Journal of Nursing Education

EDUCATIONAL INNOVATIONS 

The Child with a Chronic Condition: Parents Teach Advanced Practice Nursing Students

Roberta BradIey, MSN, RNC, FNP, PNP

Abstract

How do nurse educators convey to students the complexities of caring for the chronically ill child? In managed care settings, where 15 minute patient-provider encounters limit the time available for client assessment and formulation of treatment plans, many challenges exist for advance practice nurses (APNs). They must not only be knowledgeable about pathology, but also understand the individual child's day-to-day management needs.

Visiting with patients in their home setting is an effective way to assess the client, build trust, and formulate a plan of care for the client and family. Although home visits have been an integral mode of care delivery for nursing for more than a century (Lyon, Bolla, & Nies, 1997), most home health care activities have focused on the needs of the ill client.

In today's health care environment, where the focus has shifted to wellness and prevention measures, home visits can also be used to address health promotion and disease prevention interventions. Nurse educators could use the home setting to allow nursing students to interview clients and their families to collect data for the client's plan of care.

Realizing that students would learn much more from a home visit than from a brief encounter in an office setting, students enrolled in a course at Vanderbilt University School of Nursing were provided an opportunity to make home visits to families in which a child had a chronic illness. Students prepared for the visit by reviewing the literature pertinent to the child's condition. They also planned the timing of the visit to allow for the interview to take place in a relaxed atmosphere.

This paper describes themes identified during parent interviews conducted by APN students during home visits. It also reviews how the interviews fit into the framework of a pediatrie primary care course, and explains how families were identified, contacted, and interviewed.

PARENT INTERVIEWS

Pediatrie primary care providers work to address the health promotion and illness prevention needs of children. These needs are evident in all children, regardless of whether they are healthy or have an acute illness or chronic condition. As a result, APN students must recognize that children with chronic conditions have many of the same needs as normal, healthy individuals: growth and development needs, immunization needs, nutritional needs, safety needs, and anticipatory guidance needs. In addition, because children with chronic conditions require a variety of special services, their basic developmental and healthy living needs are often overlooked or ignored. Exposure to these considerations and involvement in discussions about how best to meet these families' needs help prepare APNs for the effective management of all families.

At Vanderbilt University School of Nursing, a Special Topics in Pediatrics course is taught for students enrolled in the Family Nurse Practitioner program. The course consists of didactic content and discussions about topics related to pediatrie primary care. Topics include attention deficit disorder, depression in the pediatrie client, diabetes in children, pediatrie HIV, physical and sexual abuse, and primary care of the child with a chronic condition. The overall focus of the course is on the role of the APN in the pediatrie primary care setting. The course is designed to facilitate student synthesis of new knowledge, development of critical thinking skills, and communication of ideas.

In previous years, students were required to select one topic from class and to prepare a scholarly paper based on current research and theory. During the past year, students were given the option of interviewing parents of children with a chronic condition to gain a deeper understanding of the condition and its impact on the family. Faculty had learned of a group of…

How do nurse educators convey to students the complexities of caring for the chronically ill child? In managed care settings, where 15 minute patient-provider encounters limit the time available for client assessment and formulation of treatment plans, many challenges exist for advance practice nurses (APNs). They must not only be knowledgeable about pathology, but also understand the individual child's day-to-day management needs.

Visiting with patients in their home setting is an effective way to assess the client, build trust, and formulate a plan of care for the client and family. Although home visits have been an integral mode of care delivery for nursing for more than a century (Lyon, Bolla, & Nies, 1997), most home health care activities have focused on the needs of the ill client.

In today's health care environment, where the focus has shifted to wellness and prevention measures, home visits can also be used to address health promotion and disease prevention interventions. Nurse educators could use the home setting to allow nursing students to interview clients and their families to collect data for the client's plan of care.

