FIGURE 1: Historical perspective of family functioning and disability research
'An almost monolithic conception of the inevitability of distress, crisis, and pathology has been replaced by a recognition of extreme variability of family response and an understanding of the importance of identifying the antecedent causes of that variability' (Glidden, 1993).
The quotation illustrates the shift in thinking about the effects of disability on the family, and the family's effects on the person with a disability. This shift has occurred because of the increased sophistication of models used to understand family functioning, over the past 30 years. Other factors have contributed to this widening perspective:
The importance of family care
Research has shown that family carers support over 80% of people with a intellectual
disability and that family care remains the predominant type of care until middle
age. Professional, social and political systems need a greater depth of understanding
and empathy for the needs of family carers than they have at present. Accounts
of families' experiences frequently contain examples of unsympathetic and unhelpful
interventions from professionals, which may add further to family stress. Families
vary enormously both from one another and over time; the emphasis should therefore
be on understanding processes rather than categorical facts, and generalizations
are best avoided. This contribution discusses intellectual disability, although
many of the concepts and conclusions apply to a range of chronic disabling conditions.
Historical perspectives
Until the 1950s, the focus was mainly on maternal reactions to the birth of
a child with an impairment. A contemporary quotation reflects the dominant narrative
of despair:
'The permanent, day-by-day dependence of the child, the interminable frustrations
resulting from the child's relative changelessness, the unesthetic quality of
mental defectiveness, the deep symbolism buried in the process of giving birth
to a defective child, all these join together to produce the parent's chronic
sorrow' (Olshansky, 1962).
The birth of a child with a disability was seen as a tragedy for the family,
without hope of resolution or adaptation, a view that stigmatized the child,
the mother and the family. Within this context, institutional care was seen
as a way of preventing the child disabling the family. Such views are unacceptable
now, but they illustrate that the early research into family functioning was
based on a pathological model of adaptation, and that inferred maternal psychological
reactions were equated to family functioning. Mitigating or mediating factors
within the family or society were not felt to be relevant given the tragic nature
of the birth, thus ignoring the positive adaptations that families made.
The development of family systems theory
In the 1970s, family research moved away from models of individual pathology
with the development of family systems theory (Figure 1). The family was seen
as an interacting set of relationships, both between the members of the family
and with the wider society. This changed the focus to an interactional, and
subsequently more complex, model of family functioning. It also allowed for
the development of ideas about family life-cycle in relation to disability and
changes over time as opposed to the static individual pathology model. Early
applications of family systems theory were criticized, however, for assuming
that dysfunctional communication within the family was the cause of conditions
such as autism and schizophrenia.
Research developed into areas such as stress, coping mechanisms, support
networks, effects on siblings, other family members and the families of adults
with a disability. Research has now moved away from looking at family dysfunction
and increasingly recognizes the successful, resourceful ways in which families
adapt and provide care. The remainder of this contribution concentrates on these
newer developments.
|
FIGURE 1: Historical perspective of family functioning and disability research
|
Models of family functioning
Stress and coping
The concept of 'stress' as the tension between an event or situation and the
perceived ability to cope with or adapt to it has been developed to explore
the effect on family functioning of a person with a disability. This model of
family stress developed from a simple stimulus-response model, in which the
amount of stress related directly to the antecedent event. An early adaptation
was the 'life events' model, in which the stress is seen as a result of a series
of major life events, such as divorce or the birth of a child with a disability.
The focus was on the event rather than the response and took little account
of other factors that may affect the stress felt by the family.
One model of stress that has been widely applied to families is the 'double
ABCX' model (Figure 2). This provides a theoretical basis for examining the
mediating variables contributing to family stress, such as severity of disability,
socioeconomic status and the availability of support. The conflicting findings
have been attributed to differences in population samples, methodology
and statistical analysis producing seemingly incompatible results, with differing
variables seen as significant contributors to family stress. In addition, most
studies have been cross-sectional and only recently have longitudinal studies
been undertaken. Research indicates that a family has to respond to a complex
array of protective and stress variables to fulfil its care-giving functions
alongside its other family functions. No single variable is a predictor of stress,
and formal or informal support networks may compensate for deficits in family
resources.
|
FIGURE 2: Double ABCX model
Aa: Build-up of stressor events The double ABCX model provides a theoretical framework for multivariate analysis, which could be used to understand the complex relation between having a child with handicaps and family adaptation. The model builds on Hill's (1958) ABCX model, but focuses on family events over timie rather than single events. |
Effects of the nature of the disability: these have been examined with varying results. Comparisons between diagnostic groups such as Down's syndrome and autism have been studied. While differences in methodology make it difficult to reach conclusions, it appears that factors such as communication difficulties and behavioural problems - rather than particular diagnostic groups - predict stress. Providing physical care may be less stressful than supporting a person with behavioural problems. Comparisons between families with and without a person with a disability indicate that families of people with a disability have a higher degree of stress, but less so than had been assumed. The difference in levels of stress was correlated with a range of variables rather than just the person with the disability.
