be such a good idea. But now, she is starting Nora’s ProjectJordan. She got all fired up about it, and she’s getting things organized. She is in contact with people in Jordan and has hopes for a Nora’s Project-Jordan expedition in 2006. We think maybe for Kasey, doing some of the Nora’s Project work that she’s done has also been a release, sort of a grief work for her. And maybe it will be for our other daughter in Jordan, too, for her to be able to do this stuff, something concrete like we’ve been able to do.
The Riley Foundation, a nonprofit organization established in 2001, is a lifelong commitment for Brent and Ali. The Riley Foundation raises money and offers financial aid to families who are seeking medical care for their children. Financial assistance comes in the form of funding for travel, prescriptions, and reimbursements for treatments and procedures. Ali: Our strength has taught us that we can share with others. It helped us create a foundation. The Riley Foundation helps other families that are fighting cancer. I think that’s allowed us to take a very negative experience and make something good of it. As we like to say, we didn’t allow the cancer to win. We took the experience and we’re continually trying to do something good with what we’ve learned. Our feeling is that if we didn’t do something with our experience, with all that we’ve been through, then we truly would be allowing the cancer to defeat us, but in turn, our feeling is we’ll take all this knowledge, we’ll take this experience, we’ll take everything that we can, and turn it into a positive experience by taking this foundation and giving other families financial aid, and answering their questions, and trying to be there for them if we can. That in itself, is also very rewarding. Because again, it’s another reflection on our daughter’s life and the
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importance we placed on her life; not just remembering or being sorrowful that she is gone, but being able to celebrate the years she was here with us. Brent: There are also a lot of pictures. We put together a DVD presentation for her memorial, which was a series of pictures and a video and a montage of her life. Then, we created the shortened version as part of the demonstration or presentation for the foundation. It also has clips and different memories. And our daughter likes to watch the Riley video. So, there will be times when we’ll put it in and watch it and think of her and think of the times we had with her. That’s another way for us to continually allow our children to know her . . . Those were kind of neat because it is like she is still part of this family. She is part of the past, but her memory allows us to continue to appreciate her into the future. But the video that was put together is very special because it took hours and hours, and it’s put to music and it’s just a neat way for us to actually introduce people to Riley that have never known her but have heard about her or have heard about the foundation. In 11 minutes someone could say, ‘‘I know who Riley is now. I know who she was.’’ And that is a neat thing that we have, and we can do.
Moms Healing is a nondenominational faith-based support group that began in 1997. After losing their children Eli and John in tragic accidents, Pam and Jody came together to reach out to women who had also experienced the tragic death of a child. Once only four women sitting together in a living room, Moms Healing grew to offer comfort, encouragement, hope, and togetherness to many grieving mothers. Through sharing their stories of grief, these mothers seek to support others in the grieving process and to make life meaningful again. Jody: We learn to work through grief. Six months into my grief . . . it was just the strangest thing because after our son died something that I had never done before was to look at obituaries. But I began looking at all the young children and I began cutting out all these clippings. And I couldn’t for the life of me understand why am I doing this? Why do I have all these clippings of young children? So I contacted my friend Pam one day and I said, ‘‘I don’t know, but I just have this sense that maybe there is something out of this that you know we can do for all these people who have had children die,’’ and I said, ‘‘I am very willing to call these people who I don’t know and invite them to my house, and I am just wondering if you would partner with me and come over and share your story so we can see what comes out of this. You know, maybe those moms might be
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interested in meeting.’’ And so it began in 1997; when I think we had four women who didn’t know each other, who were strangers, gather in my living room and that’s how we began our group, Moms Healing. That’s how it began. It was an incredible journey because we got to know these people on a personal level as they shared their stories. We would contact more people and embrace these moms coming in because we were all so in our grief, and yet we thought, and what we told the women is we want to learn to embrace life, and to go on, and to make meaning, and to become where we don’t allow this sorrow to destroy us but to use it for good, and to help others. So that has been a focus in our group. Not only to help the women, but for the women to go out and to embrace the community and grow strong. And we have seen that. We have one mother who has taken on wheelchair outreach and has gone to Peru a couple of times. We have another mother with a foundation, and they reach out to cancer. One mother helps with the buddy walk, which is for Down’s syndrome. We ourselves had a scholarship fund. We are just seeing a lot of good things that we want to help others who are in this realm do. Our group also just recently tried to connect with the Russian women in Beslan. We have a Russian woman in our group, and we are writing