- Email: [email protected]
Adolescent oncology unit: An attempt at normalcy
Adolescent Oncology Unit: An Attempt at Normalcy Sue Potter
OST authorities believe that hospitalized children receive better care when they are grouped according to their developmental levels rather than diagnoses. Prior to the 196Os, state and national regulating agencies and the Joint Commission on Accreditation of Hospitals reviewed requirements and standards of pediatric hospitals and units. The upper age designation for these areas varied from 11 years to 16 years, with little consistency or rationale. The developmental grey area for most health care institutions depended upon the disease, the physician’s specialty, and space availability and/or physical size. Even as late as 1978, the American Academy of Pediatrics did not strongly endorse the need for a separate adolescent unit. In more recent years, however, health care professionals have become aware of the degree to which the patient’s reaction to the disease dominates the ultimate outcome.’ As a result, the care of the adolescent has evolved into a recognized subspeciality. At the University of Texas M.D. Anderson Hospital and Tumor Institute, Houston, the adolescent unit has been in operation for over 4 years. In a Comprehensive Cancer Center, where units are designated by disease and/or therapy, the opportunity to open an adolescent unit with significant administrative and medical endorsement has been a unique and rewarding experience. Under the philosophical leadership of Dr Jan Van Eys, our goal was to create as normal an environment as possible for the hospitalized adolescent with cancer. This goal has contributed to the overall approach, structure, and design of the unit. Presently we are continuing to refine, enhance, and improve upon this concept. In fact, this year a “Kick-Off Party” will mark our continued efforts toward creating such a setting. Equal to the goal of effectively treating the ado-
M
lescent’s malignancy is that of promoting normal growth and development. This approach to the care of chronically ill adolescents has been addressed frequently over the past decade by several authorities, but its achievement has yet to be fully realized. Normalization may be described as “making available . . patterns and conditions of everyday life which are as close as possible to the norms and patterns of mainstream society. “2 The purpose of this article is to describe how an attempt at normalization is being implemented at the University of Texas M.D. Anderson Hospital. In spite of the fact that cancer is life threatening, many of the common cancers of adolescence are considered curable. Even patients with less curable malignancies will live a median of greater than 3 years.” If the health profession focuses on the disease and therapy as a sustained life-threatening crisis, the goal of cure is one of survival rather than fully adapted adult. To avoid this, health care professionals must work toward the outcome of “the truly cured child” who is not only “cured biologically but incorporated the experience of having had cancer into his or her being so that functioning on a par with peers is possible.“3 MODE OF CARE
From the PediatriclAdolescent Section, University of Texas. System Cancer Center, M.D. Anderson Hospital and Tumor Institute. Houston. Address reprint requests to Sue Potter, RN. MS, Pedititrici Adolescent Section, University of Texus, M.D. Anderson Hospital and Tumor Institute, 6723 Bertner Ave, Houston. TX 77030. Q 1986 by Grune & Stratton. Inc. 0749-2081186i0202~003$05.00/0
The adolescent unit attempts to maintain continuity between hospital and home. On the adolescent unit, school attendance, free time, therapy requirements, social outings, meal time, and teen group come together in a milieu that is both structured and flexible. Unlike the typical system for patient care in many comprehensive cancer centers, the psychiatric rather than the medical model serves as the basis for adolescent care at M.D. Anderson Hospital. The psychiatric model assumes a normalization of life within the reality of the disease and its therapy. This approach is not defined by the illness and treatment, but instead by the unique physical and developmental needs of the patient. The autonomy of the adolescent in this model is paramount. The patient is not only respected as an individual but fully participates in decision-making regarding treatment and ward management. It is the philosophy of this adolescent unit that
90
Seminars in Oncology Nursing, Vol 2, No 2 (May),
1986:
pp SO-94
ADOLESCENT
ONCOLOGY
91
UNIT
