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Health Support Program for Family Members With Hospitalized Child

Posted on: Thursday, 1 September 2005, 03:01 CDT

In 2001, we began conducting Health Support Programs on the pediatric ward of Miyazaki Medical College Hospital. The program is designed to help family members who accompany and care for their children who are ill and hospitalized to practice some physical movements for their own benefit. An interview survey was undertaken to clarify the effects and the purpose of the program by evaluating subjective data from program participants, as well as by evaluating changes in participants' blood pressure rates. Findings indicate that the program's effects include "reduction of stress and/or lack of exercise,""refreshing effect,""comfort and/or exhilaration,""relaxation," and "alleviation of physical symptoms." We also have noted that mothers become more aware of their own health issues and that the program offers an opportunity to reexamine their health conditions. Furthermore, we have learned that for parents and children who participate together, the program offers a fun environment, and that, on occasion, mothers are the ones who are cared for in the program.

In Japan it is a common practice for family members to be with patients who are infants with separation anxiety, patients with breast feeding needs, when preparation periods are needed during hospitalization for home care provisions after surgery, or in cases of terminal illness. Family members opt to attend to the patient upon consulting with the patient, other family members, and the doctor. This is especially true when the patient is a child because of the greater need for children to be with their families. However, because many hospitals are not equipped to meet such family needs, there have been numerous reports of family members developing physical ailments, such as stiff necks, backaches, constipation, and insomnia (Imai, 1997). Despite this trend, concrete plans to tackle this issue have yet to be resolved. Most research has focused on the family member's quality of life (Endo et al., 1999) or on influences upon other family members (Bonnie, 1994; Komamatsu, Inoue, Odawara, Takeshita, & Yamaguchi, 1991; Ohta, Ono, Ohta, & Matsui. 1996).

Good health of family members is essential in maintaining the patient's physical and mental stability and is also the basis for family resilience. At Miyazaki Medical College Hospital, to minimize the ministering family members' physical symptoms, we encourage them to become aware of their own health conditions and to learn how to manage and control these conditions. We also offer a Health Support Program to ease physical tension, release stress, and provide a diversion. The purpose of this research was to clarify the effectiveness and significance of the Health Support Program for the benefit of family members ministering to child inpatients.

Literature Review

In the provision of home care for an ill family member, the patient's main support system is the family. In a study that compared differences between families providing home care with families who did not, results showed that home care families tend to worry over their ill family member and thus are not able to relax Sato, Kanda, & Anan, 2000. They also tend to have difficulties falling asleep due to worrying, and their exhaustion level is high. Another study reports that the longer families had provided home care for their ill family member, the higher the risk that the family members would suffer from health problems, chronic fatigue, and depression (Yamada, Suzuki, Sato & MIyasaki, 1997). With regard to such fatigue or lack of sleep, the same risk factors apply to family members who care for an ill child (Watabe, Iwanaga, & Washida, 2002) (Yokoyama, Shimizu, & Nishimoto, 1998) (Yokoyama, Kumoda, Kiuti, Ohya & Shimizu, 1999) (Hirose & Fukuya, 1998).

Research indicates that health problems of family members who provide home care for their ill member can be eased through relaxation techniques and problem solving skills (Hosaka & Sugiyama, 1999). Such educational intervention has resulted in a decrease in depression, anger, and fatigue. However, there is little research to date on the effectiveness of programs that focus on the well being of accompanying family members of ill children within a hospital setting in Japan.

Creation of Health Support Program

The "Health Support Program" was developed jointly by the nursing department and the nursing science department with the goal that the family members' mental and physical fatigue would be alleviated as much as possible. In developing the program, the following issues were considered:

1. Characteristics of the family members for whom this program is intended (family members for infant inpatients or inpatients with private rooms; for inpatients requiring long term hospitalization)

2. Common symptoms that family members develop (e.g., stiff necks, backaches, constipation)

3. The need to include the program into nursing care

Although reasons for ministering to a child patient are numerous, our Health Support Program is based on the following principle: " The healthy condition of family members is a prerequisite in maintaining the patient's physical and mental stability, and is also the basis for family resilience." Therefore, we provide a framework for health support processes from the patient's admission to the hospital to release, and possibly followed by home care provision as well. The Health Support Program is included as a part of this process (see Table 1).

