Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

An Interview with Robin Kramer, MS, RN, PNP

Many families who experience the loss of a child also lose the supportive relationships they have had with the health care providers who cared for their child throughout the course of his or her illness. The creation of the University of California at San Francisco (UCSF) Children's Hospital Bereavement Weekend Retreat was fueled by Robin Kramer's conviction that bereavement care for families is a responsibility of the health care professionals who treated the child and with whom the child's family has already developed a relationship. The retreat, which occurs in an outdoor setting over the course of a weekend, creates an opportunity for families of pediatric oncology and bone marrow transplant patients who died to reconnect with staff members who cared for the deceased child and to join with other bereaved families in remembering these children. The weekend contains a series of grief and bereavement workshops for parents and siblings, presentations by experts, and a memorial service. A unique feature of this program is the pairing of outside bereavement counselors with UCSF staff to co-lead support groups for parents and groups for siblings of the deceased children. The first retreat was held in 1994 and the fifth will take place in June 2002. In the following interview, Robin Kramer MS, RN, PNP speaks with Staff Editor Samantha Libby Sodickson about how the model for the retreat has changed over time, and how she feels health care professionals can better serve the needs of families who have lost a child. [Citation: Kramer R, Sodickson SL. A weekend retreat for parents and siblings of children who have died: An interview with Robin Kramer. Innovations in End-of-Life Care. 2001;3(3), www.edc.org/lastacts/]

Impetus for the Bereavement Retreat

Can you describe the work that you do in your daily practice, and how you came to start the bereavement retreat?

I have worked at UCSF Children's Hospital since 1983 as a pediatric oncology clinical nurse specialist and pediatric nurse practitioner. I function mostly in the advanced practice role of a clinical nurse specialist, although I do periodic, limited histories and physicals as they relate to handling problems, such as the management of side effects.

When I started at UCSF Children's Hospital as a new master's-prepared nurse, I was impressed with the home death program established by the Division of Pediatric Oncology. Families were acculturated to the practice of family-centered care that supported, and even encouraged, the choice of having their child die at home. The majority of children had planned home deaths. That was novel in 1983. It was, by and large, because of Arthur Ablin, MD, Professor Emeritus, who was the Division Chief of Pediatric Oncology at that time. Dr. Ablin had very strong feelings about end-of-life care for children and their families. His approach was based on the premise that one always provides treatment for children—treatment is never stopped. Dr. Ablin emphasized that the goals for treatment may change from cure to palliation, where care focuses on extending the child's life as long as possible while promoting comfort measures and quality of life. Dr. Ablin believed that children with incurable disease should, if possible, help establish the goals for treatment with their families before choosing what that treatment should be. The goals for treatment determine the appropriateness of various treatment options. I was very impressed with this philosophy and really embraced it—it felt like the right way to help children and families at the end of life.

About seven years ago, we had an excellent conference at UCSF on grief and bereavement. Linda Silver, RN, MFT, a psychotherapist facilitator, presented core didactic content and conducted interactive, group work with the staff. The group was multidisciplinary, with primarily nurses, social workers, and child life specialists in attendance. The conference helped us identify and better understand the complex needs of families and staff with regard to grief and bereavement. At the end of the day, we participated in a brainstorming session to develop strategies that would address those needs. It became very apparent to me that we really had no formal bereavement follow up. All of a sudden I saw how these relationships between families and staff, which often span several years and become very meaningful and supportive, come to an abrupt end when the child dies. I don't think we fully appreciate how important the support families receive from us can be. What parents experience as helpful is not always obvious, sometimes it is just being there and listening—it isn't always about handling a crisis situation. But after the child dies, all that shared history and all that support seem to disappear.

I think that the separation is also hard for the nursing staff. At the conference, there was some discussion about feeling guilty after a child dies—many times we never know if the families recover from their loss. Because we have primary nursing, the nurses on the floor often keep in touch with the families, but by and large it's on their own time; it's very informal and sporadic. Our social workers also provide bereavement follow up but realistically, the needs of children and families at the medical center take precedence. It is often hard to find the time and energy to call bereaved families. It was clear that what we had in place was not an ideal bereavement follow-up program.

