Family Response to Cystic Fibrosis

Abstract

SYNOPSIS The effects of cystic fibrosis on 50 Victorian families with one or more affected children were examined in a study carried out between August 1972 and February 1973. The social and emotional problems experienced by family members, particularly the patients and mothers, are reported on. At all ages, socially embarrassing symptoms and awareness of being different create major problems for the patient. The uncertainty of prognosis and doubts about the prospects of employment are specially relevant for the teenager. It is suggested that the patient be given ample opportunity, from early adolescence onward, to discuss all aspects of his disease, and that more appropriate provision should be made for the total care of adult patients. Many problems, such as depression, feelings of isolation and the physical demands of constant treatment, which the parents of children with cystic fibrosis experience, are probably similar to those confronting parents of other chronically ill and handicapped children. But special difficulties stem from the genetic basis of cystic fibrosis and from the knowledge of an eventually fatal outcome. The roles of professional members of the medical team are touched on, particularly in relation to genetic counselling and the provision of practical and emotional support to parents. Comments are made on the establishment of lay organisations. The financial strain associated with obtaining regular medical attention was looked at, and suggestions are made for minimizing the economic problems of certain vulnerable families.

Management Issues for Adolescents with Cystic Fibrosis

“…Any differences from peers can be particularly distressing to an adolescent and could contribute to the development of anxiety and depression. CF affects almost all body systems and produces a wide range of symptoms that patients may find very embarrassing and distressing [14, 15]. An Australian survey found that symptoms seen commonly in CF (coughing, flatulence, steatorrhoea, discoloured teeth from antibiotics, and digital clubbing) were extremely distressing and isolating for adolescents, especially those that cause visible difference to their peers (pubertal delay, short stature, and low body mass) [15].…”

Stress Reactions in Children with Cystic Fibrosis

“…Subsequent studies of children with CF and their families have further confirmed that the chronic stress of this life-threatening illness has psycho-social implications (10,11). Allen et al (2) in 1974 discussed marital discord, maternal overprotectiveness, economic stress, and extreme sibling rivalry in the families of 50 Australian children with cystic fibrosis. Falkman (3) in Sweden, from interviews and questionnaires, found the children with CF to have sleep difficulties, enuresis, and isolation from their peers.…”

“…The past 20 years have brought increasingly sophisticated medical treatment for cystic fibrosis (CF), with emphasis on aggressively persuing earlier diagnosis and more vigorous supportive treatment (1)(2)(3)(4)(5). In 1984, Matthews & Drotar (6) reported that by 1981, '50% of children with CF were living into their 20's'.…”

Family and childhood adjustment in cystic fibrosis

“…These stressors often result in decreased marital communication and increased conflict. Siblings also struggle with issues such as survivor guilt and resentment of the attention and resources allocated to the CF child (Allan et al, 1974;McCollum & Gibson, 1970;McCrae, Cull, Burton, & Dodge, 1973).…”

“…Reality stressors include the burdens of an intense daily management regimen of chest physiotherapy, diet, and medications; inability to obtain even routine child care (much less respite care); financial burdens from the cost of treatment; lack of mobility in parental occupations and careers due to their child's uninsurability; and social ostracism as a response from family and friends (Allan, Townley, & Phelan, 1974;Anderson, 1960;McCollum & Gibson, 1970). Psychological stressors include a process of anticipatory grief associated with a chronic but eventually fatal illness; guilt, fear, and displaced anger associated with the genetic nature of the illness; and the often unacceptable resentment of the physical and psychological burdens inherent in caring for the child.…”