THE PSYCHOSOCIAL EXPERIENCES OF ADOLESCENTS WITH JUVENILE
IDIOPATHIC ARTHRITIS
By
SHARON ANNE AITKEN
2012147761
This thesis is submitted in accordance with the requirements for the partial fulfilment of the requirements in the degree
Philosophiae Doctor
(Child Psychology)
in the
DEPARTMENT OF PSYCHOLOGY
FACULTY OF THE HUMANITIES
at the
UNIVERSITY OF THE FREE STATE
BLOEMFONTEIN
Supervisor: Dr P. Naidoo Co-supervisor: Dr A. Botha
Declaration
I, Sharon Anne Aitken, 2012147761, hereby declare that the dissertation titled The
psychosocial experiences of adolescents with juvenile idiopathic arthritis that I herewith
submit for the Doctoral Degree Child Psychology at the University of the Free State is my own independent work and that I have not previously submitted it for a qualification at another institution of higher education.
SIGNATURE:
____________________ DATE: 12 January 2019
Proof of Language Editing
Acknowledgements
This dissertation would not have been possible without the support of very special people. I extend my heartfelt thanks and sincere gratitude to:
The research participants, for their enthusiasm and willingness to share their experiences. This study would not have been possible without you. Thank you for your generosity.
The research supervisor, Dr Pravani Naidoo, for her academic perspicacity, dedicated commitment, exceptional patience, and unfailing encouragement. Thank you, Pravani.
The research co-supervisor, Dr Anja Botha, for her academic guidance and encouragement. Thank you, Anja.
The course coordinator, Dr Ronel van der Watt, for her support, encouragement, and wonderful wit. Thank you, Ronel.
My husband, Michael, for his love, steadfast support, patient understanding, and unwavering commitment to helping me reach my dream. Thank you, my darling.
My parents, Ann and Michael (RIP), for teaching me to reach for my dreams. Thank you, Mom, for all your support.
My sister, Judi, for her unlimited enthusiasm, wicked sense of humour, and unconditional support. Todah raba, my sister toastest.
My wonderfully supportive nieces who inspire me: Bianca, Charlotte, Jessica, Leigh, Micaela, Rachell, Samantha, and Ursula. Thank you for your understanding.
My friends, Brenda, Silvia, and Tracey-Ann for their encouragement, sense of humour, and cheerleading skills. Thank you for your patience.
The research team, Melody and Esley, for their help with transcribing the interviews, external coding, and editing this document. Thank you, Esley, for your above-and-beyond commitment.
I would encourage readers of this doctoral dissertation who are not familiar with the debilitating nature of chronic fatigue to first read Christine Miserandino’s “The Spoon Theory”1 before commencing the reading of the dissertation. “The Spoon Theory” has enabled many people to describe their experiences of chronic fatigue to significant others in a manner that facilitates empathy.
1 Available from: https://butyoudontlooksick.com/category/the-spoon-theory/ Due to copyright restrictions, the article may not be reproduced here.
Abstract
The aim of this study was to explore and describe the psychosocial experiences of South African adolescents with juvenile idiopathic arthritis (JIA). Consequently, rich, thick descriptions of their experiences and understandings of living with JIA were sought from seven individuals with JIA and their parents and situated within developmental psychopathology and resilience theory.
JIA is one of the most common chronic inflammatory diseases in childhood and adolescence. Notably, it is a debilitating auto-immune disease which has an adverse effect on the biopsychosocial functioning of children and adolescents as it causes high levels of chronic pain and fatigue. Despite an estimated prevalence of 18,700 cases in South Africa, only medical research has been conducted in the field of JIA in this country. Moreover, international psychology studies are mainly pathogenic in stance with only a few studies exploring resilience processes and well-being. In addition, most studies do not differentiate between child and adolescent participants. Hence, there is a need for both international and specifically South African qualitative psychological research that explores both the risk and the resilience processes that impact on adolescents with JIA. More specifically, an exploration of adolescents’ understandings of their adaptive processes and the possibility of experiencing well-being in illness is needed.
A multiple case study approach was chosen for this research. The participants were selected from the Western Cape and Gauteng provinces by using purposive and snowball sampling. Each case study consisted of an adolescent participant with JIA whose age ranged between 15 and 18 years of age and a parent participant. Two semi-structured interviews were conducted with the adolescent participants, while the parent participants were interviewed once. Thereafter, the data was analysed in a twofold, iterative process that made use of multilevel and thematic analyses. The final stages of analysis were guided by a developmental
psychopathology framework and resilience theory. Three main themes were identified – namely, multisystem risk processes, multisystem resilience processes, and adapting positively to living with JIA. In this regard, the findings indicated that the symptoms generated by the disease resulted in a cascade of transactions within and between the biopsychosocial systems, resulting in cumulative risk processes. However, over time, resilience processes developed in the biopsychosocial systems, which seemed to enable the adolescent participants’ positive adaptation to JIA.
This study has provided an initial foundation for further research in South Africa and has attempted to present the complexity of the multisystemic transactions that are involved in living with JIA. It has made valuable contributions to psychological research in the fields of JIA, developmental psychopathology, adolescent development, and adolescent resilience and well-being.
