A Self-Help Group for the Parents of Asthmatic Children
Norman J. Lewiston, M.D., Anne Sturmthal
A
chronic most common common chrome the most FASTHMA,the disease of children in the United States, leads to the loss of 8 million school days per year and affects at least a million families.’ Like other chronic diseases, asthma affects family functioning in various ways :2 l.
2.
Unpredictability of acute episodes or hospitalizations Distortion of family relationships (including siblings)
3. Financial burdens 4. Need for housing adaptations 5. Effect on school experiences
6. Threat
to
family
life
style
and
goals
Most of the other chronic diseases -cancer, heart disease, arthtitis-are understood by the parents to be caused by capricious internal factors over which they have little or no control. Asthma is different. Frequently it is underdiagnosed and undertreated. Family physicians seem loath to make the diagnosis because of connotations of in~rtalidism; Parents and grandparents plead for reassurance that the child will grow out of it. Teachers and coaches insist that the disease is all psychologic. From the Children’s Hospital at Stanford, Palo Alto, California 94304. Presented in part to the Association of Convalescent Hospitals for Asthmatic Children. San Francisco,
California, April 1, 1976.
Bergman, M.S.W.,
M.P.H.
The medical profession offers little comfc~rt. It may even be suggested that the meals prepared with lo~;~in~ care by the mother may actually be making the child sick. The same doubt may be raised with respect to the new bedroom carpet or the faithful family dog. Treatment may involve major changes in the home-a separate menu for a child, loss of a family pet, special privileges such as a private room-all extremely distressing to the family and marking the child as vulnerable. Physician visits, hospitalizations and medications may mount a significant financial
‘
burden.
The family often gets mixed messages from the health profession. Since many physician visits are emergency in nature, the parents may deal with different physicians during attacks -emergency room personnel or covering another’s practice. Each physician may have his own opinion about
acute
someone
how asthma should be treated and may prescribe a different bronchodilator regimen. One mother describes how, in desperation, her family physician handed her a paper bag of bronchodilator samples and suggested trying them until one was found which pleased her. It frequently is implied, tacitly or overtly, that the parents somehow may be responsible for the child’s disease. They are made to feel uncomfortable about voicing frustration-
888
Downloaded from cpj.sagepub.com at LAKEHEAD UNIV on March 15, 2015
frequently because the physician himself’ feels insec~~re. Sooner or later the emotional aspect of asthma will enter the discussion. No one will deny that an emotional problem in the family can trigger an acute attack or maintain the disease at a simmer of activity. Despite attempts to identify asthma as the expression of a central emotional problem, this explanation remains uneon~Jineing.v Most recent studies have not been able to identify any characteristic personality traits in asthmatic children. There has been little correlation between areas of severity, family adjustment, and treatment response .4 Identification of reactions to the illness in the form of anxiety states have been infrequent. Universally, hc~w~~er, patients and their families express frustration that asthma interferes with their social lives and goal achievements. Therapy in the form of family counseling or group therapy may be suggested to help work out this frustration. For many, the inconvenience and expense plus the stigma of being &dquo;shrunk&dquo; may preclude follow-through with therapy. These families may be more receptive to self-help. A &dquo;self-help. group&dquo; has been defined as a group of people sharing common needs and experiences who organize an action-oriented program to help others with the same problems, usually because the traditional system cannot meet their needs.’ Silverman6 has established criteria for such a group: 1) the group caregivers have experienced the same problems as the care receivers; 2) the recipient of service can change roles and ultimately become a caregiver; and 3) the policies and progress of the group is decided by a membership whose chief qualification is that they were at one time recipients of the services of this ’
organization. Prerequisite
to the success of any group effort is both awareness of a need, and a more or less clear purpose. We have many examples of groups in our community -weight
’
watchers, cheese-buying co-ops, ice-skating cl~zbs. Each has a task, known as the &dquo;occupation. 117 This not only provides group members with a reason for meeting, but also providers relationships which in the context of the group have an impersonal quality and a
of commitment. Foulkes and that in groups there are indicate Anthon V7 usually and perhaps always other occupations going on which are not &dquo;openly declared, which may not be understood by the group and of which the group may not be consciously defined
‘
aware,
amount
&dquo;
The family often gets mixed messages from the health profession. Each physician may have his own opinion about how asthma should be treated and may prescribe a different bronchodilator regimen. ‘
group for the parents of asthmatic children was formed in San Jose, California. Although the need for such a group in the community had been discussed over several years, it took the catalytic efforts of four very determined parents to get it started. They approached several physicians who gave them encouragement but little help. Finally they were directed to the American Lung Association where an energetic staff member agreed to assist them. The Lung Association had gathered a long list of people who had telephoned requesting information on childhood asthma. These were contacted by phone and invited to a meeting in a parent’s home. About 20 people, mostly strangers to each other, came to the first meeting. Most felt that they needed an arena to air their frustrations about their children’s asthma. They also wanted to learn more about the disease. Loeser states that successful groups must have certain characteristics: A
self-help
1. A
common
goal (the occupation
of the
group) Dynamic
and changing interaction members among 3. A relationship between size and function 4. Validation of feelings and selves, plus consent to proceed with the occupation A capacity for self-direction 8
2.
