Living a good life with arthritis: managing personal goals to improve psychological health

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(1)pleted her Ph.D. at the Department of Psychology, Health and Technology at the University of Twente, The Netherlands. Her Ph.D. thesis focuses on the role of goal management for the psychological health of people with arthritis. The thesis describes the relationship between goal management and psychological adaptation to arthritis and the development and evaluation of a goal management programme for people with arthritis and mild depressive symptoms.. LIVING A GOOD LIFE WITH ARTHRITIS MANAGING PERSONAL GOALS TO IMPROVE PSYCHOLOGICAL HEALTH. Rosa (Roos) Ymkje Arends holds a Master of Science in Psychology and com-. Roos Y. Arends. Concept_Cover_Roos-Arends2.indd 1. LIVING A GOOD LIFE WITH ARTHRITIS MANAGING PERSONAL GOALS TO IMPROVE PSYCHOLOGICAL HEALTH. Roos Y. Arends. 29-08-16 13:53.

(2) LIVING A GOOD LIFE WITH ARTHRITIS Managing personal goals to improve psychological health. PROEFSCHRIFT_ROOS_ARENDS_def.indd 1. 30-08-16 10:05.

(3) Thesis, University of Twente, 2016 ISBN: 978-94-91602-69-6 © R.Y. Arends, 2016 Cover design: Sinds 1961 Grafisch Ontwerp, Ede (www.sinds1961.nl ) Printed by: Printservice Ede, Ede, The Netherlands The studies presented in this thesis were financially supported by Stichting Reumaonderzoek Twente and the Institute of Behavioural Research of the University of Twente. The printing of this thesis was financially supported by Sanofi Genzyme, NHL Hogeschool, and Essenburgh Training & Consultancy.. PROEFSCHRIFT_ROOS_ARENDS_def.indd 2. 30-08-16 10:05.

(4) LIVING A GOOD LIFE WITH ARTHRITIS Managing personal goals to improve psychological health. PROEFSCHRIFT ter verkrijging van de graad van doctor aan de Universiteit Twente, op gezag van de rector magnificus, prof. dr. H. Brinksma, volgens besluit van het College voor Promoties in het openbaar te verdedigen op donderdag 6 oktober 2016 om 16.45 uur door Rosa Ymkje Arends geboren 24 oktober 1984 te Kollumerland en Nieuwkruisland. PROEFSCHRIFT_ROOS_ARENDS_def.indd 3. 30-08-16 10:05.

(5) Dit proefschrift is goedgekeurd door: Prof.dr. M.A.F.J. van de Laar, promotor en Dr. C. Bode en Dr. E. Taal, copromotoren. Samenstelling promotiecommissie Prof. dr. M.A.F.J. van de Laar. Universiteit Twente,. Medisch Spectrum Twente. Copromotoren. Dr. C. Bode. Universiteit Twente. Dr. E. Taal. Universiteit Twente. Commissie. Prof. dr. R. Geenen. Universiteit Utrecht. Dr. M.S.E. van Hout. Medisch Spectrum Twente. Prof. dr. A.V. Ranchor. Rijksuniversiteit Groningen. Prof. dr. P.L.C.M. van Riel. Radboud Universitair Medisch Centrum. Prof. dr. R. Sanderman. Universiteit Twente,. Rijksuniversiteit Groningen. Prof. dr. G.J. Westerhof. Universiteit Twente. Promotor. PROEFSCHRIFT_ROOS_ARENDS_def.indd 4. 30-08-16 10:05.

(6) Contents. 1. General introduction. Part I. The relationship between goal management and psychological adaptation. 7. 27. to arthritis 2. The role of goal management for successful adaptation to arthritis. 29. 3. The longitudinal relationship between patterns of goal management and. 53. psychological health in people with arthritis: The need for adaptive flexibility 4. Exploring preferences for domain-specific goal management in patients with. 79. polyarthritis: What to do when an important goal becomes threatened?. Part II . The effect of a goal management programme on the psychological health of. 103. people with arthritis and mild depressive symptoms 5. A goal management intervention for polyarthritis patients: Rationale and . 105. design of a randomized controlled trial 6. A goal management intervention for patients with polyarthritis and mild . 135. depressive symptoms: A quasi-experimental study 7. A mixed-methods process evaluation of a goal management intervention . 157. for patients with polyarthritis 8. Summary and discussion. 187. Dutch summary (Nederlandse samenvatting). 213. Acknowledgements (Dankwoord). 219. About the Author. 225. List of publications. 227. PROEFSCHRIFT_ROOS_ARENDS_def.indd 5. 30-08-16 10:05.

(7) PROEFSCHRIFT_ROOS_ARENDS_def.indd 6. 30-08-16 10:05.

(8) 1. General introduction. PROEFSCHRIFT_ROOS_ARENDS_def.indd 7. 30-08-16 10:05.


(10) general introduction. Introduction A few years ago, Jeannette was diagnosed with rheumatoid arthritis. After some difficult years, the inflammation finally went into remission due to proper medical treatment. During this rough period, she abandoned her job as a secretary at an estate agency. Once the arthritis went into medical remission, Jeannette’s energy finally returned, but not to her former level. Since the beginning of her illness, Jeanette has worried about her husband Jan and their two adolescent daughters. When the oldest daughter moved out to live with her boyfriend, Jeannette could not resist calling her several times a day, checking to ensure that she was all right or in need of help or advice. Jeannette’s controlling behaviour was increasingly causing tension in the family. For years, Jeannette and Jan had been playing tennis with friends every week and enjoying coffee afterwards. Unfortunately, they had to more often cancel this engagement due to Jeannette’s rheumatic disease. Jeannette became more unhappy after leaving her job, and with the loss of this social activity and contact, she felt as if she were losing a grip on her life and didn’t know how to stop it. One day while running errands, Jeannette accidentally met her old tennis friends. During the conversation that followed, she realised that they could plan less intensive activities together such as taking a walk or visiting a museum. The friends responded with enthusiasm to her suggestion and they immediately set a date for the following week. Back home, Jeannette browsed the internet searching for suitable activities and by accident visited the website of the town’s historical windmill. Seeing a call for new volunteers for their adjacent shop, she at first hesitated – It might be too hard with her arthritis? – but then contacted them and made an appointment. A few weeks later, she now feels completely at home in the friendly group of volunteers at the mill’s shop. Although being the youngest volunteer, she enjoys the new social contacts and the chance she has to contribute. The atmosphere at home has significantly improved as Jeannette’s need to control her family members has diminished. She has less time to spend worrying and feels less need to track her husband and daughters all day. In addition, she has her own stories to tell after a day at the shop. Her eldest daughter sometimes even calls her to chat when she has not heard from Jeannette for some days.1. 1 Adapted from: Arends, Bode, Taal & van de Laar, 2012. Doelbewust! Trainershandleiding & Deelnemers materiaal [Right on Target. Trainer’s Guide and Participants’ Material]. Universiteit Twente & Reumacentrum Twente.. 9. PROEFSCHRIFT_ROOS_ARENDS_def.indd 9. 30-08-16 10:05.