treatment should be administered within a therapeutic community where quality of life is addressed. An environment must be created where the disease and its treatment are part of normal life.4 On the adolescent unit, patients are cared for by three disciplines: medicine, nursing, and mental health. This tripartite approach functions with coequal cooperation to collectively address the adolescent and family needs, while each discipline offers a unique area of expertise as outlined in Table I. Each professional may view the adolescent differently. yet each shares responsibility for how well the patient fares with his disease and treatment. Physicians continued to be concerned with achieving physical cure in spite of the threat of failure and late consequences of therapy. Nurses must perform a variety of procedures with ongoing reevaluation. They generally have the most frequent and sustained contact with the hospitalized adolescent. The responsible mental health professional facilitates the adolescent’s adjustment to a world that is clearly not what was wished for him.5 Collectively. these professionals must come together as a unified team to develop a therapeutic community that is responsive to the needs of these adolescents and their families. ENVIRONMENTAL
school. and other societal institutions (church. scouts, etc). The norms of each of these vary from early to late adolescence. Professionals who care for these adolescents must have skill in recognizing and adjusting approaches and expectations to each developmental phase. For example, most teen units discourage parents from staying overnight. Due to space limitations. this rule was considered and then abandoned during the estahlishment of our adolescent unit. To implement this is to ignore the insecurity o! early adolescents and the not infrequent rcgressions of middle and late adolescents during stress. This dependency on the parent figure may be a very effective short-term coping mechanism for both the patient and parents. Unit activitie\ and the active schedule support the goal of independence in a more positive manner than a “no parent overnight” policy. Efforts toward educational and diversional activities for parents also aid in directing their energies toward coping with their adolescent’s budding independence. Nursing and mental health professionals collectively plan these parent activities to include local “Candelighter” meetings and “Parents Night Out” activities. Institutional buses are made available for these excursions. A favorite diversion has been shopping at a local shopping center.
CONCERNS
In order to achieve this goal of normalcy, the focus and structure of the unit must reflect priorities of normal adolescence. Image-shaping aspects of normal adolescence include family. peers,
Table 1. Therapy
Attending PhysIcian
PHYSICAL SETTING
Structurally, the inpatient pediatric unit. the inpatient adolescent unit. and the pediatriciadolescent outpatient clinic are contiguous. The kitchen
Sets in Adolescent
Oncology
Designated Primary Nurse
Individual members
fellows residents interns
nurses clerical staff pharmacy
Resources available
consultant services
support
diagnostic services therapeutic services
administration patient education housekeeping central supply specialty nursing teams IV therapy hyperalimentation discharge planning
psychologl!;t soctal workers child-l!fe workers chaplains volunteers schoolteachers volunteer servlces
psychiatry
92
and dining areas are shared between the two inpatient units with staggered hours of meal service to facilitate age clustering, particularly during school hours. The 26-bed adolescent unit is made up of four three-bed wards, two private rooms, and six semiprivate rooms. An existing tub room was converted to a multipurpose conference room frequently used for private interviews between staff and teenagers. A memorable challenge to our normalizing approach centered around meal service. The dining area had been poorly utilized since the opening of the unit. Until recently, altering meal service for the pediatric/adolescent area was logistically difficult. The dietary department served meals on trays at the bedside in the same manner as the rest of the hospital. Since eating in bed enhanced the sick role we were trying to avoid, Dietary, Hospital Administration, and Nursing collaborated to adjust the meal service. The change resulted in all meals for ambulatory patients being served in the dining room. After accomplishing this goal, our plan was met with great resistance from the parents and the teens themselves. The significance of this change was clearly underestimated. Meal service became a focus of control possibly because parents felt their role of provider was threatened. This experience served as an education for all involved. It became obvious that comfortable routines are better modified slowly through established unit government channels. Following some structural changes and a more relaxed atmosphere, use of the dining area has improved. Teen kitchen, pizza parties, and family night suppers have helped eliminate past problems. The adolescents modify the unit environment with the able assistance of child life professionals and volunteers. Patients are encouraged to decorate with commercial and handmade posters, which results in a clearly teen atmosphere. The staff is oriented toward allowing flexibility, privacy, independence, autonomy, and mobility, all of which positively contribute to normal adolescent growth and development. The adolescent classroom is separate from the pediatric classroom and is equipped with a computer, word processor, television, and video. A secondary education teacher meets the academic needs of the adolescent population, and a bilingual teacher is shared by both the pediatric and adolescent units. For the adolescents, school plays a
