Psychosocial functioning in siblings of paediatric cancer patients one to six months after diagnosis

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Abstract

The aim of this study was to prospectively investigate the prevalence of and risk factors for psychosocial problems in siblings of paediatric cancer patients. One and 6 months after diagnosis, sibling self-reported anxiety, social–emotional problems and quality of life (QoL) were assessed, as were the predictor variables: sibling prediagnosis functioning, age and gender and the ill child's diagnosis. At 1 month, siblings reported a lower QoL and adolescent girls reported more emotional problems compared with peers. At 6 months, adolescent QoL remained relatively impaired. Over time, adolescent brothers reported fewer emotional and total problems and young girls reported decreased anxiety. No significant amelioration in QoL was found over time. The older the siblings were, the lower their observed QoL at both measurements and in several domains. The occurrence of life events predicted sisters’ QoL at 1 month. Changes in sibling functioning were predicted by none of the investigated risk factors. Thus, QoL is impaired shortly after diagnosis. Adolescent siblings risk persisting problems in daily functioning. Further prospective research on other risk factors such as coping and family functioning over time is needed.

Introduction

When a brother or sister is diagnosed with cancer, siblings experience intrusive changes in family life. Siblings of paediatric cancer patients need to adapt to these changes and to the intrusive emotions such as fear, anger, isolation, jealousy, shame and guilt, which may be related to the illness of their ill sibling. They have to adjust to changes in family routines, to increased responsibilities and often to a decreased physical and emotional availability of the parents. The literature presents contradictory evidence for the risk of the development of psychosocial problems among siblings after the diagnosis of cancer in their brother or sister. Significant internalising problems, such as emotional and social withdrawal, anxiety, feelings of guilt, hopelessness, shame and sadness; or externalising problems, such as anger, non-compliance or other acting-out behaviour, were reported in several studies 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20. However, others found no substantial social–emotional problems in siblings of paediatric cancer patients 21, 22, 23, 24, 25, 26. Contradictory results are due to differences in samples, in study designs, and in the assessment and conceptualisation of psychological adjustment [27]. The paediatric oncologist and the nurse are the first professionals to encounter adjustment problems in family members of a child with cancer. It is most important that adjustment problems in siblings are recognised by medical staff at an early stage. Early recognition of adjustment problems is possible only when we know which children are ‘at risk’ for psychosocial problems.

Firstly, it can be argued that children who are vulnerable before the diagnosis of cancer in a sibling are at risk of developing more serious problems after the diagnosis 18, 28. Two studies indicate such a relationship between previous problems and later adjustment. Fife and colleagues [7] conducted a longitudinal study comprising the whole family of a child with cancer. They studied the psychosocial impact of the illness on 33 families. They found that in those families where problems existed prior to the diagnosis, family life deteriorated and family members had difficulties coping with the illness. In a quantitative study by Sahler and colleagues on sibling adjustment, pre-existing problems and postdiagnosis functioning were assessed systematically in 254 siblings. The results indicated that pre-existing problems were a major risk factor for subsequent problems in siblings of children in different phases of their treatment for cancer [16]. The sibling's previous functioning may thus be recognised as an important factor in the early recognition of later adaptational problems, but the aforementioned results have not yet been replicated in other studies.

Demographic factors and illness characteristics may also indicate why some siblings are more at risk for psychosocial adjustment problems than others. Again, study results are contradictory. Several studies found no differences between boys and girls in psychosocial adjustment to the illness 1, 6, 18, 24. Other studies found differences according to sibling age and gender. Young boys 16, 29 and adolescent siblings [29] (adolescent sisters in particular [16]) were at risk for increased emotional distress. Furthermore, several studies have demonstrated that younger siblings either experience more adverse effects 10, 17, 30 or a more limited positive growth 1, 5 than older siblings. In another study, no age differences were found regarding good or poor adjustment to the illness [18]. Differences in the nature of problems experienced at different ages were reported as well. Lower self-esteem was found in siblings aged 4–6 years, while depressive symptoms and anxiety were more pronounced in siblings aged 7–12 years [19]. In another study, siblings aged 8–13 years experienced feelings of isolation and loneliness, fear of becoming sick themselves and anger, whereas the older adolescent siblings experienced more complex feelings such as guilt, burden from their sense of responsibility for the ill child, and ambivalence towards their ill sibling [2]. These studies indicate that both younger and adolescent siblings seem to be at risk for adjustment problems, but these may be of a different nature. The differences according to age and gender are complex; they require a developmental viewpoint and need to be studied more thoroughly.