’
Among manifest occupations discussed at the first meeting were education of parents and children, establishment of breathing 889
Downloaded from cpj.sagepub.com at LAKEHEAD UNIV on March 15, 2015
‘
‘
classes, and fund raising for asthma research.
children. One of the authors (N. L.) arranged
The group
the
decided they were uninterested in serious fund raising. They actively wanted to talk about their own problems, The format of the first meeting was one of catharsis of frustration: &dquo;doctors just won’t listen,&dquo; with sympathetic nods from others present. This was seen as validation of the feelings of frustration and of themsetves
quickly
as functioning was
parents. A frequent comments glad to get that off riiv chest.
’4Whe~v, I’m
Now what can we do about it?&dquo; Group. members had some difficult times. One couple appeared who needed to ventilate feelings about their !6-vear-old daughter who had died of asthma. The group was able to handle this warmly and sympatheticatly, although it upset them considerably and took a couple of subsequent sessions to work out. Others came who had problems more appropriate to formal group therapy. The Lung Association, recognizing the latent occupation of the group as that of therapy, offered to supply a social worker. She was valuable in focusing discussion toward the manifest and latent occupations, although she was not
looked upon as a group !eader. Initial interest feU off as parents had their questions answered or gained courage to challenge or change physicians or as their children got better. Attendance fell. off with lack of interest. The Lung Association was unable to pay the social worker so she had to continue as a sometimes volunteer. The rehabilitation committee of the Lung Association refused to sponsor breathing classes for the children. Action slowed down con-
siderably. The four parents who had organized the group recognized the value of an available forum for new parents who might benefit from the group experience. A &dquo;come-on&dquo; was sought to attract potential group members. One such idea was lectures by local physicians with publicity handled through the Lung Association mailing lists, Another was the establishment of breathing classes for the
sponsorship of these activities by the local Association by asserting that this i%«>iild be a means of attracting new parents to the group. Using referral techniques ’similar to that «f’ classes for emphysema patients, Lung
children and their parents were recruited for quarterly classes .of six to eight children. The fee was $20.00 for four sessions, waived bv physician or 5c~cial worker request. The class fees paid for a physical therapist and one session by a social worker. White the children were in class, group members helped the parents through the phases of validation of feelings ot frustration and concern. Many of the new parents continued as group members. The parents view the group effort as a success. They have been able to speak up to physicians when they are not satisfied, able to vaiidate concerns of others for their children. able to offer &dquo;grass roots&dquo; advice to t~ec~ilc~ered parents. They have. in tact, been able to &dquo;(to something&dquo; about asthma. The heahh professionats involved have benefited afso. Shared experiences increase communication and sensitivity to each others’ concern. For these ends, self-help groups appear to be effective tools for families with an asthmatic child.
References 1.
Illness among children. Children’s Bureau Publication No. 405. Cited by Dees. S. C. In: Disorders of the Respiratory Tract in Children. 2nd ed., Kendig. E. L., Ed. Philadelphia, Saunders. 1972.
pp 426. 2. Travis, G.: Chronic Illness in Children, Its Impact on Child and Family. Stanford, California, Stanford University Press, 1976. 3. French, T. M., and Alexander, F.: Psychogenic Factors in Bronchial Asthma. Psychosom. Med. Monograph. 4, No. 1, 1941. 4. Mattson, A.: Psychologic aspects of childhood asthma. Pediatr. Clin. North Am. 22: 77, 1975. 5. Mantell. J., Alexander, E. S., and Kleinman, M. A.: Social work and self help groups. Health and Social Work 1: 87, 1976. 6. Silverman, P. R.: The widow as a caregiver. Ment. Hygiene 54: 540, 1970. 7. Foulkes, S. H., and Anthony, E. J.: Group Psycho8.
therapy, The Psychoanalytic Approach. Baltimore, Penguin Books. 1968, pp. 33. Loeser, L.: Some aspects of group dynamics. Int. J. Group Psychother.
890
Downloaded from cpj.sagepub.com at LAKEHEAD UNIV on March 15, 2015
7: 5,
1957.
