Parent experiences of paediatric allergy pathways in the West Midlands Region of the United Kingdom - A qualitative study (2016)

Type of publication:
Conference abstract

*Diwakar L., Cummins C., Williams L., Sansom H., Kerrigan C., *Rees M., Hackett S., Lilford R., Roberts T.

Allergy: European Journal of Allergy and Clinical Immunology, August 2016, vol./is. 71/(577)

Background: Almost all allergy care in the UK is provided by the publicly funded National Health Service (NHS). Services are deficient in most parts of the country at both primary and secondary level, with few regions having appropriate access to trained allergy clinical teams. The problem is especially acute for paediatric allergy services. Method: We are carrying out a qualitative study using in-depth, semi-structured interviews of parents purposively selected from two separate NHS Paediatric allergy clinics. All interviews are being audio-taped and transcribed anonymously. Analysis is by framework approach facilitated by NVivo software. Themes are being identified and alternate theories for findings will be sought using peer panels and literature searches. Interviews will be carried out until data saturation is achieved. Results: Preliminary analysis of 6 completed interviews has revealed a few emerging themes. Access to Primary Care services was variable with some parents expressing frustration at delays in obtaining appointments. Some of the mothers felt aggrieved that their 'gut reactions' regarding the well being of their child were often disregarded by Primary Care Physicians (PCPs). This was perceived strongly as 0being dismissed0 and made the mothers feel frustrated and often helpless with regards to taking care of their children. "I'd come out sometimes and I'd be so frustrated because I felt like, 'You weren't listening'. They just wouldn't listen to me. It was as if – you know, 'You're just an overreacting mom'." (P6) Even when the PCPs did not provide effective treatments, mothers were quite accepting of the treatment when they felt that their views were respected and 'listened to' " that's not eczema cream, so I thought that's not what I was expecting … but I can't really-you know -fault them for trying the different creams."(P7) Referral practices from Primary to Secondary Care also varied significantly with some parents facing frustrating delays with referral. Most of our interviewees found specialist clinics satisfactory, although some expressed discontentment over the usefulness of the consultation and followup processes. Conclusion: Parents experience considerable variation with regards to access, knowledge and attitude of PCPs in the WM region for children with allergies. Experiences with secondary care were largely favourable. In general, parents greatly valued being listened to and taken seriously by their clinicians.