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CHAPTER 2 LITERATURE REVIEW
Introduction
This chapter offers a critical review of the literature on family life when raising a child with ASD. The chapter begins with an overview of using a family systems perspective and addresses the complexities of defining “family” and “ASD”. Secondly, the concept of family quality a life is proposed as a framework for understanding and supporting families raising a child with a disability. Subsequently, the role of family routines and the meaning (or cognitive appraisal) of the impact of a childhood disability such as ASD on a family’s quality of life are explored. The chapter concludes with the conceptual model of the study, which is derived from the diverse empirical and theoretical work reviewed in the chapter.
Family systems perspective in families raising a child with ASD
Researchers have advocated the use of a family systems perspective when studying families and children with disabilities (Minuchin, 1985; Seligman & Darling, 2007). A family systems perspective views the family as a complex and interactive social system, what affects one member of the family impacts the entire family system (Minuchin, 1985). A family systems perspective rejects the view that linear relationships characterise family life, or that the only important relationship is between mother and her child. Instead, a family systems perspective considers families as unique, interactive and reactive units, with their own basic social system of rules, values and goals (Cridland et al., 2013). Viewing families from a systems perspective have broadened the traditional unitary, child-centred perspectives, and now seek to understand, from multiple levels of analysis, how child, family and service characteristics, as well as surrounding socio-cultural contexts, interact and overlap in their contributions to family functioning (Gardiner & Iarocci, 2012). In order to better understand and serve families with a child with a disability, it is important to move beyond individual family members and address the family as a unit of focus. However, defining a family tend to be particularly difficult in today’s world (Newman & Grauerholz, 2002).
Defining families
“The family” is often defined as a group of individuals, related by blood ties, marriage or adoption, who form a socio-economic unit, and where the adult members are responsible for the upbringing of children (Giddens & Sutton, 2014). This dominant operational definition of the family has become a matter of considerable controversy because it fails to take account the realities of diverse family lives that do not fit this implicit model (McCarthy & Edwards, 2011). This is even more relevant in a multicultural, multiracial and modernising society like South Africa. Although no single definition of family can be comprehensive enough to cover the different types of families in South Africa, it is important to define it broadly enough to avoid elevating the nuclear family to the position of norm against which all other family types are measured (Ziehl, 2001). The different types of families in South Africa are the products of various cultures and social contexts (Smit, 2001). The most common family type is the nuclear family (which consists of parents with their biological or adoptive children only). However, the proportion of nuclear families is declining, while the proportion of extended families is increasing – with Black African families having the highest proportion of three-generation families (Department of Social Development, 2012). More than 40 percent of all households in South Africa are headed by a single parent, and the majority of these families are headed by women. In addition, other important types of families existent in the country include skip-generation households and child-headed households, as well as same-sex partnerships, polygynous partnerships, and migrant families.
The definition developed by Rillotta, Kirby, Shearer, and Nettelbeck (2011) who views the family as the people who are closely involved in the day-to-day affairs of the household, who support each other on a regular basis, and are related by blood ties or by marriage or by close personal relationship captures the diversity of South African families. This definition allowed the researcher to focus on the interactions of family members and how they define and experience their family life (Shaw, 2007).
Defining autism spectrum disorder
Viewing a childhood disability such as ASD from a systems perspective acknowledge that disability is not only clinically defined, but also defined by the experiences of families within their socio-cultural context. ASD is currently conceptualised in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5, 2013) as “a behaviourally defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviours” (Ousley & Cermak, 2013, p. 20). Although substantial gains have been achieved in the knowledge of understanding the clinical symptoms of ASD, and advances made in research on genetics and environmental aspects, there are still major uncertainties remaining (Rutter, 2011). Ferguson (2002) proposed that a family’s interpretation of the meaning of disability cannot help but reflect to some degree the larger context of social attitudes and historical realities within which that interpretation emerges. The way a disability is defined and labelled, how families respond and adapt to a disability, and the barriers and opportunities created by a disability, are all part of a process that evolves over time, at multiple levels, within particular historical and political contexts (Skinner & Weisner, 2007). Research on families with a child with ASD suggests that parents hold a wide variety of beliefs about the cause, the course, and the outcome of their child’s ASD (Hebert & Koulouglioti, 2010); and that families construct a meaning of ASD based on their cultural values, personal experiences, upbringing, family attitudes, friends and community (Hebert & Koulouglioti,2010).
Family-focused ASD research
Most of the studies that looked at families with children with ASD is dominated by a negative portrayal of the impact of disability that elicits an elaborate representation of problems and risks (Gardiner & Iarocci, 2012; Karst & Van Hecke, 2012; Sivberg, 2002).
