Scandinavian Journal of Plastic and Reconstructive Surgery
ISSN: 0036-5556 (Print) (Online) Journal homepage: http://www.tandfonline.com/loi/iphs18
Rehabilitating Families with Burned Children Sue S. Cahners & Norman R. Bernstein To cite this article: Sue S. Cahners & Norman R. Bernstein (1979) Rehabilitating Families with Burned Children, Scandinavian Journal of Plastic and Reconstructive Surgery, 13:1, 173-175, DOI: 10.3109/02844317909013050 To link to this article: http://dx.doi.org/10.3109/02844317909013050
Published online: 08 Jul 2009.
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Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=iphs18 Download by: [University of California, San Diego]
Date: 04 April 2016, At: 02:55
Scand J Plast Reconstr Surg 13: 173-175, 1979
REHABILITATING FAMILIES WITH BURNED CHILDREN Sue S. Cahners and Norman R. Bernstein
Downloaded by [University of California, San Diego] at 02:55 04 April 2016
From the Shriners Burns Institute. Boston, and Universitv of Illinois, Urbunu. Ill. USA
critical factor in the successful or unsuccessful life adjustment of the badly burned patient is his family’s reaction to this chronic problem, its ability to support him, and to help him pursue the long course of treatment and its many associated problems, and to also help him navigate the social world into which he must go. The high incidence of emotional disturbance in families sustaining bum injuries makes it vital to deal effectively and in a sustained manner to assess the types of emotional disturbances which exist in these families and to see how they influence the responses to the injuries and to the long and arduous treatments that follow. Different patterns of adaptation occur, some much related to economic class and special types of psychiatric disorder in the family. Some reactions of chronic grief and intermittent helplessness and hopelessness may transcent all groups, but the ability to follow through in later care vanes enormously, and is correlated with the overt depression of the mother. Several types of reaction are epitomized in the cases presented, along with directives for their management, and the interplay of social, somatic, and psychological factors which lead to these patterns will be delineated.
Absfract. A
The family is the most pervasive influence in a child’s development. A critical factor in the successful or unsuccessful life adjustment of the badly burned child is his family’s reaction to this chronic problem, its ability to support him, and to help him pursue the long course of treatment and its many associated problems, and to also help him navigate the social world into which he must go. The treatment plan for a child who is a bum victim must, therefore, include careful and sensitive work with the family from the very day of admission, on through the years of reconstruction and rehabilitation. The high incidence of emotional disturbance presenting in families with children sustaining bum injuries makes it vital to work effectively and in a sustained manner to assess the types of emotional disturbances which exist. In 1961 Woodward & Jackson reported that follow-up studies done in 1957 in the Birmingham Burn Unit had revealed
over 80% of the children showed emotional disturbance following a severe bum injury. Long & Cope at the Massachusetts General Hospital reported in 1961 a high incidence of psychopathology in the family unit prior to the injury. We continue to find a high level of disorganization and emotional disturbance which often has contributed directly to the accident. Most often, the disorganization or emotional disturbance contributing to neglect in child care has gone unnoted by helping agencies, so that the occurrence of a bum injury may be the culmination of a series of incidents, and the first time that action toward prevention and redirection in care and protection of the child is initiated. When a 10-month-old child is admitted with third-degree scald burns, and mother tearfully reports “I didn’t realize he could reach up to the teacup, he couldn’t do it last week” one may find on investigation that the baby is mother’s first child, that she has no close family ties to give motherly help, that she has no consistent pediatric follow-up, that she is indeed a lonely child herself. Or she may be living within a large extended family in a chaotic atmosphere where too much is going on in the kitchen. This is equally disastrous. Either way, it is a red flag for needed intervention. When a 4-year-old child is admitted following an incident of match-play, it is rarely found to be simple childish fascination with an exciting adult toy. More often, one finds a single-parent home with adult emotional distress, a report that he has played with matches often, that there is intense sibling rivalry or a yearning for the absent parent. The intervention necessary to redirect and improve care and protection of a child and to provide ongoing developmental health does not happen without well-planned team work in the hospital. Throughout the world, children with bums are Srand J f l u s t Reconstr Siwg I3
Downloaded by [University of California, San Diego] at 02:55 04 April 2016
174
S. S. Cuhners and N . R . Bernstein
treated through a variety of systems, in which the surgical and medical care tend to be most similar, and the social and emotional help for the families, the most varied. lnvolved in their long-term care may be a number of different case helpers, pediatricians, nurses, medical and psychiatric social workers, teachers, vocational and rehabilitation counsellors, as well as psychologists and psychiatrists. In order for their help to be most effective it is crucial that there be true communication rather than just formal administrative relationships among these professionals. While many specialists are involved, we will focus upon the specific use of the social worker to exemplify our approach. The social worker works openly with the staff and intensively with all parents from the time of admission until discharge. An atmosphere of trust and confidentiality must be established before voluntary participation in working toward change can be expected. This is best facilitated through social workers who are trained to communicate in a non-threatening, non-judgemental way. The nurse and the doctor are sincerely concerned and are dedicated in their well-meaning intentions to help but they are usually unable to ally themselves with a parent when they are daily caring for the child, nor do they have the