(11) chapter 1. The World Health Organization [1] defines health as “a state of complete physical, mental and social wellbeing, and not merely the absence of disease or infirmity.” This definition, however, has received criticism for being too static, strengthening the medicalization of society, neglecting the human capacity to cope, and hampering operationalisation and hence health measurements [2-5]. Alternative definitions of health have been suggested, including the one by Huber and colleagues [2] who view health as the ability to adapt and to self-manage in the face of social, physical and emotional challenges. This description explicitly emphasizes a more dynamic view, as it embraces resilience and the ability to cope and maintain one’s integrity, equilibrium and sense of wellbeing [6]. The focus on resilience and affiliated factors as supporting mechanisms to improve wellbeing originates from the field of positive psychology. This scientific field stimulates research on two approaches, that is, health as the ability to be resilient and the search for what makes a person flourish and resilient [7-9]. These two approaches to wellbeing are becoming particularly necessary as the number of persons with a chronic disease such as arthritis rapidly increases due to a rise in aging populations and also because people with one or more chronic diseases are living longer [10,11]. In turn, health care systems are facing different, long-term demands as compared to the acute life-threatening diseases for which these systems were originally designed and are still organized around [10]. For the most part, the patients themselves, their family or their caregiver spend the majority of time and effort caring for the main part of their illness [12]. While patients spend approximately 5,800 waking hours per year caring for themselves and their condition, they will only spend few hours with health care professionals. This implies that patients need the skills to care for themselves; they need the confidence to deal with day-to-day decisions about their health; and above all, they need the ability to live a healthy and satisfying life despite any chronic condition(s) they might have. Polyarthritis Polyarthritis is collective term for a variety of chronic rheumatic disorders which typically involve inflammation in five or more joints and an association with an auto-immune pathology. Characteristic of many rheumatic diseases are periods of worsening disease activity, unpredictable and sudden flares consisting of inflammation and swelling in the joints, and unpredictable disease prognosis [13,14]. The predominant diagnoses are rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis. Rheumatoid arthritis (RA) has received the most research attention as it is a common form of polyarthritis, with a prevalence of 0.5 - 1% in the adult population in industrialized countries [15]. In general, patients experience sustained daily stressors, such as pain, fatigue, impaired physical functioning, disability, deformity, distress and a reduced quality of life [16,17]. The efficacy of pharmacological treatment has improved significantly in this century, moving the primary focus of health care from care to cure. However, some patients never reach remission, and 10. PROEFSCHRIFT_ROOS_ARENDS_def.indd 10. 30-08-16 10:05.

(12) general introduction. the development of new pharmacological treatment is needed to help all patients. Among other struggles, a chronic disease such as polyarthritis poses the challenge upon an individual to achieve and maintain psychological health. Psychological health can be described as the presence of wellbeing and the absence of distress [18,19]. Throughout this thesis, a set of outcomes is used to provide a multicomponent view of psychological health. These indicators of wellbeing are: the experience of a purpose in life, positive emotions, and satisfaction with social participation. Furthermore, symptoms of depression and anxiety are used to indicate distress. Earlier studies on the psychological health of persons with polyarthritis have mostly focused on depression. Interest in the symptom anxiety in this patient group has augmented in recent years while the presence of wellbeing has received little research attention. Research on distress has shown that persons with polyarthritis, when compared with healthy controls, experience elevated levels of depressive mood and anxiety [20,21]. Studies in RA populations indicate that 20 - 40% suffer from heightened depression and anxiety levels [20,22-26]. Alongside treatment of physical symptoms, it is necessary to concentrate on these symptoms of distress to improve overall wellbeing [27]. Based on the ‘classic’ biomedical framework, for decades research has focused on identifying pathways between disease symptoms and resulting functional limitations, and decreased psychological and social functioning. This focus has led to the understanding that symptoms, uncertainties and consequences of the disease, together with pro-inflammatory cytokines, are risk factors for the development and maintenance of mood disorders and lower wellbeing [28,29]. A relatively recent improvement in treatment approach can be found in personalized medicine, where individual profiles of genes, biomarkers or other phenotype information inform pharmacological tailored treatment for an individual patient [30,31]. In contrast to the biomedical approach, the biopsychosocial approach is holistic and comprehensive, emphasizing and including social and psychological dimensions of the illness [32]. Taking these dimensions into account enables a more complex but also more comprehensive view of health and disease and their impact on the individual [33]. Studies adopting the biopsychosocial approach show that suboptimal psychological and social wellbeing is related to an increased impact of the disease. For example, in a large population survey, psychological distress among arthritis patients was related to poorer physical health [34]. Furthermore, psychological distress is known to increase health care utilization and medical costs [35] and to negatively influence medication adherence and response to treatment [36]. Person-centred care The cautious shift from a biomedical to a biopsychosocial model of health has stimulated the emergence of patient-centred care [37-39]. Patient-centred care is based on a deep respect 11. PROEFSCHRIFT_ROOS_ARENDS_def.indd 11. 30-08-16 10:05.