A major shift occurs in the life style of all family members when a child becomes a hospitalized patient and a family member decides to minister to the child's needs during the hospital stay. Although past reports indicate that many such family members have suffered from stiff necks, backaches, and stress, special nursing care has not been provided for these problems. In fact, many family members seemed to have accepted the fact that stiff necks and backaches are expected or that there is not much that can be done to alleviate such problems. Given this situation, we have encouraged family members to turn their attention to their own health to enable them to learn how to minimize their aggravating conditions and to feel some relief and comfort. Our intent for the program was not for family members to recuperate from accumulated fatigue by resting, but rather to engage in movement to reduce stress and to feel refreshed mentally and physically.

With the aim of achieving this objective, we focused on the implementation of aerobic exercise. The session starts with measuring the participants' vital signs. Then, we encourage them to become attuned to their health conditions by asking how they are feeling. Before beginning the aerobic exercise, family members are instructed to complete a thorough stretching exercise as a part of their warm up procedure. As it is important to stretch and loosen the muscles in every part of the body, we allow an ample 10 minutes for warm up. Participants proceed to a walking exercise using a foot pressure point device, and gradually continue on to rhythmic exercising. Exercise intensity is maintained at 40-70% Vo^sub 2^max by conducting periodic pulse rate measurements. Aerobic exercise usually occurs for approximately 15 minutes and it is followed by a 10-minute period of deep breathing and massages using balls.

Table 1. Framework for a Health Support Process for Family Members Who Accompany and Help Minister to Child Patients

An advantage of this exercise program is that anyone, regardless of one's age, can participate in the program on the spot. Also, the exercises do not require much space.

Overview of the Facility

Because our advanced treatment hospital is the only university hospital within the prefecture of Miyazaki, numerous children are referred to our pediatric ward from other areas across Miyazaki Prefecture. These children's conditions range widely from acute infection disease, congenital heart disease, malignant tumor, nerve or locomotory illness, and renal illness, to surgery for ocular or otolaryngologic illness. Sometimes mother-child joint hospitalization occurs as a result of referral from the Perinatal- Maternity Center for child guidance purposes. Approximately half of all child inpatients are younger than six years of age with an average hospitalization period of 30 days. Hospital policy for family members ministering where a child patient is involved generally states that the age of the child be six or younger. However, in cases where the child is older than six, but requires ministering due to reasons such as quarantine, the hospital grants accompaniment of family members. Because of our policy to accommodate as many families as possible, our family ministering rate is close to 70% at times.

Status of Health Support Program Operation

The Health Support Program began in September 2001 and takes place once a week, on Thursday afternoons, for about an hour. As of January 9, 2003, there had been 57 programs conducted with a total of 302 participants. When the program was first implemented, it was open only to family members who were ministering to inpatients. Since then, however, we have opened the program to child inpatients that choose to partic\ipate in the exercise by themselves, as well as to child inpatients participating together with their family members. This trend has resulted in 156 family members and 146 child inpatients totaling 302 participants so far, with an average participation rate of 5.3 attendees per session.

Methodology

To assess the effectiveness of the Health Support Program, we used two methods. One involved blood pressure and pulse rate change before and after the program, along with comments from the participants. The second method entailed a 30-minute to an hour interview survey with the participants to obtain subjective data.

Participants and survey procedure. With regard to blood pressure and pulse rates, participants were measured prior to the start of the program and after the program was completed. At the time of measurement, participants' consent to use these rates as data for the purpose of measuring program effectiveness was obtained. From September 2001 to January 2003, data on 48 participants out of 80 were compiled for data analysis, as these 48 participants had met the requirement of complete participation (those who had arrived late or who had left early from the program did not meet the requirement). As for participants who had attended the program on more than one occasion, only the data from the days when they had met the requirements completely were used.

For the interview surveys, quasistructured interviews were held only after the purpose of the study was explained to the family members and after they had consented to participate in the study. To assess our program as a part of the nursing care, our criterion was to prioritize participants who had participated in the program more than once over those who had participated only one time. With regard to content of the interview, we asked the participants to speak freely on topics such as what had prompted them to join the program, on what their impressions of the program were after having participated in it, and on the Health Support Program itself. Interviews were held in hospital wards and in playrooms. Whenever the interviews were conducted in a ward, we ensured that other people were not present in the room.

