Coping after acquired brain injury : road to adaptation Citation for published version (APA): Wolters Gregório, G. H. T. (2012). Coping after acquired brain injury : road to adaptation. [Doctoral Thesis, Maastricht University]. NeuroPsych Publishers. https://doi.org/10.26481/dis.20121221gw Document status and date: Published: 01/01/2012 DOI: 10.26481/dis.20121221gw Document Version: Publisher's PDF, also known as Version of record Please check the document version of this publication: • A submitted manuscript is the version of the article upon submission and before peer-review. There can be important differences between the submitted version and the official published version of record. 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Soete, volgens het besluit van het college van Decanen, in het openbaar te verdedigen op vrijdag 21 december 2012 om 16:00 uur door Gisela Hendrika Theresia Wolters Gregório Geboren op 27 januari 1985 te Roermond Promotores Prof. dr. C.M. van Heugten Prof. dr. F.R.J. Verhey Copromotor Dr. S.Z. Stapert Beoordelingscommissie Prof. dr. R.W.H.M. Ponds (voorzitter) Dr. D. In de Braek Prof. dr. M.L. Peters Prof. dr. J.B. Prins (UMC St. Radboud, Nijmegen) Dr. G. Ribbers (Rijndam revalidatiecentrum & Erasmus MC, Rotterdam) The research described in this thesis was performed at the School for Mental Health and Neuroscience, Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands; and Monash-Epworth Rehabilitation Research Centre, Epworth Hospital, Melbourne, Australia. The studies were carried out in collaboration with Rehabilitation Centre Blixembosch, Eindhoven; de Hoogstraat, Utrecht; Altrecht Vesalius, Den Dolder; GGZ Oost Brabant, Huize Padua; BAVO Europoort, Rotterdam; and Pro Persona, Wolfheze. Financial support by the Dutch Heart Foundation for the publication of this thesis is gratefully acknowl- edged. Furthermore, financial support for the publication of this thesis was kindly provided by Stichting Contusio Cerebri Fonds, Lundbeck B.V., and Novartis Pharma B.V. CONTENTS Chapter 1 General Introduction 07 Chapter 2 Assessments of coping with acquired brain injury: A 13 systematic review of instrument conceptualization, feasibility, and psychometric properties. Chapter 3 Coping following acquired brain injury: Predictors and 31 correlates. Chapter 4 Coping and executive functioning in patients with 45 neuropsychiatric symptoms due to acquired brain injury. Chapter 5 Changes from pre- to post-injury coping styles in the first 59 three years after traumatic brain injury and the effects on psychosocial and emotional functioning and quality of life. Chapter 6 Coping styles in relation to cognitive rehabilitation and 75 quality of life after brain injury. Chapter 7 Coping styles within the family system in the chronic 89 phase following acquired brain injury: its relation to families’ and patients’ functioning. Chapter 8 Changes in the coping styles of spouses and the influence 103 of these changes on their psychosocial functioning the first year after a patient's stroke. Chapter 9 General Discussion 117 References 131 Summary 143 Samenvatting 149 List of abbreviations 155 Dankwoord 157 Curriculum Vitae 161 Publications 163 CHAPTER 1 General Introduction 7 COPING AFTER ACQUIRED BRAIN INJURY Acquired brain injury (ABI) Acquired brain injury (ABI) includes any injury to the brain occurring during one’s lifetime. The two most common forms of ABI are strokes in older people and trau- matic brain injuries (TBI) in younger people. ABI is considered a chronic illness and can lead to diverse, long-lasting consequences in several areas of functioning. The consequences of such illnesses can be described in terms of the International Classification of Functioning, Disability, and Health (ICF).1 ABI may influence all three components of the ICF model: that is, brain functions or structures (e.g., memory), activities (e.g., remembering appointments), and participation level (e.g., meeting with friends). Environmental factors (e.g., social support) have been found to influence psychosocial and emotional outcomes. Additionally, personal factors (e.g., personality) have been suggested to mediate outcomes, although no specific personal factors have yet been included in the model. Insufficient adaptation to the consequences of ABI is an important and under- estimated problem. Unfortunately, it is not yet understood why some people make good recoveries or adjustments (e.g., returning to their social roles and to work, reporting good quality of life) while others suffer from lasting detrimental changes in their everyday lives. This