During this conference, we talked about how isolated families often feel after the death of their child. The feedback we had received from families indicated that there was a reluctance on their part to depend solely on friends for continued support. They found it difficult to talk to most people about their feelings, because they sensed that such discussion makes others feel uneasy. Often, bereaved families perceive that other people have an expectation that they should be getting on with their lives.

At that point, I realized that we were probably in the best position to offer support to families because we had experienced the child's illness, and ultimately, the child's death with them. Many of these families lived several hours from San Francisco, so I knew that we couldn't be responsible for all their bereavement support. Every community differs in how much support is available. If the child had died at home, families would have been connected with a hospice, which provides bereavement services. It occurred to me that we could try to augment what was already available in their communities. Families benefit from having different types and sources of support. I felt a strong sense of obligation and responsibility to these families for providing a piece of their bereavement care.

Some grief and bereavement professionals believe that bereaved families find it too painful to reconnect with the people or place associated with their child's death. Can you speak to this concern?

My experience has been that even though parents do find it difficult to return to the medical center, they seem to want to stay in touch with the people who "cared about" and "cared for" their child. It is the physical structure, not the health care professionals that they associate with the child's death. This is not to say that families do not experience ambivalent feelings when they reconnect with hospital staff. Talking with or seeing people associated with their hospital experiences can bring back painful memories. I suspect this is the reason why we have had several families cancel their plans to attend the retreat at the last minute or just not show up.

Germination of the Retreat Model and Initial Funding

How did you come to see the weekend retreat as a solution?

When you call families periodically, as many follow-up bereavement programs do, it can be very limiting in terms of how much you can help them. There is only so much counseling or assessment that you can do on the telephone. I really felt that in order to provide something of significance to these families, it would be helpful to have a face-to-face intervention that occurred over a longer period of time. At an intensive weekend retreat we can address difficult issues in more depth, and families can choose to engage at the level that was most meaningful to them. As staff, we have the opportunity to follow up with families and then to check in with them informally over the course of the weekend to see how they are doing.

How did you make the jump from having the idea of an intensive weekend to implementing the steps to put the retreat together?

One of the things that made it possible was the availability of funds. In 1990, Patrick Thomson died from relapsed leukemia after a bone marrow transplant. He died at home just after his eighteenth birthday. His parents, Sheila and Ed Thomson, started a memorial fund at UCSF to honor his life. That money was earmarked for "supportive care," i.e., providing services or resources that could ease the burden for families with dying children. After we further defined the concept of a family bereavement retreat, I approached the Thomsons with the idea and they said, "Oh, that's perfect!" They felt very strongly that this was how the funds should be used. I told them that we might bring the account close to zero if we developed the retreat the way we ideally envisioned it, but they said, "Use it all. We'll raise more money." Having that money really broadened the range of possibilities of what we could plan for the weekend.

What kind of institutional support have you had from UCSF Children's Hospital?

The institution believes the program is very worthwhile and supports our efforts in a number of ways. Nursing administration's financial contributions have varied with each retreat, based on our requests. For example, they have provided gifts for families and staff, as well as honoraria for the keynote speakers. The institution also absorbs the costs associated with photocopying, mailings, and some administrative support. As the retreat date gets closer, a significant amount of time is spent at planning meetings on and off campus. Staff is afforded a great deal of autonomy and flexibility in determining how they allocate their time. Our institution is very proud of our continued efforts, which are responsible for an ongoing, successful program. In fact, the Bereavement Retreat Weekend received campus-wide recognition this past spring.

Key Concepts and Guiding Principles: The Backbone of the Retreat

What are the guiding principles used in conceptualizing the weekend? What key elements must be included in the retreat?

Privacy: We feel it is important for each family to have some privacy, so when we looked at places to hold the retreat, we didn't consider facilities that had dormitory-type housing. At the retreat, each family has their own room, with a shared bath at the end of a hall. If families have more than two or three children, then we give them two adjacent rooms. We found a place called Walker Creek Ranch, which is a really beautiful outdoor educational facility in northern California. It is in lovely rolling hills, about 60 minutes north of San Francisco.

