Family systems perspective in families raising a child with ASD

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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).

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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 thefamily
3.5.3. Measuring family quality of life
3.5.4. Measuring family member demographics and family unit characteristic
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

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