Keywords: Adolescent development, developmental psychopathology, juvenile
idiopathic arthritis, multilevel analysis, thematic analysis, resilience, universal theory of development, well-being
List of Tables
Table 4.1: Biographical information on adolescent and adult participants ... 107 Table 4.2: Overview of steps taken in Braun & Clarke’s six-phase analysis ... 118 Table 5.1: Overview of the themes and sub-themes ... 135
List of Figures
Figure 2.1. Sameroff’s biopsychosocial ecological model ... 21 Figure 2.2. Sameroff’s unified theory of development ... 25
List of Appendices
APPENDIX A: Ethical Approval from the University of the Free State ... 368
APPENDIX B: Research Information Letter and Parental Consent Form ... 369
APPENDIX C: Research Information Letter and Adolescent Assent Form ... 374
APPENDIX D: Research Information Letter and Consent Form for Parent Participants ... 378
APPENDIX E: Semi-Structured Interview Schedule – Adolescents ... 381
APPENDIX F: Semi-Structured Interview Schedule – Parents ... 383
APPENDIX G: Confidentiality Agreement for Transcription of Interviews ... 385
APPENDIX H: Information Letter to Kids Arthritis South Africa and Web Advertisement .. 386
APPENDIX I: Information to Medical Specialist ... 388
APPENDIX J: Turnitin Originality Report ... 389
APPENDIX K: Rayne Case Study ... 391
APPENDIX L: Ursula Case Study ... 487
APPENDIX M: Rochelle Case Study ... 549
APPENDIX N: Jessica Case Study ... 597
APPENDIX O: Micaela Case Study ... 674
APPENDIX P: Leigh-Ann Case Study ... 732
Table of Contents
Declaration ... ii
Declaration by Supervisor ... iii
Proof of Language Editing ... iv
Acknowledgements ... v
Abstract ... viii
List of Tables ... x
List of Figures ... x
List of Appendices ... xi
Table of Contents ... xii
List of Abbreviations ... xix
CHAPTER 1: INTRODUCTION ... 1
1.1 Introduction ... 1
1.2 Motivation for the Research Topic ... 1
1.3 The Aim of the Research ... 5
1.4 Concept Clarification ... 6
1.5 Structure of the Thesis ... 10
1.6 Conclusion ... 12
CHAPTER 2: CONCEPTUALISATION ... 12
2.1 Introduction ... 12
2.2 Developmental Psychopathology... 13
2.2.1 Origins and Definition of Developmental Psychopathology ... 13
2.2.2 The Defining Principles of Developmental Psychopathology ... 14
2.2.2.1 The developmental principle. ... 14
2.2.2.3 The systems principle. ... 16
2.2.2.4 The multilevel principle. ... 16
2.2.2.5 The agency principle. ... 17
2.2.2.6 The mutually informative principle. ... 17
2.2.2.7 The longitudinal principle. ... 18
2.2.2.8 Summary of the principles of developmental psychopathology. ... 19
2.2.3 Multiple-Level Analysis: Sameroff’s Unified Theory of Development ... 19
2.2.3.1 Five models... 20
2.2.3.2 Structural formulation of Sameroff’s unified theory of development. ... 21
2.2.4 Critique of Developmental Psychopathology ... 26
2.2.5 Summary of Developmental Psychopathology ... 27
2.3 Developmental Psychopathology and Resilience Theory... 27
2.3.1 Risk as a Concept ... 28
2.3.2 Resilience as a Concept ... 31
2.3.2.1 The history of resilience. ... 31
2.3.2.2 Defining resilience. ... 33
2.3.2.3 Resilience factors and processes... 34
2.3.2.4 Outcomes of resilience processes. ... 35
2.3.3 Adolescent Resilience During Chronic Illness and Pain ... 37
2.3.3.1 Resilience factors. ... 39
2.3.3.2 Resilience processes. ... 42
2.3.3.3 Subjective well-being during chronic illness... 44
2.3.3.4 Resilience during chronic illness within the South African context. ... 47
2.4 Developmental Psychopathology and Resilience Research Methods ... 48
CHAPTER 3: THE ADOLESCENT LIVING WITH JIA – A DEVELOPMENTAL
PSYCHOPATHOLOGY PERSPECTIVE ... 52
3.1 Introduction ... 52
3.2 Adolescent Development ... 52
3.2.1 Defining Adolescence ... 52
3.2.2 Revisiting Storm and Stress ... 54
3.2.3 Normative Adolescent Development ... 55
3.2.3.1 Physical development. ... 56
3.2.3.2 Psychosocial development. ... 58
3.2.4 Summary of Adolescent Development ... 73
3.3 JIA ... 73
3.3.1 Defining JIA ... 74
3.3.2 Classification and Incidence of JIA ... 74
3.3.3 Aetiology and Pathogenesis ... 75
3.3.4 Diagnosis ... 76
3.3.5 Treatment ... 77
3.3.6 Disease States and Remission ... 80
3.3.7 The Physical Challenges Associated with JIA ... 81
3.3.8 The Psychosocial Challenges Experienced by Adolescents with JIA ... 82
3.3.8.1 Developmental tasks amongst individuals with JIA. ... 82
3.3.8.2 Psychological challenges. ... 83
3.3.8.3 Social challenges. ... 88
3.3.9 JIA in South Africa ... 94
3.4 Conclusion ... 95
4.1 Introduction ... 96
4.2 Purpose of the Research ... 96
4.3 Methodology ... 97
4.3.1 Constructivist-Interpretivist Paradigm ... 97
4.3.2 The Characteristics of Qualitative Research ... 98
4.3.3 Qualitative Methodology: A Case Study Approach ... 99
4.3.4 Qualitative Research in Paediatric Chronic Illness and JIA ... 102
4.4 Research Design... 103
4.4.1 Sampling... 103
4.4.1.1 Sampling procedures and participants. ... 103
4.4.1.2 Methods of participant recruitment. ... 105
4.4.1.3 The adolescent participants’ context and illness history. ... 107
4.4.2 Data Collection Method and Procedure ... 111
4.4.3 Data Analysis: Sameroff’s Unified Theory of Development and Braun and Clarke's Six-Phase Process of Thematic Analysis ... 114
4.4.3.1 Phase 1: Familiarisation with the data. ... 118
4.4.3.2 Phase 2: Coding. ... 119
4.4.3.3 Phase 3: Searching for themes. ... 119
4.4.3.4 Phase 4: Reviewing themes. ... 120
4.4.3.5 Phase 5: Defining and naming themes. ... 120
4.4.3.6 Phase 6: Writing up. ... 120
4.5 Rigour and Trustworthiness ... 121
4.5.1 Credibility... 122
4.5.2 Confirmability ... 124
4.5.4 Transferability ... 126
4.5.5 Authenticity ... 126
4.6 Ethical Considerations ... 127
4.6.1 Evaluating Potential Risks and Benefits ... 128
4.6.2 Obtaining Informed Consent and Assent ... 129
4.6.3 Confidentiality and Anonymity ... 131
4.7 Conclusion ... 132
CHAPTER 5: THEMATIC ANALYSIS ... 134
5.1 Introduction ... 134
5.2 Multisystemic Risk Processes ... 135
5.2.1 Limited Social Awareness of JIA... 136
5.2.2 Illness Invalidation and the Dismissal of Pain ... 140
5.2.3 Time Taken to Diagnosis ... 144
5.2.4 Delivering the Diagnosis ... 149
5.2.5 Anxiety-Provoking Medical Experiences ... 153
5.2.6 Dis/Empowering Relationships with Medical Practitioners ... 159
5.3 Multisystemic Resilience Processes ... 166
5.3.1 Passivity Evolves Into a Sense of Agency ... 166
5.3.2. Monitoring Physical and Social Activities ... 171
5.3.3 Monitoring Emotions and Thoughts ... 174
5.4 Adapting Positively to Living with JIA ... 179
5.4.1 Negotiating Identity Formation in the Context of Living with JIA ... 179
5.4.2 Qualitatively Different Opportunities for Becoming Autonomous ... 185
5.4.3 Experiences of Well-Being in Living with JIA ... 190
CHAPTER 6: DISCUSSION OF FINDINGS ... 197
6.1 Introduction ... 197
6.2 Multisystemic Risk Processes ... 197
6.2.1 Limited Social Awareness of JIA... 197
6.2.2 Illness Invalidation and the Dismissal of Pain ... 199
6.2.3 Time Taken to Diagnosis ... 203
6.2.4 A Need for Guidelines when Delivering a Diagnosis ... 206
6.2.5 Dis/Empowering Relationships with Medical Practitioners ... 209
6.2.6 Anxiety-Provoking Medical Experiences ... 213
6.3 Multisystemic Resilience Processes ... 215
6.3.1 Passivity Evolves into a Sense of Personal Agency ... 216
6.3.2 Self-Regulating Physical and Psychological Activity ... 217
6.4 Adapting Positively to JIA ... 220
6.4.1 Negotiating Identity Formation in the Context of Living with JIA ... 221
6.4.2 Qualitatively Different Opportunities for Becoming Autonomous ... 224
6.4.3 Experiences of Well-Being in Living with JIA ... 226
6.5 Reflexive Analysis Regarding the Research Process ... 228
6.6 Conclusion ... 233
CHAPTER 7: CONCLUSION ... 235
7.1 Introduction ... 235
7.2 The Research Aim Revisited ... 235
7.3 Critical Review of this Study ... 236
7.3.1 Strengths of the Research Design... 236
7.3.2 Limitations of the Study ... 239
7.5 Recommendations for Future Research and Practice ... 245
7.6 Conclusion ... 251
References ... 253
List of Abbreviations
APA American Psychological Association DMARD disease-modifying anti-rheumatic drugs
ILAR International League of Associations of Rheumatology JIA juvenile idiopathic arthritis
NGO non-governmental organisation
NREPP National Registry of Evidence-Based Programs and Practices
PE physical education
PEWTER prepare, evaluate, warning, telling, emotional response, and regrouping preparation
PMTS paediatric medical traumatic stress PTSD post-traumatic stress disorder
SPIKES setting, perception, invitation/information, knowledge, empathy, and summarise/strategise
TB tuberculosis
CHAPTER 1: INTRODUCTION
1.1 Introduction
The objective of this chapter is to provide a preview of this study that orients the reader by contextualising and explaining the motivation for the research. As the study is situated within a constructivist-interpretivist paradigm, it is essential to explicate my role in selecting the area of study, as well as the choices made regarding the research design and analysis. Thus, from the outset, it is important to note that this dissertation has value to me on personal, professional, and academic levels. Thereafter, the chapter provides research question and clarifies the central concepts. Finally, the subsequent chapters are introduced, and an outline of their content is provided.
