Exploring preferences for domain-specific goal management in patients with polyarthritis: what to do when an important goal becomes threatened?

Chronic conditions present a set of challenges to patients and their families who must endure behavioral and psychological changes. Patients have to deal with disease symptoms, increasing disability, emotional impact, complex medical regimens, lifestyle adjustments, and securing helpful medical care [1]. As a result of the changes that the disease entails, important personal goals may be threatened or even unachievable [2‐4]. In addition to the emotional impact of the disease and associated challenges, unreachable or threatened goals may have a negative influence on well-being. Although lower levels of well-being are found in patients, not all patients experience lower well-being, and, in fact, a substantial number of patients evaluate their life as meaningful [5‐7]. As coping can improve adaptation to the above-mentioned challenges and, consequently, increase well-being, knowledge of appropriate coping strategies facilitates well-being for those who struggle with finding a (new) balance in living with a chronic condition.

A way to cope with threatened personal goals is by using goal management which attempts to minimize discrepancies between the goals of a person and the actual situation [8, 9]. However, the distinction between coping from a dispositional perspective as opposed to a contextual perspective is a dichotomy among coping theorists [10, 11]. These perspectives contain contrasting underlying determinants of the coping process. Applying the dispositional and contextual perspectives to goal management, the difference is whether the applied mode of goal management is determined by stable trait characteristics of a person or by situation-specific factors. A useful integration of both perspectives can be found in the model of Moos and Holahan [10], which emphasizes that individuals are active agents who can shape the outcomes of stressful life circumstances and, in turn, be shaped by them.

Existing questionnaires about goal management are designed to measure general tendencies. A series of statements is presented to participants, who are asked to indicate to what degree a statement describes their typical reaction pattern. As the questionnaires measure dispositional goal management, they gather information on how a person judges his or her own behavior in general. However, reflecting the contextual perspective on coping, people may make different decisions in different situations depending on the importance of the personal issues at stake. Little is known about the choices that people make when confronted with limitations and declining ability to perform valued activities in specific domains. A domain-specific measurement method can be applied for this purpose. Additionally, the use of questionnaires can raise ambiguity as respondents are asked to make decisions and judgments from abstract and limited information [12]. It remains, for example, unclear whether a respondent was thinking of a particular goal, occurrence, or time period when responding to the statements.

Hypothetical scenarios or vignettes that describe arthritis-specific situations might be a promising method to collect information on goal management in polyarthritis patients. Vignettes are valued as a method to measure attitudes, beliefs, and values, especially about abstract concepts related to health and illness [13, 14]. The use of vignettes helps to standardize stimuli across respondents [12], making it a convenient and expedient method for collecting extensive amounts of data from large samples [13]. Vignettes should contain valid and typical situations that are recognizable by the majority of respondents. In that way, the reaction to the vignette is more comparable with natural daily situations.

Almost two million adults in the Netherlands are diagnosed with a rheumatic disease. In this group, 420,000 people have a form of inflammatory arthritis [15]. Medical management may alleviate inflammation and part of the pain, but for many patients fluctuating pain, fatigue, disability, deformity, and reduced quality of life persists [16, 17]. Disease symptoms like pain, fatigue, and functional limitations can make it difficult and even impossible to attain goals in important life domains [18].

Studies from two different but complementary approaches offer insights into the life domains that are influenced by arthritis. One approach includes studies that researched domains from a professional/caregiver, decision-maker, and/or epidemiological perspective, e.g., [19‐24]. Limitations in physical and mental functioning, activities, and participation were reported [23], and domains influenced by arthritis were specified as: work and remunerative employment; recreation and leisure; family and social or intimate relationships [19, 21, 23, 25‐27]. Limitations in one domain can have significant impact in other domains of life. For example, polyarthritis has been demonstrated to negatively influence participation and work ability [21, 25, 28], possibly resulting in loss of family income, status, and social support [28].

The second approach is reflected in studies that researched the patient perspective of the impact of the disease on daily life. Research methodologies are diverse, ranging from: clinical case reports [29], interview studies using (life) stories of patients [30‐32], the use of focus groups [33], cohort studies using structured interviews [18, 34, 35], and literature reviews [36]. Some of these patient-perspective studies revealed problems with attaining or maintaining goals in both private and public domains of life, including work, social relationships, leisure activities, and domestic tasks [2, 37]. Most of the previous mentioned studies, however, focused on what patients reported as important concepts, general outcomes of treatment, or adjustments made to life. Examples of such reports are: “feeling well in myself,” “being normal again,” “fatigue,” and “emotional consequences” [33, 36]. From studies based on both the approaches of professional perspective and the patient-perspective studies, one can conclude that arthritis has an influence on a wide variety of life domains of patients which, therefore, might be useful to distinguish.