SUE POTTER
major role in not only preparing them for an economically independent future but also the most important area of socialization. The school room doubles as a teen room after school hours and is designed so that educational materials can be secured while leaving the room accessible. UNIT PROGRAMMING AND PATIENT CLASSIFICATION
Although many of the adolescents are ambulatory with minimal physical limitation, there is a wide variability in the patient’s ability to participate in the full range of unit activities. For this reason, a classification system has been devised. This system classifies the patient on a scale of 1 through III for the level of participation expected. Each discipline of the tripartite team assessesthe individual adolescent and documents the classification on the medical record. Level I indicates full program participation with no modifications required. Level I1 is a modified program with changes defined on the medical record. Level III is equivalent to no program with few exceptions. For example, the adolescent who is NPO with no other restrictions would be classified as Level II (ie, full program with the exception of the dining room). A reward system was developed to encourage program participation. Patients may earn points for being on time to school, eating in the dining area, and participating in unit chores. When enough points are earned they may be cashed in for movie passes, fast food coupons, etc. A typical day for a teen patient on the adolescent unit begins with wake up call at 7:30 AM. Breakfast is served in the dining area at 8:15 AM and school begins at 9:00 AM. The unit activity schedule is posted at each bedside and reflects the standard schedule and any daily alterations such as a scheduled procedure or x-ray. Lunch in the dining room is from 12 noon to I PM, and full program patients return to the school room from 1 PM to
3
PM.
Teen group, arts and crafts, free time, and so forth fill the hours until dinner in the dining room at 6 PM. Between 7 PM and 9 PM, a variety of activities are scheduled including outings. Physician rounds are planned around the unit activity schedule as much as possible. Diagnostic studies and therapy are scheduled to minimize interference with school since school attendance is a major thrust of the program. There is a structured
ADOLESCENT
ONCOLOGY
UNIT
time for getting up, eating. recreation. and especially school. The unit schedule and expected participation demands a variety of modifications. To accomplish this, a floor government system and supervisory board has been instituted. Reflecting the psychiatric model of care, this “Floor Board” is chaired by the head nurse with members who include a pediatric nurse practitioner, social worker. child life professional, teacher, unit manager, physician, two teenagers, and a parent. This body is charged with guiding and regulating the adolescent program at the unit level. Problems are discussed and adjustments in floor policy may be made. The activity schedule is also reevaluated periodically with major changes and recommendations being directed to the Supervisory Board. Unit activities are monitored through minutes and reports from the Floor Board to the “Super Board.” Membership on the supervisory board includes representation from Houston Independent School District. nursing. hospital administration, and medicine. The chairperson is a child psychiatrist independent from the immediate administration. Although school participation is a main focus, informal gathering during free time positively contributes to social rehabilitation. The Wednesday party is also directed toward this effort. Enhancing normal socialization is a major goal of our summer camp for children and teens with cancer and their healthy siblings. Camp Star Trails is in its third year and is funded through the annual sale of Christmas cards. The annual ski trip for amputees is yet another activity with the goal of optimizing normalcy for the teenager with a diagnosis of cancer. Adolescent unit staff serve as counselors for each of these special programs. Administrative support in the form of leave time for selected staff members encourages voluntary participation. MENTAL HEALTH SUPPORT
The Mental Health Division is responsible for managing “Kids Group” (for pediatric patients), “Parents Group.” and “Teen Group.” Participation at Teen Group is desired but neither required nor rewarded within the point system. This group is guided by a child-life specialist and psychology intern. The adolescents are encouraged to make it
93