1.2 Motivation for the Research Topic
My interest in the field of chronic illness and inflammatory arthritis began when I was diagnosed with inflammatory arthritis in my forties, after over 20 years of illness. Thus, initially, my interest in this field was a personal one. My professional interest, as an educational psychologist, was stimulated by working with children and adolescents who experienced chronic pain and illness. Some of these referrals included children and adolescents with juvenile idiopathic arthritis (JIA).
JIA is one of the most common chronic inflammatory diseases in childhood and adolescence (Beukelman et al., 2017). This genetic auto-immune disease causes high levels of chronic pain and fatigue, and is characterised by unpredictable flare-ups (Armbrust, Siers et al., 2016). Consequently, JIA is a debilitating disease that may result in mortality due to disease complications and treatments (Davies, Southwood, Kearsley-Fleet, Lunt, & Hyrich, 2015). Of specific relevance to this study, is that JIA has a deleterious effect on the biopsychosocial
functioning of children and adolescents (Unal et al., 2018). It also has no known cure (Giancane et al., 2016).
In my professional capacity, I noticed that there was scant psychosocial support available in South Africa for individuals with JIA and their families in comparison to that available for individuals diagnosed with other diseases that occur in childhood, such as cancer, diabetes, epilepsy, and HIV. It also became apparent that these clients and their families required interventions that were tailored to meet the specific biopsychosocial stressors that arise as a consequence of living with JIA. Certainly, the existing body of literature indicated that JIA places multiple stressors on individuals with the disease and their families (Modica et al., 2016; Saetes, Hynes, McGuire, & Caes, 2017; Turner-Cobb & Cheetham, 2016; Unal et al., 2018). Notwithstanding the serious biological symptoms of chronic pain and chronic fatigue, individuals with JIA also experience high levels of negative affect and a sense of social isolation (Cartwright, Fraser, Edmunds, Wilkinson, & Jacobs, 2014; Moverley, Vinall-Collier, & Helliwell, 2015; Tong, Jones, Craig, & Singh-Grewal, 2012; Unal et al., 2018). Equally important is that JIA has a deleterious effect on family functioning (A. Cox, Ostring, Piper, Munro, & Singh-Grewal, 2014; Chausset et al., 2016; Gómez-Ramírez et al., 2016b; Saetes et al., 2017). However, despite there being extensive literature regarding the inherent psychosocial risks associated with developing JIA, there was scant literature providing recommendations regarding the support of individuals with JIA based on their psychosocial experiences. Thus, when the opportunity arose to pursue my doctoral studies in the field of child and adolescent psychology, my personal and professional interest in the experiences of individuals with JIA translated into a focal point for my academic pursuits.
My reading of the existing body of literature, as well as correspondence with a leading South African paediatric rheumatologist, revealed that JIA is a neglected area of research in South Africa, despite a conservative estimate of 18,700 children in this country being affected by this disease (personal communication, C. Scott, January 15, 2019; Weakley & Scott, 2012). Thus, the field of JIA was deemed to be an appropriate area of research for a doctoral dissertation. Furthermore, I postulated that, given the significant biopsychosocial changes that occur during adolescence, individuals with JIA may be particularly vulnerable during this developmental stage. Indeed, Pinquart and Pfeiffer’s (2015) meta-analysis of 447 quantitative studies found that having a chronic illness may impact negatively on an adolescent’s ability to negotiate developmental tasks successfully. In contrast, other researchers have reported that the presence of resilience factors and processes can promote the successful management of chronic illness and the negotiation of adolescent tasks (Cartwright et al., 2014; Lennon, Psihogios, Murray, Holbein, & Holmbeck, 2016; Livermore, Eleftheriou, & Wedderburn, 2016; McKeever & Kelly, 2015; Saetes et al., 2017; Turner-Cobb & Cheetham, 2016). These conflicting findings suggested that adolescence would be a rich developmental stage during which to explore the processes of risk and resilience in individuals with JIA. A final consideration during topic development was that the increase in the complexity of cognitive functioning during adolescence, as compared to childhood, would be more likely to yield rich data. Therefore, I chose to conduct research on the psychosocial experiences of South African adolescents with JIA.
Minimal South African research has been conducted in the field of JIA and the five published articles which were identified focused on quantitative medical research. This research either investigated the incidence and prevalence of JIA and its subtypes, or delineated current medical treatment (Haffejee, Raga, & Coovadia, 1984; Scott & Brice, 2015; Scott & Webb, 2014;
Weakley, Esser, Pope, & Scott, 2011; Weakley & Scott, 2012). Notably, the South African research indicated that the time to diagnosis in South Africa tends to be longer than that in other countries, as the diagnosis is further complicated by the presence of comorbid illnesses, insufficient resources, and a lack of medical knowledge (Scott & Brice, 2015; Weakley et al., 2011). These factors not only delay diagnosis, but also restrict access to appropriate medical services; this is problematic, as sub-optimal treatment may lead to the increased likelihood of complications (Aoust, Rossi-Semerano, Koné-Paut, & Dusser, 2017) such as joint deformity and blindness (Mosley, 2015).
