Dilemmas of participation in everyday life in early rheumatoid arthritis: a qualitative interview study (The Swedish TIRA Project)

Sverker, Annette; Östlund, Gunnel; Thyberg, Mikael; Thyberg, Ingrid; Valtersson, Eva; Björk, Mathilda

doi:10.3109/09638288.2014.961658

Cited by 21 publications

(15 citation statements)

References 48 publications

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“…However, some of them may have taken up new leisure-time activities, replacing lost social contacts with new ones. Some may also have modified their style of performing activities to allow them to maintain their customary leisure-time activities [14,28]. Social contacts and social support may be maintained if the disease forces reduction in performing leisure-time activities, whereas being forced to completely give up may increase the risk of losing the contacts gained through the leisure-time activity.…”

Section: Discussionmentioning

confidence: 99%

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Effects of rheumatoid arthritis on household chores and leisure-time activities

et al. 2015

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The aim of the study was to determine household chores and leisure-time activities most affected by rheumatoid arthritis (RA) and to evaluate the perceived impact on performing these activities. Also, our aim was to estimate the required and received assistance for household chores. In an interview study via telephone, 124 patients with moderate-to-severe RA, visiting a tertiary-level dermatological clinic, listed spontaneously without predefined list the household chores and leisure-time activities that they considered were particularly affected by the RA. Ability to perform household chores and leisure-time activities were asked. The need for outside assistance with household chores and help received were also determined. Rheumatoid arthritis affected wide range of everyday household activities, with tasks related to cleaning of the house mentioned most often. Eleven of the categories out of 16 were similar to those included in the HAQ index. The majority of the patients (84.6 %) reported disadvantage in performing household chores because of RA. More than half of the patients (55.7 %) received assistance with household chores, women significantly more often than men (69.0 vs. 26.3 %, p < 0.01). Most of the household chores mentioned were physically demanding. Leisure-time activities listed by respondents as affected by RA were mostly related to sport. The majority of patients (77.2 %) had either reduced or completely given up at least one leisure-time activity. When estimating the total burden of the disease, the impact on both household chores and leisure-time activities should be taken into account.

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Section: Discussionmentioning

confidence: 99%

“…They also have considerable impact on maintaining and creating social relationships [14]. Three-quarters of patients with RA reported altered leisure-time activities in the 8 years after disease onset [15].…”

Section: Introductionmentioning

confidence: 99%

Effects of rheumatoid arthritis on household chores and leisure-time activities

et al. 2015

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“…[22,23]). A few studies have, in addition, related those findings to the HAQ, such as highlighting how context affects HAQ relevance [11], as discussed in Unnecessary items; noting the floor effect [12] as presented in Missing items; or seeing the HAQ as a mere representation of more complex activities [13], as shown in Capturing holistic perspectives. The last of the above studies [13] made the point that tasks detailed in individual HAQ items sometimes are not themselves important but rather pose the challenge of working around them.…”

Section: The Literature Provides a Similar Picture Of Haq Deficienciesmentioning

confidence: 99%

“…These studies mainly illustrated patients' perceptions of existing items rather than investigating which functional aspects patients would find relevant to measure. Several qualitative studies mentioned limitations of the HAQ from the patient's perspective [10][11][12][13]. However, these studies did not have the specific aim to explore the HAQ and, consequently, did not show how patients experienced the instrument or what consequences the use of the HAQ may generate.…”

Section: Introductionmentioning

confidence: 99%

Persons with Rheumatoid Arthritis Challenge the Relevance of the Health Assessment Questionnaire: A Qualitative Study of Patient Perception

Ebbevi

Essén

Forsberg

2017

Preprint

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Background. The Stanford Health Assessment Questionnaire-Disability Index (HAQ) is widely used to measure functional ability in persons with Rheumatoid Arthritis (RA). The instrument was developed with limited involvement from persons with RA, and their perception of the instrument has not been studied in depth. The aim of this study was to explore how persons with RA experience the use of the HAQ in care.Methods. Forty persons with RA were purposefully recruited to participate in semi-structured interviews. The interviews were then analyzed qualitatively using thematic analysis.Results. The participants questioned the relevance of the HAQ but nevertheless experienced that the instrument had a profound effect on their understanding of health and how care is delivered. The analysis resulted in three themes: Problems with individual items, meaning of the summative score, and effects on care and health perceptions. Conclusions.To make the HAQ relevant to persons with RA, it needs to be revised or to include an option to select items most meaningful to the respondent. To ensure relevance, the HAQ update should preferably be cocreated by researchers, clinicians and persons with RA.

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“…Patients are diagnosed across all ages and the mean incidence ages vary between 56 and 58 years (Thyberg, Dahlström, Björk, Arvidsson, & Thyberg, 2012;Verstappen & Symmons, 2011). The introduction and use of pharmacological treatments in the early stages of the condition in combination with new biological drugs have led to reduced disease activity and less disability (Scott et al, 2010;Sverker et al, 2015). However, RA is still associated with disabilities and reduced quality of life (Söderlin, Lindroth, & Jacobsson, 2010;Sokka et al, 2009;Thyberg et al, 2012;Ziegler et al, 2010).…”

Section: Clinical Descriptionmentioning

confidence: 99%

Living in the Present

et al. 2015

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This article presents the findings from a qualitative research project exploring eight women's experiences of living with rheumatoid arthritis (RA). Through semistructured interviews, the women provided insights into the physical, emotional, and social impacts of RA and the "work" involved in negotiating its influence in the everyday life. In narrating their experiences of adapting to RA, the women express a common desire for "normalcy," to return to a time and space before the disruption of RA. The women's accounts also emphasized the interrelatedness between bodily experience and constructions of self, highlighting the corporeal nature of RA and the constant shaping and reshaping of personal meanings and values.

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Dilemmas of participation in everyday life in early rheumatoid arthritis: a qualitative interview study (The Swedish TIRA Project)

Cited by 21 publications

References 48 publications

Effects of rheumatoid arthritis on household chores and leisure-time activities

Effects of rheumatoid arthritis on household chores and leisure-time activities

Persons with Rheumatoid Arthritis Challenge the Relevance of the Health Assessment Questionnaire: A Qualitative Study of Patient Perception

Living in the Present

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