Comprehensive Parent Program: There are several program components that we include in the parent's program. The first is a keynote address, "The Layers of Grief," which sets the stage for the weekend. Parents and young adult siblings attend this presentation. When we began, we tried to find out if there were other groups who were already doing this kind of work and if they had identified the range of topic areas that might be helpful for bereaved parents. Compassionate Friends¹ had an annual conference and their program included concurrent, mini-workshops on different topics that participants could choose from based on their preferences. We decided to use this same model for our program, but co-lead each session by mental health specialists experienced in bereavement issues and UCSF staff. These sessions include a variety of topics, such as: A Father's Grief, The First Year of Grief, Grief and Marriage, Anger, and Guilt, and Supporting Siblings. We have added a new session or two at each subsequent retreat based on the feedback we have received from families. [Breakout Session Topics Handout]

Free Babysitting for Children under Three Years Old: We realize that parents cannot take full advantage of the program offerings unless we provide babysitting for the very young children, those younger than three years of age. We wanted parents to be able to participate in these workshops without having a six-month-old in their lap or a toddler running around. We found experienced babysitters, all of whom were 18 years of age or older. At the last retreat, six babysitters cared for twelve young children, including two children with special needs.

Comprehensive Children's Program:² We place the children (ages three and up) in age-based groups depending on the number and ages of children who sign up for each retreat. We create very specific, age-appropriate therapeutic activities, which include an "ice breaker" group activity, an introduction to the project, a specific project with a theme around grief or bereavement issues, and a closing activity. At the most recent retreat, we had ten project facilitators (UCSF staff and therapists experienced in childhood bereavement), who directed the children's activities along with assistance from "camp counselors," who are also UCSF staff nurses and child life specialists assigned to each age group. Examples of projects include making memory boxes and mandalas or shields of strength. These kinds of activities are interspersed with fun, group-building activities, such as a ropes course, field sports, a creek walk, and swimming.

With each retreat, the children's program has grown in size. For the last retreat, surviving siblings were divided into four groups. The pre-school group (ages 3-5) had ten children with three camp counselors; the early school age group (ages 6-8) had eight children with two camp counselors; the older school-age group (ages 9-12) had 15 children with four camp counselors; and the teen group (ages 13-17) had 14 adolescents with three camp counselors. [See Children's Program for details about planned activities for different age groups.]

Family Time: We want to make sure family members have time to connect and debrief with one another. It seems natural that meal times should be family time, so children eat all meals with their parents. A square dance Saturday night has proven to be a marvelous way for families to just have fun together at the end of the day.

Remembering the Children Who Died: Families send photographs of their deceased children to us beforehand, so we can make photo buttons for them to wear. It is important to acknowledge all the children who have died as continuing to be important family members. Their untimely death is what brings us together as a group. Even though they are physically absent, their presence is keenly felt throughout the weekend.

A nondenominational memorial service called " A Time for Remembering" takes place on Sunday morning and lasts approximately 30 minutes. We gather together in an outdoor theatre-style area while music is playing. Our chaplain leads the memorial service, which includes both songs and readings. The names of the children who have died are read by a group of four staff nurses from the pediatric oncology/bone marrow transplant unit. We close the service by placing flowers, either live or silk, on a large barren branch, symbolizing the continuation of life and hope. We encourage family members to think a special thought, prayer, or message for the deceased child as they place the flower on the branch. The memorial used to be at the end of the retreat on Sunday morning, right before lunch, after which time people left for home. At the last retreat we held the memorial service mid-morning, followed by a closing address, and lunch. We made this change because we wanted to end the weekend with an uplifting closing speaker. We were hoping it could be somewhat inspirational for the families, maybe reaffirming that there can be enjoyment of life along with very bittersweet memories. We think that adding a closing address helped families and staff feel stronger when they left the retreat, and not feel so overwhelmed with sadness.

