Family Issues

Research is moving away from focusing on family dysfunction and is now more aware of the efficient, effective ways that families can change and offer support.

Ray Jacques (UK)

A largely monolithic view of the inevitable nature of stress, crisis, and disease is now replaced by an appreciation of the extreme variance of family reactions and recognizing the importance of identifying factors that triggered the variation’ (Glidden, 1993).

The quote illustrates the change in our thinking about the impacts of disability on families and the impact of the family on the person who has an impairment. This shift results from the growing quality of models used to study family dynamics over the last 30 years. Other reasons have led to this broadening of the scope of view:

• the transition away from the institutional model of care
• acceptance of the rights and worth of persons with disabilities in the social system
• family structure, generally
• Accepting the significance of family care for providing the necessary support throughout adulthood.

Family care is crucial. Research has revealed that family caregivers care for more than 80 percent of those with an intellectual disability. Family care is still the primary care available until the middle of age. Political, social, and professional systems require a higher level of understanding and compassion towards the family caregivers as they currently do. The stories of families’ experiences typically include unresponsive and unhelpful intervention from professionals, which can add more stress for families. Families are highly diverse, both between them and over time. The importance should be placed on understanding processes, not specific facts, and generalizations should be avoided. This article focuses on intellectual disabilities; however, some aspects and conclusions can be applied to a variety of disabling chronic conditions.

Perspectives from the past

Before 1950 the 1950s, the emphasis was on the mother’s reactions to having a baby with an impairment. The current quote reflects the prevalent story of despair:

The constant, day-to-day dependence on the infant, the endless anger resulting from the child’s inability to change, the amoral quality of mental defect, and the profound symbolism buried within the birthing process of a deficient child. These cause the parent’s constant grief’ (Olshansky, 1962).

The birth of children who had an impairment was seen as a tragic event for the entire family, with no hope of a resolution or change, a perception that slammed the child, the mother, and the family. In this sense, the institution was viewed as a means to ensure the child did not harm the family. This is no longer the case, but they demonstrate that the initial study of family functioning was founded on a pathological adaptation model, and the inferred psychological reactions of mothers were equated with the functioning of families. Mediating or limiting aspects within the society or family were not considered necessary given how tragic birth was, thus overlooking the optimistic adjustments that families exhibited.

The creation of the family systems theory

As the 70s progressed, research into family relationships moved away from theories of individual psychiatric disorders with the advent of family systems theories (Figure 1.). The family was viewed as an interconnected set of relations between members of the family and with society in general. This led to a related and, later, a more complicated family model. This also enabled the formulation of ideas regarding the life cycle of a family about disabilities and changes in time, in contrast to the static model of individual pathology. FamilInearly days of the theory were, family systems criticized for their assumption that the dysfunction of communication within the family was the source of diseases like schizophrenia and autism.

Research has delved into anxiety, coping strategies, and support networks and their impacts on siblings, family members, and weandfamilies of adults with heritabilities. The field of research has shifted away from focusing on family dysfunction and has begun to recognize the practical, creative methods that families can change and offer support. The rest of this article is focused on the latest developments in this field.

1. The family’s history and disability research

Family models of functioning

Stress and managing stress

The concept of stress as the tension caused by an event or circumstance and the ability to deal with it or adapt to it has been designed to examine the impact on family functioning for someone with a disability. The model of stress in the family was developed from a basic stimulus-response theory, where stress levels are correlated directly to the prior event. One of the early modifications was the model of life events that posits that stress is viewed as the result of a sequence of life-changing events like marriage or the birth of an infant suffering from disabilities. The emphasis was placed on the event and not the reaction and did not consider the other elements that could affect the stress level experienced by the family.

One stress model widely used for families is the double ABCX model (Figure 2.). It provides a theoretical foundation for studying the variables that contribute to stress in families, like the degree of disability, socioeconomic status, and the accessibility of support. The contradicting results can be attributed to variations in the population samples, methodologies, and statistical analysis resulting in contradictory results based on factors contributing to family stress. Additionally, the majority of research studies are cross-sectional. However, only recently have longitudinal studies been conducted. The research suggests that families must adapt to various stress and protective variables to fulfill their caregiving duties and other family-related functions. No single factor can indicate stress and informal or formal support networks could compensate for the lack of family resources.

Figure 2 Double ABCX model: Building-up of stressor-related events

Bb: Resources increase to handle the situation

Cc: Perceptions of the family about this stressor and other incidents

Xx: Outcomes regarding family adaptation

The double ABCX model is a theoretical framework for the analysis of multivariate that can be utilized to comprehend the complicated relationship between having children with disabilities and the family’s adaptability. The model is based on Hill’s (1958) ABCX model. However, it focuses on family-related events over time rather than singular events.

The effects of the type of impairment These have been studied with different outcomes. The comparisons between groups of diagnostics such as autism and Down’s syndrome have been investigated. However, differences in methodologies make it challenging to come to conclusions; it seems that certain factors like difficulty communicating and behavioral issues instead of specific diagnostic groups – are the most reliable predictors of stress. Physical care can not be as stressful as assisting someone with behavioral problems. The comparisons of families without and with the person who has a disability show that families of those who have disabilities experience more stress, however less than what was thought. The differences in stress levels were associated with various factors and not just the individual with a disability.