letters hoping to contact the mothers over there who went thru that tragedy, that shooting. So we’re hoping that something good might come out of that. We have taken this and we have said that we don’t want to allow it to stop us from pursuing and making sense of life and enjoying and helping and doing those kinds of things that we need to do. And I think that’s significant. You know one of the things we did after our son died was go to a counselor to seek help. He said, ‘‘When you are hurting, one of the most significant things you can do is help somebody else who’s hurting,’’ and that really impacted our life. So, now my husband and I both, but even more so him, will go overseas and do a lot of work in different areas, such as dental work, and help people in areas that have never had that kind of care. I think that is significant because that has come as a result of this. Pam: Moms Healing gives me a purpose for what happened. If you can’t grow and help other people through the same thing, then there is no purpose. And I guess we want to know the whys and the purpose, even if we accept god the almighty, we want to know why and what the purpose is. And if I can help somebody else because I have been there, then I am more than willing to do that. In fact, our group just sent letters to Russian women in Beslan where they had that tragedy. I hope in some way we can help somebody else
because we have a Russian lady in our group who said they don’t have anything like [Moms Healing] in Russia. Women need to get together and help each other, support each other. And so we sent letters to them to build a relationship if they want to accept it. Where that goes from here, I don’t know. It may never come to fruition, but if it does, I am willing to go there and help them set up support groups and help them support each other because it is hard to go through those things on your own. You need the support of others. And there are so many women there that had children die from that. There were 600 kids, and a lot of grown ups died too because it was the first day of school. They were all going. It is a big celebration in Russia, the first day of school. So tragic. So all of that helps you reach out, and it is healing. Although at this point sometimes it brings back feelings that I’ve gone past. You never forget the feeling, the pain. You never forget that. And yet life is good for me now, it’s good again, and that doesn’t mean I don’t miss John, I still do. I’ll always love him, I’ll always be his mother, but at the same time, life is good. I have grandbabies, I’m busy, I’m working, I’m reaching out to other people, so my life is really full, but still sometimes going back to that place is painful. It brings back that pain, but yet, at the same time I’m willing to do that if it helps somebody else. So, it’s changed a lot of my focus. And it is healing to reach out to other people and to help other people in no matter what you are doing at the time . . . You know, somebody said once, ‘‘Why is a short walk to insanity,’’ and in a lot of ways it is. We may never understand why, but it is something that happened, and you have to accept it happened and move on and cope with it.
Common Thread: Meaning Making Although each of these foundations had a different mission, they were similar in that they stemmed from the death of a child. These grieving parents traveled through grief in unique ways, but each developed a new organization in memory of their deceased child. Common within each of these interviews was a theme of meaning construction, finding a way to make sense of and find purpose for their losses. Through suffering, the founders discovered a space to offer emotional, financial, and=or material support to others in need. Each of the parents within these narratives spoke of meaning making and seeking purpose in ways that illustrate how grief and meaning making extends from the self and can impact society in a striking way. These cases are stories not only of meaning, but also of philanthropy, compassion, and community. Following the death of a child, these parents looked beyond their
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own circumstances and into a world where they could benefit others. This component of meaning making is similar to searching for meaning as significance (Janoff-Bulman & Frantz, 1997), which often comes later in the progression of grief and encompasses aspects of both meaning making and finding purpose or benefits. This makes sense in the current cases, given that they started their organizations years after the deaths of their children. When searching for meaning as significance, bereaved persons move away from meaning as comprehensibility, where they have previously sought information, made causal attributions, and questioned themselves and their responsibility for the death (Janoff-Bulman & Frantz, 1997). Seeking meaning as significance entails transcendence from meaning making surrounding the death event to meaning making surrounding life and the deceased child (Janoff-Bulman & Frantz). This process involves initiating memorials, gaining new insights into the meaning of life, moving toward existential beliefs, valuing deceased children, perceiving benefits, and acting altruistically (Murphy, Johnson, & Lohan, 2003). The current stories illustrate this process because creating the foundations went beyond accepting the death or reorganizing a sense of self-worth and assumptions about the world (Davis & Nolen-Hoeksema, 2001). It signified movement into deeper meaning. As Ali stated, Our strength has taught us that we can share with others. . . . Our feeling is we’ll take all this knowledge, we’ll take this experience, we’ll take everything that we can, and turn it into a positive experience by taking this foundation and giving other families financial aid and answering their questions and trying to be there for them if we can. (Italics added for emphasis.)