their own group. The leaders recruit participants. set limits when necessary, provide factual information if requested, and encourage expression of feelings, mutual support. and problem-solving, The constant change in census influences attendance from week to week. but this is unavoidable. Depending on the age structure. occasionally two teen groups are required (one for young teenagers and one for middle and older adolescents). Rclationships with friends and families are a frequent topic of discussion. Other topics include the death of other patients. fears about their own death. and hospital experiences. OUTINGS
Outings are not only diversional, but since they involve leaving the hospital without parents, they are frequently quite therapeutic. Funding for the outings is supported by the annual Christmas card sale and coordinated by the child-life proi’cssionals. Volunteers also play a very important role in organizing and assisting with these activities. Going to an oriental restaurant or a rock concert is a challenge for the nursing staff. Medication schedules may need to be modified and treatments administered in unusual locations. Child-life professionals function as the social facilitator with peer support from ambulatory teens in mnnipulating IV poles and pumps. wheelchairs. etc. Unit staffing is frequentI), modified to adequately deal with the extra nursing activity required. NURSING STAFF
There are a number of special qualities required of the nursing staff working in this environment. Although age is not a factor, maturity is. A desire to work on the adolescent unit is not enough. Because of our philosophy. experience with primary nursing, or at least a philosophic orientation toward professional primary practice is desired. An appreciation for the unique differences between adolescence and childhood is also important. Understanding how adolescents think and an awareness of the differences between young, middle, and late adolescence is necessary. Strength of conviction, flexibility, consistency, and an open communication style are valued. Critical factors are the ability to be caring, direct. honest. and to have a good sense of humor. A highly structured efficiency expert would be
94
SUE POTTER
easily frustrated by the required adaptation of providing care at a rock concert. The nurse must be comfortable with chronic illness and the statistical realities of cancer survival. The nurse provides a support system for the adolescent that augments rather than replaces family and peers. The ability to honestly and sensitively answer direct questions regarding the patients is also important. The nurse is generally the most consistently available care provider and therefore has the opportunity to assure the achievement of the goal of normalcy within the adolescent oncology unit. Staffing for the unit is based on 80% occupancy with 21 full-time nursing positions allotted for 24hour coverage. Over 90% of the staff are professional nurses with a fluctuating nurse/patient ratio of four to six patients per nurse on the day and evening shifts and six to eight patients per nurse on the night shift. Low turnover and the associated reduction in orientation and replacement costs validates the cost effectiveness of a near total professional staff. Implementing the nursing process becomes the focus of each nurse for her primary patient(s). Integrating the philosophy of normalization is most achievable in a primary care delivery setting. The primary nurse is accountable for designing a plan of care that is goal-oriented toward normal adolescent adaptation. Responsibility for implementing the plan may be delegated to other members of the nursing team and/or other health professionals. For example, school reintegration measures may be divided between the teacher, nurse practitioner, and social worker as
determined during primary team conference with the nurse initiating contact with the school. SUMMARY
AND RECOMMENDATIONS
Although an adolescent oncology unit is an ideal setting for a wellness-centered therapeutic milieu, in some institutions low census and space limitations may make this goal logistically difficult to achieve. If this is the case, a feasible alternative is one that recognizes the unique needs of this age group. Sharing facilities with pediatric rather than adult patients is most desirable. Development of adolescent-focused school activities as well as unit programming to incorporate patients’ suggestions contribute to the therapeutic environment. A Teen Group led by qualified professionals to deal with sensitive issues is also recommended. This group should not take the place of teen input into the unit government system, however, since Teen Group is more concerned with individual feelings rather than ward rules and regulations. Of primary importance is the focus on continuing the adolescent’s journey toward independent adulthood by insisting on appropriate school attendance and achievement. Optimally, the staff should be interested in, sensitive to, and desirous of working with the adolescent. These qualities should be coupled with maturity, flexibility, and professionalism. The development of such an adolescent program can be essential to promoting normal growth and development, in spite of the stress associated with a potentially fatal illness.