A literature search produced approximately 70 journal articles discussing the biopsychosocial factors of JIA, most of which assumed a largely pathogenic stance (Campbell Systematic Review, Cochrane Database of Systematic Reviews, EBSCOHost, & National Registry of Evidence-Based Programs and Practices [NREPP] databases, 24 January 2019). It became apparent that few articles focused on the developmental period of adolescence. Indeed, most articles conflated the developmental stages of childhood, adolescence, and even, at times, early adulthood. Moreover, the majority of articles identified risk factors and processes in normative development, neglecting to address resilience factors and processes. None of the articles explored the participants’ understandings of well-being within illness, although some referred to well-being as an outcome. Hence, there is a need for international, and specifically South African, qualitative psychological research that explores both the risk and the resilience factors that impact on adolescent experiences of JIA. More specifically, an exploration of adolescents’ understandings of their adaptive processes and the possibility of well-being within illness is needed.
In summary, qualitative research that explores the psychosocial experiences of South African adolescents with JIA is required. This research may contribute to a deepened
understanding of adolescents' everyday experiences of living with JIA, as well as their management of the resilience resources available to them. Such insights may provide the basis for the development of appropriate, timeous medical and psychosocial interventions in the future.
1.3 The Aim of the Research
This exploratory study aimed to explore and describe the psychosocial experiences of South African adolescents with JIA. A rich description of their experiences and understandings of living with JIA was sought from seven adolescents with JIA and their parents and situated within developmental psychopathology and resilience theory.
Developmental psychopathology was used as the conceptualising model for this study, as it is an integrative framework that can be defined most simply as “the study of behavioural health and adaptation in a developmental context” (Masten, 2006, p. 47). This framework is multisystemic, multidisciplinary, and acknowledges the complexities of both normal and abnormal development (Davis & Suveg, 2014; Marshall, 2013; Masten, 2014). Notably, the interaction between risk and protective factors are conceptualised as causing developmental cascades that are cumulative in nature and that alter the trajectory of development (Masten & Cicchetti, 2010; Rutter & Sroufe, 2000). The developmental psychopathology framework thus accommodates the concept of resilience, which represents the possibility of successful adaptation in the context of adversity to ultimately optimise well-being (Davis & Suveg, 2014; Masten & Tellegen, 2012; Shiner & Masten, 2012). Accordingly, within this framework, JIA can be conceptualised as a risk factor that, given multiple interacting systems, leads to unique, multiple pathways of illness and well-being. Furthermore, the developmental psychopathology framework takes into account that adolescents with JIA may also actively engage in resilience processes which may contribute to their well-being despite the adverse context of chronic illness.
The value of this study lies in its facilitation of a deepened understanding of the psychosocial experiences of South African adolescents with JIA. Areas of risk and resilience, which may provide the foundation for future research in this field, both in South Africa and internationally, have been identified. Furthermore, recommendations which may minimise risk processes and enhance resilience processes within and between multiple systems are made. These recommendations should facilitate the design of developmentally appropriate psychosocial interventions, specific to JIA, which may enhance the resilience processes and well-being of adolescents with JIA.
1.4 Concept Clarification
The key concepts of this study are clarified below.
Adversity: Adversity refers to the conditions that threaten positive adaptation or
normative development. It incorporates a wide range of acute and chronic risk factors which may occur within and between multiple systems (Shiner & Masten, 2012; Wright, Masten, & Narayan, 2013). Examples of adversity in this study would be experiencing chronic childhood illness or living with JIA.
Resilience: Resilience is a process of positive adaptation in the face of adversity. It is the
ability of an individual to endure and recover from adverse conditions that threaten his or her normative development and biopsychosocial well-being (Masten, 2014; Wright et al., 2013). In this study, an example of resilience processes would be an adolescent with JIA who implements coping strategies to optimise his or her emotional regulation and social interactions.
Resilience in medical contexts: Medical resilience involves negotiations between
individuals, families, and institutions in order to meet needs in a meaningful manner, and enhance and sustain well-being (DeMichelis, 2016; Ungar, 2016). Thus, it refers to a process of
transactions that occur within and between multiple systems (interpersonal, institutional, and political). It is important to note that medical resilience is not equated with recovery and that well-being is considered to be relational in nature. In this study, examples of medical resilience would be the processes of receiving an accurate diagnosis, adhering to treatment plans, and experiencing well-being despite chronic illness.
Risk: Risk includes a broad range of factors or conditions that increase the likelihood of
an undesired outcome (Shiner & Masten, 2012). In the current study, an example of risk would include having a genetic predisposition to developing JIA.
Risk Factor: Risk factors include measurable individual or contextual characteristics that
usually give rise to a negative outcome. These characteristics may be proximal (experienced directly by the adolescent) or distal (occurring in the ecological context of the adolescent) (Wright et al., 2013). In this study, examples of risk factors would include contracting a virus or bacterial infection, high levels of stress, or a lack of knowledge of JIA in medical and social systems.
Cumulative risk: Cumulative risk refers to increased levels of risk as a result of the
occurrence of numerous risk factors, each one serving as a trigger for the next (Wright et al., 2013). In this study, examples of cumulative risk are single-parent families, poverty that prevents access to medical care, and the existence of comorbid disorders with JIA.
Protective factors: Protective factors are factors that change responses to adverse
conditions or events in a way that prevents or mitigates possible negative outcomes. These factors can occur in the individual or within the ecology in which the individual is situated (Cousins, Kalapurakkel, Cohen, & Simons, 2015; Wright et al., 2013; Zolkoski & Bullock, 2012). In this study, examples of protective factors include problem-solving skills, access to medical care, and having effective social support systems.
Cumulative protection: Cumulative protection refers to a process where existing
protective factors pave the way for additional protective factors to arise in the person’s life (Wright et al., 2013). As with cumulative risk, cumulative protection is seen to be multiplicative, rather than additive. Examples of cumulative protection in this study might include an adolescent with JIA who has attentive parents, prosocial peers, and access to medical care.
Developmental tasks: Developmental tasks refer to age-based expectations for behaviour
that are specific to the context, culture, and historical period. These expectations change according to the age, context, culture, and historical period of the person as well as new challenges that are faced (Shiner & Masten, 2012). Examples of developmental tasks during adolescence would be forming a coherent identity and becoming autonomous.
Resilience processes: Resilience is not an unchanging characteristic trait, but rather the
interaction of multiple processes. Resilience processes refer to multilevel, dynamic, potentially active processes which may result in positive adaptation to adversity (Cousins et al., 2015; Feinstein et al., 2018; Masten, 2014). Examples of resilience processes in this study would include pain acceptance, pain self-efficacy, and stress regulation.
Subjective well-being: Subjective well-being refers to the degree to which an individual
cognitively or affectively appraises his or her life to be positive and desirable. It is characterised by high levels of positive affect, low levels of negative affect, and high levels of life satisfaction (Diener et al., 2017; Diener, Oishi, & Tay, 2018). In the current study, examples of subjective well-being would include having higher levels of positive affect such as happiness and gratitude; lower levels of negative affect such as sadness and anger; and experiencing satisfaction with aspects such as one’s health status or academic performance.