These three foundations benefit people from all over the world. This global function reiterates the point that although meaning making and finding purpose are internal and grief-invoked processes, they can also be external, social performances used to make good of tragedy. Parents regard their foundations as opportunities for finding deeper meaning, seeking purpose, and making good for self and others out of something tragic. Pam said, Moms Healing gives me a purpose for what happened. If you can’t grow and help other people through the same thing, then there is no purpose. . . . So, it’s changed a lot of my focus. And it is healing to reach out to other people and to help other people in no matter what you are doing at the time. (Italics added for emphasis.)
Jody said, We want to learn to embrace life, and to go on, and to make meaning, and to become where we don’t allow this
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sorrow to destroy us but to use it for good, and to help others. So that has been a focus in our group. Not only to help the women, but for the women to go out and to embrace the community and grow strong. (Italics added for emphasis.)
Tammi said, ‘‘We are able to turn something that was horrific, the way she died, into something that will do good in the world’’ (italics added for emphasis). If making meaning can aid in seeking purpose for the bereaved and benefit members of society, there may be ways for practitioners to encourage such responses. This type of meaning making deserves further attention in grief, stress, and coping literatures. Finally, participants believed that their foundations helped keep the spirit of their children alive. Ray said, ‘‘I know for me, it is another real concrete way to connect with Nora or perhaps the spirit of Nora’’ (italics added for emphasis). Ali said, ‘‘It’s another reflection on our daughter’s life and the importance we placed on her life’’ (italics added for emphasis). Brent said, So, there will be times when we’ll put [the Riley video] in and watch it and think of her and think of the times we had with her. . . . Those were kind of neat because it is like she is still part of this family. She is part of the past, but her memory allows us to continue to appreciate her into the future. (Italics added for emphasis.)
In contemporary conceptualizations of grief, maintaining bonds with the deceased is seen as an adaptive grief reaction (Klass, Silverman, & Nickman, 1996) if the person recognizes that bonds are internal not actual (Field, 2006) and different from when the deceased lived (Klass, 2001). However, scholars acknowledge the maladaptive potential of continued bonds. The inability to differentiate the changed relationship (external to internal), the past from present, and the living from the dead, indicates maladaptive continued bonds and could promote complicated grief (Field, 2006). Refusal to give up goals to regain proximity to the deceased over time, for example, may be a maladaptive continued bond expression (Field, Gao, & Paderna, 2005). On the other hand, comfort through fond memories, representing the deceased as a role model, focusing on the legacy, and recognizing past and current relationship gains associated with the deceased may be more adaptive forms of enduring connections when they are not accompanied by a failure to accept the permanence of the separation (Field, 2006; Field et al., 2005). The ability to make meaning, as opposed to failing to understand the external reality of the death, may also help mitigate the negative potential of continuing bonds. Strong continued bonds are associated with more distress when sense making is low (Neimeyer et al., 2006).
