Parent Experiences with Paediatric Allergy Pathways in the West Midlands: A Qualitative study. (2019)

Type of publication:
Journal article

Author(s):
Diwakar, Lavanya; Cummins, Carole; Hackett, Scott; *Rees, Martyn; Charles, Lynette; Kerrigan, Caroline; Creed, Helen; Roberts, Tracy

Citation:
Clinical and experimental allergy : journal of the British Society for Allergy and Clinical Immunology; Jan 2019 Volume49, Issue3, Pages 357-365

Abstract:
BACKGROUND The prevalence, severity and complexity of allergic diseases has been increasing steadily in the UK over the last few decades. Primary care physicians are often not adequately trained in allergy management whilst specialist services for allergy are scarce and heterogeneous. Services, therefore, have been unable to meet the rising demand. This is particularly true for paediatric allergy services in the UK. OBJECTIVE To understand parent experiences with paediatric allergy pathways in the West Midlands (WM) region of the UK. METHODS Parents of children aged between 0-16 years from the WM region were recruited opportunistically until thematic saturation was achieved. 18 semi-structured interviews were carried out and transcribed verbatim. Data were analysed on NVivo software using the framework method. Themes were identified from the transcripts as well as from existing literature. RESULTS Parents highlighted numerous issues related to allergy services in the region including difficulties with being taken seriously by their physicians, problems with accessing healthcare and issues with information and the need for additional supportive care for allergies. CONCLUSIONS AND CLINICAL RELEVANCE Primary care for children with allergies in the West Midlands is disparate. Parents experience difficulties in accessing primary and secondary care services and also obtaining timely and appropriate information regarding their child’s allergies. Most parents were happy to be reviewed by either specialist nurses or by consultants in the hospital. Improving accessibility and availability of reliable information as well as provision of additional services (such as psychologists and dietetics) were highlighted by parents as being important to allergy services in the region. These findings can help inform future planning and commissioning of allergy services

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

Type of publication:
Conference abstract

Author(s):
*Diwakar L., Cummins C., Williams L., Sansom H., Kerrigan C., *Rees M., Hackett S., Lilford R., Roberts T.

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

Abstract:
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.