Part II: Executive Summary
II. EXECUTIVE SUMMARY
The Statewide Hospice Clergy End-of-Life Education Enhancement Project was launched during the summer, 2002. The project was managed by the Hospice Foundation of America (HFA) on behalf of the Florida Department of Elder Affairs as part of a statewide effort to enhance care for the dying by improving the knowledge base of clergy and faith communities in end-of-life care. The goal of the Clergy End-of-Life Education Project (as the project became known) is to mitigate the deleterious physical and mental effects of futile aggressive care at the end of life by educating faith communities on end-of-life options, so that they may more effectively minister to families facing impending loss.
The project was specifically designed for professional clergy, lay leaders, and faith communities that would benefit from end-of-life education. The target audience included clergy, lay leaders, deacons, clergy in training, chaplains and directors of pastoral care services, hospital and home visitation ministry leaders and others who minister to the sick and the bereaved, and their families.
PLANNING
The launching of the educational sessions for the Clergy End-of-Life Education Project was preceded by multiple planning steps that encompassed a wide array of developmental and outreach activities. The planning steps for the program included:
Selection of subcontractor. Hospice Foundation of America selected the Health Council of South Florida (HCSF) as a collaborative partner to conduct the program on behalf of the State. The Health Council was selected because of its abilities in planning and evaluation, experience in the coordination of complicated projects, and its demonstrated commitment to improving care for the dying. The Executive Director of HCSF is President of the American Health Planning Association. That leadership would be an important factor in coordinating the involvement of other regional health planning councils.
Identification of Regions for Program Demonstration. HFA and HCSF identified nine counties as target areas for the Clergy End-of-Life Education Project. Key factors considered were the size of the population, availability of hospice support, urban and rural representation, and ethnic diversity to reflect the dynamic mix of Florida's communities. Six of the eleven local health councils in the State of Florida were chosen to serve as regional coordinators to conduct the educational sessions. They were chosen because of their local involvement in selected communities and the project team's efforts to include both urban and rural areas.
Formation of a Statewide Advisory Committee. Project oversight was provided by an Advisory Committee. The committee was comprised of 15 members representing hospice organizations, university ethics and gerontology programs, clergy members, and medical care providers. The Advisory Committee conducted two formal meetings to review the selection of regions, the work plan and products produced by the project management team. In addition, work in progress was reviewed by the committee via e-mail. The
committee provided valuable guidance on the projects direction, development of the curriculum and review of the final report.
Recruitment and Training of Regional Coordinators. The Health Council of South Florida recruited five regional health councils to participate in the project, in addition to itself acting as a region. The executive directors of these health councils became the project's regional coordinators. Each regional coordinator recruited two to three regional trainers. One of the trainers selected was required to be a local clergy person or a lay leader, the second trainer was a member from the local health planning council, and the third a hospice provider.
Development of Project Materials: All the materials for the clergy project were incorporated into a toolkit for simplified dissemination and program compliance. The toolkit items consisted of:
Curriculum Materials.
On the advice of the Advisory Committee, seven modules were suggested for the clergy participant's curriculum: Cultural Considerations at the End of Life; The Dying Process; End-of-Life Options; The Grief Process; Assisting Families; The Role of Spiritual Care; Self Care for Clergy. A trainer's manual containing learning objectives, curriculum, suggested training methodologies, case studies, definitions, handout materials and a slide presentation was developed and distributed to trainers.
Outreach/Marketing Materials.
A variety of materials were developed to announce and promote the statewide educational sessions. They consisted of an outreach brochure for direct mail, program flyer, a press release, a radio public service announcement, and a questions and answers document to be utilized as a guide for media interviews. These were provided to the regional coordinators on a compact disk and as hard copy.
Clergy Materials.
Each clergy participant was given a Participant's Manual that corresponded to the content information in the Trainer's Manual. Supplemental materials were also provided including an audiotape program entitled, Clergy To Clergy: Helping You Minister To Families in Need, a book, Caregiving and Loss: Family Needs, Professional Responses and one other book on grief and loss from the Hospice Foundation of America series.
Consumer (Family) Materials.
The project managers conducted a literature search and selected a variety of resources for individuals with a life limiting illness and their families to help them through the dying process and after. These materials were packaged in a folder and provided to clergy to give to the families they counsel. Three thousand kits were delivered to clergy for distribution.