Norman J. Lewiston, M.D., Anne Sturmthal
A
chronic most common common chrome the most FASTHMA,the disease of children in the United States, leads to the loss of 8 million school days per year and affects at least a million families.’ Like other chronic diseases, asthma affects family functioning in various ways :2 l.
2.
Unpredictability of acute episodes or hospitalizations Distortion of family relationships (including siblings)
3. Financial burdens 4. Need for housing adaptations 5. Effect on school experiences
6. Threat
to
family
life
style
and
goals
Most of the other chronic diseases -cancer, heart disease, arthtitis-are understood by the parents to be caused by capricious internal factors over which they have little or no control. Asthma is different. Frequently it is underdiagnosed and undertreated. Family physicians seem loath to make the diagnosis because of connotations of in~rtalidism; Parents and grandparents plead for reassurance that the child will grow out of it. Teachers and coaches insist that the disease is all psychologic. From the Children’s Hospital at Stanford, Palo Alto, California 94304. Presented in part to the Association of Convalescent Hospitals for Asthmatic Children. San Francisco,
California, April 1, 1976.
Bergman, M.S.W.,
M.P.H.
The medical profession offers little comfc~rt. It may even be suggested that the meals prepared with lo~;~in~ care by the mother may actually be making the child sick. The same doubt may be raised with respect to the new bedroom carpet or the faithful family dog. Treatment may involve major changes in the home-a separate menu for a child, loss of a family pet, special privileges such as a private room-all extremely distressing to the family and marking the child as vulnerable. Physician visits, hospitalizations and medications may mount a significant financial
‘
burden.
The family often gets mixed messages from the health profession. Since many physician visits are emergency in nature, the parents may deal with different physicians during attacks -emergency room personnel or covering another’s practice. Each physician may have his own opinion about
acute
someone
how asthma should be treated and may prescribe a different bronchodilator regimen. One mother describes how, in desperation, her family physician handed her a paper bag of bronchodilator samples and suggested trying them until one was found which pleased her. It frequently is implied, tacitly or overtly, that the parents somehow may be responsible for the child’s disease. They are made to feel uncomfortable about voicing frustration-
888
Downloaded from cpj.sagepub.com at LAKEHEAD UNIV on March 15, 2015
frequently because the physician himself’ feels insec~~re. Sooner or later the emotional aspect of asthma will enter the discussion. No one will deny that an emotional problem in the family can trigger an acute attack or maintain the disease at a simmer of activity. Despite attempts to identify asthma as the expression of a central emotional problem, this explanation remains uneon~Jineing.v Most recent studies have not been able to identify any characteristic personality traits in asthmatic children. There has been little correlation between areas of severity, family adjustment, and treatment response .4 Identification of reactions to the illness in the form of anxiety states have been infrequent. Universally, hc~w~~er, patients and their families express frustration that asthma interferes with their social lives and goal achievements. Therapy in the form of family counseling or group therapy may be suggested to help work out this frustration. For many, the inconvenience and expense plus the stigma of being &dquo;shrunk&dquo; may preclude follow-through with therapy. These families may be more receptive to self-help. A &dquo;self-help. group&dquo; has been defined as a group of people sharing common needs and experiences who organize an action-oriented program to help others with the same problems, usually because the traditional system cannot meet their needs.’ Silverman6 has established criteria for such a group: 1) the group caregivers have experienced the same problems as the care receivers; 2) the recipient of service can change roles and ultimately become a caregiver; and 3) the policies and progress of the group is decided by a membership whose chief qualification is that they were at one time recipients of the services of this ’
organization. Prerequisite
to the success of any group effort is both awareness of a need, and a more or less clear purpose. We have many examples of groups in our community -weight
’
watchers, cheese-buying co-ops, ice-skating cl~zbs. Each has a task, known as the &dquo;occupation. 117 This not only provides group members with a reason for meeting, but also providers relationships which in the context of the group have an impersonal quality and a
of commitment. Foulkes and that in groups there are indicate Anthon V7 usually and perhaps always other occupations going on which are not &dquo;openly declared, which may not be understood by the group and of which the group may not be consciously defined
‘
aware,
amount
&dquo;
The family often gets mixed messages from the health profession. Each physician may have his own opinion about how asthma should be treated and may prescribe a different bronchodilator regimen. ‘
group for the parents of asthmatic children was formed in San Jose, California. Although the need for such a group in the community had been discussed over several years, it took the catalytic efforts of four very determined parents to get it started. They approached several physicians who gave them encouragement but little help. Finally they were directed to the American Lung Association where an energetic staff member agreed to assist them. The Lung Association had gathered a long list of people who had telephoned requesting information on childhood asthma. These were contacted by phone and invited to a meeting in a parent’s home. About 20 people, mostly strangers to each other, came to the first meeting. Most felt that they needed an arena to air their frustrations about their children’s asthma. They also wanted to learn more about the disease. Loeser states that successful groups must have certain characteristics: A
self-help
1. A
common
goal (the occupation
of the
group) Dynamic
and changing interaction members among 3. A relationship between size and function 4. Validation of feelings and selves, plus consent to proceed with the occupation A capacity for self-direction 8
2.