Time for Relaxation, Fun and Networking Among Families: It is important to build in times for relaxing and networking. For parents, we schedule a square dance Saturday evening and a nature walk Sunday morning. We also hope that families connect and network during meal times. During the welcoming orientation on Saturday morning, just prior to the keynote address, we acknowledge that the weekend holds a full schedule with content that may be very overwhelming. We encourage parents to skip a breakout session if they needed time to themselves. They can take a walk and enjoy the beautiful surroundings or even take a nap. [Family Bereavement Retreat Program Schedule]

Who worked with you initially to put the retreat together?

A small, multidisciplinary group organized the first retreat.³ Our planning group has grown to include about fifteen individuals with representation from nursing, social work, spiritual care, and child life. The final product results from the synergy of everyone's creativity, commitment, and compassion.

No one person can plan it all. I am largely the detail task-master—I keep track of all the details, figure out all that needs to be done, work out the timeline for getting it done, and make sure that we're on track at different time points. One thing we have found that works well is delegating different pieces to smaller groups of people. We have had several mini-task forces of two to three people working on different areas, and that has helped make things run smoothly.

How are physicians involved?

Physicians were not represented in the planning phase, although many participated by attending the retreat. They most often come to the memorial on Sunday morning and then stay for lunch. Some of them, who can't make the memorial service, come for dinner on Saturday night and stay for the square dance later that evening. For the past two retreats, two physicians have co-led breakout sessions. The physicians have become more involved over time and are very supportive of our efforts.

Do you have any insights as to why it's hard to get all of the clinical staff to participate?

There are multiple reasons why all of the staff do not participate. Some people are very protective of their private time. Sometimes, unfortunately, people just feel uncomfortable or uneasy with bereaved families. I suppose they feel that it is too depressing. Also, when staff members have experienced a recent serious illness or death in their own family, some have chosen not to participate. We have been very supportive of that decision. Then, of course, there is a group of staff who must work at the hospital that weekend, so they cannot attend. Over the years, as staff members have learned more about the retreat weekend, their level of participation has increased.

How many families do you invite to the retreat? How many come?

We invite all families whose child died within the past five years and who speak English (even if is a small amount) or Spanish. All mailings are translated into Spanish. Some children come to UCSF Children's Hospital from all over the country or world for special treatments. If they were primarily treated elsewhere, and only came here for specialized treatment, then we do not invite them. We probably had about 45 adults and 30 surviving siblings at the first retreat in 1994. The number of participants has grown at subsequent retreats. We probably invited close to 110 families for our last retreat in June 2000. We were expecting 78 parents (from 45 families), but only 60 actually attended (representing 37 families). That is a 23 percent cancellation rate, in term of parents, or 18 percent in terms of families, which I believe is higher than the previous retreats. Some families called several days before to cancel and others just didn't come or only the mother came with the children. We were expecting 79 children, including young adult siblings, but only 59 came. A large cancellation or "no show" rate makes it difficult to coordinate resources based on accurate numbers of expected participants.

Were there any changes made to the basic structure from year to year?

Starting with the third retreat, we decided to find a way to include Spanish-speaking families. We hired one of our medical interpreters to provide simultaneous interpretation of the opening keynote address from English into Spanish, with headphones for the Spanish-speaking participants. In addition, we found bilingual therapists to lead a Spanish-speaking support group.

We have simplified the process of choosing breakout session topics over time. The first year we asked adults to select their top three choices from a list of ten topics on the registration form. It proved to be quite a chore to collate these choices, figure out which topics we were going to offer at each of the three breakout sessions, and then to assign people to their first three preferences. In subsequent years, we have simply offered 7-9 choices for each of the three breakout sessions and let people choose what to attend. We have come to learn which topics arethe most popular and try to include them twice during the weekend. At the last retreat we offered a writer's workshop as a strategy to help parents work through their grief.