Coping: complementary to the research on stress is the work that has been undertaken on coping mechanisms. These mechanisms take a number of forms but seem to cluster into two main areas.
Problem-focused coping relates to conduct aimed at reducing the effect of the stressor event or changing it. It predominantly involves cognitive and behavioural strategies.
Emotion-focused coping seeks to regulate the feelings aroused by a stress
and aims to produce or maintain an emotional equilibrium.
Although both coping mechanisms may be required at times, families that predominantly
use problem-focused coping have lower stress levels.
Limitations: the limitation of the stress model is that it focuses on dysfunction rather than how families adapt to or function with complex demands and range of resources. This realization has stimulated research on the positive aspects for the family of a person with a intellectual disability, and the rewards and gratifications that it may bring.
Rewards and gratifications
Identifying family stress alone does not give a complete picture of the effects
of disability on the family. Researchers have recognized that the care-giving
role is associated with its own rewards as well as benefits for the beneficiary
of care and the family as a whole. The rewards seem to be more than coping mechanisms
to mitigate the stresses upon the family and are associated with positive benefits
that the person with a disability has brought to the family. Researchers have
attempted to identify core themes (Figure 3).
The concept of rewards does not mean that families do not experience stresses
and there is some evidence that there is an association between the prevalence
of stresses and rewards. The implication that overcoming adversity is a major
source of reward is a recurrent theme in interviews with carers.
| FIGURE 3: Positive impact: core themes
o Source of joy and happiness (From Stainton, 1998) |
The ecocultural model
The importance of this model, which is derived from the 'social ecology' model
developed by Bonfenbrenner (1979), is that it proposes that individuals and
families exist not in isolation but in the context of wider relationships within
society. The functioning of an individual or family depends on how they relate
to the wider context, which exerts influence upon them, and how they influence
the wider context (Figure 4). Examples of such relationships include workplace
flexibility, which may facilitate the balancing of work and care-giving responsibilities,
and how specialist intellectual disability services support a person with a
intellectual disability living with his or her family.
Accommodations: the ecocultural model suggests that families create
a meaningful and daily routine of family life. To create this routine families
must respond in various ways to the often conflicting pressures placed upon
them. These responses are referred to as 'accommodations'. The accommodations
are not only within the family but within the wider social context, the family
forming an ecocultural 'niche'. The importance of the concept is that it regards
families' behaviour as adaptive. By emphasizing extrafamilial aspects it allows
the exploration of the effects of services and society on family adaptation.
The process of accommodation is common to all families, and particular accommodation
variables have been identified in relation to families of a person with intellectual
disability:
| FIGURE 4: Social Ecology Model | |
 (Bonfenbrenner, 1979) |
Microsystem Mesosystem
|
The parent of a child with a disability may change jobs and even move the family
home to improve access to healthcare or schools. Siblings may take on domestic
tasks and families may leave or develop new social-support networks, join advocacy
groups or develop links with other carers. The accommodations they make depend
on the ecocultural constraints/resources available to them.
Families of people with intellectual disabilities usually make many accommodations,
which alter in intensity and frequency over time, in order to maintain the family
routine. This has important implications for services, which often increase
the number and intensity of accommodations families will need to make; for example,
behavioural interventions at home may involve a considerable amount of accommodation.
The ecocultural model also takes into account the other aspects of family life
that have to be maintained in addition to the care-giving responsibilities.
The overall impact of this research has been to show the sophistication of the
accommodations that families make and also points to preparatory adaptations
they make to prepare for future care-giving demands - often years in advance
- that may be placed on them.
Adults with intellectual disability
Most research into families has involved families with children rather than
adults with intellectual disabilities; however, the maintenance of family
care well into middle age has stimulated increasing interest in this area. Research
has shown that the nature and frequency of accommodation activity changes with
the transition to adulthood. There are two complementary themes.
The family life-cycle changes may vary significantly in the timing and type of transitions needed.
Conclusion
Research on families and disability has grown apace and with it the reasons
for family research, which are significant for professionals. The emphasis is
no longer on interventions that focus on a family's pathological reaction to
the birth of a child with a disability but on supporting and augmenting the
adaptive functioning of family care. The implications for practice and support
are important - many families have said that all too often professionals fail
to inform them or value their opinions. That many interventions add to the difficulty
of the adaptation families need to make is also a matter for concern. The research
increasingly reflects the complexity and variability of family life; although
difficult, it is preferable to the former pathological models of family functioning.
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| This article was first published in Psychiatry; Volume 2:9, September 2003 and reprinted with the kind permission of the Medicine Publishing Company. |
