Alistair Duff and Hiliary Hobbs. Jan, 2001. Psychosocial issues [online]. Seacroft and St James's University Hospitals, Leeds, UK. Available from http://www.cysticfibrosismedicine.com

Children with CF and their families can be vulnerable to a range of psychological and social difficulties. The nature of the illness and its treatment impacts on children's ability to respond to ordinary developmental tasks and extraordinary life events. However, children do not experience CF alone. Parents (and other relatives) play an important role in how the condition affects individual's emotional well being and quality of life. This tends to vary depending on the 'stage' of the illness. When a child is diagnosed with CF, some parents' emotional reactions are similar to those of bereavement, following distinct phases of shock, denial, anger, adaptation and acceptance. However, others have described what has been referred to as "chronic sorrow", characterised by periods of coping and mourning, which are brought on by stressful life events and periods of ill health. As children with CF grow, they can enjoy the same opportunities and challenges as their peers. However, at the same time, as they enter adolescence, increases in independence and responsibility for their own treatment can lead to frustrations. Uncertainty and lack of control over certain aspects of their life can lead to feelings of anxiety, insecurity and depression. Parents can be faced with a seemingly impossible task; bringing up a medically 'special' child and in as 'normal' a manner as possible preparing them for adulthood. Siblings can also be affected by the 'competing' demands for their parents' attention. Adults with CF may experience an entirely different range of emotional and social experiences, for example coping with work and relationships. Adults may also experience deteriorations in their health with negative effects on their independence, quality of life and psychological well being. As the emotional and social impact of living with CF has become increasingly acknowledged, psychosocial teams now routinely work in major CF units providing support, counselling and psychotherapy as part of their service. Such teams usually consist of social workers and clinical psychologists who have detailed knowledge of how the illness can influence emotional and social development. There is agreement that patients and families must be supported both practically and emotionally, by planned positive early interventions which should be immediately available during times of need.

Psychosocial assessment and intervention: Psychological and psychosocial intervention will vary according to the stage of the condition and the developmental stage of the child. In adulthood, the level of understanding and acceptance of the disease affects the type of intervention required.

Early Intervention Programmes: Psychosocial assessment and support is particularly important during the 'diagnosis' phase (Quittner & Di Girolamo, 1992) As many children who attend the Leeds unit are diagnosed shortly after birth, such programmes are generally aimed at helping parents emotionally adapt to the condition. The main aim at this stage would be to 'screen' for emotional and social difficulties and to offer immediate help if appropriate. Whilst all members of the team are involved in this, most noticeably liaison nurses and the social worker, it has recently been thought useful for newly diagnosed children and their parents to have initial contact with the clinical psychologist. Typical difficulties experienced by parents during this phase are; Intrusive thoughts and images relating to the diagnosis, Grief reactions (including shock, denial, anger and depression), The demands of treatment, Increased strain on family members (e.g., elder siblings). There is now extremely good evidence of the effectiveness of early psychosocial intervention and regular psychosocial meetings are held to ensure effective communication about patients and families well being. Whenever possible short introductory psycho-educational courses are run, where parents of newly diagnosed children are given detailed information about aspects of CF.

Behaviour Difficulties: As children move into infancy and early childhood, some parents have worries about how the condition and its treatment impact on their child. Behaviour difficulties are very common during this stage of development and are the ones that the psychosocial team are most frequently asked to become involved with. Psychosocial intervention usually begins with an assessment with the clinical psychologist and a behavioural intervention programme being initiated. If these difficulties relate to an aspect of treatment (e.g., feeding) subsequent intervention will often include joint work with other members of the team. As children move into infancy and early childhood, some parents have worries about how the condition and its treatment impact on their child. Behaviour difficulties are very common during this stage of development and are the ones that the psychosocial team are most frequently asked to become involved with. Psychosocial intervention usually begins with an assessment with the clinical psychologist and a behavioural intervention programme being initiated. If these difficulties relate to an aspect of treatment (e.g., feeding) subsequent intervention will often include joint work with other members of the team.

