Spiritual guides: supporting adults who nurture the spirituality of children

This research considers the role of those who support voluntary youth leaders in their responsibility to nurture spiritual development in children and young people. It discusses particularly those who work in organisations with an ethos of supporting such spiritual development and at the same time of welcoming members of many faiths and encouraging their full participation in their various faith traditions. The specific context of the research is the work of the Guide Movement and, in particular, of Girlguiding in the United Kingdom. The research addresses the current challenges but also the enormous value of providing for young people a multi-faith space in which it is genuinely ‘OK to do God’. It discusses the issues which leaders are raising and some suggestions which trainers have made for addressing these.

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.