(13) chapter 1. for patients as unique living beings and the obligation to care for them on their conditions [40]. As Epstein and Street (p. 100) [40] state: “Patients are known as persons in the context of their own social worlds, listened to, informed, respected, and involved in their care – and their wishes are honoured (but not mindlessly enacted) during their health care journey.” Patient-centred care is an increasingly applied concept in the care for patients with chronic diseases over the last decades. Although established as a whole-system approach in research and theory, patient-centeredness is often limited to patient-professional interactions during consultations [41,42]. This implies that components of the patient-centred approach that are considered ‘useful’ are viewed as complementary to the biomedical model. Although health professionals support person-focused values, care processes largely remain routinized and ritualistic and lack opportunities for the formation of meaningful relationships between patients and health professionals [43,30]. As a consequence, patient-centred care too often becomes stripped down to a disease-oriented and visit-oriented approach [41]. Often, the terms patient-centred care and person-centred care (or person-focused care) are used interchangeably [37]. Throughout this thesis, the term person-centred care (as well as person-focused care) refers to the whole package of principles and activities that forms around the life of a person and functions in the biopsychosocial framework [44]. Thus, person-centeredness does not refer to a biomedical disease-oriented framework, but to a framework that includes prevention and management of the patient’s problems in multiple domains over time [41,45,44,31,30]. The principles of person-focused care are highly applicable to the care of arthritis patients (as well as for all patients with chronic diseases). Supporting self-management and shared decision making are at the heart of person-centred care [46]. Patients should be equal partners in the planning, development and evaluation of care in order to assure it is most suitable for their needs [46]. By making the person more responsible for his or her own care, self-efficacy and self-management can be enhanced and supported [47]. Care should be focused on the problems or health concerns as they are experienced by a person in his or her context (for example, pain, fatigue or disabilities in the workplace caused by the disease), and treatment should be targeted accordingly [41]. Health services should promote control, independence and autonomy for the patient, their caregivers and families [46]. Existing self-management programmes Self-management programmes are central in a person-focused approach to care and indispensable to accomplishing effectiveness and efficiency by empowering patients. However, benefits of self-management interventions for patients with arthritis in diseaserelated terms and psychological outcomes are disappointing, especially in the long-term [48-51]. Systematic reviews concerning self-management interventions for patients with arthritis show small to moderate results on outcomes, that are, nevertheless, short-lived [i.e. 52,53,49,48]. The necessary identification of effective ingredients is complicated by 12. PROEFSCHRIFT_ROOS_ARENDS_def.indd 12. 30-08-16 10:05.

(14) general introduction. the use of various and numerous outcomes and a lack of clarity about the contents of an intervention [48,49]. One systematic review and meta-analysis has indicated that differing results of self-management programmes can be traced back to theoretical underpinnings or the lack thereof [54]. The most successful interventions in terms of a prolonged increase of psychosocial and disease outcomes are based on social cognitive theory [55] and systematically include more self-regulation techniques [54,56]. It follows that selfmanagement interventions should be built on a solid theoretical base in order to generate prolonged differences in the lives of people. Shifting from disease-centred to person-centred self-management Self-management interventions need to be taken one step further, and this can be accomplished by incorporating a person-centred view. Many existing self-management interventions focus above all on the management of the disease and bodily symptoms of the disease, while from a person-focused approach, the whole life of a person is the centre of attention. Two common characteristics of self-management programmes - the focus on disease management and the predetermination of content and goals in interventions - are described below. This discussion is followed by an alternative approach that derives from the person-centred view. Concerning the focus on disease management, traditional self-management interventions primarily focus on illness-related aspects. However, being diagnosed with arthritis implicates changes in many, if not all, domains of life, as Jeannette’s story at the start of this Chapter illustrates. Major pre-determined aims might be reducing pain and fatigue, but for most patients, other aspects of life may be more important. For example, qualitative research revealed arthritis patients as having difficulties with maintaining or attaining goals in several other life domains, including work, leisure activities, social relationships and domestic tasks [57,58]. Programmes aimed at self-managing arthritis should, therefore, broaden their scope of life domains and recognize the interplay of all domains. In addition, programmes should not only focus on optimization of (physical) functioning but also on aspects such as motivation and meaning. To stimulate effective self-management, the current focus of providing information on symptom management and lifestyle choices needs to shift to a more collaborative model, in which patients are proactive in identifying areas that could be improved for their own self-management [47,37]. Concerning the second common characteristic of traditional self-management programmes, their aims are typically predefined according to treatment guidelines and, as such, do not necessarily relate to the goals of the participants or their domains of personal importance. It has repeatedly been demonstrated that only internalized goals produce considerable effects in terms of life style changes, medication adherence and disease management outcomes [59-61]. Despite this, traditional self-management programmes focus on goal attainment and goal maintenance, for example, in the Arthritis Self-Management Program 13. PROEFSCHRIFT_ROOS_ARENDS_def.indd 13. 30-08-16 10:05.