REFERENCES I, Hofman A, Becker RD, Gabriel H: The Hospitalized Adolescent. New York, Free, 1980
2. Wolfenskerger W: The Principle of Normalization in Human Services. Toronto, National Institute of Mental Retardation , I972
3. Van Eys J: The Truly Cured Child. Baltimore, University Park, 1977 4. Van Eys J: Caring toward cure. Child Health Care 13:160-166, 1985 5. Van Eys J: The concept of rehabilitation in pediatric oncology, in Gunn AE (ed): Cancer Rehabilitation. New York, Raven, 1984, pp 195-218
OST authorities believe that hospitalized children receive better care when they are grouped according to their developmental levels rather than diagnoses. Prior to the 196Os, state and national regulating agencies and the Joint Commission on Accreditation of Hospitals reviewed requirements and standards of pediatric hospitals and units. The upper age designation for these areas varied from 11 years to 16 years, with little consistency or rationale. The developmental grey area for most health care institutions depended upon the disease, the physician’s specialty, and space availability and/or physical size. Even as late as 1978, the American Academy of Pediatrics did not strongly endorse the need for a separate adolescent unit. In more recent years, however, health care professionals have become aware of the degree to which the patient’s reaction to the disease dominates the ultimate outcome.’ As a result, the care of the adolescent has evolved into a recognized subspeciality. At the University of Texas M.D. Anderson Hospital and Tumor Institute, Houston, the adolescent unit has been in operation for over 4 years. In a Comprehensive Cancer Center, where units are designated by disease and/or therapy, the opportunity to open an adolescent unit with significant administrative and medical endorsement has been a unique and rewarding experience. Under the philosophical leadership of Dr Jan Van Eys, our goal was to create as normal an environment as possible for the hospitalized adolescent with cancer. This goal has contributed to the overall approach, structure, and design of the unit. Presently we are continuing to refine, enhance, and improve upon this concept. In fact, this year a “Kick-Off Party” will mark our continued efforts toward creating such a setting. Equal to the goal of effectively treating the ado-
M
lescent’s malignancy is that of promoting normal growth and development. This approach to the care of chronically ill adolescents has been addressed frequently over the past decade by several authorities, but its achievement has yet to be fully realized. Normalization may be described as “making available . . patterns and conditions of everyday life which are as close as possible to the norms and patterns of mainstream society. “2 The purpose of this article is to describe how an attempt at normalization is being implemented at the University of Texas M.D. Anderson Hospital. In spite of the fact that cancer is life threatening, many of the common cancers of adolescence are considered curable. Even patients with less curable malignancies will live a median of greater than 3 years.” If the health profession focuses on the disease and therapy as a sustained life-threatening crisis, the goal of cure is one of survival rather than fully adapted adult. To avoid this, health care professionals must work toward the outcome of “the truly cured child” who is not only “cured biologically but incorporated the experience of having had cancer into his or her being so that functioning on a par with peers is possible.“3 MODE OF CARE
From the PediatriclAdolescent Section, University of Texas. System Cancer Center, M.D. Anderson Hospital and Tumor Institute. Houston. Address reprint requests to Sue Potter, RN. MS, Pedititrici Adolescent Section, University of Texus, M.D. Anderson Hospital and Tumor Institute, 6723 Bertner Ave, Houston. TX 77030. Q 1986 by Grune & Stratton. Inc. 0749-2081186i0202~003$05.00/0
The adolescent unit attempts to maintain continuity between hospital and home. On the adolescent unit, school attendance, free time, therapy requirements, social outings, meal time, and teen group come together in a milieu that is both structured and flexible. Unlike the typical system for patient care in many comprehensive cancer centers, the psychiatric rather than the medical model serves as the basis for adolescent care at M.D. Anderson Hospital. The psychiatric model assumes a normalization of life within the reality of the disease and its therapy. This approach is not defined by the illness and treatment, but instead by the unique physical and developmental needs of the patient. The autonomy of the adolescent in this model is paramount. The patient is not only respected as an individual but fully participates in decision-making regarding treatment and ward management. It is the philosophy of this adolescent unit that
90
Seminars in Oncology Nursing, Vol 2, No 2 (May),
1986:
pp SO-94
ADOLESCENT
ONCOLOGY
91
UNIT