Coping In addition to research on stress, research has been conducted on coping mechanisms. These mechanisms come in various forms but fall into two distinct areas.

Problem-focused coping is a method of coping that aims to reduce the impact of the event that caused stress or alter the way it affects you. It is primarily based on behavioral and cognitive strategies.

The coping focused on emotions seeks to control the feelings caused by stress and is designed to create or maintain an emotional balance.

While both strategies for coping may be needed in certain situations, families who typically use coping strategies that focus on problems have lower stress levels.

Limitations to the concept of stress are that it concentrates on dysfunction rather than how families adjust or manage the complex demands and various resources. This realization has led to research into the positive aspects for families of someone with an intellectual impairment and the benefits and satisfactions it can provide.

Reward and satisfaction

Identifying stress within the family alone will provide a complete understanding of the impacts of disability on families. Researchers have realized that caring for others comes with benefits and advantages for those who receive care and the family in general. The benefits are more than just coping mechanisms that alleviate the strains on the family members and are linked with positive advantages that the disabled person can bring into the household. Researchers have tried to find critical issues (Figure 3.).

The notion of rewards is that nodes guarantee that families are not subject to stress, but evidence suggests an interplay between the city and rewards. The notion that conquering obstacles is the primary source of reward is a frequent topic in interviews with caregivers.

3. Positive impact: The main themes

o The source of happiness and joy

A more excellent perception of the importance and purpose

o Enhanced social and personal networks

o Greater spirituality

o A source of closeness and family unity

Increased tolerance and understanding

o Personal development and vigor

Positive impact on other people/communities

(From Stainton, 1998)

The ecocultural model

The value of this theory, inspired by the social ecologies model created by Bonfenbrenner (1979), suggests that families and individuals are not in isolation but within the context of more extensive connections within society. The function of a family or an individual is dependent on how they relate to the larger context that influences their lives, as well as how they impact the larger context (Figure 4.). Examples of these connections include flexibility at work that can help with the balance of caregiving and work responsibilities and how specialist disability services can help the person who has an intellectual disability who lives with their family.

Accommodations The ecological model suggests that families build an enjoyable and consistent routine for family life. To create this routine, families have to respond in various ways to the constantly conflicting demands placed on them. These responses are known as “accommodations.” These accommodations are in the family and the larger social context, with the family becoming an ecocultural “niche.” The value of the notion is that it views the behavior of families as adaptable. Focusing on extrafamilial factors allows for the study of the impact of society and services on the family’s adaptation.

Adjusting to disability is universal to all families, and certain accommodation-related variables have been identified concerning families of someone with an intellectual disability.

• Family subsistence and financial base
• access to medical or educational services
• home safety and security, as well as convenience
• chores and household chores for the entire family
• care duties
• socialization
• marital roles
• social support for the social
• Father’s role
• Information and guidance sources.

A caregiver for a child who has disabilities might change jobs or even relocate the family home to increase accessibility to schools or healthcare. The siblings may also take on household chores, and families could quit or create new social-support networks and join advocacy groups. Establish connections with other caregivers. The accommodations they make depend on the ecocultural constraints/resources available to them.

Family members of individuals with disabilities must have several accommodations that vary in intensity and frequency to keep the family routine. This is a significant issue for the services provided, which can increase the quantity and severity of the accommodations families have to consider. For example, behavioral intervention at home can require significant amounts of accommodations.

The eco-cultural model considers other family life factors that must be protected alongside caregiving obligations. The main effect of this research has been to reveal how sophisticated the choices that families make. Additionally, shows the preparatory adjustments they implement to prepare for the future demands of caregiving, which are often years ahead, and that could be placed on the family.

Adults who have intellectual disabilities

Family research has primarily included families with children more than adults with disabilities. However, the ongoing maintenance of family care throughout middle age has prompted a growing interest in this field. Research has demonstrated that the frequency and nature of accommodation-related activities change as we move into adulthood. There are two related themes.

• Regular routines are established, and the number of new homes is reduced as more children in the family leave home and can live independently.
• As caregivers age, their ability to care for their loved ones may be impacted by declining health. Siblings typically share, physically or emotionally, the assistance given to parents or siblings with disabilities.

The family’s life cycle changes can differ significantly in the timeframe and nature of the transitions required.

Conclusion

The field of research on families and disabilities is proliferating, and along with it, the motivations for researching families and disability research are crucial for professionals. The focus is no longer on interventions that concentrate on families’ reactions to the birth or adoption of a baby suffering from disabilities but instead on supporting and improving the functioning of families. The consequences for the practice and support of families are significant, and many families have stated that professionals often are not informed or respect their views. The fact that many interventions contribute to the challenges of the changes families must make is another cause to be concerned about. The research findings increasingly reveal the complexity and complexities of family life. Although challenging, it is superior to the previous model of dysfunctional family life.