Disease: The term “disease” refers to a specific abnormal disorder that negatively affects
part or all of the individual’s structure and functioning. It is the objective, biological occurrence of pathology that medical practitioners are trained to identify and manage (Gatchel, 2015; Peteet, 2015; Ventriglio, Torales, & Bhugra, 2017). Thus, in this study, the term “disease” is used when referring to JIA within a medical context.
Illness: Illness is different to disease in that it refers to the individual’s subjective
experience of a disease or condition. It is concerned with the impact of the disease on the patient’s functioning, relationships, and social interactions. The term “illness” incorporates aspects such as psychosocial functioning, emotional distress, physical limitations, and discomfort (Gatchel, 2015; Peteet, 2015; Ventriglio et al., 2017). Therefore, in this study, illness refers to the biopsychosocial experiences of the adolescent participants.
Sign: A sign is any objective evidence of disease. It is a phenomenon that can be detected
by someone other than the individual affected by the disease (Maturo, 2007). In this study, examples of signs of a disease would include swollen joints, a rash, and an elevated temperature.
Symptom: A symptom is any subjective evidence of disease. It refers to a phenomenon
that is experienced by the individual affected by the disease and cannot be observed (Maturo, 2007). In the current study, examples of symptoms would include pain, weakness, fatigue, and headaches.
Paediatric medical traumatic stress (PMTS): PMTS refers to psychological and
physiological reactions of children to pain, serious illness, medical procedures, and emotionally distressing treatment (National Child Traumatic Stress Network, 2003). This concept identifies post-traumatic stress symptoms that do not necessarily qualify for a diagnosis of post-traumatic stress disorder (PTSD). These symptoms hamper medical recovery, impair daily functioning, and
affect treatment compliance (Holley, Wilson, Noel, & Palermo, 2016; Hoysted et al., 2018; Kassam-Adams, 2006; Price, Kassam-Adams, Alderfer, Christofferson, & Kazak, 2016). In this study, examples of symptoms of PMTS include heightened arousal, avoiding reminders of the traumatic experience, re-experiencing the trauma, and continued intrusive and distressing thoughts.
Activity limitations: Activity limitations refer to limitations in mobility or self-care (Dunn
& Andrews, 2015). In this study, examples would include the inability to walk, not being able to brush one’s hair, or not being able to take part in strenuous activities.
Participation restrictions: Participation restrictions refer to difficulty in engaging with
the activities of daily living (Dunn & Andrews, 2015). Examples of participation restrictions would include absenteeism from school and not being able to socialise with peers.
1.5 Structure of the Thesis
This thesis is divided into seven chapters which are outlined below.
Chapter 1 aims to introduce and provide the motivation for the study. It affords a brief explanation of the nature of JIA, its pervasive impact on adolescent health, and the potential disruption it may have on the achievement of developmental tasks during adolescence. Furthermore, the need for resilience research in this field, both internationally and in South Africa, is highlighted. An overview of the developmental psychopathology framework is presented, wherein JIA is positioned as a risk factor, and resilience processes are viewed as pathways to optimise levels of subjective well-being. In addition, the research question addressed in this study is expounded. Finally, the structure of the thesis is outlined.
Chapter 2 serves to delineate the conceptualisation underpinning the study. The overarching conceptual framework of the study is that of developmental psychopathology, as this
provides a multisystemic, developmental understanding of risk factors and resilience processes during adolescence (Cicchetti & Rogosch, 2002). Sameroff’s (2010; 2014) unified theory of development is presented as a means to integrate the multiple levels of analysis. Thereafter, current research regarding risk and resilience processes in the field of adolescent chronic illness and chronic pain is delineated. In addition, subjective well-being is discussed as an outcome of resilience processes. Finally, the chapter presents research regarding resilience in the field of child and adolescent chronic illness in the South African context.
Chapter 3 focuses on understanding normative adolescent development as well as the maladaptive trajectories that may occur as a consequence of developing JIA. Firstly, the term “adolescence” is defined, and a broad overview of the biopsychosocial changes that occur in adolescence is provided. Thereafter, a summary of the aetiology, pathogenesis, diagnosis, and treatment of JIA is outlined. Also, the biopsychosocial challenges of living with JIA and the effect that these challenges may have on the successful negotiation of the developmental tasks of adolescence are described. The latter presents literature in the fields of chronic illness and chronic pain, given the dearth of literature on JIA. The last section provides an overview of South African research in the field of JIA.
Chapter 4 provides an in-depth explanation of the research design and the methodology used in this qualitative study. It includes the details of the participants, the data gathering procedure, and the steps that were engaged in to analyse the data. The participants’ contexts and illness experiences are briefly described in order to contextualise the findings presented in Chapter 5. Moreover, the ethical considerations involved in working with vulnerable human subjects, the ethical approval process, and the collation of data in an ethical manner are delineated. Finally, the trustworthiness of this study is discussed.
Chapter 5 documents the findings obtained in this study. The main themes of multisystemic risk processes, multisystemic resilience processes, and adapting positively to living with JIA are presented and substantiated by providing rich, thick quotations from the participants. Care was taken to provide sufficient contextualisation to support my interpretations of the subjective experiences of the participants.
Chapter 6 interprets the findings from the previous chapter with reference to relevant literature. The chapter concludes with a reflexive analysis of my role as researcher within the research process.
In Chapter 7, the concluding chapter, the research aim of this study is revisited and the strengths and limitations of the study are critically reviewed. Thereafter, the significant contributions of the research are presented, and recommendations for future research and practice are made.
1.6 Conclusion
In this chapter, the motivation for the research topic was presented. In addition, an overview of the research question was provided, the major concepts were clarified, and the layout of the subsequent chapters was provided. In the following chapter, the conceptual framework of this study – developmental psychopathology – and the concepts of risk, resilience, and subjective well-being are discussed.
CHAPTER 2: CONCEPTUALISATION
2.1 Introduction
JIA affects the biopsychosocial functioning of an adolescent; therefore, selecting a research framework that accounts for individual and contextual factors would be most appropriate. Current approaches to development have embraced an integrative, multidisciplinary approach that
emphasises the multisystemic, transactional processes involved (Beauchaine, Constantino, & Hayden, 2018; Hadfield & Ungar, 2018; Masten, 2018; Masten & Barnes, 2018). Furthermore, recent trends direct attention towards resilience processes that mitigate developmental risk processes, enable prevention and intervention, and enhance subjective well-being (Hadfield & Ungar, 2018; Masten & Barnes, 2018). Thus, developmental psychopathology, which is situated within the relational developmental systems meta-theory (Marshall, 2013), provides an appropriate theoretical approach to explore the complex developmental processes involved in the psychosocial experiences of adolescents with JIA.
