Original article
Room for Improvement: Patient, Parent, and Practitioners' Perceptions of Foot Problems and Foot Care in Juvenile Idiopathic Arthritis

Presented to the European League Against Rheumatism, June 10–13, 2009, Copenhagen, Denmark.
https://doi.org/10.1016/j.apmr.2012.07.007Get rights and content

Abstract

Hendry GJ, Turner DE, Lorgelly PK, Woodburn J. Room for improvement: patient, parent, and practitioners' perceptions of foot problems and foot care in juvenile idiopathic arthritis.

Objective

To explore the perceived impact of disease-related foot problems and foot care in juvenile idiopathic arthritis (JIA) from the perspectives of patients, parents, pediatric rheumatologists, and health professionals.

Design

A qualitative study using an interpretative phenomenological approach.

Setting

Outpatients department, public health service children's hospital.

Participants

Patients (N=15; 4 adult patients, 2 parents of children with JIA, 3 pediatric rheumatologists, and 6 health professionals) from 2 National Health Service rheumatology centers (1 pediatric and 1 adult).

Interventions

Not applicable.

Main Outcome Measures

Qualitative outcomes were participants' perceptions elicited using semistructured interviews (telephone or face-to-face) and focus groups using an interpretative phenomenological approach. A data-driven inductive approach to coding and theme development was adopted for transcript analysis.

Results

Participants volunteered to take part in a total of 7 interviews and 2 focus groups. The analysis revealed 6 key themes related to the impact of foot problems and perceptions of foot care from respective groups. These were the following: (1) pain, (2) mobility impairment, (3) reduced ability to perform activities of daily living, (4) footwear difficulties, (5) poor referral pathways/delayed access to care, and (6) lack of evidence in support of conservative foot care.

Conclusions

Several areas for development of foot care services were identified including a need for improved referral pathways, shorter waiting times for initial consultations, greater attention to patient compliance, and a need for better evidence in support of customized foot orthoses. Several key foot health-related outcomes were identified, which may be of importance for measuring therapeutic response to foot-related interventions.

Section snippets

Design

A mixed qualitative methodology was selected as a pragmatic approach to exploring perceptions of foot problems and foot care in JIA. The mixed qualitative methodology included focus groups, face-to-face interviews, and telephone-based interviews. An interpretative phenomenological approach (IPA) was adopted to explore perceptions of foot problems and foot care for people with JIA.14 An IPA is centered on the exploration and understanding of lived experiences and can be applied to answer

Participant Data

Four adult patients (1 man, 3 women; aged 17–33y) and 2 parents (both mothers), 1 of a 7-year-old girl with JIA, and 1 of a 9-year-old girl and 17-year-old boy with JIA consented to participate. Three pediatric rheumatologists (1 man, 2 women), and 6 health professionals (1 man, 5 women) consented to participate. A total of 15 individuals had participated when thematic analysis saturation was achieved (summarized in table 1). Six reoccurring themes emerged from the data.

Pain

When respondents were

Discussion

Patients', parents', and care providers' views of foot problems in JIA are that they appear to impact significantly on mobility and the ability to perform routine day-to-day activities, with pain being the most important foot-related disease manifestation. It would appear that foot pain can lead to feelings of depression, isolation, and a reduced ability to participate in everyday activities such as attending school/work, socializing, and physical activity. Previous research has demonstrated

Conclusions

Exploration of participants' perspectives and experiences of a foot care service have highlighted that convenient referral pathways, short waiting times for initial consultation, patient compliance, and evidence of effectiveness of FOs are seemingly important issues to address. Emphasis on improving pain levels, mobility, ability to perform routine daily activities, and footwear choices appear to be key outcomes for measuring therapeutic response to foot-related interventions.

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  • Cited by (0)

    Supported by Arthritis Research UK (grant no. 18076, 17832).

    No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.

    In-press corrected proof published online on Sep 7, 2012, at www.archives-pmr.org.

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