(15) chapter 1. people are encouraged to perform physical exercises regularly [62]. Pursuing an unrealistic or unattainable goal may result in reduced mental and physical health and wellbeing [63-65]. While such advice might be logical and useful for most arthritis patients, it is not person-focused when it is offered indiscriminately to all participants, as it is not based on personal goals or needs, but instead on a clinical point of view. One of the four principles of person-centred care is: “supporting people to recognize and develop their own strengths and abilities to enable them to live an independent and fulfilling life” (p. 6) [37], from which it follows that a self-management programme should be built on the principles of resilience and empowerment. This implicates that a self-management course should provide individuals with the methods to best influence their own lives, leaving the decision of what to influence or change to the patients themselves. Goal-based coping In summary, the basic principles upon which self-management interventions should be built are: a solid theoretical base in order to cause long-term effects, a focus on a collaborative model to enhance resilience and empowerment, and methods to cope with personal goals. Useful insights for designing interventions around personal goals stem from developmental psychology and psychogerontology. Scientists have observed that people are able to maintain a stable level of wellbeing and a sense of personal efficacy in old age, despite the accumulation of aversive changes and deteriorating health [66]. This phenomenon is referred to as the disability paradox [67], and it shows similarities with the process of successful adaptation to a chronic disease, described as an ongoing process of finding equilibrium in a situation that constantly changes [68]. Note also the similarities of these findings to the new definition of ‘health’ as previously quoted [2]. Successful adaptation is closely linked to resilience, a concept that is described in various ways [69], for example, as achieving a positive outcome in the face of adversity [70], as an outcome or a process [71], or as the ability to recover from stress or adversities [72]. In the case of chronically ill people, the latter conceptualisation might be most appropriate. Coping processes and mechanisms related to resilience can lead to a variety of developmental trajectories, i.e. more or less successful outcomes of adaptation and health [73]. The perspective of self-regulation provides a useful framework for studying the mecha nisms underlying resilience and adaptation in the context of chronic disease and disability [74,75]. Self-regulation models assume most human behaviour to be goal-directed, and progress or failure in goal attainment has affective consequences [76,77,59]. Several theories describe adaptive self-regulatory processes [78-80]. These processes commonly share the human capacity to shape one’s development within the context of one’s own strengths and limitations by means of balancing between the striving towards attainable goals and the adjustment of goals that are no longer feasible [75]. Goals play a fundamental role in wellbeing as they imbue life with meaning and provide a 14. PROEFSCHRIFT_ROOS_ARENDS_def.indd 14. 30-08-16 10:05.

(16) general introduction. structure within which one can define life [76,80-83]. Maintaining and attaining achievable goals can offer satisfaction, at least as long as goal attainment remains feasible. For various reasons, goals may become increasingly difficult to pursue or an important goal may become no longer feasible. In some instances people are able to resolve this incongruity by exerting more effort towards reaching a goal or by increasing their commitment to the goal [84]. But when a major goal is no longer feasible or when an unrealistic goal is pursued, a negative influence on a person’s wellbeing can occur, ultimately leading to a reduction of one’s wellbeing and mental and physical health [63-65]. Goal management strategies intend to minimize discrepancies between the actual situation and a person’s goals. Therefore, such strategies can be seen as possible ways to react to difficulties encountered along the path towards a goal. Two existing models of goal management focus on several goal management strategies (see Table 1). The first is the dualprocess framework that incorporates both assimilative and accommodative modes of coping [85,65,86]. In the assimilative coping mode (strategy of goal maintenance) active attempts to alter unsatisfactory life circumstances and situational limitations are carried out to maintain goals. A shift from the assimilative to accommodative process is thought to occur when goals exceed available resources or become unattainable [75,87,88]. Accommodative coping (strategy of goal adjustment), on the other hand, occurs when goals are adjusted to match the personal boundaries of what remains possible. Self-evaluative standards and personal goals are revised in accordance with perceived deficits and losses. The accommodative coping mode helps to reduce feelings of helplessness and to preserve a sense of efficacy [75]. The second model focuses on goals that are experienced as no longer attainable; this. Table 1. The Dual Process Framework and Goal Adjustment Model: Authors, strategies and descriptions. Theory and description. Authors. Strategy. Dual-process framework: . Brandtstädter &. Goal maintenance. Description. Two modes or self-regulation . Rothermund, 2002; (assimilative coping. undesirable situations so that. processes that are intended to . Brandtstädter, 2009. mode). important goals can be retained.. Conscious actions aimed at adjusting. decrease discrepancies between . Goal adjustment. Modifying or abandoning an. the actual situation and the . (accommodative. unattainable goal. This is achieved by. coping mode). adjusting expectations and. desired situation. Goal Adjustment Model:. Wrosch, Scheier,. Two separate self-regulation . Carver & Schulz, . preferences.. Goal disengagement The ability of a person to let go of an unattainable goal and decrease the. processes that play a role when 2003; . perceived importance of that goal. The identification of new, alternative. the maintenance of a goal is no Wrosch, Scheier,. Reengagement in. longer possible, i.e. a goal is . Miller, Schulz, &. new goal(s). perceived as unattainable. . Carver, 2003. . goals and the initiation of activities aimed at these new goals.. 15. PROEFSCHRIFT_ROOS_ARENDS_def.indd 15. 30-08-16 10:05.

(17) chapter 1. goal adjustment model involves two strategies [78,83]. The goal disengagement strategy is defined as the withdrawing of effort and commitment from an unattainable goal. This may help a person avoid accumulated experiences of failure [89]. In addition, it may help a person redefine the goal as not necessary for life satisfaction, and thereby allow him or her to accept the inability of reaching the goal [80,78]. Another more long-term benefit of the use of this strategy is the release of personal resources that can be deployed for beneficial effects in other areas of life, alternative actions and new goals [78]. The strategy of reengagement in new goals consists of the identification of alternative goals, the assignment of value to these goals, and the initiation of activities directed toward goal attainment [83]. Goal reengagement can improve subjective wellbeing by engaging in personally meaningful activities [82]. Also, new personal goals that assume the place of abandoned goals seem appositively connected to a person’s sense of identity [83]. Goal-based coping in patients with chronic diseases Chronic disease can cause various degrees of severe goal interference for patients and their close friends and families. The strategies from both coping models shown in Table 1 have been found to play an important role in adjustment to chronic disease and disability. Numerous observational studies have indicated the roles the various goal management strategies play when used by persons adapting to a chronic disease [74,90-96]. Studies with diverse patient groups showed that goal-based coping tends to relate more positively to the patients’ quality of life, lessens symptoms of depression, and provides more positive affect and general adjustment to the disability [97-99]. A study among patients with multiple sclerosis showed that low goal disengagement in combination with low goal reengagement was beneficial for preventing symptoms of depression, whereas a combination of high goal disengagement and low goal reengagement related to heightened symptoms of depression [95]. A study with patients of peripheral arterial disease revealed that the pursuit of new goals was of great importance for psychological wellbeing [93]. Maintenance of unattainable goals and disengaging from goals without reengaging in new realistic goals is seen as risky with regard to mental health [65,100,78]. Thus, research supports the assumption that goal management strategies are essential for the adaptation to a chronic disease. Goal-based coping can facilitate adaptation to the circumstances of the chronic disease by recognizing threatened personal goals, finding optimal ways to deal with threatened goals in different life domains, and ultimately reengaging in new goals to ensure a positive future perspective. The flexibility of persons to adjust their behaviour to an ever-changing environment is called ‘coping flexibility.’ Coping flexibility has primarily been investigated in populations with mental health problems or work stress [101-103]. This ability to flexibly respond and cope with changing situations and fluctuating levels of functioning might be especially beneficial for people with a chronic disease to maintain their psychological health. However, most of the current 16. PROEFSCHRIFT_ROOS_ARENDS_def.indd 16. 30-08-16 10:05.