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These parents referred to the ongoing connection their foundations preserved with their deceased children and how this helped them make meaning, even through the pain of acknowledging the loss. Pam stated, ‘‘I’m reaching out to other people, so my life is really full, but still sometimes going back to that place is painful. It brings back that pain, but at the same time I’m willing to do that if it helps somebody else’’ (italics added for emphasis). This statement implies that Pam has moved beyond the acute pain that would indicate prolonged, complicated grief but is willing to revisit the pain to help others and find purpose. Other parents also referenced the death while discussing the positive impact of starting the organizations, suggesting they were not denying the death or replacing the memories. Instead, they were finding meaning and purpose among the grief and sadness they still experienced, often through keeping their children’s legacies and past relationship going in their current lives. Ali said, ‘‘Not just remembering or being sorrowful that she is gone, but being able to celebrate the years she was here with us.’’ Brent elaborated, ‘‘She is part of the past, but her memory allows us to continue to appreciate her into the future.’’ Like Pam, they recognize the death and differentiate past from present, while also feeling the ongoing connection with their child through their foundation work. As such, meaning making and continuing bonds through developing foundations seems consistent with functional aspects of continued bond expressions and could be adaptive for bereaved parents. Experts have recommended researching connections among meaning making and continued bonds, including who benefits from continuing as opposed to relinquishing bonds with the deceased (Stroebe & Schut, 2005). Missing from arguments surrounding continuing bonds are social and cultural elements—social notions have only considered the family system (Klass, 2006). This study’s focus on developing philanthropic, memorial organizations as an aspect of the grief process that can aid in making meaning and continuing bonds, while simultaneously helping others and society, addresses these limitations in previous research. In a turn from standard grief therapy, an emphasis on meaning making shifts the focus from medical treatment and recovery into meaning reconstruction (Neimeyer, 2000). Although supportive others (e.g., practitioners, family, friends) can facilitate meaning making, bereaved persons should not be forced into seeking purpose for the death of their loved ones (Neimeyer, 2000). Bereaved individuals who are able to find meaning adjust better than those who do not seek existential meaning (Neimeyer, 2000). However, researchers have connected the best adjustment to high degrees of sense-making, but low benefits, perhaps because finding benefits seems
selfish to some (Neimeyer, Laurie, Mehta, Hardison, & Currier, 2008). The current study may have departed from this idea regarding self-interest, as these charitable organizations helped participants create purpose and think about the deaths in meaningful ways while also acting nonselfishly and helping others. However, charitable foundations are time-consuming and financially and emotionally demanding, so they could produce strain for some bereaved individuals. For example, the inability for Tammi’s and Brent’s daughter to participate in the foundation’s work, based on travel expense and job stress, was upsetting for her and may have heightened her sense of loss. Yet, she felt the mission was important and later began an extension of the program. Although the foundation may have also helped this bereaved sibling, the timing of the benefit was different for each family member. This exemplifies the individualized nature of grief and how it should be handled as such when counseling or supporting the bereaved person. Neimeyer (2000) advocated a more ‘‘refined and clinically rich conception of the process of meaning reconstruction, one that accredits its complexity, its social character, and the conditions that facilitate or impede it’’ (p. 555). The present project works toward these goals.
CONCLUSION The current study has limitations, particularly in terms of sample size and combined dyadic and individual interviews. Nevertheless, the narrative approach enabled me to recognize the complex feelings and endeavors involved in making meaning. The themes that arose across the stories helped further develop meaning making from a theoretical perspective, adding the notion of foundation formation and philanthropy. These parents expressed the pain brought forth in developing their organizations and continuing bonds, but also the joy that came from helping others and finding purpose in their children’s deaths. They highlighted the social character of meaning construction and the importance of the impact they have made on various communities. They are reaching out to people other than themselves to memorialize their children, make sense of the death, and create good. Jody shared a quote from her counselor, who may have had it right when he said, ‘‘When you are hurting one of the most significant things you can do is help somebody else who’s hurting.’’ Although this coping strategy may not work for everyone, helping others may be a viable source of renewal, reconstruction, and continued bonds for bereaved individuals attempting to make meaning and find purpose in their grief processes.
GRIEF AND MEANING
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