Prace redakcyjne / Editorial papers Dermatologia Kliniczna 2004, 6 (4): 203-206
ISSN 1730-7201
Psychological experience of skin disease in children Aspekty psychologiczne u dzieci z chorobami skóry Linda Papadopoulos
Department of Psychology, London Metropolitan University, London, UK
Abstract
Although much attention has been paid to the psychological sequalae of dermatological conditions in adults, relatively little research has focused on the implications of skin disease in children. This despite the fact that a substantial proportion of children and teenagers suffer from conditions such as eczema, acne and psoriasis. The limited empirical data that is avail-able suggests that the psychological problems associated with a childs medical condition have long-term implications regarding both social and emotional development. These consequences affect not only the child but also the family unit where family dynamics and interactions can be significantly affected. As such addressing psychosocial problems can be even more crucial with children than with adults. This article will highlight possible relationship difficulties that may arise within a family after a child is diagnosed and focus on how counselling techniques can be applied to working with young dermatology patients and their families. It will also briefly discuss the methodological and practical shortcomings that often affect research in the filed of childhood illness, and recommendations will be made for future work in this area.
Key words: dermatology, children, psychology, family Streszczenie
Mimo ¿e wiele uwagi powiêcono nastêpstwom psychologicznym dotycz¹cym doros³ych pacjentów ze zmianami skórnymi, stosunkowo ma³o badañ by³o ukierowanych na skutki tych chorób u dzieci. Stan taki ma miejsce, mimo ¿e znaczny odsetek dzieci i nastolatków choruje na wyprysk, tr¹dzik oraz ³uszczycê. Nawet nieliczne dane pokaza³y, ¿e problemy psychologiczne wynikaj¹ce z chorób skóry u m³odych pacjentów maj¹ odleg³e nastêpstwa zarówno w odniesieniu do rozwoju spo³ecznego, jak i emocjonalnego. Dotycz¹ one nie tylko dziecka, ale równie¿ ca³ej rodziny, której funkcjonowanie mo¿e byæ znacznie za-k³ócone. Tak ujêty problem psychospo³eczny mo¿e byæ nawet bardziej istotny dla dzieci ni¿ dla doros³ych. W artykule podkre-
lono mo¿liwe trudnoci we wzajemnych kontaktach wewn¹trz rodziny, do których mo¿e dojæ po rozpoznaniu choroby skóry u dziecka, oraz przedstawiono zalecane techniki, które mog¹ byæ zastosowane w pracy z m³odocianymi pacjentami i ich rodzi-nami. Omówiono ponadto metodologiê i praktyczne niedoci¹gniêcia, które mog¹ wp³ywaæ na przebieg badañ dotycz¹cych problemu choroby w dzieciñstwie, oraz wysuniêto propozycje odnonie do przysz³ych prac badawczych w tej dziedzinie.
S³owa kluczowe: dermatologia, dzieci, psychologia, rodzina Introduction
ditions, such as cancer. Despite the lack of research, there is widespread acknowledgement of the impact of skin dise-Skin disease is very common among children and young ase on the psychological well being and quality of life of people. Up to 20% of young children develop eczema and children and increasing awareness of the importance of the majority of young people develop some symptoms of understanding the psychological impact of skin disorders acne temporarily during adolescence (1-2). However, there on children and their families (3).
is surprisingly little research on the psychological impact of This discussion will outline some of the key issues in skin disease in childhood and the focus of most research understanding the impact of skin disease on children and in paediatric psychology has been on life threatening con-their families. It will then proceed by describing how coun-203
Psychological experience of skin disease in children Dermatologia Kliniczna 2004, 6 (4)
selling can be applied to working with young dermatology secondary school. These transitions can be extremely diffi-patients and their families.
cult for a child with a skin condition who has to cope with other peoples reaction to their skin including considerable The impact of skin disease on children
amounts of curiosity and intrusive comments. Most young people or adults who have grown up with a skin condition Compared to the literature on adult skin disease, the can recall extremely unpleasant and traumatic episodes of psychological factors in paediatric skin disease have not being teased or excluded as a consequence of their skin been well explored. Although much can be learned from condition (8).
the adult literature, children with dermatological conditions Children who are visibly different from peers may attract are unique owing to the need to focus assessment and attention leading to teasing and bullying. While, childrens treatment on both the child and the family system. The lim-questions about dermatological conditions and disfigure-ited work undertaken thus far has suggested that the psy-ment can often be intrusive and difficult to answer. Mana-chosocial component is crucial in childhood skin disease, ging these types of reactions can be very difficult for a young just as with adults. For instance, Lewis-Jones and col-child with a skin condition and may result in them becom-leagues (4) pointed out that skin disease in children could ing increasingly self conscious. This will obviously have an have profound effects on their quality of life, disrupting fam-impact on the childs self esteem but can also set up a ne-ily and social relationships, interfering with sleep, play, gative mind set which results in the child becoming increa-sport and school and affecting development. Absolon and singly sensitive to comments and at worst withdraws from colleagues (5) found that children with eczema had higher or avoids social situations because of this. Consequently, rates of behavioural problems than healthy children.