Besides the characteristics of the sibling, characteristics of the illness should also be considered. The diagnosis, treatment, number of hospital visits and side-effects will determine the burden of the illness for all family members. In a small sample, Madan-Swain and colleagues [24] found an association between the sibling's coping styles and the ill child's diagnosis. Siblings of a child that was diagnosed with a solid tumour seemed to engage more in self-oriented introspective strategies than siblings of children that were diagnosed with other forms of cancer. It was argued that, as a consequence of a relatively short treatment period, these siblings would have less access to information or support, and would have to rely more on their own cognitive coping abilities than be able to express their emotions or seek support. The number of nights that were spent in hospital was found to predict adjustment problems in siblings in a study by Sloper and While [18]. The disruptiveness of the illness for family life, in terms of hospital visits, thus seems to affect the sibling's wellbeing. The illness may also burden the sibling with extra responsibilities. Worries about the ill sibling may stimulate siblings to care for or be more considerate towards the ill child. For example, Barbarin [31] found that siblings became more independent the more severe the illness was. Two studies failed to demonstrate any effect of illness variables on the existence of problematic behaviour in the sibling 1, 16.

Besides the prevalence of adjustment problems in different subgroups of siblings, adjustment should be regarded as a process. The question is how sibling adjustment changes/develops over time. In a cross-sectional study, parents reported fewer internalising and externalising problems when more time had elapsed since the diagnosis [6]. In a single prospective study that was performed on sibling adjustment, it appeared that the prevalence of psychosocial problems did not diminish over time. Problems of a different nature were reported that differed according to the phase of the illness [17]. Psychosocial problems in siblings improved slightly during remission of the illness. However, anxiety remained relatively high during all phases of the illness in most of the siblings.

In summary, the aforementioned study results suggest a relationship between sibling demographic characteristics, sibling prediagnosis functioning, and illness characteristics on the one hand, and the prevalence and persistence of psychosocial problems after the ill child's diagnosis of cancer on the other hand. Nevertheless, consistent evidence on the nature of the psychosocial problems and on risk factors is lacking. Considering the lack of longitudinal studies, it becomes evident that the course of sibling psychological adjustment over time should be investigated further.

The first aim of the present prospective study was to investigate the nature and prevalence of psychosocial problems in siblings of paediatric cancer patients during the first 6 months following diagnosis. The second aim was to determine the contribution of different risk factors that exist prior to diagnosis, such as sibling age, gender, physical complaints, healthcare use and life-events and of illness characteristics, to sibling functioning over time.

Section snippets

Participants

Families of children diagnosed with cancer were recruited from two divisions of paediatric oncology, firstly at the Emma Children's Hospital in the Academic Medical Centre in Amsterdam, and secondly at the University Hospital in Groningen. Inclusion criteria were: a first diagnosis of cancer in the ill child; a maximum of 4–8 weeks between the medical diagnosis and recruitment for the present study; the presence of siblings aged 7–18 years in the family; and sufficient command of the Dutch

Prediagnosis functioning

Almost half of the siblings (48%) experienced two or more life events in the year before the illness, as reported by their parents (Table 2). Life events that were mentioned most were: a parent started to work more (n=16); a grandparent died (n=16); another family member died (n=13); a friend of the family died (n=13); a parent changed jobs (n=11); a parent was diagnosed with a physical handicap (n=8); a parent was fired (n=6); birth of a child (n=6); moving (n=6); another child was diagnosed

Discussion

The object of this study was to examine the psychosocial functioning of siblings of paediatric cancer patients at 1 and 6 months after diagnosis and to investigate the risk factors that explain why some siblings are more at risk for these problems than others.

In earlier studies on sibling psychosocial functioning, the factor time was rarely included, and considerable variation in study designs resulted in contradictory findings.

From the present study results, it appeared that siblings were at

Acknowledgments

This study was financially supported by the Dutch Cancer Society (NKB/KWF).

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