Data analysis. We used statistical analysis software SPSS 11.0J, in which blood pressure and pulse rates at the beginning of the program were used as the independent variables. With the difference of subtracting beginning rates from ending rates as dependant variables, regression analysis was executed.

Table 2. Family Members' Health Conditions (N = 48)

Table 3. Family Members Impressions of the Program (N = 48)

Interviews were recorded on audio tape or stenographed, and later were documented verbatim. The authors then abstracted the documents to compile information on the effectiveness and significance of the child inpatients and their ministering family members.

Results

Previously existing health conditions of the family member of a child patient. At the intake stage for entering the program, family members are asked to describe any physical symptoms they may have so that they will become aware of their health conditions. Various physical symptoms of the 48 study participants included (a) physical pain 27(56.3%), (b) stiff shoulders 27(56.3%), (c) malaise/ exhaustion 13(27.1%), (d) insomnia 8(16.7%), (e) constipation 3(6.3%), and (f) sensitivity to cold temperatures 3(6.3%). Parts of the body that were sore or in pain were (a) shoulders 34(70.8%), (b) lower back 20(41.7%), (c) legs 14(29.2%), (d) back 6(12.5%), and (e) whole body 2(4.2%) (see Table 2).

Impressions of program participation. Participants' impressions of the program were collected at the end of program sessions and they were sorted according to their content. These categories were (a) "exhilaration" coming from "feeling good" 24(50.0%), (b) "alleviation of health conditions" expressed in such words as "relief from sore and pain" or "feeling easier with the body" 11(22.9%), and (c) new "awareness" of "feeling better by moving one's body rather than not moving" 2(4.2%) (see Table 3).

There were three participants who were interviewed on days when the program was not being held. All three were mothers of ill children. Regarding age, two of the mothers were in their 30's and one was in her 40's (see Table 4).

Table 4. Sample Responses from Interviews

Table 4. Sample Responses from Interviews

When asked why they were ministering to their ill children, in cases B and C, the interviewees answered, "It is a given that the children be ministered to;" while in A, the interviewee responded that although she had felt the need to minister to children, her reason was that, "the doctor had instructed" her to do so directly.

As for their reasons for joining the program, all of the interviewees pointed to recommendation by ward nurses as the reason why they had decided to participate in the program initially. In case A, however, she had become interested in the program even prior to the recommendation by the ward nurse.

Regarding their impressions of the program after participation, many responded with comments, such as, "It was fun;" or "It felt good;" and "I was able to feel refreshed." Through exercises of stretching and loosening of the muscles in the whole body and of moving one's body rhythmically to music, as well as through usage of the foot pressure point device and massage balls, interviewees noted effects ranging from "relief from lack of exercise and stress,""diversion,""feeling of comfort/exhilaration," to "relaxation." We noted that the program time provided an opportunity for some family members to distance themselves from their ill children. It also provided for an opportunity for parents and their children to spend their time together having fun. Thus, format of participation varied according to the needs of each family.

Changes in blood pressure before and after program participation. The mean valuestandard deviation for the highest blood pressure value and the lowest blood pressure at the start of the program were 113.515.3mmHg and 72.310.5mmHg, respectively. The mean valuestandard deviation at the end of the program for the highest blood pressure and the lowest blood pressure were at 112.012.9mmHg and 71.910.6mmHg, respectively. In performing regression analysis by using blood pressure at the beginning of the program as an independent variable and the difference of subtracting the highest blood pressure value at the beginning of the program from the ending value as dependant variable, the result was as follows: correlation coefficient: R=0.54, variance analysis: F=19.27 (p<0.001), non- standard coefficient: -0.34 (T=4.39, p<0.001), quorum: 37.12 (T=4.17, p<0.001) (see Figure 1). Therefore, a regression formula, which indicates that in cases where the highest blood pressure value is more than 109 mmHg at the outset of the program, blood pressure value will decrease to a lesser value at the end of the program and vice versa.