Changes in life domains caused by a chronic disease can have psychological and social consequences for patients and can affect their identity [38]. To have and strive for personal goals are important for well-being [39, 40], while the inability to achieve goals can cause frustration and depression. The loss of activities in some domains appears to be more closely linked to an increase in depressive symptoms than the loss of activities in other domains [41]. For example, declines in the ability to perform recreational activities and engage in social interactions were found in the longitudinal study of Katz et al. [41] to be linked to the onset of depressive symptoms. In particular, when the goals are closely linked to the identity of a person, unattainable goals can have a negative influence on well-being. Several studies showed that among rheumatoid arthritis (RA) patients, there is a higher prevalence of anxiety and depressive symptoms and lower levels of purpose in life than in healthy controls [42‐44]. Psychosocial problems, in turn, can have an adverse influence on disease burden. Patients experiencing psychosocial problems report higher disease scores and more pain, even though they do not have higher disease activity or lower functional ability than other patients [45].

To find an equilibrium between which goals to maintain and which to disengage from may be a beneficial process to sustain well-being. This implies being flexible and able to react to obstacles to personal goals in various ways [4, 46, 47]. People can use several strategies when they encounter an obstacle on their path to a goal. These goal management strategies are intended to minimize discrepancies between the given situation and the desired situation. Ideally, patients would weigh possible strategies against their own potential and constraints from the environment. Individuals require a repertoire of strategies and skills to successfully choose and apply the strategies in every particular case of a threat to a goal.

Several goal management strategies are described in the literature. The integrated model of goal management [4] combines four strategies from the dual process model of assimilative and accommodative coping [8, 9, 48] and the goal adjustment model [49]. The strategies in this model are as follows: (1) Goal maintenance, implying active attempts to alter unsatisfactory life circumstances and situational constraints in a way that fits personal preferences. (2) Goal adjustment, the revision of self-evaluative standards and personal goals in accordance with perceived deficits and losses to make the situation appear less negative or more acceptable. (3) Goal disengagement, the withdrawing of effort and commitment from a goal that is perceived as unattainable. (4) Goal re-engagement, the identification, commitment to and pursuing of new goals, in addition to or instead of other goals.

The overall objective of our study was to examine domain-specific goal management in arthritis patients. To reach this objective, we conducted two studies. The first was to develop vignettes that reflect a realistic situation in which a valued goal of an arthritis patient is threatened. The vignette instrument—consisting of situation-specific hypothetical stories—examines contextual or domain-specific goal management in polyarthritis patients and expands existing questionnaires. Use of both measures in future research may facilitate the understanding of how adaptive coping moderates the influence of stressors on well-being. Our second objective was to use the vignettes to study the goal management strategies that patients create and prefer when presented the arthritis-specific situations in the vignettes. To study the applicability of the integrated model of goal management in practice, the strategies from this model were used to categorize the answers provided by respondents and to investigate whether these strategies capture the provided reactions.

Our objective was to develop a pool of vignettes that could be applied to several situations and populations (Part 1). The vignettes should contain threatened goals of arthritis patients specific to domains that may be affected by arthritis. Arthritis patients should assess the vignettes as recognizable and realistic. After the vignettes were composed and evaluated, a subset of vignettes was chosen to study patients’ reactions to the vignettes (Part 2). Our interest in this second part was mainly the applicability of the vignettes to study goal management strategies of arthritis patients. For this purpose, we chose the most generic vignettes for our subset, as not all vignettes were relevant and applicable for this sample of arthritis patients. In Part 2, we had the following questions: (1) Are the four goal management strategies; goal maintenance, goal adjustment, goal disengagement, and goal re-engagement, recognizable in the answers? (2) Are the four strategies exhaustive? (3) Do the strategies that the respondents mention and prefer differ between the domains? In addition, we added an “open vignette”, in which respondents were asked to describe one of their own situations in which a goal was threatened due to arthritis. This additional vignette was used to study, in an explorative way, the themes and domains people mentioned. The study was approved by the internal review board of the Faculty of Behavioural Sciences at the University of Twente.

Our overall objective was to study domain-specific goal management in arthritis patients. In the first part of the study, 11 vignettes—situation-specific hypothetical stories in which the main character encounters a problem with a valued goal due to arthritis—were developed. The vignettes were found to be face-valid, that is, respondents found the situations and the impact of arthritis described in the vignettes understandable, realistic, and recognizable.

The second part of the study focused on the solutions given by patients with polyarthritis to resolve situations described in a subset of the vignettes. The goal management strategies, including goal maintenance, goal adjustment, goal disengagement, and goal re-engagement, were recognized in a large majority of the solutions. Only 10 % of the solutions could not be coded as one of the four pre-defined strategies. No new or other goal management strategy could be recognized in these unclassifiable answers, however, two types of responses clearly emerged. The first type consisted of comments on the applicability of the vignettes, and the second type was composed of comments showing that respondents did not understand the instructions. From these results, it can be concluded that the four strategies are exhaustive in response to the vignettes. This outcome supports the use of the integrated model of goal management in examining goal management in arthritis patients.