At the last two retreats, we have given each family a gift. The gift is a welcoming gesture, as we leave a card with the gift in each room for the family to find on their arrival. The gift also serves as a memento of the weekend to take home. Many people believe the butterfly represents life in the hereafter when one's spirit is set free. We have seen many families who have had a loved one die gravitate toward butterfly objects. Last year, I found a little pewter butterfly stand holding a rose quartz egg (rose quartz is a symbol of love), which we gave to the families. This year, my colleague, Janet Veatch, found beautiful blue and white porcelain butterfly boxes to give to the families.

Is it hard for the families to leave the retreat? What kind of follow up do you have after the weekend?

We do try to warn the parents as they leave that there might be a little bit of a letdown. Throughout the weekend they have been in an environment where they felt comfortable and safe in talking freely to people who have had similar experiences. They were able to renew old friendships with staff and make new friends. Then, they have to go back to their every day lives where they do not have the same level of support for their grief. We address this difficult transition with families before they leave. We also send a follow-up note about a week after the retreat, acknowledging that it may have been difficult when they first returned home. We let them know that we are thinking of them and that we are very glad they came to the retreat weekend. We encourage them to feel free to contact us should they have any questions, or if any issues come up, which they think we might be able to help them with. We often get personal notes from families after the retreat to thank us for providing this helpful weekend.

Staffing and Cost of the Bereavement Retreat

Are the people who staff the retreat paid, or do they volunteer their time?

Outside bereavement specialists receive a $150 honorarium for co-leading a 90-minute support group. This really represents a small token of our appreciation because the outside facilitators spend the better part of their weekend day involved in the retreat. About 80 percent of the therapists return year after year because it has been such a positive and rewarding experience. They feel very strongly that their participation has been worthwhile for families as well as for themselves.

All of the approximately twenty-five UCSF staff members volunteer their time. I suspect that some people take compensatory days to offset the time that they spent at the retreat over the weekend. But during the planning months, many people put in extra hours at both work and home, and are not compensated for this extra time. This is one of the biggest limitations of the retreat. It takes an enormous amount of effort to plan such a complex weekend. It would be difficult to offer it more frequently than every two years because of this reason. The retreat is a labor of love.

How much does this kind of retreat cost and what kind of fundraising do you do in order to make sure it happens?

The direct costs associated with the most recent retreat were approximately $16,000–$18,000. Most of this figure represents the room and board for families and staff, and the honoraria for the outside bereavement facilitators for the adult and children's programs. It also includes administrative supplies, snack foods and art supplies.

The Patrick Thomson Memorial Fund has consistently covered the majority of the weekend's costs. We have not really instituted formal fundraising efforts, although several pharmaceutical companies have made donations on a regular basis. For the third retreat we applied to the National Children's Cancer Society, which gave us a generous grant to support the program's overall costs.

For our last retreat we had an unexpected donor, Wish Upon A Star, a local organization that grants wishes to children with life-threatening illnesses. The organization wanted to augment the support that they had already provided for many of these same families. Their generous donation helped cover the costs of honoraria for guest speakers and room and board costs for the families.

Staff Preparation and Training

Do you have any special training for the staff in preparation for the retreat?

Before the retreat, the children's program subcommittee meets 4-5 times as a large group and 2-3 times in smaller work groups to plan and discuss all of the details of the various activities, including the necessary supplies. This subcommittee consists of five UCSF staff (two advanced practice nurses, one social worker and two child life specialists) and five consultants who have an expertise in childhood bereavement (from two Bay Area hospices and a local college BSN nursing program).

Over the years, we have developed a core group of outside facilitators who have participated in multiple retreats. We try to pair them up with members of the UCSF staff with whom they have worked before. We do not require that co-facilitators meet ahead of time, but we encourage them to speak by telephone. We respect the fact that people have limited extra time and that they are professionals. Many do meet prior to the retreat, especially if they have not worked together before.