Whereas for the lowest blood pressure value, in performing regression analysis by using the lowest blood pressure at the beginning of the program as an independent variable and the difference of subtracting the lowest blood pressure value at the beginning of the program from the ending value as dependant variable results are as follows: correlation coefficient: R=0.42, variance analysis: F=9.57 (p<0.01), non-standard coefficient: -0.36 (t=3.09, p<0.01), quorum: 25.49 (t=3.02, p<0.01) (see Figure 2). Again, a regression formula, which indicates that in cases where the lowest blood pressure value is more than 70.8mmHg at the outset of the program, blood pressure value will decrease to a lesser value at the end of the program and vice versa.

As for pulse, the mean valuestandard deviation was at 68.88.3 at the beginning of the program and 70.49.1 at the end of the program. In performing regression analysis by using the pulse rate at the beginning of the program as an independent variable and the difference of subtracting the pulse rate at the beginning of the program from the ending rate as dependant variable, the results are as follows: correlation coefficient: R=0.38, variance analysis: F=7.08 (p<0.05), non-standard coefficient: -0.37 (t=2.66, p<0.05), quorum: 27.2 (t=2.81, p<0.05). The regression formula, which indicates that in cases where the pulse rate is more than 73.5 beats/ min. at the outset of the program, the pulse rate will decrease to a lesser rate at the end of the program and vice versa.

Figure 1. Changes in blood pressure before and after program participation. Highest Blood Pressure

Figure 2. Changes in blood pressure before and after program participation. Lowest Blood Pressure

Discussion

In Japan, generally, families had ministered to their ill children in the past. However, as complete nursing was implemented from the United States after World War II and as standard nursing was established during the 1950's, a trend to abolish ministering by the family members began. Yet, ministering by the family members continues to occur in today's world. Meanwhile, at the beginning of the 1990's, the concept of "family participation" was introduced. "Family participation" is a concept that is being watched ever so closely today, as the term was first mentioned in England's Platt Report (1957) and was subsequently introduced to pediatric nursing studies area, garnering worldwide interest. In our country, it has been stated, "Family participation does not merely mean that family members partake in caring for the child on a daily basis and in providing treatment and healing. Rather, it means to provide the best care possible for the child, by means of forming a partnership between the family members, who know the child well, and nursing staff, who are professionals" (Nakano, 2000, p.707)

In this partnership, the child will be at the center, with the family members and the nurses discussing and negotiating the best \care options for the child. When such family participation occurs, the families are not looked upon as mere resources but as the subject of nursing care as well, so that it will be possible for families to receive care also. We believe that a Health Support Program can be an integral part of the care for the families and have outlined the program's purpose and effect in the following sections.

Families and health of ministering to child patients. As for physical symptoms that the family members had described, we only collected information that was freely given by them. Therefore, the number of symptoms may be lower than if had we asked them to circle possible symptoms on a list containing numerous symptoms. Despite this probable discrepancy, approximately 60% of the interviewees had described physical pain and/or stiff shoulders, and approximately 30% had complained of malaise and/or exhaustion. When compared to national research on citizens' basic life style, the results of our research for such symptoms are much higher. As for specific areas on the body for pain and soreness, shoulder seems to be the area where the most number of interviewees had indicated, with lower back, back, legs, and entire body being affected to an extent as well.

These results point to the fact that hospitals are extremely foreign environment from daily living for the family members, where little opportunity exists to move one's body. This leads to lack of exercise, compounded by other stress factors. At the same time, because hospitals do not offer a setting where one can relax and rest, we can infer that these factors may be causing circulatory problems like stiff shoulders and/or lower back pain. Additionally, because these symptoms are considered to be the norm in ministering family members, it seemed that hardly any attention or care was being given to these problems. Although ages of the subjects are not specified in this research for ethical reasons, mothers who minister to child patients were mostly in their late 20's to early 30's. These women for the most part had not been getting regular physical examinations since their last pregnancy, were not aware of their normal blood pressure, and/or were not practicing regular health check ups. Their decision to participate in the Health Support Program, however, seems to have raised self-awareness of their own health conditions, as the program allows for the participants to recognize these conditions. Because the program also includes "determination of health issues" and "realization for healthy activities," these aspects lead the participants to a more conscious understanding of their health.

