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A Psycho-Educational Model for the Facilitation of the Mental Health of Families Where a Child Is Diagnosed with Autism

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A Psycho-Educational Model for the Facilitation of the Mental Health of Families Where a Child Is Diagnosed with Autism COPYRIGHT AND CITATION CONSIDERATIONS FOR THIS THESIS/ DISSERTATION o Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use. o NonCommercial — You may not use the material for commercial purposes. o ShareAlike — If you remix, transform, or build upon the material, you must distribute your contributions under the same license as the original. How to cite this thesis Surname, Initial(s). (2012) Title of the thesis or dissertation. PhD. (Chemistry)/ M.Sc. (Physics)/ M.A. (Philosophy)/M.Com. (Finance) etc. [Unpublished]: University of Johannesburg. Retrieved from: https://ujdigispace.uj.ac.za (Accessed: Date). A PSYCHO-EDUCATIONAL MODEL FOR THE FACILITATION OF THE MENTAL HEALTH OF FAMILIES WHERE A CHILD IS DIAGNOSED WITH AUTISM By SUMARI BREETZKE Thesis submitted in fulfilment of the requirements for the degree PhD EDUCATIONIS In PSYCHOLOGY OF EDUCATION In the FACULTY OF EDUCATION At the UNIVERSITY OF JOHANNESBURG Supervisor: Professor C.P.H Myburgh Co-supervisor: Professor M. Poggenpoel January 2015 ACKNOWLEDGEMENTS I would like to thank the following people for contributing towards the completion of my study. Professor Chris Myburgh and Professor Marie Poggenpoel. It is very rare that two people can walk into your life and that you will forever be changed by their presence in your life. Thank you for all that you have done over the years and that you managed to keep me motivated to complete this journey. You will forever have a place in my heart. To all the families affected by autism that have allowed me to become part of their journey with autism. Your inner strength, love for your child and perseverance will stay with me. To my family, my husband, my parents and my brother and sister. You have all kept me going. Thank you for believing that I could finish this. i SUMMARY The family is a building block in society. When the family’s mental health is challenged the individual members are challenged in their contributions to society. Having a child diagnosed with autism spectrum disorder (ASD) place a unique set of challenges on the family where a child is diagnosed with ASD. Autism is a developmental disability that has a big medical component that means the children also struggle with medical issues like gut infection. When a child gets the diagnosis of ASD can be very overwhelming for a family as they have to deal with the initial shock and grieve of having a child that is medically sick and that has a range of developmental delays. Very quickly after the diagnosis the family starts to seek educational and medical services for their child affected by ASD. A family can very easily become overwhelmed by all the information and mostly lack of information about how to best assist their child. ASD then becomes a life changing event with pervasive emotional and social effects restricting the daily living of the family as a whole. It has a 100% implication on their life. The event threatens the core family identity, requiring the family to make diverse mental, social and environmental adaptations (adjustments) in order to deal with the changing family situation. Family resilience emerges as a powerful way of coping or adaptation in a family that has to live with ASD, demonstrated by a parental perspective that “it is getting better over time”. The overall purpose of this study was to elicit the lived experiences of families with a child living with ASD. The researcher used a post-modern constructivist approach in her research design. The researcher further made use of a theory generative, qualitative, exploratory, descriptive and contextual design. Data was collected by making use of in-depth phenomenological interviews, observation, field notes, drawings and essays. The central question was asked “tell me about autism and your family and how you think it affects your everyday life”. Siblings that were too young to take part in the phenomenological interviews were asked to “draw me a picture about your family”. ii Data was analysed by using Tesch’s steps (in Creswell, 2014:154-155). Categories were developed and compared and themes emerged. A cross validation study was done as well as a literature study. Concepts were identified using criteria described by Dickoff, et