Realizing that students would learn much more from a home visit than from a brief encounter in an office setting, students enrolled in a course at Vanderbilt University School of Nursing were provided an opportunity to make home visits to families in which a child had a chronic illness. Students prepared for the visit by reviewing the literature pertinent to the child's condition. They also planned the timing of the visit to allow for the interview to take place in a relaxed atmosphere.

This paper describes themes identified during parent interviews conducted by APN students during home visits. It also reviews how the interviews fit into the framework of a pediatrie primary care course, and explains how families were identified, contacted, and interviewed.

PARENT INTERVIEWS

Pediatrie primary care providers work to address the health promotion and illness prevention needs of children. These needs are evident in all children, regardless of whether they are healthy or have an acute illness or chronic condition. As a result, APN students must recognize that children with chronic conditions have many of the same needs as normal, healthy individuals: growth and development needs, immunization needs, nutritional needs, safety needs, and anticipatory guidance needs. In addition, because children with chronic conditions require a variety of special services, their basic developmental and healthy living needs are often overlooked or ignored. Exposure to these considerations and involvement in discussions about how best to meet these families' needs help prepare APNs for the effective management of all families.

At Vanderbilt University School of Nursing, a Special Topics in Pediatrics course is taught for students enrolled in the Family Nurse Practitioner program. The course consists of didactic content and discussions about topics related to pediatrie primary care. Topics include attention deficit disorder, depression in the pediatrie client, diabetes in children, pediatrie HIV, physical and sexual abuse, and primary care of the child with a chronic condition. The overall focus of the course is on the role of the APN in the pediatrie primary care setting. The course is designed to facilitate student synthesis of new knowledge, development of critical thinking skills, and communication of ideas.

In previous years, students were required to select one topic from class and to prepare a scholarly paper based on current research and theory. During the past year, students were given the option of interviewing parents of children with a chronic condition to gain a deeper understanding of the condition and its impact on the family. Faculty had learned of a group of families with chronically ill children who were interested in participating in an educational experience for nursing students. Faculty members realized that contact with these families would provide an excellent opportunity for students.

Faculty contacted the family members and a pilot project was planned for a small group of students who were interested in meeting with parents of chronically ill children. Of 155 students enrolled in the class, 8 students participated in this optional experience. They conducted the interviews and then wrote a paper about their findings that incorporated a review of the literature and implications for APNs.

IDENTIFICATION OF FAMILIES

Families were identified through the F.A.C.T. (Families as Classroom Teachers) Program, a newly introduced organization within the Vanderbilt University Children's Hospital. This program links family members of children with chronic illnesses and disabilities to Vanderbilt faculty and students. Undergraduates, graduate students, medical and nursing students, and residents interact with these families for purposes of strengthening the partnerships between professionals and families. The goal of the F.A.C.T. program is to provide students with an opportunity to learn about issues pertinent to the care and development of children with chronic conditions. Family members are available to speak with students about personal experiences with chronic illnesses.

Students expressing an interest in this project described the types of chronic illnesses they wanted to study. Families who had children with chronic conditions were found through the FA.C.T. program. Eight families were identified and contacted by course faculty; all who were contacted were enthusiastic about participating in the interviews. Children with autism, mental retardation, pervasive developmental disorder, cerebral palsy, acute lymphocytic leukemia, chronic renal failure, and Ring chromosome 15 were included. The names and telephone numbers of families were given to students, who called and arranged for a time and place to conduct the interviews. Students were instructed to complete a preliminary review of the literature pertaining to the chronic condition prior to the visit and to develop questions for the interview session.

Faculty provided guidelines for interviewing the families. Students were prompted to ask about the specific medical condition of the child and to get a list of current medications. The goal of the interview was not necessarily to obtain a complete history and review of systems and physical findings, but to gain an understanding of the child's condition and treatment plan. Included in family information supplied by the FA.C.T. program was a list of "views we would like to share," and students were encouraged to explore those views. Students also were encouraged to ask if the parent had any "advice" for the beginning APN. Questions prepared by the student were reviewed prior to the interview by the faculty member. Questions identified by students focused on issues such as communication, the coping process, family-centered care, and family-professional partnerships.