Family members who minister to their child who is ill often assume that the parent and the child ought to remain together even in a hospital, just as they do in their own homes. However, in hospitals, basic life style issues such as eating meals, taking baths, and sleeping can become more difficult (Takeda, Shimada, & Hatae, 1997). One may encounter completely different situations, such as having to squeeze onto narrow beds, sitt in foldable metal chairs for extended periods of time, and/or not being able to sleep deeply because people are constantly coming in and out of one's room. Furthermore, family members often do not have an outlet to which they can voice their complaints, as they tend to prioritize their children's well being before their own. Subsequently, they do not allocate time to relax, to refresh their minds, or to care for their fatigue while staying at the hospital. Because of these conditions, nurses must become more aware of how the family members staying at the hospital are faring and of the relationship between the environment and the family members' health conditions, so that they can take the initiative in attending to the families' health needs.

Program purpose and effect. Upon examining changes in the blood pressure rate for 48 participants, we concluded that when the highest blood pressure or the lowest blood pressure at the outset of the program was more than 109 mmHg or 71 mmHg, respectively, the rate tends to decrease. In cases where the rates at the beginning are less than the figures above, they tended to increase by the end of the program. Researches have already shown that blood pressure rates fall to some extent not just among people suffering from high blood pressure and/or being overweight, but also among those individuals who are in good health. Exercises in our program are at a moderate level; therefore their effect on the circulatory system is not sudden and the blood pressure returns quickly to its normal rate after the exercise. Moreover, we have observed that participants seem to enjoy comfort and exhilaration from moderate perspiration that accompanies the rise in body temperature. Many of the participants actually have reported that their participation in the program had left them feeing comfortable and/or exhilarated. We have observed that their aches and pains may diminish somewhat from moving their bodies during the program. For those individuals with lower blood pressures, participation in our program seemed to raise their pressure rates, thus possibly increasing blood flow leading to more active blood circulation.

Responses collected at the end of the program indicated that many participants had felt exhilaration or alleviation of their aches. When three participants were interviewed on days when the program was not being held, they commented on the refreshing nature of their minds, relaxation, and stress reduction, among other effects, from participating in the program. The results also showed that on days when the program was held, some of the participants were able to sleep better.

All three interviewees had decided to participate in the program because the ward nurse had recommended that they do so on the day of the program. Even when the family members are aware of the program, participants feel safer when they hear from a nurse directly that, "(your) child will be fine, so please feel free to attend." As far as participation methods are concerned, our findings show that when the child patient is an infant that requires a lot of care, parents are able to enjoy some time on their own, away from the child. For families of child patients who are toddlers or school age children, by participating in the program together, both were able to enjoy their time in the program. When participants began to smile naturally, this smile seems to have had therapeutic effects on both mothers and children. Children who are toddlers or are of school age are in more need of playtime and therefore balls used in the program were effective in drawing their interest. Because the program occurs on a regular basis within the hospital ward, those who are being hospitalized for an extended period of time seemed to have incorporated the program into their daily lives.

Participants of the program vary with regard to their current situations; thus, each program is chosen based on the types of participants for each particular day. Among the different activities, bamboo stepping was popular among study participants because it could be practiced anywhere, and ball massage was popular with children regardless of age. Many commented that, "It felt so good, I felt as though I were about to fall asleep."

Among participants of the program who were not part of this study, there was a parent and a child who had decided to participate in the program together. The child had felt so good using the ball massage that he used it on his mother so that he too could feel good. We were delighted to see that a child, who is the one that is on the receiving end of the care for the most part, was caring for his mother in this particular setting. As our program was established with the hope of strengthening the relationship between parents and children, we had not expected to witness the ones being cared for taking care of the caregivers.

Implications for Nurses

In an age where patients have a right to be included in their own treatment process, parents also have a right to participate in their family member's patient care process. The basis for this process would include the family's well being and our Health Support Program aims to partake in fortifying this basis. Because the hospital is a completely different environment from one's daily life setting, it is not surprising to find that many family members who accompany their children's hospitalization develop all kinds of health problems. To provide effective treatment and healing care for the child who is ill, family members and nurses must form a working partnership. To this end, the nurses must be attentive to the health problems being experienced by the family members as well. We have received positive comments on the our Health Support Program, such as "By using my body, I am able to become kinder;""It makes me happy to see children in the program smile;""I was moved to see the humane care given to accompanying mothers of children;" and "When mothers are soothed both physically and mentally, that contributes to renewed strength to administer to their children."