treatment should be administered within a therapeutic community where quality of life is addressed. An environment must be created where the disease and its treatment are part of normal life.4 On the adolescent unit, patients are cared for by three disciplines: medicine, nursing, and mental health. This tripartite approach functions with coequal cooperation to collectively address the adolescent and family needs, while each discipline offers a unique area of expertise as outlined in Table I. Each professional may view the adolescent differently. yet each shares responsibility for how well the patient fares with his disease and treatment. Physicians continued to be concerned with achieving physical cure in spite of the threat of failure and late consequences of therapy. Nurses must perform a variety of procedures with ongoing reevaluation. They generally have the most frequent and sustained contact with the hospitalized adolescent. The responsible mental health professional facilitates the adolescent’s adjustment to a world that is clearly not what was wished for him.5 Collectively. these professionals must come together as a unified team to develop a therapeutic community that is responsive to the needs of these adolescents and their families. ENVIRONMENTAL
school. and other societal institutions (church. scouts, etc). The norms of each of these vary from early to late adolescence. Professionals who care for these adolescents must have skill in recognizing and adjusting approaches and expectations to each developmental phase. For example, most teen units discourage parents from staying overnight. Due to space limitations. this rule was considered and then abandoned during the estahlishment of our adolescent unit. To implement this is to ignore the insecurity o! early adolescents and the not infrequent rcgressions of middle and late adolescents during stress. This dependency on the parent figure may be a very effective short-term coping mechanism for both the patient and parents. Unit activitie\ and the active schedule support the goal of independence in a more positive manner than a “no parent overnight” policy. Efforts toward educational and diversional activities for parents also aid in directing their energies toward coping with their adolescent’s budding independence. Nursing and mental health professionals collectively plan these parent activities to include local “Candelighter” meetings and “Parents Night Out” activities. Institutional buses are made available for these excursions. A favorite diversion has been shopping at a local shopping center.
CONCERNS
In order to achieve this goal of normalcy, the focus and structure of the unit must reflect priorities of normal adolescence. Image-shaping aspects of normal adolescence include family. peers,
Table 1. Therapy
Attending PhysIcian
PHYSICAL SETTING
Structurally, the inpatient pediatric unit. the inpatient adolescent unit. and the pediatriciadolescent outpatient clinic are contiguous. The kitchen
Sets in Adolescent
Oncology
Designated Primary Nurse
Individual members
fellows residents interns
nurses clerical staff pharmacy
Resources available
consultant services
support
diagnostic services therapeutic services
administration patient education housekeeping central supply specialty nursing teams IV therapy hyperalimentation discharge planning
psychologl!;t soctal workers child-l!fe workers chaplains volunteers schoolteachers volunteer servlces
psychiatry
92
and dining areas are shared between the two inpatient units with staggered hours of meal service to facilitate age clustering, particularly during school hours. The 26-bed adolescent unit is made up of four three-bed wards, two private rooms, and six semiprivate rooms. An existing tub room was converted to a multipurpose conference room frequently used for private interviews between staff and teenagers. A memorable challenge to our normalizing approach centered around meal service. The dining area had been poorly utilized since the opening of the unit. Until recently, altering meal service for the pediatric/adolescent area was logistically difficult. The dietary department served meals on trays at the bedside in the same manner as the rest of the hospital. Since eating in bed enhanced the sick role we were trying to avoid, Dietary, Hospital Administration, and Nursing collaborated to adjust the meal service. The change resulted in all meals for ambulatory patients being served in the dining room. After accomplishing this goal, our plan was met with great resistance from the parents and the teens themselves. The significance of this change was clearly underestimated. Meal service became a focus of control possibly because parents felt their role of provider was threatened. This experience served as an education for all involved. It became obvious that comfortable routines are better modified slowly through established unit government channels. Following some structural changes and a more relaxed atmosphere, use of the dining area has improved. Teen kitchen, pizza parties, and family night suppers have helped eliminate past problems. The adolescents modify the unit environment with the able assistance of child life professionals and volunteers. Patients are encouraged to decorate with commercial and handmade posters, which results in a clearly teen atmosphere. The staff is oriented toward allowing flexibility, privacy, independence, autonomy, and mobility, all of which positively contribute to normal adolescent growth and development. The adolescent classroom is separate from the pediatric classroom and is equipped with a computer, word processor, television, and video. A secondary education teacher meets the academic needs of the adolescent population, and a bilingual teacher is shared by both the pediatric and adolescent units. For the adolescents, school plays a