The training and orientation for staff who are not on the task force is mostly informal. The one group for whom we do target some specific preparation is the UCSF staff members who serve as "camp counselors" in the children's program. The task force member in charge of coordinating these staff members provides them with an overview of the weekend, explains their role, and reviews the list of children that will be in their respective groups. The "camp counselors" receive the detailed children's program agenda to guide them through the weekend's activities. We do not have any specific grief and bereavement discussions before or after the retreat in terms of critical issues and the feelings that may be evoked. Although these "camp counselors" are experienced pediatric oncology nurses and child life specialists, more formal orientation training and debriefing would be optimal. We hope to address this for our next retreat in June 2002.

Staff Debriefing

About ten days after the retreat, we have a UCSF task force debriefing and evaluation session. We believe that there might be a benefit from having a short debriefing at Walker Creek Ranch immediately after the retreat, particularly with the "camp counselors" from the children's program. It has been apparent that a processing piece, in which the staff could sit and talk about the kids, what happened during the weekend, or what the families might be experiencing would be helpful.

Asking staff to stay an extra hour or so Sunday afternoon, when they have just spent their weekend volunteering at the retreat, may be expecting too much. We will have to find ways to streamline, clean up, and efficiently debrief with staff, so they can get back to their own families.

Evaluation and Feedback

What kind of feedback have you had from the people who have been to the retreats, both staff and families?

Parents, staff, and the children fill out program evaluations that rate the accommodations and each specific activity that they participated in. We also include several open-ended questions about what they enjoyed the most and least, what they would like added at future retreats, and their overall impressions. The responses have been overwhelmingly positive. The feedback has indicated that our model and structure for the weekend seems to be meeting people's needs. I'd like to share a sampling of quotes from the different groups of participants--their own words summarize their impressions better than I can.

Outside bereavement co-facilitators' overall impressions of the retreat:

"I thought it was extraordinary. I was deeply touched by the whole experience. I felt privileged to be a part of it. I saw that the participants looked more relaxed by the end. Their expressions seemed lighter. Thank you for this opportunity."

"...powerful and meaningful…"

"...filled an important need for families."

Parents' comments:

"I left the retreat feeling good about where I am in my grieving with my son's death. I gained that mostly over the weekend."

" The family retreat offered me a place to openly mourn the death of my son. My grief was validated and my struggle was shared by others who truly understood the journey. It was a valuable support system."

Comments from children and teens:

"Sometimes kids (teens especially) don't understand the importance of talking about feelings, and they need a push—like the Rock Ceremony—I'd like to have more things like that."

"I loved the arts and crafts and the rooms and being with others."

"I liked everything. It was fun and we should do it again next year. I want my Dad to come."

"It was fun—the way that we got our own little groups and just had fun."

Several of the teens said that the worst part of the retreat was "having to leave!"

Are you measuring any outcomes?

In terms of outcome measures, we have not done any pre- and post-testing to look at changes in areas such as coping, depression, or family functioning. However, recognizing the importance of outcome measures, I have been meeting with Betty Davies, PhD, RN in the School of Nursing at UCSF. We are trying to plan a bereavement research study that will involve the families at the retreat next year. I hope that we will be able to have more specific outcome data in the future by studying the impact of the retreat, itself, as a bereavement intervention.

How would you say the camp experience has affected your approach to bereavement, and your clinical work at Children's Hospital?

I have come to appreciate how complex the bereavement and healing process is for families. I am committed to insuring that the bereavement retreat weekend continues to occur every 18-24 months.

Shortly after the retreat in June, 2000, I had an epiphany. I believe that what happens before the child dies, including the palliative care phase and how the transition from cure to palliation was managed, plays a critical role in families' bereavement experiences. We are zealous in our efforts to cure children—we use sophisticated diagnostic techniques, antibiotics, transfusions, radiation, surgery, and multiple chemotherapy regimens in our efforts to cure children. We need to have that same kind of zealous approach for effective symptom management and psychosocial support during the palliative phase of care. So, once I had time to regroup after the June retreat, I decided I wanted to start a palliative care task force to look at how we might improve pediatric end-of-life care at my institution. I think that it shouldnot be just for oncology patients; all pediatric patients need to be included. Although I have always had a strong interest in end-of-life care, the last retreat really launched me in the direction of starting a pediatric palliative care program at UCSF Children's Hospital.