time. However, they must show support and interest in carrying through a team effort. In the first days after admission, while attention is focused on survival, the social worker and the psychiatrist get to know the family and the circumstances of the injury, building clear pathways of communication. This enables them to help clarify the treatment plans and give much needed support during painful procedures and life and death issues. After the long weeks in the hospital, when it is necessary to prepare for the return of the injured child to society, and to plan for the protracted period of further reconstructive surgery, they have a clear understanding of the family’s psychodynamics, and can be more effective. This crisis intervention which occurs during the acute stage and culminates with a structured plan for the family at the time of discharge is in itself only a beginning of the total rehabilitation work needed. The return to home and school and peer group can be destructive if the community is not prepared. Ideally, the hospital and parents will work together toward this end as well. During re-entry into the home and community we S c u d J Plasr Reconstr Sitrg 13
recognize different patterns of adaptation, some related to psychiatric disorders in the family as well as to economic class. But no matter what the source of their difficulty in coping and following through with appropriate care, grief and guilt-as well as hopelessness and helplessness-are experienced at some time by all. It is these emotions whose negative forces must be eased in order to clear the path for progress in rehabilitation. The helping professionals need to be alert to this, and help support people without always forcing them to express feelings too quickly. Fathers wonder if they had not been absent, would this have happened. Bystanders feel they should have done more. peers wonder why they escaped, but mostly mothers wonder if they were remiss in their supervision of the child who was burned, whether the child was leaning over the stove, or found matches left on a table-r if marital problems were at the bottom of the lack of supervision. Because people do not easily accept the appearance of a burned child, the presence of a child with scars will be a constant source of hurt and unresolved grief and may give rise to continuing manifestations throughout his growing years. To ease their guilt, parents usually begin by looking for some logical explanation for the catastrophe, and those working with them help suppress their feelings of culpability by talking about how it was a true random even, an incident about which nothing could have been done; it would happen to anyone. However, one must be wary of some parrents’s need to blame each other, covertly or consciously, in an effort to minimize their own guilt. Actively involving parents in the care of their children is a very useful means of helping them deal with their guilt and feelings of helplessness. They can help feed, aid in physical therapy, and change dressings. The investment of time and energy in the hard work of care and rehabilitation gives them positive feelings and enhances their self-esteem. Both staff and family members must be wary of their tendency to become overinvolved with the damaged child, resulting in his being overprotected and pampered, also in depriving other siblings of attention to their needs. Parents who are called upon to donate their own skin as a temporary means of covering the burn wounds, feel a very special relief through this “second chance” to make up for what has happened to their child. The role of denial in maintaining adjustment to
Downloaded by [University of California, San Diego] at 02:55 04 April 2016
Rrli~ibilit~itin~.fnniilies with burned children serious disfigurement and loss is an important one and serves many useful functions for all members of the family. Their use of denial often is discomforting to staff who fear that families are not facing the reality of the burn; but the patient and his relatives need the opportunity to ignore the problem from time to time, often giving them renewed strength to face situations where they cannot ignore the disfigurement and its problems. A recent case in our burn unit which demontrates this is the story of Rena. an eight-year-old girl who suffered second and third degree burns over 65% of her body as the result of a house fire. The two other children in the family perished. Mother and father escaped without injury. The house was totally destroyed. Rena lost all of the fingers on both hands, her face was considered fourth degree burn, eyelids and nose were destroyed, the scalp injury was so severe she would never have hair. Mother remained at her bedside during the long weeks of struggling for life. Her style baffled and concerned the staff, as she never cried, was always cheerful, determined that this was the way they could both surviveathetrauma. She would often say “We will cry together later.” Many members of the staff admitted having serious difficulty in their efforts to save Rena’s life for what would surely be a hard struggle in our society. But mother never faltered. Rena was often heard to ask “How come you weren’t burned too, mama?’ As she recovered and the rehabilitative process intensified, mother’s cheerful face became a fragile shield over feelings of guilt and anger . . . anger at her husband for not sharing the long days at the hospital, anger at the staff for not healing Rena more quickly, anger in anticipation that the community would not accept her disfigured child. But to Rena she was always positive and reassuring that everything would be “just fine” and that mother and daddy loved her. Rena gained much needed strength from mother‘s ability to defend
I75
through denial. Daily mother met with the social worker and with other parents who helped with her intense grieving so that when she faced her child she could be supportive in her own chosen way. The hospital social workers remain available to support mother as she faces each new day and the assaults on her child’s ego. If Rena’s parents are helped to give her constancy, love, and feelings of her own self worth, she may develop as a well integrated, productive person. Erikson followed Anna Freud in citing that children who come to feel loved, become more beautiful. Burned children can be helped to feel more beautiful from within, if their caretakers are able to provide the love. Our work is to help the parents regain strength and redirect emotional energy in order to reach this goal.
