- Email: [email protected]
Complementary caring-healing practices of nursing: Caring for children with life-challenging illnesses and their families: A pilot project
Education Papers and Posters -
Helping Siblings Understand: Teaching by Doing, Talking, and Example JoAnn A. Belle-Isle and Tracy Kane, University of Rochester Children’s Hospital at Strong, Rochester, NY Goal: To create a participatory program for the whole family that focuses on the needs of siblings. Purpose: (1) To help siblings of children with cancer understand what occurs during clinic visits. (2) To give Parents and Teens a forum to share experiences and to express their feelings regarding issues related to childhood cancer. Description: The “Siblings Are Special” program was jointly planned by an Advanced Practice Nurse and Child Life Specialist in Pediatric Oncology in response to a Family Needs Survey that identified sibling issues as a priority. invitations to participate were sent to all parents of children actively receiving treatment. Volunteers were solicited from the multidisciplinary professional staff in clinic and community volunteers. Following a quick supper, the group (17 parents, 40 children and 30 volunteers) was divided into six subgroups that each had specific activities directed by the group leaders. Siblings ages 6 to 12 years were each paired with a nurse from clinic. Using medical equipment, dolls, and a variety of prearranged scenarios, each sibling assumed the role of a nurse or physician and actively participated in the care of “patients.” Scenarios included the following: drawing blood from a central line, changing a dressing, administering blood, obtaining vital signs, giving injections and obtaining a bone marrow aspirate and lumbar puncture. The children were coached by the nurse leader who gave each child directions on how to perform various tasks and gave explanations about why each intervention was important. Parents and Teens each had separate small group discussions. The Parent Group included two parent volunteers whose children had completed therapy, and the Teen Group Journal
included two young adults who shared their recollections of having a sibling who received treatment for cancer. Patients (5 to 12 years of age) worked together to create a banner for their siblings and the very young children (under 4 yrs) played while being supervised by volunteers. Evaluation: A 10 item questionnaire was given to each family and completed by parents within five days of the program. The program coordinators met with each of the small group leaders to obtain feedback within the same time frame. Significance to oncology nursing: This program for siblings was extremely well received by families and was a positive experience for the nurses and staff who participated. It is a perfect example of how well nurses can teach by demonstrating their knowledge and skills. This program focused on siblings but included entire families.
Complementary Caring-Healing Practices of Nursing: Caring for Children With Life-Challenging Illnesses and Their Families: A Pilot Project Mary Jo Cleaveland, Children’s Hospital,
MS, RN, The Denver, CO
The purpose of the project was: (1) to develop and test and educational curriculum focused on complementary caring-healing modalities; and (2) to evaluate the effectiveness of the educational program in expanding nurses knowledge and clinical skills in caring-healing concepts and practices. The primary impetus for the Complementary Caring-Healing Project (CCHP) comes from the perception that caring and healing are often silent goals in the health care experience of children with life-challenging illnesses. While parents and professionals alike are giving tremendous energy to curing the child’s pathology, the child often suffers distress in body, mind and soul. Nurses are the caregivers that see the child’s distress and respond with creative and effective ways to lessen the discomfort. Yet, this is not given
of Pediatric Onco/ogy Nursing, Vo/ 15, No 2 (April),
1998: pp 11 g-125
119
120
the same importance in care planning and case management profiles as medically generated interventions. The CCHP consisted of a 6 month course of study that provided 42 hours of instruction, with didactic and experiential components. This was combined with 6 months of integration into practice supported by on-site facilitation by project staff. The educational curriculum was grounded in nursing theories of caring and healing, and provided instruction in the modalities of relaxation and imagery, massage, acupressure, therapeutic touch and music. The final module focused on integration into practice and rituals for self-care. The course was attended by 23 nurses from the Hematology-Oncology-Transplant inpatient unit.