(18) general introduction. knowledge regarding the applicability and usefulness of goal management strategies in chronic disease populations, including those with polyarthritis, stems from cross-sectional studies. Consequently, longitudinal studies are needed to gain more insight into the causal relationships between goal interference, applied goal management strategies and their effect on psychological health in persons with polyarthritis. Adopting a self-regulation perspective that consists of multiple strategies that enable an individual to cope with goal interference may be especially valuable in the context of a chronic progressive disease like polyarthritis. It is likely that patients attribute a higher importance to goals in one domain than in others (for example, Jeannette valued social activities as being more important than tennis). Goals in some domains, i.e. prosocial goals and goals that transcend the person, relate stronger to wellbeing than goals in other domains [104,105]. Authors have underlined the value of the assimilative and accommodative coping modes, as they recognize the influence of contextual factors while also capturing their dynamic, interactive quality [106,107]. As this complexity is difficult to assess with the standardized self-reporting questionnaires commonly used in coping research, little knowledge of domainspecific goal management actually exists [108]. In addition, measurement methods capable of measuring domain-specific goal management are lacking. More insight into preferences for goal management in specific domains may increase the knowledge base on effective goal-based coping and interventions that aim to improve psychological health.. Aim and outline of this thesis To conclude, the precise relationships between a range of goal management strategies and adaptation to polyarthritis are unknown. Knowledge of effective goal-based coping can help health care providers identify those patients with polyarthritis who are at risk of poor psychological outcomes as well as guide the providers in how to best stimulate patients’ resilience. Person-centred interventions are needed to help persons with polyarthritis achieve and maintain psychological health. Such a self-management intervention can be developed based on goal-based coping. This thesis is organized around two research questions: The first question focused on the relationship between goal management and psychological adaptation to arthritis. The second question resulted in the design of a goal management programme to stimulate adaptation to polyarthritis for people with depressive symptoms and then studied the effects of this newly designed programme. Question I: What is the relationship between goal management and psychological adaptation to arthritis? Part I of this thesis describes three studies that were conducted in order to answer this first question. In Chapter 2, goal management was cross-sectionally related to adaptation in a sample of persons with polyarthritis. An integrated model of goal management 17. PROEFSCHRIFT_ROOS_ARENDS_def.indd 17. 30-08-16 10:05.

(19) chapter 1. was presented that combines four goal management strategies: goal maintenance, goal adjustment, goal disengagement, and goal reengagement. The objective of this study was to examine how these goal management strategies related to psychological distress (symptoms of depression and anxiety) and wellbeing (purpose in life, positive affect, and satisfaction with social participation) in this patient group in an observational setting. Chapter 3 describes the objective of the next study that aimed to identify patterns consisting of various strategies of goal management among persons with polyarthritis. To date, no studies have been performed on the relationship between goal-based coping and outcomes in terms of psychological health over time. This gap in the scientific literature was addressed with the researched conducted on the cross-sectional and longitudinal relationships between the patterns of goal management and psychological health were studied. Subsequently, the development of a method to measure preferences for goal management in several domains of life is described. As previously discussed, generally goal management has been studied as a personal characteristic or general tendency. Previous studies have indicated that the relationship between wellbeing and the pursuit of a goal might depend on the domain from which the goal originates [104,105]. Therefore, a domainspecific measurement method can enable research on this topic. Furthermore, it is unknown whether preferences for goal management of persons with polyarthritis depend on the domain from which a goal originates. Preferences for specific strategies might differ across domains and situations in which goal interference is experienced. To research these areas, a questionnaire to study domain-specific goal management was developed and applied in a sample of persons with polyarthritis. Described in Chapter 4, the questionnaire consisted of arthritis-related vignettes – hypothetical stories – wherein arthritis interferes with a valued goal, and respondents were asked to provide possible solutions for the goal-related problem. The objective of this study was to gain insight into how patients preferred to cope with a threatened goal in a specific domain. This questionnaire enabled a comparison with other measurement methods that focus on general tendencies of goal-based coping, and it provided more insight into domain-specific coping preferences of persons with polyarthritis. Question II: What is the effect of a goal management programme on the psychological health of people with arthritis and mild depressive symptoms? In Part II, three studies are described that were conducted in order to answer the second question of this thesis. Building on the studies described in Part I, a group programme based on goal-based coping was developed from a person-centred perspective. In Chapter 5 the rationale behind this programme is described, as well as the design of a trial into the effect of the programme. A multi-centre study was executed to examine the effect of the goal management programme in increasing adaptation. Both outcomes in terms of distress (symptoms of depression and anxiety) and wellbeing (purpose in life, positive affect and social participation) were examined. In Chapter 6 the results of this quasi-experimental trial are discussed. For this study, the goal management programme was offered in four clinics to 18. PROEFSCHRIFT_ROOS_ARENDS_def.indd 18. 30-08-16 10:05.

