Dataset Information

Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study.

ABSTRACT:

Background

Encephalitis, characterised as inflammation of the brain tissue, is an important cause of acquired brain injury in children. Objective clinical outcomes vary significantly between affected patients, however they do not always correlate with quality of life as reported by parents. The aim of this study was to explore how parents experience and interpret outcomes in relation to their child who has been affected by encephalitis.

Methods

Data were derived from in-depth, semi-structured interviews, with 15 parents of 12 children and young people affected by encephalitis. Paediatric cases were identified from the retrospective arm of the research programme 'ENCEPH-UK-Understanding and Improving the Outcome of Encephalitis', and from the prospective UK childhood meningitis and encephalitis cohort study (UK-ChiMES, 2012 to 2016). Data were analysed thematically.

Results

Parents' perspectives on important outcomes for their child and family changed during the different stages of the encephalitis illness trajectory: from acute illness, recovery and rehabilitation, then reintegration into everyday life. Parents' understanding of their children's overall outcome was informed by their own experiences, involving comparisons with other children and reflections on their child's problems before, during and after the acute illness.

Conclusion

Outcomes in paediatric encephalitis need to be understood in terms of the context of the patient and family experience as well as the timeframe of recovery. The research highlights the need to include more patient, parent and/or carer reported outcome measures during patient assessment, and that assessment should be repeated during recovery as family concerns change. In the longer term, these parameters could be included in clinical and rehabilitation practice to further support child recovery.

SUBMITTER: Lemon J

PROVIDER: S-EPMC6746349 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Publications

Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study.

Lemon Jennifer J Cooper Jessie J Defres Sylviane S Easton Ava A Sadarangani Manish M Griffiths Michael J MJ Pollard Andrew J AJ Solomon Tom T Kneen Rachel R

PloS one 20190916 9

<h4>Background</h4>Encephalitis, characterised as inflammation of the brain tissue, is an important cause of acquired brain injury in children. Objective clinical outcomes vary significantly between affected patients, however they do not always correlate with quality of life as reported by parents. The aim of this study was to explore how parents experience and interpret outcomes in relation to their child who has been affected by encephalitis.<h4>Methods</h4>Data were derived from in-depth, sem ...[more]

PMID: 31525232

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Project description:BackgroundTask shifting is an effective model for increasing access to mental health treatment via lay counselors with less specialized training that deliver care under supervision. Mobile phones may present a low-technology opportunity to replace or decrease reliance on in-person supervision in task shifting, but important technical and contextual limitations must be examined and considered.ObjectiveGuided by human-centered design methods, we aimed to understand how mobile phones are currently used when supervising lay counselors, determine the acceptability and feasibility of mobile phone supervision, and generate solutions to improve mobile phone supervision.MethodsParticipants were recruited from a large hybrid effectiveness implementation study in western Kenya wherein teachers and community health volunteers were trained to provide trauma-focused cognitive behavioral therapy. Lay counselors (n=24) and supervisors (n=3) participated in semistructured interviews in the language of the participants' choosing (ie, English or Kiswahili). Lay counselor participants were stratified by supervisor-rated frequency of mobile phone use such that interviews included high-frequency, average-frequency, and low-frequency phone users in equal parts. Supervisors rated lay counselors on frequency of phone contact (ie, calls and SMS text messages) relative to their peers. The interviews were transcribed, translated when needed, and analyzed using thematic analysis.ResultsParticipants described a range of mobile phone uses, including providing clinical updates, scheduling and coordinating supervision and clinical groups, and supporting research procedures. Participants liked how mobile phones decreased burden, facilitated access to clinical and personal support, and enabled greater independence of lay counselors. Participants disliked how mobile phones limited information transmission and relationship building between supervisors and lay counselors. Mobile phone supervision was facilitated by access to working smartphones, ease and convenience of mobile phone supervision, mobile phone literacy, and positive supervisor-counselor relationships. Limited resources, technical difficulties, communication challenges, and limitations on which activities can be effectively performed via mobile phone were barriers to mobile phone supervision. Lay counselors and supervisors generated 27 distinct solutions to increase the acceptability and feasibility of mobile phone supervision. Strategies ranged in terms of the resources required and included providing phones and airtime to support supervision, identifying quiet and private places to hold mobile phone supervision, and delineating processes for requesting in-person support.ConclusionsLay counselors and supervisors use mobile phones in a variety of ways; however, there are distinct challenges to their use that must be addressed to optimize acceptability, feasibility, and usability. Researchers should consider limitations to implementing digital health tools and design solutions alongside end users to optimize the use of these tools.International registered report identifier (irrid)RR2-10.1186/s43058-020-00102-9.

Project description:INTRODUCTION:The burden of childhood mortality continues to be born largely by low-income and middle-income countries. The critical postdischarge period has been largely neglected despite evidence that mortality rates during this period can exceed inpatient mortality rates. However, there is a paucity of data on the paediatric discharge process from the perspective of the healthcare provider. Provider perspectives may be important in the development of an improved understanding of the barriers and facilitators to improving the transition from hospital to home. OBJECTIVES:To explore healthcare providers' and facility administrators' perspectives of the paediatric discharge process with respect to: (1) current procedures, (2) barriers and challenges, (3) ideas for change, (4) facilitators for change and (5) the importance of discharge planning. DESIGN:A qualitative exploratory approach using focus groups (14) and in-depth interviews (7). SETTING:This study was conducted at seven hospitals providing paediatric care in Uganda. RESULTS:Current discharge procedures are largely based on hospital-specific protocols or clinician opinion, as opposed to national guidelines. Some key barriers to an improved discharge process included caregiver resources and education, critical communication gaps, traditional practices, and a lack of human and physical resources. Teamwork and motivation to see improved paediatric transitions to home were identified as facilitators to implementing the ideas for change proposed by participants. The need for a standardised national policy guiding paediatric discharges, implemented through education at many levels and coupled with appropriate community referral and follow-up, was broadly perceived as essential to improving outcomes for children. CONCLUSIONS:Although significant challenges and gaps were identified within the current health system, participants' ideas and the identified facilitators provide a significant basis from which change may occur. This work can facilitate the development of sustainable and effective interventions to improve postdischarge outcomes in Uganda and other similar settings.

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Dataset Information

Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study.

Background

Methods

Results

Conclusion

Publications

Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study.

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