these negative experiences may in turn affect the developIn order to understand the impact of skin disease on ment of social and interpersonal skills and in some cases children it is essential to consider both the childs develop-may interfere with learning.
mental stage and the context in which they live. The impact of a skin condition will vary considerably depending on the The impact of skin disease
age and level of independence of the child. Young children on relationships within the family
are entirely dependent on their parents for their healthcare and a young childs response to a skin condition is there-The diagnosis of a progressive or episodic skin condi-fore likely to both be influenced by, and have a strong influ-tion within the family can be stressful not only for the child ence on, the response of their parents. However, as the but the family as well. Skin diseases may signal a loss of child grows up, they will be more strongly influenced by normality, alter the familys concept of its self, challenge their peer group and become less dependent on their par-coping methods and lead to changes in roles, plans and ents. As a consequence of this, the implications for a child dreams (9). Parents may blame themselves if they believe with, for example, severe eczema at the age of two are the disease to be hereditary and siblings may themselves very different from the implications for an adolescent of 14.
fear acquiring the disease.
Whilst for the two year old child, their relationship with their The relationship between the child and the parents may parent and the parents skills in managing the condition have implications for the way the child makes sense and may be very important factors, for the adolescent, the im-copes with his/her condition. Research suggests that one portant issues are more likely to be related to their self of the most significant factors in the development behav-esteem, their sense of belonging to their peer group and ioural problems of children with disfiguring conditions is the their own ability to care for their skin.
reaction of the parents to illness of deformity (10).
Growing up with a skin condition may also an impact on Normal reactions of parents, which tend to occur with the childs self esteem. A multitude of social and psycho-the birth of a child with a skin condition, are listed below: logical factors will influence the development of self-
parental mourning i.e. the denial, anger, and sadness
-schemas. However, the variation in the impact on self that the parent feels following the birth of the child; esteem cannot be entirely attributed to the severity of the
disappointment, shame or guilt;
childs condition, because it is very dependent on psycho-
overprotection or overindulgence stemming from pa-logical factors and the childs beliefs about their condition.
rental anxiety;
It is possible for a child with very damaged skin to report
focusing on the needs of the sick child and disregard-high levels of self esteem and vice versa, for a young per-ing or downplaying the needs of other children in the son with very trivial skin blemishes to report a big impact on family;
self esteem. Self esteem has been most studied in relation
parental neglect or rejection of the sick child; to acne and studies have clearly demonstrated that adoles-
anger or resentment about the financial and practical cents with acne do have lower self esteem than non-affect-burdens of care-taking and medical treatment; ed adolescents (6-7).
parental depression and fatigue;
Young children are not usually self conscious about
marital problems between parents.
their appearance, but self consciousness tends to increA central concern is the impact of the skin disease on ase as the child grows up and most adolescents are acute-the mother-child relationship. There are several ways in ly self conscious. The school environment is likely to be the which the mother-child relationship may be affected by next most important context, which affects a childs adjust-a child with a skin condition. For conditions that are pre-ment. As a child gets older they have to leave the safe consent at birth but were not necessarily expected (for exam-fines of the family home and manage the transition first to ple, birthmarks or epidermolysis bullosa), the physical 204 nursery or playgroup, then to primary school and then to appearance of the childs skin can be very distressing. The
Aspekty psychologiczne u dzieci z chorobami skóry mothers immediate reaction may well be of shock and she matologists and GPs to properly explain the link between is likely to need some time and possibly support to adjust medical treatments and the psychological effects of a skin to this. There is considerable variation between mothers on disease because the psychological explanations familiar to how they respond to a skin condition, depending on fac-dermatologists in the past have been unacceptable to most tors related to the appearance of the baby and the moth-families.
ers own beliefs and attitudes towards physical appearance Limited research on many paediatric diseases and the (11). Whilst for some mothers, a skin condition can un-relationship between cognitive-developmental factors, doubtedly make it harder for her to bond with her child, for social factors and on evaluating psychological interventions mothers who bond well it can lead to an increased feeling for children has led to a need to adopt a cautious approach of protectiveness towards the child arising out of the need when generalising findings from one to disease to another, to protect a more vulnerable child. In the long term it is from one age group to another and from one set of psy-important for the mother to be able to find an appropriate chosocial circumstances to another. While methodological balance between caring for her child and allowing the child limitations, similar to those in the area of adult psychoder-to develop his or her own resources for dealing with diffi-matology, are a profound limiting factor as well. Our extre-cult situations arising from a skin condition.