’
Among manifest occupations discussed at the first meeting were education of parents and children, establishment of breathing 889
Downloaded from cpj.sagepub.com at LAKEHEAD UNIV on March 15, 2015
‘
‘
classes, and fund raising for asthma research.
children. One of the authors (N. L.) arranged
The group
the
decided they were uninterested in serious fund raising. They actively wanted to talk about their own problems, The format of the first meeting was one of catharsis of frustration: &dquo;doctors just won’t listen,&dquo; with sympathetic nods from others present. This was seen as validation of the feelings of frustration and of themsetves
quickly
as functioning was
parents. A frequent comments glad to get that off riiv chest.
’4Whe~v, I’m
Now what can we do about it?&dquo; Group. members had some difficult times. One couple appeared who needed to ventilate feelings about their !6-vear-old daughter who had died of asthma. The group was able to handle this warmly and sympatheticatly, although it upset them considerably and took a couple of subsequent sessions to work out. Others came who had problems more appropriate to formal group therapy. The Lung Association, recognizing the latent occupation of the group as that of therapy, offered to supply a social worker. She was valuable in focusing discussion toward the manifest and latent occupations, although she was not
looked upon as a group !eader. Initial interest feU off as parents had their questions answered or gained courage to challenge or change physicians or as their children got better. Attendance fell. off with lack of interest. The Lung Association was unable to pay the social worker so she had to continue as a sometimes volunteer. The rehabilitation committee of the Lung Association refused to sponsor breathing classes for the children. Action slowed down con-
siderably. The four parents who had organized the group recognized the value of an available forum for new parents who might benefit from the group experience. A &dquo;come-on&dquo; was sought to attract potential group members. One such idea was lectures by local physicians with publicity handled through the Lung Association mailing lists, Another was the establishment of breathing classes for the
sponsorship of these activities by the local Association by asserting that this i%«>iild be a means of attracting new parents to the group. Using referral techniques ’similar to that «f’ classes for emphysema patients, Lung
children and their parents were recruited for quarterly classes .of six to eight children. The fee was $20.00 for four sessions, waived bv physician or 5c~cial worker request. The class fees paid for a physical therapist and one session by a social worker. White the children were in class, group members helped the parents through the phases of validation of feelings ot frustration and concern. Many of the new parents continued as group members. The parents view the group effort as a success. They have been able to speak up to physicians when they are not satisfied, able to vaiidate concerns of others for their children. able to offer &dquo;grass roots&dquo; advice to t~ec~ilc~ered parents. They have. in tact, been able to &dquo;(to something&dquo; about asthma. The heahh professionats involved have benefited afso. Shared experiences increase communication and sensitivity to each others’ concern. For these ends, self-help groups appear to be effective tools for families with an asthmatic child.
References 1.
Illness among children. Children’s Bureau Publication No. 405. Cited by Dees. S. C. In: Disorders of the Respiratory Tract in Children. 2nd ed., Kendig. E. L., Ed. Philadelphia, Saunders. 1972.
pp 426. 2. Travis, G.: Chronic Illness in Children, Its Impact on Child and Family. Stanford, California, Stanford University Press, 1976. 3. French, T. M., and Alexander, F.: Psychogenic Factors in Bronchial Asthma. Psychosom. Med. Monograph. 4, No. 1, 1941. 4. Mattson, A.: Psychologic aspects of childhood asthma. Pediatr. Clin. North Am. 22: 77, 1975. 5. Mantell. J., Alexander, E. S., and Kleinman, M. A.: Social work and self help groups. Health and Social Work 1: 87, 1976. 6. Silverman, P. R.: The widow as a caregiver. Ment. Hygiene 54: 540, 1970. 7. Foulkes, S. H., and Anthony, E. J.: Group Psycho8.
therapy, The Psychoanalytic Approach. Baltimore, Penguin Books. 1968, pp. 33. Loeser, L.: Some aspects of group dynamics. Int. J. Group Psychother.
890
Downloaded from cpj.sagepub.com at LAKEHEAD UNIV on March 15, 2015
7: 5,
1957.