Regional Coordinator Training. Over 30 regional coordinators and trainers from across the state were recruited for an all-day workshop held in Ft. Lauderdale on December 11, 2002. During the seven-hour intensive training session, trainers were given an overview of the Trainer's Manual and a sample of the outreach/marketing and consumer materials.
Creation of training calendar and outreach. Each regional coordinator identified three to five tentative dates and locations in his/her target counties for the educational sessions. A training calendar was created to guide the process and facilitate coordination between the regions. They identified and compiled a list of potential clergy, lay leaders, clergy groups/associations, clergy in training groups, places of worship, hospices, and leaders of community-based organizations to promote the Clergy End-of-Life Education Project. Approximately 6,000 outreach brochures were mailed to promote the educational sessions throughout the participating regions.
IMPLEMENTATION
The implementation phase of the project occurred between January and April, 2003. The first training session was held in Miami-Dade County by the HCSF to pilot test the format, agenda and materials for suitability, and to garner initial feedback from the participants. The pilot session was videotaped, reproduced and distributed to the other regions. A telephone conference call was facilitated by HCSF to discuss lessons learned from the pilot test. Two additional conference calls were held during the program period to share successful outreach techniques, presentation tips and administrative issues. Ongoing advice and assistance by telephone was also available through an identified HCSF staff member.
Between February 5th and April 23, 2003 twenty two educational sessions were conducted across Florida. Over 613 participants attended, of whom 54% were clergy or pastoral care personnel. The remainder included caregivers, social workers, bereavement and outreach workers, lay volunteers and church administrators. Fifteen of 22 sessions were held in churches. The average attendance in the church setting was 10% higher than those sessions held in other locations.
EVALUATION
To evaluate the outcome of the sessions, pre- and post-test self-reporting forms were developed. The 613 participants were given a strong incentive to complete the forms, resulting in a high response rate. The average age of participants ranged from 40 to 60 years old, but notably 10% were over the age of 70. Men and women were equally represented. Two-thirds of participants were White, about 13% African American, and 9% were Hispanic.
In terms of outreach, most participants heard of the educational sessions through the mail or by phone invitation. In Northwest Florida a PSA and television coverage may have generated a large turnout. It was also noted that positive word of mouth built momentum over time as news of the value of the program spread within the clergy community.
Pre-Test and Post-Test Summary. A high proportion of participants (80%) reported that they had a higher level of knowledge of end-of-life care issues upon completion of the training. It appears that trainees felt confident that the training had helped them understand medical and spiritual issues in a manner that would improve their ministry. In addition, they expressed that the experience had helped them address personal issues. They also felt better informed about technical, procedural and legal issues than they had prior to the training, but their responses did not express quite as high a degree of confidence in their mastery of these issues. The general unfamiliarity with legal and technical issues may be the reason that a number of participants asked for a longer program and more training.
All participants stated that they intend to utilize the curriculum and consumer materials in their communities. This intention appears consistent with the high utility score awarded to the consumer materials. This strong emphasis on useful materials for application in home communities suggests that maintenance of communication and updating of materials may be important post-training support mechanisms for the participants.
It is reasonable to anticipate that the impact of the training offered in 2003 will affect many communities and extend the value of the program delivered. The clergy and lay leadership were left with a body of knowledge, resources to draw upon and material to give their parishioners. The project was able to accomplish this at a low per unit cost. We expect this educational effort will reap benefits to the terminally ill and their families across the state for many years to come.
RECOMMENDATIONS
The Advisory Committee convened at the conclusion of the project and reviewed the logistics of the project and the evaluation results. The major recommendations coming from the meeting arise from the lessons learned. There were three lessons that stood out beyond all others: the need for cultural sensitivity in the curriculum; the importance of self care for clergy; the balance between didactic and participatory presentations.
Cultural components are difficult to incorporate directly into curriculum, but one good way to ensure cultural competency is to utilize local input and expertise to address issues distinctive to ethnic or cultural groups. It is important that clergy of other ethnic groups understand the taboos, rituals and customs of their neighbors. One of the most well received modules was self care for clergy. Many clergy indicated that the educational sessions were the first time that anyone validated the workplace induced stress they experience, and while that recognition helped greatly, the module should be expanded and included in future educational sessions. The project managers struggled to reach a balance between didactic presentations and participatory presentations. Both received high scores, but those regions that emphasized a more participatory approach saw less negative scores. This indicates that the agendas developed need to be reviewed with a goal of being more active.
A number of other interesting recommendations are offered, including creating the curriculum in Spanish and the inclusion of a module on children and grief.