In this chapter, the overarching framework of relational developmental systems theory will be presented as the grounding meta-theory for developmental psychopathology. The developmental psychopathology framework will then be explored using Sameroff’s (2010, 2014) unified theory of development to explicate the complexity of multisystemic, transactional developmental processes. Thereafter, risk, resilience, and subjective well-being theory is presented with reference to JIA. Finally, research methods used in the fields of developmental psychopathology and resilience are discussed.
2.2 Developmental Psychopathology
2.2.1 Origins and Definition of Developmental Psychopathology
Developmental Psychopathology is a theoretical model that falls under the meta-theory of relational developmental systems theory (Marshall, 2013; Masten, 2006; M. Cox, Mills-Koonce, Propper, & Gariépy, 2010). This meta-theory rejects the reductionist dualism of early developmental theories, and is holistic, integrative, and multidisciplinary in approach (Lerner, Johnson, & Buckingham, 2015). It is concerned with the processes involved in human development at all levels of ecological organisation, from biological to cultural and historical
levels (Bergman, 2015; Lerner et al., 2015; Overton & Lerner, 2014). The basic units of analysis are the mutually influential transactions, also known as coactions, which regulate development at multiple levels (Lerner et al., 2015; Overton & Lerner, 2014).
Situated within relational developmental systems theory is the integrative framework of developmental psychopathology, which arose partly in response to the limitations of psychiatry and developmental psychology in the 1970s (Beauchaine et al., 2018; Rutter & Sroufe, 2000). During this period, developmental psychology was focused on universals and tended to ignore individual differences, but as Rutter (2013b) notes, development is complex and cannot be explained by one mechanism. Although psychiatry concentrated on the individual, it was overly concerned with narrow diagnostic criteria and conceptualisations (Rutter, 2013a). The fusion of the disciplines of psychopathology and development was fuelled by studies in several areas that generated a solid empirical base regarding fundamental developmental processes in psychological and biological systems (Masten, 2006; Rutter & Sroufe, 2000; Toth & Cicchetti, 2010). Over the past 40 years, developmental psychopathology has evolved into a broad, integrative framework (Eme, 2017; Masten, 2016, 2018; Toth & Cicchetti, 2010). The core principles of developmental psychopathology as outlined by Masten (2006) will be explored in the following section.
2.2.2 The Defining Principles of Developmental Psychopathology
2.2.2.1 The developmental principle.
Developmental psychopathology views individual development as relational, transactional, reciprocal, and consisting of multiple levels within both the individual and the context (Marshall, 2013; Masten, 2016; M. Cox et al., 2010). As a result of the complexity of multilevel coactions that take place, it is inevitable that multiple pathways of development to health and to illness are created (Eme, 2017; Hinshaw, 2013). These diverse pathways are encapsulated
by the terms “equifinality” and “multifinality” (Sroufe, 2013). Equifinality denotes that different pathways can lead to the same outcome, whereas multifinality indicates that the same starting point can result in different outcomes (Sroufe, 2013). Thus, an individual who begins life with normal development may be pushed into abnormal development because of multiple factors, one of which might be illness (Masten, 2006). Furthermore, development moves in the direction of increasing adaptability with the intent of attaining cultural goals, reproducing, or surviving (Masten, 2006). This development occurs in an orderly manner with predictable patterns of change which establish coherence (Cicchetti & Rogosch, 2002; Masten, 2006; Rutter & Sroufe, 2000). Masten (2006) observes that changes in the individual, the environment, or in the interaction between these can result in intense transformations that lead to times of growth, vulnerability, or opportunity. Adolescence is such a time (Cicchetti, 2006; Masten & Barnes, 2018; Shiner, Allen, & Masten, 2017; Shulman & Scharf, 2018). Although there is considerable individual variation during adolescence, the overall pattern of development is normative.
2.2.2.2 The normative principle.
An understanding of normative development is required to identify when and how development diverges and becomes abnormal (Cicchetti, 2006). Divergence from the norm occurs on a continuum, with some individuals demonstrating maladaptive behaviours and others not (Cichetti, 2006). However, Masten (2006) cautions that normal development is a social expectation of what is appropriate behaviour for an individual of a specific age and gender. Thus, while expectations may differ according to the historical period, culture, and context, some behaviours remain universal (Luthar, 2015). The term “developmental tasks” is used to encapsulate these social expectations which are benchmarks for positive adaptation and normative development (Shiner et al., 2017; Shiner & Masten, 2012). Developmental tasks present in a
variety of domains and they change in nature as individuals age and experience new challenges. Thus, a task that is important in one stage has less relevance in another (Shiner & Masten, 2012). Moreover, the achievement of developmental tasks lays the foundation for the successful negotiation of tasks in future developmental stages (Masten & Cicchetti, 2010). Therefore, failure or success in achieving an important developmental task during adolescence can impact on future well-being. Furthermore, the multiple interactive systems that make up the individual and the context influence normative development.
2.2.2.3 The systems principle.
Relational developmental systems theory accounts for systemic processes that occur within the individual, as well as between the individual and the environment (Marshall, 2013). Each system derives meaning from the entire context, and no system is given priority over another (Marshall, 2013; Masten, 2016). However, M. Cox et al. (2010) point out that systems change at different rates and certain systems may become deterministic at certain times of development – the onset of puberty being an example of this. Furthermore, systems are characterised by the ability to self-regulate and self-organise their functioning from the molecular to the societal level (Marshall, 2013; Masten & Monn, 2015). Therefore, human development occurs as a result of continuous adaptation to the interaction of systems both within the individual and between the individual and the environmental systems (Masten & Monn, 2015). The presence of multiple systems requires a multilevel analysis to fully comprehend the complexity involved.
2.2.2.4 The multilevel principle.
Developmental psychopathology researches a phenomenon through a multilevel analysis that examines the reciprocal nature of the coactions within and across the levels (Marshall, 2013). Cichetti (2006) notes that this complexity necessitates that research becomes a multidisciplinary
project, with researchers adjusting their methods and focus depending on the phenomenon or level in question. A phenomenon can only be understood when all levels have been investigated and integrated, as each level constrains and informs the other levels (Cicchetti, 2006; Marshall, 2013; Masten, 2016). Thus, Cichetti (2006) argues that working in isolation, rather than in a multidisciplinary manner, tends to produce theories that are reductionist and incorrect, as crucial information from other disciplines is not included. All the systems which constitute the individual, as well as the systems in which the individual is embedded, need to be analysed (Sameroff, 2014). An individual’s sense of agency plays a significant role in determining the influence of multilevel systems on developmental trajectories.
2.2.2.5 The agency principle.
Individuals are active agents in determining their own development as they make choices about their lives which in turn affect future experiences and choices (Masten, 2006). Personal agency is a central component of resilience as it enables positive transitions and changes in negative trajectories (Masten & Barnes, 2018). Bandura (2006) contends that although individual agency increases during development as a result of neurological and physiological changes, it is socially embedded and does not occur in isolation (Bandura, 2006). Consequently, individual agency is also promoted through psychosocial and learning experiences and can be a critical factor in determining normal or abnormal development (Masten, 2006).
