Research has now moved away from looking at family dysfunction and increasingly recognizes the successful, resourceful ways in which families adapt and provide care.
Ray Jacques (UK)
An almost monolithic conception of the inevitability of distress, crisis, and pathology has been replaced by a recognition of extreme variability of family response and an understanding of the importance of identifying the antecedent causes of that variability'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 move away from institutional models of care
- the acknowledgement of the rights and value of people with disabilities within society
- changes in family structure generally
- the recognition of the importance of family care in providing support well into adulthood.
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.
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:
- family subsistence and financial base
- access to health or educational services
- home and community safety and convenience
- domestic tasks and chore workload for the family
- caring tasks
- marital role relationships
- social support
- father's role
- sources of information and advice.
|FIGURE 4: Social Ecology Model
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.
- Stable routines develop and the number of new accommodations reduces as other children of the family leave home and become independent.
- As carers age, their ability to provide care may be diminished by failing health. Siblings often share, either practically or emotionally, the support given to their parents and siblings with a disability.
The family life-cycle changes may vary significantly in the timing and type of transitions needed.
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.
REFERENCES AND FURTHER READING
Barnes C, Mercer G, Shakespeare T. Exploring Disability: A Sociological Introduction. London: Polity Press, 1999.
Bonfenbrenner U. The Ecology of Human Development. Cambridge, MA: Harvard University Press, 1979.
Gallimore R, Weisner T S, Bernheimer L P, Guthrie D, Nihira K. Family responses to young children with developmental delays: accommodation activity in ecological and cultural context. Am J Ment Retard 1993; 98: 185-206.
Glidden L M, Kiphart M J, Willoughby J C Bush B A. Family functioning when rearing children with developmental disabilities. In: Turnbull A P et al., eds. Cognitive Coping, Families and Disability: Participatory Research in Action. Baltimore, MD: Paul H Brookes, 1993.
Grant G, Ramcharan P, McGrath M, Nolan M, Keady J. Rewards and gratifications among family caregivers: towards a refined model of caring and coping. J Intellect Disabil Res 1998; 42: 58-71.
Hill R. Genetic features of families under stress. Social Casework 1958; 49: 139-50.
Kazak A E. Families with physically handicapped children: social ecology and family systems. Fam Process 1986; 25: 265-81.
Nolan M, Grant G, Keady J. Understanding Family Care: A Multidimensional Model of Caring and Coping. Buckingham: Open University Press, 1996.
Olshansky S. Chronic sorrow: a response to having a mentally defective child. Social Casework 1962; 43: 190-3.
Seligman M, Darling R B. Ordinary Families, Special Children: A Systems Approach to Childhood Disability. New York: Guilford, 1989.
Shearn J, Todd S, Parental work: an account of the day-to-day activities of parents of adults with learning disabilities. J Intellect Disabil Res 1997; 41: 285-301.
Stainton T, Besser H. The positive impact of children with an intellectual disability on the family. J Intellect Dev Disabil 1998; 23: 55-70.
|This article was first published in Psychiatry; Volume 2:9, September 2003 and reprinted with the kind permission of the Medicine Publishing Company.
Article published in 2003. Reviewed in 2019, content continues to be relevant.