Limitations of the Retreat Model

What are the barriers to designing and implementing the retreat?

It takes an enormous amount of work to plan, organize, and implement this kind of event. We all agreed that the bereavement retreat was a great idea, it was needed, and it was the proper way to spend the funds from the Patrick Thomson Memorial account. But the question was: How could we take on more work when we can barely get all the work done that we already need to do?

So, one of the key limitations of our program has been the amount of extra work it entails, much of which is volunteer. Perhaps having access to a cadre of bereavement professionals who are willing to work for a token fee for the weekend is also a limitation to the program's being replicated on a broader scale in other parts of the country. However, the flip side of these possible limitations is that we succeed in spite of the amount of effort it requires, which suggests that the program meets staff needs as well.

Another limitation of the program is our inability to support families who do not speak English. Unfortunately, we have had to exclude families who speak a language in which we do not have interpreters or fluent, trained therapists. In addition, we have not been able to help families who choose not to attend. Although, we would love to expand our bereavement program by using additional ongoing interventions, we just do not have the resources in terms of manpower and finances, to do so at this time.

Advice for Replication: The Importance of Structure

What kind of advice would you give to other people who are looking to replicate this kind of program?

I would suggest that they start with a large task group to share the planning and implementation responsibilities. It is a tremendously worthwhile program for both families and staff. They need to start by answering important questions, such as: "What kind of weekend do we want it to be? What are the basic principles that we want to incorporate? Do we have institutional support? What resources do we need to identify to help us build a successful program?" Then, they just need to get started, working about one year in advance of the event.

The part that becomes very tedious and time-consuming is the administrative coordination of the program. I would advise others to get ongoing administrative support—meaning people who can help with certain responsibilities, such as setting up meetings for the planning group and with the outside consultants, organizing mailings, and handling various aspects of all of the correspondence. Additional tasks could include collating descriptive statistics of who does and does not participate in the program. This kind of assistance would be tremendously helpful.

The other piece of advice I'd like to offer is to emphasize a structured approach to the weekend. We try to be as flexible as possible within a structured framework of presentations and mini-support groups that are run by staff experienced in bereavement issues. We always give parents the option of participating in as much or as little as they are comfortable with while they are at the retreat. For example, we have an opening introduction and welcome, and we say to them, "If you need to leave this keynote address, get up and leave. That's perfectly fine. If you go to one workshop and then find you need to take a break, skip the next breakout session. Go take a walk. Go take a nap. Participate at what ever level feels comfortable. We are all here to support one another." We stress this message over and over again throughout the weekend. If parentssigned up for one workshop two weeks ago and now they think they want to go to a different one, then they can make the change. I believe it is helpful to create and offer a structured series of events and then be prepared to be flexible, as participants' needs and readiness to engage in the activities will differ.

In Conclusion

Can you summarize what you hope families take away from this kind of intervention?

I don't have any grand idea that families come to terms with their grief at the retreat, or that one weekend radically changes their lives and where they are within their healing process. What I hope it does is help move them a little along the way, particularly for families who might have been feeling immobilized, or that they just couldn't pick themselves up. Sometimes people can feel so overwhelmed and so alone, they don't know which way to turn. My hope is that this weekend acts like a compass, to point them in the right direction. I hope that the retreat helps families find the path to healing, and that it gives them some insight, strength, and support to be able to continue moving forward.

1. Compassionate Friends is an organization designed to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.[Return to Featured Innovation]

2. I consulted with two program coordinators/therapists at the Hospice of Marin to create our children's program. [Return to Featured Innovation]

3. The planning committee for the first bereavement retreat in June 1994 included Linda Abramovitz, MSN, RN, Adrianne Burton, MA, RN, Sarah Gordon, BSN, Robin Kramer, MS, RN, PNP, Judith Laughlin, LCSW, Cathy Portje, MSW, Rev. Rodney Seeger, MDiv, BCC, and Janet Veatch, MS, RN.[Return to Featured Innovation]

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