REFERENCES Bernstein, N . R . 1976. Eniotionul ProblemJ of the Facially Burned and Disfigured. Little, Brown & Company, Boston. Cope, 0. & Long, R . T. I % I . Emotional problems of burned children. N E n g l J Med 264, 22. Erikson, E. H. 1%2. Insight and responsibility. Lectures on the Ethical Implicutions of Psychoanalytic Insight. Norton, New York. Jackson, D. & Woodward, J. 1959. Emotional reactions in burned children and their mothers. Br Med J i , 1009. McDaniel, J . W . 1%9. Physicul Disability und Hitman Behavior. Permagon, New York. Minde. K . , Hacket, J . , Killou, D. & Silver, S. 1972. How they grow up: 41 physically handicapped children and their families. Am J Physiol 128. 12. Plebs, I. B. & Pinkerton, P. 1975. Chronic Childhood Dimrder, Promoting Patterns qf Adjitstment. Yearbook Medical Publishers, Chicago. Spock. B . & Lerrigo, M . 0. 1%5. Caringfor Your Disubled Child. Aacmillan, New York. Ziller, R. C., Hagey, J . , Smith, M. & Long, B. 1%9. Self-Esteem: A self-social construct. J Consult Clin Psycho1 33. 85.
ISSN: 0036-5556 (Print) (Online) Journal homepage: http://www.tandfonline.com/loi/iphs18
Rehabilitating Families with Burned Children Sue S. Cahners & Norman R. Bernstein To cite this article: Sue S. Cahners & Norman R. Bernstein (1979) Rehabilitating Families with Burned Children, Scandinavian Journal of Plastic and Reconstructive Surgery, 13:1, 173-175, DOI: 10.3109/02844317909013050 To link to this article: http://dx.doi.org/10.3109/02844317909013050
Published online: 08 Jul 2009.
Submit your article to this journal
Article views: 12
View related articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=iphs18 Download by: [University of California, San Diego]
Date: 04 April 2016, At: 02:55
Scand J Plast Reconstr Surg 13: 173-175, 1979
REHABILITATING FAMILIES WITH BURNED CHILDREN Sue S. Cahners and Norman R. Bernstein
Downloaded by [University of California, San Diego] at 02:55 04 April 2016
From the Shriners Burns Institute. Boston, and Universitv of Illinois, Urbunu. Ill. USA
critical factor in the successful or unsuccessful life adjustment of the badly burned patient is his family’s reaction to this chronic problem, its ability to support him, and to help him pursue the long course of treatment and its many associated problems, and to also help him navigate the social world into which he must go. The high incidence of emotional disturbance in families sustaining bum injuries makes it vital to deal effectively and in a sustained manner to assess the types of emotional disturbances which exist in these families and to see how they influence the responses to the injuries and to the long and arduous treatments that follow. Different patterns of adaptation occur, some much related to economic class and special types of psychiatric disorder in the family. Some reactions of chronic grief and intermittent helplessness and hopelessness may transcent all groups, but the ability to follow through in later care vanes enormously, and is correlated with the overt depression of the mother. Several types of reaction are epitomized in the cases presented, along with directives for their management, and the interplay of social, somatic, and psychological factors which lead to these patterns will be delineated.
