Exploration of the advanced preparation nurse‐mother role in care of children with chronic disease: A narrative inquiry

Abstract

Aim

To explore the lived experience of advanced preparation nurses (APNs) who are mothers (APN-mothers) as they seek care in the Emergency Department for a child with a chronic disease.

Design

Qualitative, Narrative Inquiry.

Methods

Narrative Inquiry was used to examine critical self-reflections of four (n = 4) APN-mothers. Directed by a question guide, participants engaged in the Narrative Reflective Process through metaphoric and artistic means.

Results

Participants identified salient challenges associated with their experiences. Narrative threads that emerged include feelings around being discovered, unfair expectations by healthcare providers, feelings of guilt and the tension from competing roles: APN and mother.

Conclusion

APN-mothers represent a unique population with enhanced knowledge, skills and judgement; however, they indicate that there is insufficient communication and interprofessional collaboration between parents and Emergency Department staff. Further research is needed to foster and improve therapeutic relationships between APN-mothers and healthcare providers.

Implications for the Profession and/or Patient Care

Findings can inform the development of family centred care guidelines for healthcare professional parents and their children.

Impact

This study explores the experiences of an understudied population. This research will impact APN-mothers, healthcare professionals in the Emergency Department as well as nursing students and researchers.

Reporting Method

EQUATOR guidelines and SRQR reporting method used.

Patient or Public Contribution

APN-mothers, caregivers and support persons of children with chronic disease enacted investigator-participant roles and were involved in each step of the study process. In addition, some patients (participants' children with chronic diseases) were included in data collected.

Healthcare professionals’ views on the most important outcomes for non-infectious uveitis of the posterior segment: A qualitative study

by Mohammad O. Tallouzi, David J. Moore, Nicholas Bucknall, Philip I. Murray, Melanie J. Calvert, Alastair K. Denniston, Jonathan Mathers

Background

Uveitis comprises a range of conditions that result in intraocular inflammation. Most sight-threatening uveitis falls into the broad category known as Non-infectious Posterior Segment-Involving Uveitis (PSIU). To evaluate treatments, trialists and clinicians must select outcome measures. The aim of this study was to understand healthcare professionals’ perspectives on what outcomes are important to adult patients with PSIU and their carers.

Methods

Twelve semi-structured telephone interviews were undertaken to understand the perspectives of healthcare professionals. Interviews were audio recorded, transcribed and thematically analysed. Findings were compared with the views of patients and carers and outcomes abstracted from a previously published systematic review.

Results

Eleven core domains were identified as important to healthcare professionals: (1) visual function, (2) symptoms, (3) functional ability, (4) impact on relationships, (5) financial impact, (6) psychological morbidity and emotional well-being (7) psychosocial adjustment to uveitis, (8) doctor / patient / interprofessional relationships and access to health care, (9) treatment burden, (10) treatment side effects, (11) disease control. Healthcare professionals recognised a similar range of domains to patients and carers but placed more emphasis on certain outcomes, particularly in the disease control domain. In contrast the range of outcomes identified via the systematic review was limited.

Conclusion

Healthcare professionals recognise all of the published outcome domains as patients/carers in the previous publication but with subtly differing emphasis within some domains and with a priority for certain types of measures. Healthcare professionals discussed the disease control and side effects/complications to a greater degree than patients and carers in the focus groups

Efecto de la dieta libre de gluten en adolescentes y adultos jóvenes con enfermedad celíaca: una revisión sistemática

Objetivo principal: analizar de manera sistemática la evidencia disponible sobre el efecto de la dieta libre de gluten en adolescentes y adultos jóvenes con enfermedad celíaca. Metodología: Para la elaboración de esta revisión sistemática se siguió con la formulación de una pregunta, establecimiento de criterios de inclusión y exclusión, desarrollo de estrategias de búsqueda, la selección de artículos para ser incluidos en la revisión, extracción de datos y síntesis de los datos. Resultados principales: Se observó en todos los estudios incluidos que los síntomas, así como la presencia de anticuerpos específicos, disminuyeron en las personas con Enfermedad Celiaca que se adhirieron a la dieta libre de gluten. Conclusión principal: Respecto al efecto de la dieta libre de gluten en la enfermedad celíaca, se puede decir que los pacientes celíacos tienden a mejorar en los síntomas de esta patología. Sin embargo, algunos pacientes pueden no mostrar una mejoría significativa.