Development of a Standard of Care for Pediatric Oncology Parent/Patient Education Katherine Patterson Kelly, MN, RN, CPON, Children’s Hospital at University of Missouri, Columbia, MO Patient and parent education needs for children newly diagnosed with a chronic illness such as cancer can be overwhelming. During the initial diagnostic period the family is bombarded with large volumes of medical information while they are in emotional crisis. This large amount of information is necessary to initiate treatment as soon as possible for the child with cancer. Parents need accurate information to make necessary treatment decisions initially and to manage their child at home. This presentation described the development of a comprehensive package of standardized educational plans and documentation instruments developed to facilitate the management of the pediatric oncology patient population at a large midwestern teaching children’s hospital. The protocols that have been developed assist the team caring for these children in the complicated process of patient/parent education in the newly diagnosed phase as well as in the ongoing care phase. The protocols were developed according to the Marker Model for standards implementation and are a part of a comprehensive
standard of care that has been developed care for this patient population.
to
ACE Navigator: Development of a Computer Program About Cancer Survivorship Debra A. Eshelman, MSN, RN, CPNP, Children’s Medical Center of Dallas, Dallas, TX Because of advances in treatment and better supportive therapies, children diagnosed with cancer are now surviving these previously fatal illnesses. It has now become necessary to educate survivors about their previous cancer, the treatment of the cancer, and the potential implications on their future health, specifically late effects. An institutional study on childhood cancer survivors’ knowledge of disease and treatment demonstrated that adolescent and young adult survivors lacked key information about their disease although they received written educational materials. The ACE Navigator, a Hypercard Macintosh-based computer program about cancer survivorship, was developed as an alternative method for survivor education. This paper will describe the development and implementation of the ACE Navigator, including a demonstration of the program.
Transition From Child-Centered to Adult Health Care: A Model Program for Cancer Survivors Debra A. Eshelman, MSN, RN, CPNP, Children’s Medical Center of Dallas, Dallas, TX Advances in cancer treatment and improved supportive therapy have contributed to increasing cure rates of pediatric malignancies, leading this pediatric oncology program to recognize the need for ongoing, systematic long-term follow-up of young adult cancer survivors. The ACE Young Adult Program, a cooperative effort between adult medicine and pediatric oncology within a university health care system, is presented as a model for development of additional transition programs for young adult cancer survivors and survivors of other chronic diseases. The design, development, barriers to transition
Helping Siblings Understand: Teaching by Doing, Talking, and Example JoAnn A. Belle-Isle and Tracy Kane, University of Rochester Children’s Hospital at Strong, Rochester, NY Goal: To create a participatory program for the whole family that focuses on the needs of siblings. Purpose: (1) To help siblings of children with cancer understand what occurs during clinic visits. (2) To give Parents and Teens a forum to share experiences and to express their feelings regarding issues related to childhood cancer. Description: The “Siblings Are Special” program was jointly planned by an Advanced Practice Nurse and Child Life Specialist in Pediatric Oncology in response to a Family Needs Survey that identified sibling issues as a priority. invitations to participate were sent to all parents of children actively receiving treatment. Volunteers were solicited from the multidisciplinary professional staff in clinic and community volunteers. Following a quick supper, the group (17 parents, 40 children and 30 volunteers) was divided into six subgroups that each had specific activities directed by the group leaders. Siblings ages 6 to 12 years were each paired with a nurse from clinic. Using medical equipment, dolls, and a variety of prearranged scenarios, each sibling assumed the role of a nurse or physician and actively participated in the care of “patients.” Scenarios included the following: drawing blood from a central line, changing a dressing, administering blood, obtaining vital signs, giving injections and obtaining a bone marrow aspirate and lumbar puncture. The children were coached by the nurse leader who gave each child directions on how to perform various tasks and gave explanations about why each intervention was important. Parents and Teens each had separate small group discussions. The Parent Group included two parent volunteers whose children had completed therapy, and the Teen Group Journal
included two young adults who shared their recollections of having a sibling who received treatment for cancer. Patients (5 to 12 years of age) worked together to create a banner for their siblings and the very young children (under 4 yrs) played while being supervised by volunteers. Evaluation: A 10 item questionnaire was given to each family and completed by parents within five days of the program. The program coordinators met with each of the small group leaders to obtain feedback within the same time frame. Significance to oncology nursing: This program for siblings was extremely well received by families and was a positive experience for the nurses and staff who participated. It is a perfect example of how well nurses can teach by demonstrating their knowledge and skills. This program focused on siblings but included entire families.
