February 1998 - Ref 228
Children, young people and their families living with a hidden disability

A qualitative study has been carried out which documents the experience of families with a son or daughter affected by a hidden disability. Judith Cavet of Staffordshire University interviewed children, young people and their parents about living with chronic faecal incontinence resulting from a congenital bowel impairment. Her study found:

• Families felt there is little real appreciation of the very distressing nature of this disability. Their need for support often went unrecognised.
• Families required more information, both about the full implications of the original impairment and about practical methods of managing faecal incontinence.
• The well-being and self-confidence of those children and young people for whom a satisfactory procedure for continence management was established improved
• Most children and young people attended mainstream schools, but gaining access to adequate support was a complex task. The sensitivity of staff and an anti-bullying ethos were very important
• Children and young people often felt constrained to conceal their disability. Although they were generally successful in leading an active life style, their parents were often required to be on hand to support these opportunities
• The incontinence resulted in significant extra costs which had to be met from an income which was likely to be reduced by caring commitments. Families needed early information about welfare benefits, frequently having missed years of entitlement.
• Although regional hospitals played a key role in service provision, local services were generally not geared to meet the needs of these children and young people.
• While most of the children and young people in the study coped well with the many difficulties they faced, a minority of families developed further problems as a result of the stresses they encountered. It is likely that these could have been reduced by readily accessible information and support coupled with more open and accepting public attitudes

The social context

"People don't understand"

(mother of Joel, 14 years)

Negative public attitudes towards faecal incontinence had major implications for the children and young people in the study. The invisible nature of the original impairment meant there was no outward sign of a physical disability. Profound public distaste for faecal incontinence, plus general ignorance about its possible causation, led to feelings of social discomfort for affected children and young people. Inhibitions regarding discussion of continence limited the easy flow of information to and from families.

Embarrassment could affect all parties involved in communications about the incontinence. Some children and young people feared ridicule if their impairment became known beyond their immediate family circle. Thus the prevailing social climate often resulted in concealment. The importance attributed to body image led to concerns about appropriate clothing which did not reveal evidence of the impairment and its effects. The social climate concerning faecal incontinence also meant families lacked easy access to sources of support, both formal and informal.

Practical management

"You find out as you go along, the best things to do"

(father of Phillip, 9 years)

Of the 35 children and young people in the sample, two had achieved late continence. Nineteen used some special management procedure to manage their faecal incontinence, the most well-known example of which is a colostomy. Parents and young people reported a boost in confidence when a satisfactory management technique was established. One procedure - which involves regular colonic irrigation through a small abdominal opening - was particularly well regarded by the small number of children and young people who were using it. Children and young people had varying opinions about which means of management were appropriate and acceptable to them. However, the importance of the development of a clear and coherent strategy for management should not be understated, even though some young people expressed resignation about their incontinence.

Intrusive procedures, which were employed for assessment and as part of treatment, were described as physically and psychologically painful. Given their damaging effects, the necessity for their employment needs thorough evaluation.

Emotional impact

"They've got to live without it dominating"

(mother of Megan, 12 years)

The children and young people in the study wanted to lead an ordinary life style, and their families generally sought to support them in this aspiration. They participated in the great majority of everyday activities, including leisure pursuits. Additional parental involvement might be necessary to overcome obstacles, and help manage tensions associated with the greater degree of public scrutiny which is a by-product of group activity. Families considered carefully how much information to disseminate beyond the family circle and how far it should be circulated

Affected children frequently did not think of themselves as disabled. Some, especially those without a specific management procedure, did not wish to admit to their impairment and its effects. Efforts to minimise the effects of the disability led some children to refuse to acknowledge their incontinence. This applied particularly to those without a specific management procedure and might extend as far as their own family on occasions. The psychological costs of coping with an unpredictable pattern of faecal incontinence were considerable, this disability being described as "really emotionally trying" (Robert, 19 years).

Family life

"I want to give her all the opportunities in life"

(mother of Nasreen, 10 years)

Mothers were largely responsible for the practical tasks associated with the incontinence, but some fathers did help, especially those who were unemployed. The sample also included two single fathers who had carried out all the work involved for several years. As children matured, they themselves gradually took over responsibility for managing their disability. During a lengthy process they developed the expertise required, gradually gaining the confidence to proceed unaided and learning to accept the need for the self-discipline involved. For the great majority of families, grandmothers were the only significant source of unpaid help outside the immediate family, although a few had received occasional assistance from a female friend or relative.

Parents were sometimes concerned that the brothers and sisters of their affected child might have been deprived of attention. However, older and same age siblings tended to be supportive as regards the disability. Cramped accommodation could prove a problem, especially shared bedrooms and limited bathrooms. Family outings, trips and holidays went ahead when funds permitted, although more planning and supplies were needed. Independent overnight stays away from home needed particular thought, and were sometimes limited in number, effectively being delayed pending greater maturity.

