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.

A cyber exercise post assessment framework: In Malaysia perspectives

Critical infrastructures are based on complex systems that provide vital services to the nation. The complexities of the interconnected networks, each managed by individual organisations, if not properly secured, could offer vulnerabilities that threaten other organisations’ systems that depend on their services. This thesis argues that the awareness of interdependencies among critical sectors needs to be increased. Managing and securing critical infrastructure is not isolated responsibility of a government or an individual organisation. There is a need for a strong collaboration among critical service providers of public and private organisations in protecting critical information infrastructure. Cyber exercises have been incorporated in national cyber security strategies as part of critical information infrastructure protection. However, organising a cyber exercise involved multi sectors is challenging due to the diversity of participants’ background, working environments and incidents response policies. How well the lessons learned from the cyber exercise and how it can be transferred to the participating organisations is still a looming question. In order to understand the implications of cyber exercises on what participants have learnt and how it benefits participants’ organisation, a Cyber Exercise Post Assessment (CEPA) framework was proposed in this research. The CEPA framework consists of two parts. The first part aims to investigate the lessons learnt by participants from a cyber exercise using the four levels of the Kirkpatrick Training Model to identify their perceptions on reaction, learning, behaviour and results of the exercise. The second part investigates the Organisation Cyber Resilience (OCR) of participating sectors. The framework was used to study the impact of the cyber exercise called X Maya in Malaysia. Data collected through interviews with X Maya 5 participants were coded and categorised based on four levels according to the Kirkpatrick Training Model, while online surveys distributed to ten Critical National Information Infrastructure (CNII) sectors participated in the exercise. The survey used the C-Suite Executive Checklist developed by World Economic Forum in 2012. To ensure the suitability of the tool used to investigate the OCR, a reliability test conducted on the survey items showed high internal consistency results. Finally, individual OCR scores were used to develop the OCR Maturity Model to provide the organisation cyber resilience perspectives of the ten CNII sectors.