SUE POTTER
major role in not only preparing them for an economically independent future but also the most important area of socialization. The school room doubles as a teen room after school hours and is designed so that educational materials can be secured while leaving the room accessible. UNIT PROGRAMMING AND PATIENT CLASSIFICATION
Although many of the adolescents are ambulatory with minimal physical limitation, there is a wide variability in the patient’s ability to participate in the full range of unit activities. For this reason, a classification system has been devised. This system classifies the patient on a scale of 1 through III for the level of participation expected. Each discipline of the tripartite team assessesthe individual adolescent and documents the classification on the medical record. Level I indicates full program participation with no modifications required. Level I1 is a modified program with changes defined on the medical record. Level III is equivalent to no program with few exceptions. For example, the adolescent who is NPO with no other restrictions would be classified as Level II (ie, full program with the exception of the dining room). A reward system was developed to encourage program participation. Patients may earn points for being on time to school, eating in the dining area, and participating in unit chores. When enough points are earned they may be cashed in for movie passes, fast food coupons, etc. A typical day for a teen patient on the adolescent unit begins with wake up call at 7:30 AM. Breakfast is served in the dining area at 8:15 AM and school begins at 9:00 AM. The unit activity schedule is posted at each bedside and reflects the standard schedule and any daily alterations such as a scheduled procedure or x-ray. Lunch in the dining room is from 12 noon to I PM, and full program patients return to the school room from 1 PM to
3
PM.
Teen group, arts and crafts, free time, and so forth fill the hours until dinner in the dining room at 6 PM. Between 7 PM and 9 PM, a variety of activities are scheduled including outings. Physician rounds are planned around the unit activity schedule as much as possible. Diagnostic studies and therapy are scheduled to minimize interference with school since school attendance is a major thrust of the program. There is a structured
ADOLESCENT
ONCOLOGY
UNIT
time for getting up, eating. recreation. and especially school. The unit schedule and expected participation demands a variety of modifications. To accomplish this, a floor government system and supervisory board has been instituted. Reflecting the psychiatric model of care, this “Floor Board” is chaired by the head nurse with members who include a pediatric nurse practitioner, social worker. child life professional, teacher, unit manager, physician, two teenagers, and a parent. This body is charged with guiding and regulating the adolescent program at the unit level. Problems are discussed and adjustments in floor policy may be made. The activity schedule is also reevaluated periodically with major changes and recommendations being directed to the Supervisory Board. Unit activities are monitored through minutes and reports from the Floor Board to the “Super Board.” Membership on the supervisory board includes representation from Houston Independent School District. nursing. hospital administration, and medicine. The chairperson is a child psychiatrist independent from the immediate administration. Although school participation is a main focus, informal gathering during free time positively contributes to social rehabilitation. The Wednesday party is also directed toward this effort. Enhancing normal socialization is a major goal of our summer camp for children and teens with cancer and their healthy siblings. Camp Star Trails is in its third year and is funded through the annual sale of Christmas cards. The annual ski trip for amputees is yet another activity with the goal of optimizing normalcy for the teenager with a diagnosis of cancer. Adolescent unit staff serve as counselors for each of these special programs. Administrative support in the form of leave time for selected staff members encourages voluntary participation. MENTAL HEALTH SUPPORT
The Mental Health Division is responsible for managing “Kids Group” (for pediatric patients), “Parents Group.” and “Teen Group.” Participation at Teen Group is desired but neither required nor rewarded within the point system. This group is guided by a child-life specialist and psychology intern. The adolescents are encouraged to make it
93
their own group. The leaders recruit participants. set limits when necessary, provide factual information if requested, and encourage expression of feelings, mutual support. and problem-solving, The constant change in census influences attendance from week to week. but this is unavoidable. Depending on the age structure. occasionally two teen groups are required (one for young teenagers and one for middle and older adolescents). Rclationships with friends and families are a frequent topic of discussion. Other topics include the death of other patients. fears about their own death. and hospital experiences. OUTINGS