(20) general introduction. persons with polyarthritis with mild depressive symptoms. Participants were compared to a reference group on indicators of distress and wellbeing, and strategies of goal management were studied as assumed mediators. To complement the effect study, a thorough processevaluation into the newly developed programme was executed using triangulation of data from different methods, as described in Chapter 7. This chapter recounts the key components of the goal management programme from the perspective of the participants and the fidelity of the programme. Implications for person-centred interventions are also discussed. Finally, Chapter 8 summarises and provides a general discussion of the results of the previous chapters, followed by recommendations for practice and future research.. 19. PROEFSCHRIFT_ROOS_ARENDS_def.indd 19. 30-08-16 10:05.

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(27) chapter 1. 98 Coffey L, Gallagher P, Desmond D, Ryall N, Wegener ST (2014) Goal Management Tendencies Predict Trajectories of Adjustment to Lower Limb Amputation Up to 15 Months Post Rehabilitation Discharge. Arch Phys Med Rehabil 95 (10):1895-1902. doi:10.1016/j.apmr.2014.05.012 99 Garnefski N, Kraaij V (2010) Do cognitive coping and goal adjustment strategies used shortly after myocardial infarction predict depressive outcomes 1 year later? J Cardiovasc Nurs 25 (5):383-389. doi:10.1097/JCN.0b013e3181d298ca 100 Wrosch C, Miller GE, Scheier MF, De Pontet SB (2007) Giving up on unattainable goals: Benefits for health? Personality and Social Psychology Bulletin 33 (2):251-265. doi:10.1177/0146167206294905 101 Kashdan TB, Rottenberg J (2010) Psychological flexibility as a fundamental aspect of health. Clin Psychol Rev 30 (7):865-878. doi:10.1016/j.cpr.2010.03.001 102 Kato T (2012) Development of the Coping Flexibility Scale: evidence for the coping flexibility hypothesis. Journal of counseling psychology 59 (2):262 103 Cheng C, Lau H-PB, Chan M-PS (2014) Coping flexibility and psychological adjustment to stressful life changes: A meta-analytic review. Psychol Bull 140 (6):1582 104 Bode C, Arends RY (2014) Optimale ontwikkeling, persoonlijke doelen en zelfregulatie. In: Bohlmeijer E, Bolier L (eds) Handboek Positieve Psychologie. Theorie, onderzoek en toepassingen. . Boom, Amsterdam, pp 139 - 152 105 Katz PP, Yelin EH (2001) Activity loss and the onset of depressive symptoms: Do some activities matter more than others? Arthritis Rheum 44 (5):1194-1202. doi:10.1002/1529-0131(200105)44:5<1194::aidanr203>3.0.co;2-6 106 Park CL (2010) Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychol Bull 136 (2):257-301. doi:10.1037/ a0018301 107 Skinner EA, Edge K, Altman J, Sherwood H (2003) Searching for the Structure of Coping: A Review and Critique of Category Systems for Classifying Ways of Coping. Psychol Bull 129 (2):216-269. doi:10.1037/0033-2909.129.2.216 108 Persson L-OA (2006) Themes of effective coping in physical disability: an interview study of 26 persons who have learnt to live with their disability. Scand J Caring Sci 20 (3):355-363. doi:10.1111/ j.1471-6712.2006.00418.x. 26. PROEFSCHRIFT_ROOS_ARENDS_def.indd 26. 30-08-16 10:05.

(28) Part I. The relationship between goal management and psychological adaptation to arthritis. PROEFSCHRIFT_ROOS_ARENDS_def.indd 27. 30-08-16 10:05.


(30) 2. The role of goal management for successful adaptation to arthritis. R.Y. Arends C. Bode E. Taal M.A.F.J. van de Laar. Patient Education and Counseling 2013, 93: 130138 DOI:10.1016/j.pec.2013.04.022. PROEFSCHRIFT_ROOS_ARENDS_def.indd 29. 30-08-16 10:05.

(31) chapter 2. Abstract Objectives Persons with polyarthritis often experience difficulties in attaining personal goals due to disease symptoms such as pain, fatigue and reduced mobility. This study examines the relationship of goal management strategies - goal maintenance, goal adjustment, goal disengagement, goal reengagement - with indicators of adaptation to polyarthritis, namely, depression, anxiety, purpose in life, positive affect, participation, and work participation. Methods 305 patients diagnosed with polyarthritis participated in a questionnaire study (62% female, 29% employed, mean age: 62 years). Hierarchical multiple-regression-analyses were conducted to examine the relative importance of the goal management strategies for adaptation. Self-efficacy in relation to goal management was also studied. Results For all adaptation indicators, the goal management strategies added substantial explained variance to the models (R2: .07 - .27). Goal maintenance and goal adjustment were significant predictors of adaptation to polyarthritis. Self-efficacy partly mediated the influence of goal management strategies. Conclusions Goal management strategies were found to be important predictors of successful adaptation to polyarthritis. Overall, adjusting goals to personal ability and circumstances and striving for goals proved to be the most beneficial strategies. Practice implications Designing interventions that focus on the effective management of goals may help people to adapt to polyarthritis.. 30. PROEFSCHRIFT_ROOS_ARENDS_def.indd 30. 30-08-16 10:05.