Complementary Caring-Healing Practices of Nursing: Caring for Children With Life-Challenging Illnesses and Their Families: A Pilot Project Mary Jo Cleaveland, Children’s Hospital,
MS, RN, The Denver, CO
The purpose of the project was: (1) to develop and test and educational curriculum focused on complementary caring-healing modalities; and (2) to evaluate the effectiveness of the educational program in expanding nurses knowledge and clinical skills in caring-healing concepts and practices. The primary impetus for the Complementary Caring-Healing Project (CCHP) comes from the perception that caring and healing are often silent goals in the health care experience of children with life-challenging illnesses. While parents and professionals alike are giving tremendous energy to curing the child’s pathology, the child often suffers distress in body, mind and soul. Nurses are the caregivers that see the child’s distress and respond with creative and effective ways to lessen the discomfort. Yet, this is not given
of Pediatric Onco/ogy Nursing, Vo/ 15, No 2 (April),
1998: pp 11 g-125
119
120
the same importance in care planning and case management profiles as medically generated interventions. The CCHP consisted of a 6 month course of study that provided 42 hours of instruction, with didactic and experiential components. This was combined with 6 months of integration into practice supported by on-site facilitation by project staff. The educational curriculum was grounded in nursing theories of caring and healing, and provided instruction in the modalities of relaxation and imagery, massage, acupressure, therapeutic touch and music. The final module focused on integration into practice and rituals for self-care. The course was attended by 23 nurses from the Hematology-Oncology-Transplant inpatient unit.
Development of a Standard of Care for Pediatric Oncology Parent/Patient Education Katherine Patterson Kelly, MN, RN, CPON, Children’s Hospital at University of Missouri, Columbia, MO Patient and parent education needs for children newly diagnosed with a chronic illness such as cancer can be overwhelming. During the initial diagnostic period the family is bombarded with large volumes of medical information while they are in emotional crisis. This large amount of information is necessary to initiate treatment as soon as possible for the child with cancer. Parents need accurate information to make necessary treatment decisions initially and to manage their child at home. This presentation described the development of a comprehensive package of standardized educational plans and documentation instruments developed to facilitate the management of the pediatric oncology patient population at a large midwestern teaching children’s hospital. The protocols that have been developed assist the team caring for these children in the complicated process of patient/parent education in the newly diagnosed phase as well as in the ongoing care phase. The protocols were developed according to the Marker Model for standards implementation and are a part of a comprehensive
standard of care that has been developed care for this patient population.
to
ACE Navigator: Development of a Computer Program About Cancer Survivorship Debra A. Eshelman, MSN, RN, CPNP, Children’s Medical Center of Dallas, Dallas, TX Because of advances in treatment and better supportive therapies, children diagnosed with cancer are now surviving these previously fatal illnesses. It has now become necessary to educate survivors about their previous cancer, the treatment of the cancer, and the potential implications on their future health, specifically late effects. An institutional study on childhood cancer survivors’ knowledge of disease and treatment demonstrated that adolescent and young adult survivors lacked key information about their disease although they received written educational materials. The ACE Navigator, a Hypercard Macintosh-based computer program about cancer survivorship, was developed as an alternative method for survivor education. This paper will describe the development and implementation of the ACE Navigator, including a demonstration of the program.
Transition From Child-Centered to Adult Health Care: A Model Program for Cancer Survivors Debra A. Eshelman, MSN, RN, CPNP, Children’s Medical Center of Dallas, Dallas, TX Advances in cancer treatment and improved supportive therapy have contributed to increasing cure rates of pediatric malignancies, leading this pediatric oncology program to recognize the need for ongoing, systematic long-term follow-up of young adult cancer survivors. The ACE Young Adult Program, a cooperative effort between adult medicine and pediatric oncology within a university health care system, is presented as a model for development of additional transition programs for young adult cancer survivors and survivors of other chronic diseases. The design, development, barriers to transition