Overall, the strategies of goal maintenance, goal adjustment, and goal disengagement were frequently mentioned in all three domains. However, some differences in mentioned and preferred goal management strategies could be identified between the domains. While goal re-engagement was mentioned as a solution in a quarter of the responses to the social vignette, this strategy was rarely mentioned in response to the other two vignettes. The most popular strategies in the social domain were goal adjustment, i.e., still participating but less fanatically, and re-engagement, i.e., assuming another role in the event, for example by joining the organizing committee. On the other hand, maintenance of goals was less often mentioned in the social vignette in comparison with the other two vignettes, perhaps because adjusting goals and re-engaging in new goals were seen as acceptable alternatives in this particular vignette. Limitations in the social domain can provoke an increase in depressive symptoms [41] which may explain why people devise many different ways in order to remain involved in a social activity like a Family Day, either by scaling down or by searching for alternative social goals. In contrast, both in the leisure domain and the independent functioning domain, maintaining goals by customizing the environment and using assistive devices was most popular. Goal disengagement was mentioned in all three vignettes, but overall less preferred than the other strategies. One possible explanation for the unpopularity of disengagement is that the striving for personal goals is important for well-being and identity [39, 40]. It seems that people would rather try to adapt their personal goals than disengage from them despite serious limitations or problems that they might face when attempting to achieve the goal.

Earlier research revealed positive relations of adjusting threatened goals with the well-being of patients with arthritis [4]. Also for maintaining goals and re-engagement in goals, clear positive relations to successful adaptation were found [4, see also 49]. The main conclusion of the study of Arends et al. [4] was the importance of flexibility in the management of goals. The present study showed that people could come up with various strategies in their solutions. Future studies should reveal how people who experience threatened goals due to arthritis select and apply goal management strategies and how effective those strategies are for them.

An additional open vignette was used to study in an explorative way the themes and domains people might mention. An open vignette can also be seen as a way to receive feedback on the completeness of the domains in the set of vignettes developed in Part 1 of this study. From the analysis of the topics mentioned in the open vignettes, it appeared that people did not find any specific domain lacking from the developed vignettes. In fact, the functional limitations and domains mentioned by the participants corresponded to the content of the complete set of vignettes developed in the first part of this study. Therefore, we concluded that our set of vignettes is exhaustive. Two minor themes that were mentioned were similar to themes found in other studies, that is, firstly some respondents described experienced stigma by others [2, 51, 52], and secondly, respondents mentioned keeping positive as a recommendation to other patients [30, 53]. Those two themes also appeared in the unclassifiable answers to the first three vignettes. Obviously, these themes are important for a number of respondents.

Some critical comments can be given on the study. First is the absence of the work domain in the present set of vignettes. Clearly the (in)ability to work can be an important factor for arthritis patients, as problems with work due to arthritis can negatively influence quality of life [54], family income, status, and the availability of social support [28]. However, since employment status among polyarthritis patients greatly differs, it was difficult to develop a work-related vignette that would be recognizable to the majority of intended respondents. It would be worthwhile in future research to develop a vignette on full-time work for the subgroup of respondents that are working full time.

During the development of the codebook, it became clear that precision of recognition of goal management strategies was closely related to a clearly defined goal. For example, in the Family Day vignette, the threatened goal was ambiguous, and therefore, some answers were difficult to interpret and code. This shows that despite the use of vignettes, some lack of clarity unfortunately still exists with regard to the goals people had in mind when answering. Consequently, future studies should clearly define the threatened goal in the vignette and ask respondents already in the development process—for example, via cognitive interviewing techniques—for their interpretation of the threatened goal in the story.

In addition, the content of the Family Day vignette may not be representative of all social situations. The presented threatened goal in this vignette was not the quality of social relations, but rather the participation in a social activity. This should be kept in mind when interpreting the results of this study. Also, a selection of three vignettes was used to study their applicability with a large sample of patients. It is possible, therefore, that some respondents could not identify with the chosen selection. Future studies could use all the vignettes, in order to study more domain-specific goal management in patient populations. We chose not to analyze the given solutions per person, but to study the general patterns of strategies named by all the respondents. The responses of people who provided the maximum of six solutions thus counted more heavily than those who reported a smaller set. However, we were interested in general patterns and not in preferences for goal management strategies per individual.

Further research could offer more insight into the roles that both personal traits and characteristics of the situation play in the deployment of goal management strategies. Also, one can imagine that people in one life stage are rather more inclined to release goals in certain domains than people in other life stages. Similarly, people with severe functional limitations possibly make different choices than people who experience less limitations or disease severity. The vignettes can be a useful method for future research into differences in domain-specific goal management between groups of respondents. Further studies should focus on the predictive value of the vignettes for successful adaptation. Likewise, a comparison between dispositional questionnaires and domain-specific vignettes will give insight into the construct validity.

The developed vignettes can be used to study how arthritis patients cope with threatened goals in specific domains from a patient’s perspective. The vignettes were found to be face-valid, and the replies to the vignettes could be coded using a codebook. The use of a detailed codebook made it possible to apply the vignettes to a large sample of respondents. Responses to the developed vignettes provided valuable information about domain-specific goal management. Results showed that the preferences for goal management strategies differ per domain, emphasizing the importance of the addition of a situation-specific instrument. Finally, this study showed that using vignettes for measuring domain-specific goal management is a valuable addition to the existing questionnaires that measure dispositional goal management.