Although families put considerable effort into achieving equal opportunities for their affected child, they lacked clear information about the degree of continence their son or daughter might be expected to develop. Family friction could develop as a result, especially if the child was seen as to blame for failure to develop continence. Concerns were expressed in some families about the potential impact of the incontinence for maturing young people as they began to develop sexual relationships. There was an emphasis on the need for the development of trust before confiding in any potential partner, or indeed, close friend. Nevertheless, most of the small number of young people in the sample who had relevant experience reported positive outcomes.

School life

"The most difficult part of my life really was junior school and early secondary school"

(Robert, 19 years)

Children were very largely educated in mainstream schools. However, gaining adequate social care to meet the needs of primary school children was often problematic. Individual support workers were highly valued by families, but as children grew older they wanted no arrangements which drew attention to their incontinence. Inquisitiveness and name-calling by other children was a very extensive problem, which could result in reluctance to attend school. Children required a sympathetic, supportive environment, with discreet staff and a clear commitment to anti-bullying strategies.

Cost

"Good God, how am I going to afford this?"

(mother of Joshua, 9 years)

The incontinence resulted in additional costs for laundry, nappies and pads, clothing and bedding. This was at a time when the opportunities for paid employment by the chief care-giver were limited because of caring commitments. Families developed knowledge about supplementary sources of income and supplies slowly and in a piecemeal fashion. Although almost all of the families had been in receipt of Disability Living Allowance for a period there was evidence of missed entitlement which could not be recouped later. Informal contacts were the most likely source of information about the benefit, in spite of the lack of public discussion about incontinence.

Information needs

"It's better like knowing, than being kept in the dark"

(Thomas, 11 years)

Families reported other gaps in the availability of accessible information. Many parents would have liked more knowledge about the nature of their child's physical impairment. They wanted information about possible causation, prognosis, potential treatment (including surgery) and likely outcomes, plus possible methods of management. Parents wanted to be well-informed so that they could avoid having to learn by trial and error, and so that they could give their children full and accurate explanations.

As children grew up, new questions about sexual activity and fertility emerged. Maturing children and young people appreciated doctors who addressed them directly. The use of clear and comprehensible language was important to both children and parents, and this was especially so in the case of those for whom English was a second language. The inaccessibility of medical information was frequently mentioned, as was the paucity of written information. Nationally-based self-help groups did not play a major role in disseminating information, although they were helpful to those families who did contact them. Families valued the opportunity to meet others in a similar position; this chiefly occurred through hospital contact.

Health and social services

"We did it on our own basically"

(mother of Neville, 12 years)

Regional hospitals played a key part in the provision of services. But after discharge, families found that local services were lacking and felt they were left to cope alone. Most locally based professionals knew little about their child's condition and were not in a position to offer informed advice. Continence services were not geared to provide supplies developed for use by children and young people. Improved information and advice, plus ease of access to appropriate support services in education, continence and welfare benefits, could have reduced stress and therefore the likely incidence of secondary problems.

A small number of children and young people had received psychological and psychiatric input. Talking to an understanding person was helpful, but behavioural interventions aimed at the continence itself did not result in lasting improvement. Any social work input tended to be very brief and geared to help in gaining access to material resources. The exception was the small number of families where child protection issues had developed.

"Everybody's got something different about them"

(Josephine, 12 years)

Although the study aimed at examining the social aspects of faecal incontinence, families frequently referred to the physical pain associated with the condition, and parents alluded to the life-threatening nature of the original impairment. There was evidence that some of the children learnt to empathise with the difficulties of others as a result of their own experiences. Overall, children, young people and their families worked hard to minimise the impact of the disability, and to maximise their acceptance by society.

About the study

Thirty-five families contributed information for the study. All had a son or daughter aged between 8 and 22 years who was affected by a condition known as 'imperforate anus' which generally requires surgery soon after birth and may result in chronic faecal incontinence. Parents and children both gave written consent to participation, and were usually interviewed separately. They lived in different parts of England and Wales and were diverse as regards class and ethnic group. Robina Shah interviewed families who had originated in the Indian sub-continent. Interviews, which were taped and transcribed, were analysed using Framework, an analytic method for qualitative data.

Further information can be obtained from Judith Cavet, Institute of Social Work and Applied Social Studies, Staffordshire University, College Road, Stoke-on-Trent, Staffs ST4 2DE. Telephone: 01782 294422.

A full report, People don't understand: children, young people and their families living with a hidden disability by Judith Cavet, is published by the National Children's Bureau in association with the Foundation, priced £9.95, ISBN 1 900990 24 5.

Click on the 'order report' icon in the left margin to order online.