2.2.2.6 The mutually informative principle.
Developmental psychopathology models stress that abnormal behaviour deviates from normal developmental pathways; therefore, unless normal development is understood, abnormal development will be decontextualised (Hinshaw, 2013). In turn, abnormal development sheds light on normal development (Cichetti, 2006). Consequently, Toth and Cichetti (2010) assert that
individuals who are at risk for pathology, but who do not develop pathology, are as important for research as those individuals who do develop pathology. Accordingly, investigating the continuities and discontinuities between normal and abnormal behaviour can enable an understanding of development across a range of variations (Cichetti, 2006). Therefore, according to Masten (2006), comprehending the processes of continuity and discontinuity is crucial when investigating individuals who are at risk. The processes of continuity and discontinuity are best studied through a lifespan approach to development.
2.2.2.7 The longitudinal principle.
Developmental psychopathology embraces a lifespan approach which aims to understand the developmental transformations and reorganisations that take place over time (Toth & Cichetti, 2010). Masten (2006) emphasises that longitudinal studies are required to ascertain the pathways of development that occur from multiple interactions within and between organisms situated in larger systems. Furthermore, M. Cox et al. (2010) assert that a lifespan and intergenerational approach is required to understand developmental cascades fully. Essentially, developmental cascades are adaptive or maladaptive developmental pathways that affect functioning at higher system levels or competency in later periods of development (Masten & Monn, 2015; Shiner & Masten, 2012). Developmental cascades are also present at the community or social level, and they can permeate multiple generations (Masten & Cicchetti, 2010). These cascades can run downwards, whereby experience affects genetic expression, or upwards, whereby problematic systems affect personal interactions (Masten & Cicchetti, 2010). According to M. Cox et al. (2010), understanding developmental cascades raises the possibility of preventing or intervening in negative cascades and creating or improving positive cascades.
2.2.2.8 Summary of the principles of developmental psychopathology.
Developmental psychopathology is a useful model to explore the experiences of adolescents with JIA as it emphasises development across the lifespan. Moreover, an understanding of normative development is needed to ascertain whether these adolescents’ developmental trajectories deviate from the norm and if the developmental tasks are being negotiated successfully. The mutually informative interplay between adaptive and maladaptive trajectories is considered critical when investigating individuals in high-risk situations (Masten, 2006) such as chronic illness. In addition, developmental psychopathology views adolescents as being active agents in their own development (Masten et al., 2004). Personal agency can foster resilience in chronic illness, as positive choices can change negative trajectories in risk situations (Ferguson & Walker, 2014). Furthermore, developmental concepts such as equifinality and multifinality may be useful in explaining differences and commonalities across adolescents with the same disease. The focus on mutually interactive systems and multilevel analysis will facilitate a broader exploration that may more fully account for their experiences. Finally, risk and resilience processes that may enable optimised development and well-being in the face of chronic illness can be identified. However, the developmental psychopathology model is complex and requires multilevel analysis. Integrating the researcher’s understanding of the psychological and social experiences of adolescents with JIA requires a framework to structure the analysis. The following section delineates Sameroff’s multilevel analysis.
2.2.3 Multiple-Level Analysis: Sameroff’s Unified Theory of Development
Sameroff (2010; 2014) proposed the unified theory of development as a means to integrate multiple levels of analysis. His model incorporates the principles of developmental psychopathology into a cohesive framework that scaffolds the exploration and understanding of
human development within the ecological context. Sameroff’s model will be used to frame the exploration of psychosocial experiences within this study.
2.2.3.1 Five models.
Initially, Sameroff (2010) posited that four models were needed to understand human development, but later a fifth model was incorporated (Sameroff, 2014). The five models he postulated were a model of personal change, a contextual model, a regulation model, a representational model, and an evolutionary model (Sameroff, 2014). A model of personal change is required to understand the biological and psychological changes that occur during growth and development. As the individual is situated within an environment, the contextual model enables an understanding of the multiple sources of environmental experience that facilitate or hinder individual development. This complexity is integrated through the regulation model, which integrates the dynamic systems of the individual, the context, and the relations between them. Furthermore, the representational model accounts for how individual experiences are encoded at abstract levels that create structures to interpret new experiences and develop a sense of self. Finally, the evolutionary model explains the codevelopment of genes and psychological and social functioning (Sameroff, 2014). Sameroff (2010, 2014) integrates these five models into a comprehensive unified theory of development that takes into account most of the known factors that influence life trajectories. This theory consists of a structural formulation and a process formulation. The structural formulation, which Sameroff (2014) terms the biopsychosocial ecological model, integrates the personal and contextual models of human development.
2.2.3.2 Structural formulation of Sameroff’s unified theory of development.
2.2.3.2.1 The biopsychological self-system.
The biological and psychological domains comprise what Sameroff refers to as the
biopsychological self-system. This self-regulating system interacts with other self-regulating
systems in the environment. The biological system explains how behaviour can have biological roots as a result of variables such as physiology, genetics, and neurotransmitter and hormonal activity (Ensink, Biberdzic, Normandin, & Clarkin, 2015; Marshall, 2013; Masten, Herbers, Cutuli, & Lafavor, 2018). Biological changes cascade into behavioural changes in response to stressors in the environment, which may result in the potential for negative health outcomes in adverse situations and positive health outcomes in supportive environments (Ellis & Boyce, 2008).
Figure 2.1. Sameroff’s biopsychosocial ecological model Source: Sameroff, 2010, p. 18
Similarly, the psychological system is not isolated but is an embedded system that develops in concert with the biological and contextual systems (M. Cox et al., 2010). Bronfenbrenner and
Morris (2006) observe that the psychological domain is comprised of coactions between the cognitive, emotional, and behavioural systems. Sameroff refers to the combination of the
biopsychological self-system and the social context as the biopsychosocial ecological model (see
Figure 2.1 above). This model will be described in the following section. 2.2.3.2.2 The biopsychosocial ecological model.
Sameroff’s (2014) biopsychosocial ecological model situates individual development within multiple contexts that engage in bi-directional transactions. Sameroff (2010) incorporated Bronfenbrenner’s (1979) ecological model into his unified theory to fully explicate the multiple social contexts that impact on individual development. The ecological model will be outlined below. Thereafter, Sameroff’s explanation of the process of development will be presented.
The ecological model of Urie Bronfenbrenner is often integrated into theories of developmental psychopathology (Cicchetti, 2006; Masten & Monn, 2015; Sameroff, 2010). Bronfenbrenner’s theory evolved through three phases, between 1973 and 2006, from an ecological to a bioecological theory (Rosa & Tudge, 2013). However, it is his earlier ecological model that is incorporated into Sameroff’s work. Initially, Bronfenbrenner (1979) viewed development as occurring because of reciprocal interactions between the individual and the multiple systems of the individual’s context. Four nested tiers were conceptualised – namely, the microsystem, the mesosystem, the exosystem, and the macrosystem (Tudge, Mokrova, Hatfield, & Karnik, 2009). The proximal environments, such as the microsystem, were thought to directly influence the individual, whereas distal environments, such as the macrosystem, affect the individual indirectly (Bronfenbrenner, 1979).