Hayes and Watson (2013) conducted a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without ASD. They reported that parenting a child with ASD was associated with greater parenting stress when compared to families with children who are typically developing, or those with other disabilities (e.g., Down syndrome, cerebral palsy, intellectual disability). It is recognised that having a child with ASD poses a range of distinct challenges on families. These challenges include, but are not limited to, accommodation of inflexible daily routines, management of unique intolerances, lack of spontaneity, and required assistance with self-care, mobility, communication and cognitive or emotional tasks on a daily basis (Cridland et al., 2013). On the other hand, very limited studies exist that investigates the effect of the family system on the child with ASD (Kelly,Garnett, Attwood, & Peterson, 2008). However, the experience of parenting stress is not the sole experience for parents of children diagnosed with ASD (Hayes & Watson, 2013). In an exploratory study, Little and Clark (2006) found that apart from pressing worries (mostly about adulthood and the future of their child), parents also experience prevalent joys (e.g., observing their child being happy, watching them grow, mature and succeed). Bayat (2007) examined family resilience in families of children with ASD and presented evidence that many families displayed resilience and have become stronger as a result of disability in the family. Another study by Phelps, McCammon, Wuensch, and Golden (2009) found that although stress is a major concern for caregivers of children with ASD, enrichment of their lives and personal growth may also occur in varying degrees. These positive findings underscore the importance of using a balanced view when assessing the family life of families raising a child with a disability (Turnbull, Summers, Lee, & Kyzar, 2007).
List of Tables
List of Appendices
Abstract
Opsomming
CHAPTER 1 PROBLEM STATEMENT AND RATIONALE
1.1. Introduction
1.2. Problem statement and rationale
1.3. Terminology
1.4. Abbreviations
1.5. Outline of chapters
1.6. Summary
CHAPTER 2 LITERATURE REVIEW
2.1. Introduction
2.2. Family systems perspective in families raising a child with ASD
2.2.1. Defining families
2.2.2. Defining autism spectrum disorder
2.2.3. Family-focused ASD research
2.3. Family quality of life
2.3.1. The unified family quality of life theory
2.4. Family routines
2.4.1. Ecocultural theory
2.4.2. Family routines of families raising a with a child with ASD
2.5. Cognitive appraisal
2.5.1. Stress, appraisal, and coping
2.5.2. Parents’ cognitive appraisal of the impact of ASD
2.6. Conceptual model of the study
2.7. Summary
CHAPTER 3 METHODOLOGY
3.1. Introduction
3.2. Research aims
3.3. Research design
3.4. Participants
3.4.1. Selection criteria
3.4.2. Recruitment of participants and sampling
3.4.3. Description of participants
3.5. Materials
3.5.1. Measuring the regularity of family routines
3.5.2. Measuring the positive and negative appraisal of the impact of ASD on the family41
3.5.3. Measuring family quality of life
3.5.4. Measuring family member demographics and family unit characteristics
3.5.5. Survey materials
3.6. Pretesting the survey booklet
3.7. Pilot study
3.8. Main study
3.8.1. Ethical considerations
3.8.2. Data collection procedures
3.8.3. Data preparation and data analysis procedures
3.9. Summary
CHAPTER 4 RESULTS
4.1. Introduction
4.2. The full SEM model
4.3. The measurement model
4.3.1. Reliability
4.3.2. Validity
4.4. Descriptive statistics
4.4.1. Family Routines Inventory
4.4.2. Family Impact of Childhood Disability Scale
4.4.3. Family Quality of Life Scale
4.5. Associations between demographic variables and Family Quality of Life
4.6. The structural model
4.7. Summary
CHAPTER 5 DISCUSSION
5.1. Introduction
5.2. The regularity of family routines in families raising a child with ASD
5.3. Positive and negative appraisal of the impact of ASD on the family
5.4. The family quality of life in families raising a child with ASD
5.5. The influence of individual family member demographics and family unit characteristics on family quality of life
5.5.1. The influence of individual family member demographics
5.5.2. The influence of family unit characteristics
5.6. The relationship between family routines, cognitive appraisal of the impact of ASD on the family, and family quality of life
5.6.1. The implications of the relationship between regular family routines and the satisfaction of family quality of life
5.6.2. The implications of the partial mediation effect of cognitive appraisal of the impact of ASD on the family
5.7. Summary
CHAPTER 6 CONCLUSION
6.1. Introduction
6.2. Summary of the findings
6.3. Clinical implications
6.4. Evaluation of the study
6.4.1. Strengths
6.4.2. Limitations
6.5. Recommendations for further research
6.6. Summary
References
Appendices