Absfract. A
The family is the most pervasive influence in a child’s development. A critical factor in the successful or unsuccessful life adjustment of the badly burned child is his family’s reaction to this chronic problem, its ability to support him, and to help him pursue the long course of treatment and its many associated problems, and to also help him navigate the social world into which he must go. The treatment plan for a child who is a bum victim must, therefore, include careful and sensitive work with the family from the very day of admission, on through the years of reconstruction and rehabilitation. The high incidence of emotional disturbance presenting in families with children sustaining bum injuries makes it vital to work effectively and in a sustained manner to assess the types of emotional disturbances which exist. In 1961 Woodward & Jackson reported that follow-up studies done in 1957 in the Birmingham Burn Unit had revealed
over 80% of the children showed emotional disturbance following a severe bum injury. Long & Cope at the Massachusetts General Hospital reported in 1961 a high incidence of psychopathology in the family unit prior to the injury. We continue to find a high level of disorganization and emotional disturbance which often has contributed directly to the accident. Most often, the disorganization or emotional disturbance contributing to neglect in child care has gone unnoted by helping agencies, so that the occurrence of a bum injury may be the culmination of a series of incidents, and the first time that action toward prevention and redirection in care and protection of the child is initiated. When a 10-month-old child is admitted with third-degree scald burns, and mother tearfully reports “I didn’t realize he could reach up to the teacup, he couldn’t do it last week” one may find on investigation that the baby is mother’s first child, that she has no close family ties to give motherly help, that she has no consistent pediatric follow-up, that she is indeed a lonely child herself. Or she may be living within a large extended family in a chaotic atmosphere where too much is going on in the kitchen. This is equally disastrous. Either way, it is a red flag for needed intervention. When a 4-year-old child is admitted following an incident of match-play, it is rarely found to be simple childish fascination with an exciting adult toy. More often, one finds a single-parent home with adult emotional distress, a report that he has played with matches often, that there is intense sibling rivalry or a yearning for the absent parent. The intervention necessary to redirect and improve care and protection of a child and to provide ongoing developmental health does not happen without well-planned team work in the hospital. Throughout the world, children with bums are Srand J f l u s t Reconstr Siwg I3
Downloaded by [University of California, San Diego] at 02:55 04 April 2016
174
S. S. Cuhners and N . R . Bernstein
treated through a variety of systems, in which the surgical and medical care tend to be most similar, and the social and emotional help for the families, the most varied. lnvolved in their long-term care may be a number of different case helpers, pediatricians, nurses, medical and psychiatric social workers, teachers, vocational and rehabilitation counsellors, as well as psychologists and psychiatrists. In order for their help to be most effective it is crucial that there be true communication rather than just formal administrative relationships among these professionals. While many specialists are involved, we will focus upon the specific use of the social worker to exemplify our approach. The social worker works openly with the staff and intensively with all parents from the time of admission until discharge. An atmosphere of trust and confidentiality must be established before voluntary participation in working toward change can be expected. This is best facilitated through social workers who are trained to communicate in a non-threatening, non-judgemental way. The nurse and the doctor are sincerely concerned and are dedicated in their well-meaning intentions to help but they are usually unable to ally themselves with a parent when they are daily caring for the child, nor do they have the time. However, they must show support and interest in carrying through a team effort. In the first days after admission, while attention is focused on survival, the social worker and the psychiatrist get to know the family and the circumstances of the injury, building clear pathways of communication. This enables them to help clarify the treatment plans and give much needed support during painful procedures and life and death issues. After the long weeks in the hospital, when it is necessary to prepare for the return of the injured child to society, and to plan for the protracted period of further reconstructive surgery, they have a clear understanding of the family’s psychodynamics, and can be more effective. This crisis intervention which occurs during the acute stage and culminates with a structured plan for the family at the time of discharge is in itself only a beginning of the total rehabilitation work needed. The return to home and school and peer group can be destructive if the community is not prepared. Ideally, the hospital and parents will work together toward this end as well. During re-entry into the home and community we S c u d J Plasr Reconstr Sitrg 13
