The existing literature on people with learning disabilities and challenging behaviour
has tended to focus to a greater extent on their epidemiology or the practical demands
and costs of caring (Qureshi, 1992; Qureshi, 1993; Kieman & Alborz, 1995), rather
than the parents’ adaptation and psychological health and well-being. Other research
studies in the field clearly show that carers of children with behaviour problems are
more likely to suffer from stress (Quine & Pahl, 1985; Quine 1986; Margarit et al,
1989; Saxby & Morgan, 1993). However, a number of studies (Snowdon et al, 1994) contradicting these findings have recently made their way to the existing literature on
challenging behaviour. For example, Snowdon et al (1994) report that social support from spouses and friends was related to satisfaction with family functioning in
parental carers, although acknowledging behaviour problems are experienced as
significant stressors. Several factors can account for these apparent contradictions:
difficulties in operationalising the term “challenging behaviour”; adoption of mixed
methodologies; researchers’ biases or prejudices relating to the traditional and/or
liberal based family models on the impact of disabilities on carers and their families,
Nevertheless, it is clear from these studies that there is a wide variation in response
between different carers and their families of people with similar types of challenging
behaviour, yet this variation has only recently begun to be acknowledged in the field
of disabilities as has the investigation of factors that may be related to it (Kieman &
Alborz, 1995). Such investigation can identify factors which may place families at
risk for stress or poor functioning, and conversely, those which may act as protective
factors providing resistance against such stress. Research studies which can identify
such risk and resistance factors are lacking in the literature on general disability, but
are extremely scant on carers and families of people, especially adults, with
challenging behaviour. There are several reasons for this.
Many studies (eg. Sloper et al, 1991) focus on a single diagnostic category, such as Down’s syndrome, or autism, and thus their findings cannot be generalised to the
general population of people with learning disabilities and challenging behaviour.
Where studies have attended to the needs of carers and families of people with
problematic behaviours, the samples tend to be restricted to children or adolescents or
young adulthood. In most cases, where sample sizes are small, it is not possible to
identify the needs and problems of carers of challenging behaviour, unless done
qualitatively, which studies have done so (Hubert, 1991; Qureshi, 1993; Kieman &
Alborz, 1995). However, this chapter has highlighted that the psycho-social-cognitive
needs of carers and families of people who show challenging behaviour are not only
likely to differ from those caring for people with particular disabilities or diagnoses
but are also likely to show variations amongst them. Yet little attention has been
given to the investigation of such differences, despite the fact that information on the
to inform policy and service delivery.
Few studies have investigated the wide range of variables that may be associated with
parental primary caregiver adaptation. Measurement has tended to be confined to
demographic variables and characteristics of the child, such as behaviour problems or
degree of impairment. Again, the literature presents conflicting findings on the
relationships of these variables to family adaptation. The use of univariate methods of
statistical analysis can fail to delineate the independent or interactive contributions of
different variables, as Quine & Pahl’s (1985) study showed problematic behaviours
were clearly a cause of stress. However, Bradshaw and Lawton’s (1978) study, using
multivariate analysis, showed the relatively small contribution to the variance in
maternal stress scores of such variables, and found that factors internal to the mother,
such as personality, were apparently more important. Despite these observations, few
studies have attempted to measure or control for such factors.
In the field of learning disability and mainstream work on stress, it has been shown
that a number of studies have addressed a wider range of variables and their
relationship to family adaptation, stress and quality of life (eg. Cmic et al, 1983; Friedrich et al, 1985; Sloper et al, 1991). These studies suggest that family resources, ways of coping, personality, life events and social support are all influential variables.
In the field of challenging behaviour such broad ranging multivariable studies are rare.
Recently the work of Kieman & Alborz (1995) has applied the model of stress and
coping to the study of adaptation in mothers of young adults with challenging
resource factors in maternal adaptation and the lack of effects of characteristics, such
as degree of impairment and behaviour. However, the small sample upon which their
study is based and the restricted age range limits the generalisability of their findings.
Families of people with challenging behaviour often require a complex range of
services encompassing a variety of professional disciplines. It can be a difficult task
for parents to obtain access to a comprehensive package of services in order to meet
their own and their child’s needs. The increasing emphasis on community care and the
evidence that, for adults with challenging behaviour, this is primarily family care, with
the main burden often falling on the mother (Romans-Clarkson et al, 1986), points to the importance of examining the professional and service needs of parents and
families to meet their needs and relieve the stress of caring. These issues form the
basis of the present study.