mely limited understanding of the psychosocial processes In addition, physical contact between a mother and her of paediatric skin disease means that health professionals baby are very important for the developing relationship. If might be unable to provide the most replete service to the baby or child has a skin condition which is painful or addressing childrens psychological needs.
uncomfortable this may have an impact on the quality of However some researchers have shown that some pro-physical contact between the mother and child (12). In grammes using relaxation techiniques, stress management some cases, if the treatment requires a lot of skin contact, techniques and other cognitive behaviour techniques have for example, applying moisturisers or other topical medica-been effective in reducing stress and problems related to tion, or if the child requires a lot of physical contact to skin disease in children and in adolescents.
soothe them and reduce their discomfort, this can result in additional physical contact between mother and child, Therapy can help young children by:
although the quality of this contact may still be affected if
explaining to the child the causes and effects of certain the child is uncomfortable and finds the treatment proce-conditions may dispel certain fears or fantasies; dures unpleasant.
help children with skin conditions such as eczema and There are few empirical studies which assess the rela-psoriasis reduce scratching behaviour by encouraging tionship between a mother and child with a skin condition the childs involvement in other tasks;
(e.g. 13 and 14). The balance of evidence suggests that
encouraging them to discuss their problems with par-the presence of a skin condition does not always result in ents, teachers, or even friends rather than feeling iso-difficulties in the mother-child relationship, but that for lated and attempting to cope on their own; some mothers and children difficulties may develop. These
provide them with strategies for coping with bullying mothers will need sympathetic understanding of their diffi-or teasing such as social skills training where the culties with their baby and it is important that any difficulties child can learn to manage social situations more confi-are not seen as the mothers fault and she does not feel dently.
blamed for these difficulties. Too often the mother is seen as rejecting her child or dismissed as unable to bond with Therapy can help older children & adolescents by: her child, whereas she may need help and understanding
using stress management techniques;
to overcome her own fears and anxieties about her childs
using habit reversal techniques;
appearance. Developing the mothers confidence in han-
using cognitive restructuring concerning beliefs about dling her baby and managing any treatment is very impor-the self, others and appearance;
tant, as is enabling her to manage other peoples reactions
providing them with coping strategies such as social confidently. Encouraging direct physical contact can skill and assertiveness training.
help, for example by using simple massage techniques (15). Mothers often find it very helpful to talk to others Additionally, counselling can be equally helpful with the with the same condition, especially if the condition is very challenges raised for the parents. Some suggestions the-rare and is likely not to be well understood by most people refore follow as to how therapy can be helpful.
(16).
Therapy can help parents by:
How counselling techniques
helping the parents identify what their knowledge is about can be applied to children and parents
the disorder, their view about the chances of their child being affected and what difficulties they feel that they or There are significant barriers against children with their child will have coping with it;
chronic medical conditions receiving mental health treat-
providing information to parents about the condition ment. The barriers can be put up by GPs and dermatolo-and its implications;
gists, by the family and by metal health professionals them-
examining with parents the discrepancy of their expec-selves. Parents can become defensive as soon as psycho-tations and the actual condition;
logical factors concerning their child are mentioned and can
exploring feelings of guilt, shame and responsibility with interpret any advice by professionals as comment on their parents and challenging self-defeating thoughts around ability as competent parents. It can also be difficult for der-these issues;
205
Psychological experience of skin disease in children Dermatologia Kliniczna 2004, 6 (4)
helping parents clarify their choices and options about Conclusion
treatment or care;
help parents reduce their childrens scratching behav-There are still relatively few studies of the psychological iour by learning to pay less attention to scratching-relat-impact of skin disease on children and families, and very lit-ed behaviour and increasing their overall attention to tle formal evaluation of therapeutic input. However the appropriate behaviours that do not involve scratching; awareness of the impact of skin conditions on the quality of
helping them with developing good sleep habits in case life of both the child and his or her family has led to increa-where night wakings are caused by the childs dermato-sed acknowledgment of the importance of addressing logical condition such as atopic dermatitis; these difficulties. This in turn should lead to improved ser-
teaching them to develop reward systems for their chil-vices for children and families which integrate psychologi-dren.
cal approaches with medical treatment strategies.
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Address for correspondence:
Dr. Linda Papadopoulos
Department of Psychology
London Metropolitan University
1 Old Castle Street
London E1 7NT
UK