recognize different patterns of adaptation, some related to psychiatric disorders in the family as well as to economic class. But no matter what the source of their difficulty in coping and following through with appropriate care, grief and guilt-as well as hopelessness and helplessness-are experienced at some time by all. It is these emotions whose negative forces must be eased in order to clear the path for progress in rehabilitation. The helping professionals need to be alert to this, and help support people without always forcing them to express feelings too quickly. Fathers wonder if they had not been absent, would this have happened. Bystanders feel they should have done more. peers wonder why they escaped, but mostly mothers wonder if they were remiss in their supervision of the child who was burned, whether the child was leaning over the stove, or found matches left on a table-r if marital problems were at the bottom of the lack of supervision. Because people do not easily accept the appearance of a burned child, the presence of a child with scars will be a constant source of hurt and unresolved grief and may give rise to continuing manifestations throughout his growing years. To ease their guilt, parents usually begin by looking for some logical explanation for the catastrophe, and those working with them help suppress their feelings of culpability by talking about how it was a true random even, an incident about which nothing could have been done; it would happen to anyone. However, one must be wary of some parrents’s need to blame each other, covertly or consciously, in an effort to minimize their own guilt. Actively involving parents in the care of their children is a very useful means of helping them deal with their guilt and feelings of helplessness. They can help feed, aid in physical therapy, and change dressings. The investment of time and energy in the hard work of care and rehabilitation gives them positive feelings and enhances their self-esteem. Both staff and family members must be wary of their tendency to become overinvolved with the damaged child, resulting in his being overprotected and pampered, also in depriving other siblings of attention to their needs. Parents who are called upon to donate their own skin as a temporary means of covering the burn wounds, feel a very special relief through this “second chance” to make up for what has happened to their child. The role of denial in maintaining adjustment to
Downloaded by [University of California, San Diego] at 02:55 04 April 2016
Rrli~ibilit~itin~.fnniilies with burned children serious disfigurement and loss is an important one and serves many useful functions for all members of the family. Their use of denial often is discomforting to staff who fear that families are not facing the reality of the burn; but the patient and his relatives need the opportunity to ignore the problem from time to time, often giving them renewed strength to face situations where they cannot ignore the disfigurement and its problems. A recent case in our burn unit which demontrates this is the story of Rena. an eight-year-old girl who suffered second and third degree burns over 65% of her body as the result of a house fire. The two other children in the family perished. Mother and father escaped without injury. The house was totally destroyed. Rena lost all of the fingers on both hands, her face was considered fourth degree burn, eyelids and nose were destroyed, the scalp injury was so severe she would never have hair. Mother remained at her bedside during the long weeks of struggling for life. Her style baffled and concerned the staff, as she never cried, was always cheerful, determined that this was the way they could both surviveathetrauma. She would often say “We will cry together later.” Many members of the staff admitted having serious difficulty in their efforts to save Rena’s life for what would surely be a hard struggle in our society. But mother never faltered. Rena was often heard to ask “How come you weren’t burned too, mama?’ As she recovered and the rehabilitative process intensified, mother’s cheerful face became a fragile shield over feelings of guilt and anger . . . anger at her husband for not sharing the long days at the hospital, anger at the staff for not healing Rena more quickly, anger in anticipation that the community would not accept her disfigured child. But to Rena she was always positive and reassuring that everything would be “just fine” and that mother and daddy loved her. Rena gained much needed strength from mother‘s ability to defend
I75
through denial. Daily mother met with the social worker and with other parents who helped with her intense grieving so that when she faced her child she could be supportive in her own chosen way. The hospital social workers remain available to support mother as she faces each new day and the assaults on her child’s ego. If Rena’s parents are helped to give her constancy, love, and feelings of her own self worth, she may develop as a well integrated, productive person. Erikson followed Anna Freud in citing that children who come to feel loved, become more beautiful. Burned children can be helped to feel more beautiful from within, if their caretakers are able to provide the love. Our work is to help the parents regain strength and redirect emotional energy in order to reach this goal.
REFERENCES Bernstein, N . R . 1976. Eniotionul ProblemJ of the Facially Burned and Disfigured. Little, Brown & Company, Boston. Cope, 0. & Long, R . T. I % I . Emotional problems of burned children. N E n g l J Med 264, 22. Erikson, E. H. 1%2. Insight and responsibility. Lectures on the Ethical Implicutions of Psychoanalytic Insight. Norton, New York. Jackson, D. & Woodward, J. 1959. Emotional reactions in burned children and their mothers. Br Med J i , 1009. McDaniel, J . W . 1%9. Physicul Disability und Hitman Behavior. Permagon, New York. Minde. K . , Hacket, J . , Killou, D. & Silver, S. 1972. How they grow up: 41 physically handicapped children and their families. Am J Physiol 128. 12. Plebs, I. B. & Pinkerton, P. 1975. Chronic Childhood Dimrder, Promoting Patterns qf Adjitstment. Yearbook Medical Publishers, Chicago. Spock. B . & Lerrigo, M . 0. 1%5. Caringfor Your Disubled Child. Aacmillan, New York. Ziller, R. C., Hagey, J . , Smith, M. & Long, B. 1%9. Self-Esteem: A self-social construct. J Consult Clin Psycho1 33. 85.