The microsystem is the most proximal situation in which the individual interacts face to face with other individuals (Bronfenbrenner, 1979). These settings have physical characteristics
and include environments such as the family, the school, and peers (Bronfenbrenner, 1994). In this system, the individual engages in activities, interpersonal roles, and relations (Rosa & Tudge, 2013). Links between two or more microsystems create a mesosystem, which is essentially a system of microsystems (Bronfenbrenner, 1994). For example, the interaction between the family and the school may take place in the mesosystem. However, the exosystem differs from the micro- and mesosystems in that one of the settings does not include the individual, but rather indirectly affects the individual (Bronfenbrenner, 1979). An example of this would be how the parental workplace affects the parent and, in turn, may affect the child. Finally, the macrosystem is concerned with the institutional systems that exist within a culture or subculture (Bronfenbrenner, 1994). These include economic, political, social, educational, and legal systems that affect the opportunities, hazards, and life course options of the individual (Bronfenbrenner, 1994). Sameroff’s process formulation explicates the processes through which an individual situated within multiple contexts develops.
2.2.3.3 Process formulation of Sameroff’s unified theory of development.
The process formulation encapsulates how the individual changes over time as a result of regulatory and representational processes. Sameroff (2014) posits that developmental periods occur because of changes in the individual or in the environment that result in developmental shifts. Such changes in organisation are indicated by upward and downward arrows in Figure 2.2 (page 26). According to Sameroff (2014), these can be simple changes such as learning to walk, or more complicated ones, such as the advent of adolescence. These processes do not lead to a uniform and consistent increase in development (Sameroff, 2010). Rather, development is characterised by periods of stability interspersed with periods of change that lead to a new
equilibrium. Periods of change can be generated by or within the individual, such as puberty, or from the environment, such as transitioning to secondary school (Sameroff, 2014).
2.2.3.3.1 Regulatory processes.
Sameroff’s (2010) unified theory of development emphasises that regulation is a dynamic process which occurs within multiple systems. Individuals develop psychological self-regulation because of the regulation of others, such as parents and teachers, in their environments (Sameroff, 2010). Initially, infants are regulated by others, but as the individual becomes more independent, self-regulation increases. The individual’s development is the product of continuous coactions between the individual and the objects or others in the environment, which can alter developmental trajectories for better or worse. These continuous coactions are an important concept in adolescent chronic illness, given that the individual’s illness is managed initially by the adults in the environment. However, self-regulation must occur as the adolescent transitions into adulthood (Lansing & Berg, 2014). Furthermore, adolescents’ perceptions of their experiences influence their development.
2.2.3.3.2 Representational processes.
Representations are encoded experiences or internal summaries of the external world (Sameroff, 2010). These representations include cognitive, social, and cultural representations. They fulfil an adaptive function by organising perceptions of the world into a set of expectations (Sameroff, 2014). Representations are not an accurate internalisation of what they represent, as certain characteristics are included, while others are not. For example, children tend to internalise positive characteristics in their representations of their parents (Sameroff, 2014). Understanding representational processes may provide more insight into the experiences of, and meanings attributed to, these processes by adolescents with JIA.
2.2.3.4 Summary of multilevel analysis.
Multilevel analysis is a complex form of research that incorporates coactions within the individual, within the context, and between the individual and the context (Sameroff, 2014). Sameroff’s (2010; 2014) unified theory of human development provides a coherent integration of these multiple levels, which includes the internal representations of the individual. Such an analysis is of particular relevance when exploring the experiences of chronically ill adolescents, given the complex interaction of risk and promotive factors. However, such complex research is not without its difficulties.
Figure 2.2. Sameroff’s unified theory of development Source: Sameroff, 2010, p. 19
2.2.4 Critique of Developmental Psychopathology
Using a developmental psychopathology perspective enables the articulation of the complexities of human development. However, the approach has some inherent difficulties, particularly with the use of the multilevel perspective and longitudinal studies.
Engaging in multilevel analysis presents certain challenges. Firstly, given the interdisciplinary nature of multilevel research, communication channels between disciplines need to be established to facilitate knowledge transference (Cicchetti, 2006; Masten, 2016). Secondly, given the complex nature of development, research designs and strategies need to be developed to cope with this complexity (Marshall, 2013; Masten, 2016). Sameroff (2014) notes that it is not possible for one study to analyse all the levels; rather, the developmental psychopathology framework allows for multiple studies from multiple disciplines to be integrated at a later stage. Given that this study is restricted to only one researcher, communication between disciplines will not be a concern. Furthermore, by situating the research within a developmental psychopathology framework, the researcher has allowed for the findings to be incorporated into future studies.
While longitudinal studies are clearly needed to understand the interactions between systems, as well as the adaptive and maladaptive developmental cascades, longitudinal research is difficult to implement (Cichetti & Curtis, 2007). Such research requires significant funding as well as the investment of the participants’ time (M. Cox et al., 2010). Furthermore, data quality and subject retention, as well as establishing a causal link by using control groups, are all issues that need to be overcome in longitudinal studies (M. Cox et al., 2010). Given the scope and time constraints of this study, longitudinal research was not feasible. Rather, this study involves retrospective longitudinal and cross-sectional research. Retrospective longitudinal research involves the participants’ recollections and can link early factors with later consequences.
Vernberg and Dill (2003) warn that the accuracy of these retrospective reports can be questionable; however, they also note that the triangulation of sources of data, as well as theoretical triangulation, can rectify this issue. In this study, the use of multiple interviews per case aims to improve the accuracy of the retrospective research. Furthermore, cross-sectional studies are needed to provide a basis for longitudinal studies (Masten & Tellegen, 2012; Vernberg & Dill, 2003). As this research is exploratory in nature, it would be premature to conduct prospective longitudinal studies; nonetheless, this study may inform such future research.
Although developmental psychopathology has its limitations, this study has addressed them through the use of multiple data sources, as well as cross-sectional and retrospective longitudinal research. Furthermore, by using the developmental psychopathology approach and Sameroff’s multilevel analysis, this study can be incorporated into future analyses.
2.2.5 Summary of Developmental Psychopathology
Developmental psychopathology provides a model for the complex processes that occur both within and between the systems involved in human development. Such complexity is challenging to research and requires multidisciplinary interaction, varied research designs, and both cross-sectional and longitudinal studies. Sameroff’s (2010; 2014) unified theory of development provides a framework that guides multilevel analysis and that enables the integration of many smaller studies. Despite the seemingly negative orientation implied by the name, developmental psychopathology embraces the concept of resilience, which is thought to play a crucial role in development. The concept of resilience will be explored in the following section.
2.3 Developmental Psychopathology and Resilience Theory
The history of research in the field of resilience is closely associated with that of developmental psychopathology, and resilience has been incorporated into the broader framework
