Paediatric Inflammatory Bowel Disease Nurses’ Experiences of using the Paediatric Inflammatory Bowel Disease Patient Held Record in Clinical Practice.

Abstract

Background
The Paediatric Inflammatory Bowel Disease Patient Held Record (PIBDPHR) is a tool that was initially
conceptualised to enhance the care and education of children with IBD attending Alderhey Children’s Hospital. The PIBDPHR was adopted as a national project by the RCN/BSPGHaN Paediatric IBD nurses group. A literature review was performed and no studies were identified on using a PHR in PIBD. Therefore a study was devised to develop an understanding of how the PIBDPHR was used in practice from the perspective of paediatric IBD
nurses.

Methods
26 paediatric clinical nurse specialists, who participated in the national adoption of the PIBDPHR were identified
to take part in a two phased mixed methods study, of which 5 had left their post and 1 was ineligible. Only 1 nurse per paediatric IBD service was invited to participate.
Phase 1 - An e-survey was sent to the eligible nurses (N=20). The survey had 3 sections – demographics, service use and challenges/benefits/solutions. were invited to self-select to participate in Phase 2. Data gathered in Phase 1 was used to inform Phase 2 of the study.
Phase 2 - Interviews with six nurses focused on gaining a deeper understanding and allowed an interrogation of
the responses given in phase 1. Data were analysed using descriptive statistics and thematic analysis, as
appropriate.

Results
Phase 1
12 Nurses (60%) completed the e-survey although 1 nurse did not receive any copies of the PIBDPHR. The
PIBDPHR was used for newly diagnosed patients (100%), patients who had difficult to manage disease (91%), patient and parent education (64%) and transitional patients (55%).
The nursing challenges in implementing the PIBDPHR included remembering to use the record (55%) and the
time involved in using it (36%). Barriers described by the participants included engaging medical staff in their use (45%) and patients forgetting to bring the record to clinic (64%).

Phase 2
6 participants (55%) self-selected to participate in Phase 2.
The PIBDPHR was found to be a good record for blood monitoring (100%), and gave the opportunity to develop a consistency for information giving (100%). 83% of participants cited the rationale for using the PIBDPHR was the need to empower patients. When interviewed in Phase 2 there was an acknowledgement by 5 participants that they would use the PIBDPHR in more patients and be less selective about who received copies if there was more availability of the PIBDPHR.
100% of the nurses interviewed volunteered to participate in further development of the PIBDPHR.

Conclusions
The nurses’ experience of using the PIBDPHR was to empower the patients; this was done primarily by targeting newly diagnosed patients and patients who required complicated disease management.
Future development of the PIBDPHR will take into consideration the barriers and challenges that have been identified in this study to produce a PIBDPHR that remains relevant to the PIBD population.