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

Rheumatology Rheumatol Int (2015) 35:1895–1907 DOI 10.1007/s00296-015-3336-8 INTERNATIONAL ORIGINAL ARTICLE - FOOD FOR THOUGHT Exploring preferences for domain‑specific goal management in patients with polyarthritis: what to do when an important goal becomes threatened? Roos Y. Arends1 · Christina Bode1 · Erik Taal1 · Mart A. F. J. Van de Laar1,2 Received: 23 April 2015 / Accepted: 30 July 2015 / Published online: 12 August 2015 © The Author(s) 2015. This article is published with open access at Springerlink.com Abstract Usually priorities in goal management— intended to minimize discrepancies between a given and desired situation—are studied as person characteristics, neglecting possible domain-specific aspects. However, people may make different decisions in different situations depending on the importance of the personal issues at stake. Aim of the present study therefore was to develop arthritis-related vignettes to examine domain-specific goal management and to explore patients’ preferences. Based on interviews and literature, situation-specific hypothetical stories were developed in which the main character encounters a problem with a valued goal due to arthritis. Thirty-one patients (61 % female, mean age 60 years) evaluated the face validity of the newly developed vignettes. Secondly, 262 patients (60 % female, mean age 63 years) were asked to come up with possible solutions for the problems with attaining a goal described in a subset of the vignettes. Goal management strategies within the responses and the preference for the various strategies were identified. The 11 developed vignettes in three domains were * Roos Y. Arends Christina Bode Erik Taal Mart A. F. J. Van de Laar 1 Department of Psychology, Health and Technology, Arthritis Centre Twente, University of Twente, P.O. Box 217, 7500 AE Enschede, The Netherlands 2 Department for Rheumatology, Arthritis Centre Twente, Medisch Spectrum Twente, Enschede, The Netherlands found to be face-valid. In 90 % of the responses, goal management strategies were identified (31 % goal maintenance, 29 % goal adjustment, 21 % goal disengagement, and 10 % goal re-engagement). Strategy preference was related to domains. Solutions containing goal disengagement were the least preferred. Using vignettes for measuring domainspecific goal management appears as valuable addition to the existing questionnaires. The vignettes can be used to study how patients with arthritis cope with threatened goals in specific domains from a patient’s perspective. Domainspecific strategy preference emphasizes the importance of a situation-specific instrument. Keywords Adaptation · Threatened personal goals · Patient-perspective · Coping · Vignette · Rheumatoid arthritis Introduction 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 13 1896 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. 13 Rheumatol Int (2015) 35:1895–1907 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 (...truncated)