phenomenon cannot be explained only by injury-related factors, such as injury severity; there are large individual differences in emotional and psychosocial functioning between patients with similar injuries. Brain injury and the resulting impairments cannot be reversed when neurological recovery is no longer possible. Accordingly, there is a growing interest in identifying which factors determine whether patients will show resiliency following the consequences of ABI. Furthermore, the importance of identifying factors that predict patient improvement from natural recovery versus treatment programs has been recognised. Factors that may be considered are awareness, motivation, availability of a social network, and coping. This thesis focuses on ‘coping’, which is often mentioned in the litera- ture as a promising factor for predicting outcomes after ABI, although it has scarce- ly been investigated. The importance of the concept of coping after ABI Coping is a general concept and is difficult to define. In the literature, there is no consensus on a single definition; however, we all seem to know what is meant by the term. In general, people tend to define coping as managing one’s problems. Because we encounter problems on a daily basis, we regularly rely on our coping repertoire. Stressful situations can occur at home (e.g., noisy neighbours), at work 8 CHAPTER 1 (e.g., an argument with one’s boss), and in virtually any other situation. Folkman and Lazarus are pioneers in the field of coping and have defined coping as ‘the person’s cognitive and behavioural efforts to manage (reduce, minimise, master, or tolerate) the internal and external demands of the person-environment transaction that is appraised as taxing or exceeding the person’s resources’.2(p572) They suggested that although some situations are considered more stressful than others, no objectively stressful situations can be identified. That is, a situation is stressful when a person appraises it as stressful. In these situations, coping strategies are intended to have a stress-reducing effect. People rely on personal (e.g., belief or traits), environmental (e.g., social support), and situational resources when they encounter potentially stressful situations. Several coping styles are iden- tified in the literature. Problem-focused and productive coping styles, for instance, are actively focused on tackling the problem, attempting to search for different solu- tions. Emotion-focused, or non-productive, coping styles are not aimed at solving the problem but rather at regulating the emotional reaction that the problem elicits. They include, among others, avoidance and passive reactions. Examples of coping responses are provided hereafter. To our knowledge, pre- paring for a doctoral dissertation defence is considered stressful for many Ph.D. students. Ph.D. students may, however, each cope with such a situation quite dif- ferently. Some persons may actively tackle the situation directly, studying and pre- paring diligently. They may have reassuring thoughts that everything will work out, or they may look for emotional or social support in dealing with the stressor. Others may avoid the situation, for instance, by watching television or going out instead of preparing, or they may worry about their performance. Of course, there are per- sons who do not consider a defence to be stressful and do not employ coping strategies. Researchers have made several modifications to apply the model of Lazarus and Folkman to patients with TBI.3-5 Godfrey et al.5 acknowledge that individuals with TBI may experience additional stressors that are not experienced by persons without TBI. Cognitive impairments, for instance, may limit the accomplishment of pre-injury goals and values (e.g., partnership, employment). Moore et al.4 underline the influences of cognitive beliefs concerning controllability and self-efficacy on the selection of coping styles. Additionally, Kendall et al.3 recognise the important roles of neurological impairment and cognitive dysfunction in outcomes and coping as well as the influence of pre-injury functioning. All coping models suggest that cop- ing largely mediates the influences of the symptoms on the final outcome. These models are designed to explain outcomes in patients with ABI, but they may also be used to describe the functioning of family members, whose lives also change dramatically after the injury. Changes often occur in roles (e.g., from part- ner to caregiver), future plans, and responsibilities. Family members may report 9
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