(32) The role of goal management for successful adaptation to arthritis. Introduction The current study focused on the adaptation of people with polyarthritis to their disease. Polyarthritis encompasses a variety of disorders, including rheumatoid arthritis (RA), ankylosing spondylitis and psoriatic arthritis. Disorders classified as polyarthritis are typically involved with inflammation in five or more joints and associated with auto-immune pathology. Inflammation generally causes pain, fatigue and swelling in multiple joints. In spite of medical treatment that may alleviate polyarthritis, for many patients, pain, fatigue, disability, deformity, and reduced quality of life persist [1,2]. Patients often face difficulties with attaining or maintaining goals in several domains of life, including work, social relationships, leisure activities and domestic tasks [3,4]. Five key elements of successful adaptation to a chronic disease have been identified [5]: (1) the successful realization of adaptive tasks; (2) the absence of psychological disorders; (3) the presence of low negative affect and high positive affect; (4) adequate work/functional status; (5) and satisfaction and wellbeing in various life domains. It follows that both the absence of psychological distress and the presence of well-being are important for successful adaptation to arthritis. In the present study two negative (depression, anxiety) and three positive (purpose in life, positive affect, participation) indicators of adaptation are used, as these are thought to be important issues for polyarthritis patients. As a result of its high prevalence compared to healthy controls [6], depressive mood in RA patients has gained much attention in the scientific literature. Moreover, research has shown that RA patients tend to have increased levels of anxiety [7]. Previous findings also revealed lower levels of purpose in life in patients with RA in comparison with healthy populations [8]. Purpose in life - a central aspect of wellbeing - means: “the feeling that there is a purpose and meaning in life, (…) a clear comprehensibility of life’s purpose, a sense of directedness, and intentionality” (p. 1071) [9]. Positive affect, another indicator of wellbeing, lowered the increase in negative affect when levels of pain were elevated in patients with arthritis [10,11]. The experienced level of participation in society is also an essential indicator of adaptation to arthritis, referring to a person’s involvement in life experiences, such as socializing and performing one’s role in the context of the family. Polyarthritis has been shown to negatively affect participation and work ability [12-14]. Lowered work ability or work loss can imply financial costs for society. For the individual patient, it can mean loss of status, family income and social support [12]. Polyarthritis demands specific competencies by patients for successful adaptation. Due to the absence of a cure, lifelong self-management is essential for coping with polyarthritis. The fluctuating course of polyarthritis and uncertain disease progression threaten patients’ feelings of autonomy. Therefore, a sense of regulatory efficacy is of major importance for wellbeing [15]. Higher self-efficacy for coping with disease symptoms in RA patients is correlated with less fatigue, increased physical ability, decreased pain, improved mood, and 31. PROEFSCHRIFT_ROOS_ARENDS_def.indd 31. 30-08-16 10:05.

(33) chapter 2. improved adherence to health recommendations [16-20]. However, maintaining life as it was before disease onset is often impossible for patients with a progressive chronic disease [21]. Research should therefore not only focus on the management of the disease, but also on how the patient adjusts to abandoning activities and life goals that are no longer feasible. Research has shown that adjusting personal standards and life goals is as important for wellbeing as pursuing personal goals [22]. Goal management strategies are intended to minimize discrepancies between the actual situation and the goals a person has. These strategies can be seen as possible ways to react to difficulties along the path towards a goal. The dual-process model [23-25] incorporates both assimilative and accommodative modes of coping. The assimilative mode is directed at maintaining goals by actively attempting to alter unsatisfactory life circumstances and situational constraints in accordance with personal preferences. Maintaining goals that are achievable gives people a purpose in life and can offer satisfaction. Accommodative coping is directed towards a revision of self-evaluative standards and personal goals in accordance with perceived deficits and losses—an approach that adjusts goals to the personal bounds of what remains possible. In contrast, the goal adjustment model [26] focuses on goals that are experienced as no longer attainable. This model combines goal disengagement with goal reengagement. Goal disengagement consists of withdrawing effort and commitment from an unattainable goal, with the benefit of releasing limited resources that can then be deployed for alternative actions and new goals. Goal reengagement consists of identifying, committing to and starting to pursue alternative goals. New personal goals seem important for promoting a person’s sense of identity [27] and subjective wellbeing, which should be improved by engaging in personally meaningful activities [28]. The models are partly complementary, and neither is comprehensive with regard to the possible goal management strategies a polyarthritis sufferer – or indeed anyone – can adopt. To be comprehensive but still straightforward, we hypothesized a model that integrates the four strategies (see Fig. 1). This integrated model of goal management focuses on goal maintenance, goal adjustment, and goal reengagement. The maintenance of goals is considered to be the preferred strategy when a person still perceives opportunities to attain a goal. Goal adjustment is more suitable for situations in which goals are under threat. Goal reengagement seems an appropriate strategy at all times, to complement existing goals or replace unattainable goals. We hypothesized that the strategy of disengaging from goals is one facet of the broader strategy goal adjustment.. 32. PROEFSCHRIFT_ROOS_ARENDS_def.indd 32. 30-08-16 10:05.

(34) The role of goal management for successful adaptation to arthritis. Goal threathened. Maintain goal • Instrumental activities • Self-corrective actions • Compensatory measures. Severe difficulties with attaining goal. Adjust goal • Downgrading of aspirations • Disengagement from barren goals • Positive reappraisal of situation • Self-enhancing comparisons. Goal unreachable. Reengage in new goal • Identifying new/alternative goal • Commiting to new goal • Starting to pursue new goal. Figure 1 Integrated Model of Goal Management. To the best of our knowledge, there have been no previous studies that have combined both models of goal management. However, several studies have explored the relationship between goal management strategies and distress for various chronic diseases. Adjustment of goals was found to have beneficial effects on depression and social dysfunction in visionimpaired adults [29]. Among patients with chronic pain, the ability to adjust goals buffered against the deteriorating effect of the pain experience on depression [25]. A study with patients diagnosed with peripheral arterial disease suggested that, when patients applied the strategy of engaging in new goals, this resulted in fewer depressive symptoms [30]. Another study among patients with multiple sclerosis found that combining low disengagement and low reengagement resulted in fewer depressive feelings [31]. To summarize, the relation between the use of the goal management strategies and distress for patients with a chronic disease is not completely clear yet. For facets of wellbeing in chronic disease, research has shown positive associations with the use of various goal management strategies [29,31,32]. In the present research, both distress (anxiety and depression) and wellbeing (purpose in life, positive affect and participation) as indicators of adaptation to a chronic disease were studied. The main research question was as follows: What is the role of various goal management strategies (goal maintenance, goal adjustment, goal disengagement, and goal reengagement) for adaptation to polyarthritis, as operationalized by the following indicators: anxiety, depression, purpose in life, positive affect, and participation? Hypothesized was that the use of goal management strategies relates positively to successful adaptation. Within the integrated model of goal management, we hypothesized goal disengagement to be a subcategory of goal adjustment, which would imply a strong relationship between the two strategies. As said before, arthritis related self-efficacy is known to be an important mechanism in adaptation to a rheumatic disease, therefore we studied main effects of self33. PROEFSCHRIFT_ROOS_ARENDS_def.indd 33. 30-08-16 10:05.