Outings are not only diversional, but since they involve leaving the hospital without parents, they are frequently quite therapeutic. Funding for the outings is supported by the annual Christmas card sale and coordinated by the child-life proi’cssionals. Volunteers also play a very important role in organizing and assisting with these activities. Going to an oriental restaurant or a rock concert is a challenge for the nursing staff. Medication schedules may need to be modified and treatments administered in unusual locations. Child-life professionals function as the social facilitator with peer support from ambulatory teens in mnnipulating IV poles and pumps. wheelchairs. etc. Unit staffing is frequentI), modified to adequately deal with the extra nursing activity required. NURSING STAFF
There are a number of special qualities required of the nursing staff working in this environment. Although age is not a factor, maturity is. A desire to work on the adolescent unit is not enough. Because of our philosophy. experience with primary nursing, or at least a philosophic orientation toward professional primary practice is desired. An appreciation for the unique differences between adolescence and childhood is also important. Understanding how adolescents think and an awareness of the differences between young, middle, and late adolescence is necessary. Strength of conviction, flexibility, consistency, and an open communication style are valued. Critical factors are the ability to be caring, direct. honest. and to have a good sense of humor. A highly structured efficiency expert would be
94
SUE POTTER
easily frustrated by the required adaptation of providing care at a rock concert. The nurse must be comfortable with chronic illness and the statistical realities of cancer survival. The nurse provides a support system for the adolescent that augments rather than replaces family and peers. The ability to honestly and sensitively answer direct questions regarding the patients is also important. The nurse is generally the most consistently available care provider and therefore has the opportunity to assure the achievement of the goal of normalcy within the adolescent oncology unit. Staffing for the unit is based on 80% occupancy with 21 full-time nursing positions allotted for 24hour coverage. Over 90% of the staff are professional nurses with a fluctuating nurse/patient ratio of four to six patients per nurse on the day and evening shifts and six to eight patients per nurse on the night shift. Low turnover and the associated reduction in orientation and replacement costs validates the cost effectiveness of a near total professional staff. Implementing the nursing process becomes the focus of each nurse for her primary patient(s). Integrating the philosophy of normalization is most achievable in a primary care delivery setting. The primary nurse is accountable for designing a plan of care that is goal-oriented toward normal adolescent adaptation. Responsibility for implementing the plan may be delegated to other members of the nursing team and/or other health professionals. For example, school reintegration measures may be divided between the teacher, nurse practitioner, and social worker as
determined during primary team conference with the nurse initiating contact with the school. SUMMARY
AND RECOMMENDATIONS
Although an adolescent oncology unit is an ideal setting for a wellness-centered therapeutic milieu, in some institutions low census and space limitations may make this goal logistically difficult to achieve. If this is the case, a feasible alternative is one that recognizes the unique needs of this age group. Sharing facilities with pediatric rather than adult patients is most desirable. Development of adolescent-focused school activities as well as unit programming to incorporate patients’ suggestions contribute to the therapeutic environment. A Teen Group led by qualified professionals to deal with sensitive issues is also recommended. This group should not take the place of teen input into the unit government system, however, since Teen Group is more concerned with individual feelings rather than ward rules and regulations. Of primary importance is the focus on continuing the adolescent’s journey toward independent adulthood by insisting on appropriate school attendance and achievement. Optimally, the staff should be interested in, sensitive to, and desirous of working with the adolescent. These qualities should be coupled with maturity, flexibility, and professionalism. The development of such an adolescent program can be essential to promoting normal growth and development, in spite of the stress associated with a potentially fatal illness.
REFERENCES I, Hofman A, Becker RD, Gabriel H: The Hospitalized Adolescent. New York, Free, 1980
2. Wolfenskerger W: The Principle of Normalization in Human Services. Toronto, National Institute of Mental Retardation , I972
3. Van Eys J: The Truly Cured Child. Baltimore, University Park, 1977 4. Van Eys J: Caring toward cure. Child Health Care 13:160-166, 1985 5. Van Eys J: The concept of rehabilitation in pediatric oncology, in Gunn AE (ed): Cancer Rehabilitation. New York, Raven, 1984, pp 195-218