Each student contacted the family by telephone. All but one interview was conducted in the home; one interview was conducted with the mother at a speech and hearing center while the child was attending a therapy session. AU inter* views included the mother, and one student's interview also included the father. Audio taping of the session was optional; 4 students chose to do so. Each interview Usted approximately 1 1/2 hours.

COMMON THEMES AMONG PARENTS

During the interviews, students gained an understanding of the child's past medical history. Several mothers described having had complications of pregnancy, labor, and delivery. Some of these complications had directly affected the infant; in other cases, it was unclear if perinatal events precipitated the child's illness. A few of the mothers expressed guilt about their pregnancies, while some described the frustrations they experienced when their child was subjected to diagnostic procedures.

In addition, many of the chronically ill children had deviations in normal growth and development. In several cases, they failed to achieve normal developmental milestones, such as sitting up, walking, and speaking. Identifying this problem reinforced a concept studente previously had learned in the classroom- that children benefit from early intervention (Glascoe, Foster, & Wolraich, 1997). Students had read about the importance of assessing and intervening before significant problems occur (Vessey & Swanson, 1996). Within the context of the parent interview, this concept was highlighted.

Students also were introduced to the day-to-day management needs of chronically ill children. One student observed a young child with cerebral palsy who is confined to bed and who listens to music continuously during the day. Another had an opportunity to interview a mother while her child participated in a twice weekly speech therapy session. A third mother described her autistic child's use of a day planner to anticipate and plan for daily activities. All students learned more about the medications used to treat these conditions. They learned about the ways in which behavioral therapy, nutritional therapy, auditory integration therapy, and physical and occupational therapy are used to improve health status.

Another common issue for parents and children was the child's educational process, which was discussed in all the interviews. This finding reinforced the students' previous learning about the role school plays in giving children the opportunity for social, emotional, and cognitive development. Family members stressed the importance of the educational setting as a place where children develop and learn to interact with peers (Vessey, Jackson, Rabin, & McFadden, 1996).

An additional recurring theme pertained to the need for anticipatory guidance, which is a cornerstone of pediatrie primary care and is necessary for achieving the goals of health promotion and disease prevention. Jenkins (1996) points out that anticipatory guidance provides support for parents of children with chronic conditions. Students learned that preparing families to manage the care of then* child is an important part of the role of the APN.

Students also gained insights into the financial considerations inherent in caring for these children. Parents described their problems with insurance companies, many of which were reluctant to cover the child's medical expenses. Students observed that families struggle with finances, sometimes necessitating addi· tional work to provide a second income. In many cases, families have little money for child care sitters or respite care.

Parents described how support groups comprised of parents with children with common conditions served as lifelines. Students noted that support groups provide practical information to parents, including information about how to access services, usual waiting times for specialty clinics, and typical results of therapy.

Students observed the effects of chronically ill children on friends and family members. Some noted that normal, healthy siblings competed for their parent's attention. Students also noted that some of the parents were divorced or separated. In addition, when friends of one family suggested the parents place thenautistic child in an institution, the emotional impact of the reactions of others was evident.

The most frequent suggestion made during the interviews was "listen to the mother." All parents had experienced frustration when care providers did not take time to listen to important details of the child's history. Parents offered practical suggestions for how to improve communication with health care providers. The importance of listening was evident to students who commented that parents are able to notice subtle changes in their children and can detect illnesses before any tangible symptoms appear.

STUDENTS' EVALUATIONS OF THE EXPERIENCE

Students were positive about the learning experience and reported enjoying conducting the interviews. When asked to give feedback about the experience, they responded that the interviews were successful and informative and that they would choose a similar option in the future. Comments included:

This experience provided a great deal of freedom. . .We met and interviewed interesting families. . .This has been a wonderful experience. . .This was one of my favorite assignments. . .1 gained so much insight. . .We should do this kind of thing more often.