In moving toward the notion that hospital's environment need not feel like a hospital, we must provide a space where both the child patient and family can spend time comfortably, a place within the hospital where families can refresh and relax, and nursing care programs that focus on family's health conditions. The field of family care is still developing. However, we have proven that our program contains an element for such family care.

References

Bonnie, H. (1994). Nursing research on the impact of hospitalization on the child and parents. The Japanese Journal of Nursing Research, 27(2-3), 16-25.

Endo, Y., Shiwaku, H., Terashima, M., Fukui, R., Sato, K., Toita, H., & Yamakawa, A. (1999). A study on QOL of the families of the children inthe hospital from malignant disease. North Japan Academy of Nursing Science, 2(1), 1-10.

Hirose, Y., & Fukuya, Y. (1998). Anxiety of mothers in home care children with congenital heart disease. The Journal of Child Health, 57(3), 451-459.

Hosaka, T., & Sugiyama, Y (1999). A structured intervention for family caregivers. Japanese Journal of Geriatric Psychiatry, 70(8), 955-961.

Imai, M. (1997). Mothers attending hospitalized children using Leininger's ethnonursing method. The Japanese Journal of Nursing Research, 30(2), 119-131.

Komamatsu, H., Inoue, H., Odawara, R., Takeshita, T., & Yamaguchi, M. (1991). Children with cancer and their families (second report). The Journal of Child Health, 50(4), 521-525.

Nakano, A. (2000). Family participation in child health nursing: Its significance and issues. The Japanese Journal of Child Nursing, 23(6), 707-712.

Ohta, N., Ono, T., Ohta, T., & Matsui, Y. (1992). The influence on the family of mothers staying away from home in order to take care her child who is suffering from a disease at a hospital: Psychosomatic change in children left at home. Bulletin of School of Health Science. Okayama University, 3, 5-61.

Sato, R., Kanda, K., & Anan, M. (2000). Sleep patterns of middle- aged older female family caregivers providing routine nighttime care. Journal of Japan Academy of Nursing Science, 20(3), 40-49.

Takeda, T., Shimada, M., & Hatae, Y. (1997). Current status and problems of medical environment for children with cancer. Iryo, 51(10), 463-470.

Watabe, N., Iwanaga, R., & Washida, T. (2002). Childcare stress and fatigue on mothers of preschool children with developmental disorders: A comparison between children with motor disabilities and those with psychosocial ones. The Journal of Child Health, 61(4) 553- 560.

Yamada, K., Suzuk,i M., Sato, W., & Miyazaki, T. (1997). Lifestyles and fatigue of caregivers of the impaired elders living at home. Journal of Japan Academy of Nursing Science, 17(4), 11-19.

Yokoyama, Y., Shimizu, T., & Nishimoto, K. (1998). Maternal health conditions in twins families with handicaps. The Journal of Child Health, 57(1), 71-77.

Yokoyama, Y., Kumode, M., Kiuti, Y., Ohya, N., & Shimizu, T. (1999). Maternal fatigue symptoms and childcaring environment of families with twins and handicapped family members. The Journal of Child Health, 58(5), 603-609.

Kurumi Tsuruta, MN, RN, is Assistant Professor, Department of Community Health and Psychiatric Nursing, School of Nursing, Faculty of Medicine, University of Miyazaki, Miyazaki, Japan.

Hifumi Kusaba, MN, RN, is Chairman and Professor, Department of Child and Maternal Nursing, School of Nursing, Faculty of Medicine, University of Miyazaki, Miyazaki, Japan.

Miyuki Yamada, RN, is Assistant, Department of Fundemental Nursing, School of Nursing, Faculty of Medicine, University of Miyazaki, Miyazaki, Japan.

Tazuko Murakata, ML, RN, is Assistant, Department of Community Health and Psychiatric Nursing, School of Nursing, Faculty of Medicine, University of Miyazaki, Miyazaki, Japan.

Rika Nakatomi, MN, RN, is Assistant, Department of Child and Maternal Nursing, School of Nursing, Faculty of Medicine, University of Miyazaki, Miyazaki, Japan.

Copyright Anthony J. Jannetti, Inc. Jul/Aug 2005

Source: Pediatric Nursing

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