(35) chapter 2. efficacy on adaptation. The self-efficacy a person perceives in managing disease symptoms like pain and fatigue may also play a role in the effectiveness of different ways of goal management a person can utilize. Therefore, we also examined the role of self-efficacy in relation to goal management strategies and adaptation.. Methods Sample For this questionnaire study, participants were selected from an outpatient clinic for rheumatology. Based on the following inclusion criteria, 803 patients were at random selected from the electronic diagnosis registration system: (1) patient is diagnosed with polyarthritis; (2) patient is receiving treatment for polyarthritis. Subsequently, the rheumatologists checked the chart of every patient for the additional inclusion criteria: (3) patient is 18 years or older; (4) patient is able to complete the questionnaire in Dutch, either autonomously or with help. Out of 803 patients, 164 were not approached because they did not meet the inclusion criteria. The internal review board of the Faculty of Behavioural Sciences at the University of Twente approved the study. Procedure A total of 639 patients received an invitation letter, together with the questionnaire and an informed consent form. In time, 305 questionnaires and signed informed consents (48%) were received. Table 1 shows the demographic and clinical characteristics of the participants. Measures Questions were asked about sex, age, marital status, education and employment. Disease duration was asked with the following question: ‘In which year did the complaints associated with your arthritis start?’ All other questionnaires - including the measures for the goal management strategies and the five indicators of adaptation - are described in Table 2.. 34. PROEFSCHRIFT_ROOS_ARENDS_def.indd 34. 30-08-16 10:05.

(36) The role of goal management for successful adaptation to arthritis. Table 1 Demographic and Clinical Characteristics of the Participants (n=305) Demographic characteristics Sex, n (%) . Male. 116 (38.0). . Female. 189 (62.0). Age (years), mean (SD), range. Marital status, n (%). 62.25 (13.3), 18-91. . Not living with partner. 76 (24.9). . Living with partner. 223 (73.1). . Missing. Educational level, n (%)a. 6 (2). No / Lower. 125 (41.0). . Secondary. 109 (35.7). . Higher. 64 (21). . Missing. 7 (2.3). Work status, n (%). . No paid job. 212 (69.5). . Full-time and part-time employment. 88 (28.9). . Missing. 5 (1.6). Disease characteristics Diagnosis, n (%) . Rheumatoid arthritis. 168 (55.1). . Gout and other crystal diseases. 32 (10.5). . Polymyalgia & Temporal Arteriitis. 29 (9.5). . Spondylarthropathy. 24 (7.9). . SLE and other systemic diseases. 20 (6.6). Other / non-classifiable . 32 (10.5). Disease duration (years), mean (SD), range. 14.78 (12.2), 1-71. Comorbidities, n (%) . Disease of the cardiac or circulatory system. 52 (17). . Sensory disorder. 47 (15). . Disorder of the skin. 47 (15) 43 (14). . Disorder of the digestive system. . Disorder of the respiratory tract. 37 (12). . Disorder of urinary of genital. 35 (11). . Metabolic disorder. 31 (10). . Other (e.g. blood disease, malignancy, mental illness, allergy) . 145 (48). a. Low: No education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university.. 35. PROEFSCHRIFT_ROOS_ARENDS_def.indd 35. 30-08-16 10:05.

(37) Variable Scale Author Example Items Response options N α Scale M SD range Co morbidity Checklist with 15 Based on the Inter- 16 292 0-16 1.43 1.5. categories of national Classification of Diseases conditions a (ICD-10: WHO, 1992) without any difficulty 303 .92 0-3 .98 .76 Functional HAQ-DI Fries, Spitz, Kraines, Are you able to dress your- 20 (0) -unable to do (3) limitations & Holman, 1980 [33] self, including tying shoe- laces and doing buttons? Pain 1 item numerical Amount of pain in the 1 no pain at all (0) - 297 - 0-10 4.05 2.46. rating scale past 7 days, caused by unbearable pain (10) polyarthritis. Fatigue 100 mm visual Mean amount of fatigue 1 no fatigue (0) - comp- 296 - 0-100 42.00 26.47. analogue scale in the past 7 days. letely exhausted (100) Goal Tenacious Goal Brandtstädter & When faced with difficulties, 15 strongly disagree (1) - 298 .73 15-75 46.94 6.18 maintenance Pursuit (TGP) Renner, 1990 [34] I usually double my efforts. strongly agree (5) Goal Flexible Goal Brandtstädter & I adapt quite easily to 15 strongly disagree (1) - 299 .79 15-75 51.90 6.52 adjustment Adjustment Scale Renner, 1990 changes in plans or strongly agree (5). (FGA). circumstances. Goal Goal Adjustment Wrosch, Scheier, If I have to stop pursuing an 4 strongly disagree (1) - 297 .53 4-20 11.68 2.31 disengagement Scale Miller, et al., 2003 important goal in my life, strongly agree (5) [26] it’s easy for me to reduce my effort towards a goal. Goal Goal Adjustment Wrosch, Scheier, If I have to stop pursuing 6 strongly disagree (1) - 298 .88 6-30 21.20 b 3.57 b reengagement Scale Miller, et al., 2003 an important goal in my life, strongly agree (5) I seek other meaningful goals. Self-efficacy Arthritis Lorig, et al., 1989 I am certain that I can keep 5 strongly disagree (1) - 300 .83 1-5 3.24 .80 arthritis pain from strongly agree (5) pain Self-Efficacy Scale c [18] interfering with my sleep.. Table 2 Characteristics of the Questionnaires used in this Study. chapter 2. 36. PROEFSCHRIFT_ROOS_ARENDS_def.indd 36. 30-08-16 10:05.

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