al. (in Nicol 1997:552-554). From this information a model for the facilitation of mental health in a family where a child is diagnosed with ASD was developed. It is the believe of the researcher that if a family can be taught to use resilience in their family, they will be able to overcome the challenges they face due to the diagnosis of their child with ASD over the life time of the child and in doing so manage their own mental health. iii TABLE OF CONTENT ACKNOWLEDGEMENTS i SUMMARY ii CHAPTER 1 OVERVIEW AND RATIONALE 1.1 RATIONALE 1 1.2 PROBLEM STATEMENT 8 1.3 RESEARCH PURPOSE AND OBJECTIVES 13 1.4 PARADIGMATIC PERSPECTIVES 13 1.4.1 Metatheoretical and theoretical assumptions 14 1.4.1.1 Relationship with self 15 1.4.1.2 Relationship with others 15 1.4.1.3 Time and space 16 1.4.3 Methodological assumptions 17 1.5 RESEARCH DESIGN AND METHOD 17 1.5.1 Research design 17 1.5.2 Research method 17 1.5.2.1 Step 1 – Concept analysis 18 a) Concept identification 18 a.i) Data collection 18 a.ii) Analysis of data 18 a.iii) Case record study 19 a.iv) Cross-validation report and literature control 19 b) Defining and classification of central concepts 19 1.5.2.2 Step 2 – Construction of relationships between concepts 20 1.5.2.3 Step 3 – Description of the model 20 1.5.2.4 Step 4 – Guidelines to implement the model 21 1.6 ETHICAL MEASURES 21 1.6.1 Informed consent 22 1.6.2 The right to privacy 22 1.6.3 Misleading of participants 23 iv 1.6.4 Willing participation 23 1.7 DIVISION OF CHAPTERS 23 1.8 SUMMARY 24 1.9 CHAPTER 2 RESEARCH DESIGN AND METHOD 2.1 INTRODUCTION 25 2.2 RESEARCH PURPOSE AND OBJECTIVES 25 2.3 RESEARCH DESIGN 26 2.3.1 Theory generative design 26 2.3.2 Qualitative design 27 2.3.3 Exploratory design 28 2.3.4 Descriptive approach 29 2.3.5 Contextual design 30 2.4 REASONING STRATEGIES 30 2.4.1 Analysis 31 2.4.2 Synthesis 31 2.4.3 Inductive reasoning 32 2.4.4 Deductive reasoning 32 2.5 RESEARCH METHOD 32 2.5.1 Step One: Concept analysis 33 2.5.1.1 Phase 1: Case studies: Identification of central concepts through fieldwork 33 a) Population and sample 34 b) Data collection 34 c) Data analysis 35 d) Cross validation report and literature 36 e) Identification of the central concept 36 2.5.1.2 Defining and classifying the central concept 37 a) Defining the central concept 38 a.i) Determined the aims or purpose of the concept 38 a.ii) Identified the uses of the concept 38 a.iii) Determine the defining attributes 38 v a.iv) Construct a model case 39 b) Classifying the central concept 39 2.5.2 Step 2: Placing concepts in relationship 39 2.5.3 Step 3: Description and evaluation of the model 40 2.5.3.1 Identification of the purpose of the model 40 2.5.3.2 Identification of concepts 40 2.5.3.3 Definition of the concepts 40 2.5.3.4 Establishing the nature of relationship statements 40 2.5.3.5 A description of the structure of the model 41 2.5.3.6 Assumptions of the model 41 2.5.4 Step 4: Description of guidelines 41 2.6 MEASURES OF TRUSTWORTHINESS 41 2.6.1 Truth value ensured by the strategy of credibility 42 2.6.1.1 Prolonged engagement in the field 42 2.6.1.2 Reflexivity (Field journal) 42 2.6.1.3 Triangulation 43 2.6.1.4 Member checking 43 2.6.1.5 Peer reviewing 43 2.6.1.6 Structural coherence 44 2.6.1.7 Authority of the researcher 44 2.6.2 Applicability is ensured by the strategy of transferability 44 2.6.3 Consistency ensured by the strategy of dependability 45 2.6.4 Neutrality ensured by the strategy of confirmability audit 45 2.7 CONCLUSION 45 CHAPTER 3 RESULTS AND DISCUSSION OF RESULTS 3.1 INTRODUCTION 46 3.2 DESCRIPTION OF THE REALISATION OF THE SAMPLE 47 3.2.1 Participants 47 3.2.1.1 Parents 48 3.2.1.2 Siblings 48 3.2.1.3 Extended family 49 vi 3.3 RESULTS 49 3.3.1 Discussion of results 49 3.3.1.1 Discussion of in-depth interview: Family one 50 3.3.1.2 Theme one: Experience of pervasive emotional and social effects ‘restricting’ the family as a whole 51 a) Experience on marital relationships 55 b) Experience of financial worries 56 3.3.1.3 Theme two: The experience of mental, social and environmental adaptations utilised by the family to deal with the changing family situation 57 a) Drawing by sibling 61 b) Practical aspects of the picture 62 c) Assessment of the picture 62 3.3.1.4 Theme three: Experience of family resilience as a powerful way of coping and adapting 67 3.3.2 Discussion of in-depth interview family two 69 3.3.2.1 Theme one: Experience of pervasive emotional and social effects “restricting” the daily living of the family as a whole.
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