Emotional Difficulties: At times patients of all ages can find aspects of living with CF difficult to cope with. This may result in a wide range of difficulties (e.g., sleep problems, social withdrawal, poor treatment adherence). Very often individual counselling with the patient can help with such difficulties by exploring their understanding of CF, their views about how it affects their life and discussing any other sources of upset that may have occurred (e.g., bullying). Additionally, children sometimes have; Difficulties with certain aspects of treatment such as worries about school, physical problems made worse by worries, traumatic experiences, other anxieties, fears or phobias. Parents sometimes have worries about their child's development, the way in which CF has affected other members of the family (e.g., siblings) and relationships within the family.

Poor Treatment: Adherence Nearly all patients with CF have difficulties in adhering to treatment at some stage. In cases where these problems become chronic, the psychosocial team frequently becomes involved. Many studies have shown that good social and emotional support is effective in addressing adherence difficulties. In young children, such problems are usually addressed in collaboration with parents and the interventions typically involve a combination of individual counselling with the child and developing a behavioural management programme with parents. In older children and adolescents, individuals typically struggle with issues of self-identity and self-esteem. Treatment can often be perceived by patients as highly intrusive and something that "makes them different" from their peers. Intervention usually involves individual psychotherapy or counselling involving an exploration of the individual's self-perception and values. In adults, although not exclusively so, partial treatment adherence is typically associated with wider emotional difficulties (e.g. depression).

Pain Management: Many processes result in pain for CF patients. There are two main types: pain resulting from pathology (i.e., the physical aspects relating directly to the condition or it's treatment) and procedural pain. Intervention for pain management often involves clinical psychologists. Psychological approaches to pathological pain are well established and often complement pharmacological ones. They invariably start with monitoring the frequency and intensity of the pain followed by the application of a range of specific techniques (including distraction, relaxation, and re-appraising how the pain affects the individual emotionally). Patients with CF often undergo procedures that are potentially painful and occasionally frightening (blood tests, TIVAD access and intravenous cannulation). Indeed, children perceive needles as being the most frightening aspect of coming to hospital (Poster & Betz, 1983). If left untreated these problems can continue well into adulthood. There are now many effective psychological techniques which reduce fear and pain associated with acute medical procedures. These are commonly used by doctors and nurses in CF units, however in some extreme cases, patients may be referred to the clinical psychologist for more intensive work. This involves, graded exposure to needles (at a rate set by the patient) in conjunction with cognitive therapy and relaxation. In most cases, there is a significant reduction in fear.

Transplantation: Being considered for transplantation is a very stressful experience for patients and their families. From the moment the subject is introduced, psychosocial assessment and support is offered.

Emotional Difficulties in Adulthood: Adult CF patients can sometimes experience a range of specific psychological difficulties (e.g., depression and anxiety) that may be particularly associated with the emotional tasks of adulthood (e.g., independence, isolation, employment, relationships and parenthood). In such cases, the psychosocial response will usually involve individual counselling or psychological therapy with either the social worker or clinical psychologist. This work would be aimed at decreasing distress and improving psychological functioning, coping mechanisms and quality of life. In a few cases, it may be appropriate to refer to other mental health professionals (e.g., psychiatry). In the event, this decision would be taken in conjunction with other team members.

Confidentiality: Discussions are strictly confidential. Although core members of the CF team, clinical psychologists and social workers do not report back what is discussed to other team members without the permission of patients and/or their families. Indeed, where older children and adolescents are working individually with a member of the psychosocial team, parents are not routinely informed of the content of the sessions. However, both social workers and clinical psychologists have responsibilities to protect patients from harm and are statutorily bound to disclose information about people that they believe to be 'at risk'. Social workers have a statutory duty to investigate the need for child protection whenever there is a concern.

Reference

Quittner AL, Di Girolamo AM. Parental response to cystic fibrosis: a contextual analysis of the diagnosis phase. J Ped Psychol 1992; 17(6): 683-704

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