The papers submitted by students were excellent, rich in detail, and vivid in description. Often the reader could visualize the parents as they were caring for their children.

The review of literature took on new meanings as the students incorporated the information into a new perspective following the interviews. Faculty hope that in the future the 8 students who participated in this project will have a deeper understanding of patients with chronic conditions and will more effectively develop a plan of care during brief clinical encounters.

CONCLUSION

Parent interviews away from the formal health care setting can be an effective way for nursing students to learn. A comfortable environment can enhance communication where parents are more relaxed and are willing to share their concerns. In addition, students have more time to explore pertinent issues about the care of the child.

Students learned how the APN can serve as an advocate for the patient and family and as a liaison with other health care professionals. They observed that APNs can serve in the role of case manager and create supportive links between parents and the health care system. The importance of being a good listener was underscored. The students also learned that it is also acceptable to say, "I don't know, but ITl find out!"

During the process of interviewing parents of chronically ill children, students gained several insights. The importance of family-centered care was evident and students recognized the complexity of caring for children with special needs. After processing their interviews and reviewing the literature, students could appreciate the value of a home visit as part of an assessment strategy.

Although content for this course focuses on the primary care needs of the child, we found the themes that emerged from the interviews went beyond the scope of primary care. It is important for APN students to realize the overall needs of the child and family to better address their primary care needs.

In a paper completed by one student participating in this project, the student reminded us that Virginia Henderson stated that the art of nursing includes "getting into the skin" of ch'ente to do for them what they would do for themselves if they had the necessary strength or skill (Henderson, 1964).

The parent interview is an excellent way to accomplish this. As another student noted, "A strong clinical knowledge base and understanding of available resources and creativity in thinking about care" are important for these families. This project successfully facilitated student synthesis of new knowledge, development of critical thinking skills, and communication of ideas. Students gained insight into assessments, diagnoses, and treatments that could not have been captured in textbooks or lectures.

The idea of client and family interviews in the home is one that has been used in nursing education in a variety of ways. Nursing faculty might consider other applications, such as having students interview families who have a member with Alzheimer's disease.

The project described in this paper can be replicated wherever there are families with children with chronic conditions. Such families can be identified within a primary care practice, a specialty practice, or through existing parent support groups. Nursing faculty can make contact with their colleagues in practice who can get in touch with parents. Based on our experience, we have found that parents of children with chronic illness are very receptive to opportunities to share their experiences with APN students.

REFERENCES

  • Glascoe, F.P., Foster, E.M., & Wolraich, MX. (1997). An economic analysis of developmental detection methods. Pediatrics, 99(6), 830837.
  • Henderson, V. (1964). The nature of nursing. American Journal of Nursing, 64, 62-68.
  • Jenkins, R.J. (1996). Grieving the loss of the fantasy child. Home Healthcare Nurse, 14(9), 690-695.
  • Lyon, J.C., BoUa, C.D., & Nies, M.A. (1997). The home visit and home health care. In J. M. Swanson, & M.A. Nies (Eds.), Community health nursing. (2nd éd., pp. 797-821). Philadelphia, PA: W.B. Saunders Co.
  • Vessey, J.A., Jackson, P.L., Rabin, N., & McFadden, E. (1996). School and the child with a chronic condition. In P.L. Jackson, & J-A. Vessey (Eds.), Primary care of the child with a chronic condition (2nd éd., pp. 72-85). St. Louis, MO: Mosby-Year Book, Inc.
  • Vessey, J.A., & Swanson, M.N. (1996). Chronic conditions and child development. In P.L. Jackson, & JJi. Vessey (Eds.), Primary care of the child with a chronic condition. (2nd éd., pp. 16-40). St. Louis, MO: Mosby-Year Book, Inc.

10.3928/0148-4834-20010401-09

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