Pamela Martin-Lynch

Background: People with multiple sclerosis (MS) have unique needs during a disaster, increasing preparation requirements. The content and patient-level suitability of disaster preparation tools is unknown. This scoping review aimed to determine the range and content of disaster preparation resources that are freely available online and suitable to assist people with MS.

Methods: Resources were identified via the Turning Research Into Practice medical database, Google, and disability-related websites. The included resources were disability specific and have been published since 2017. Resources were inductively analyzed and presented according to the target audience and themes. Findings were compared with stakeholder preferences.

Results: Fifty-nine resources were identified, targeting carers (27.1%), health care professionals (10.2%), and people with disabilities (89.8%). Resource content themes were advanced planning, informing others, practical preparations, and review. Consumer involvement was reported in 2 resources. Stakeholder preferences for disaster preparedness content were not well reflected in the resources.

Conclusions: The review identified online disaster preparedness resources suitable for people with MS and highlighted important gaps. More inclusive resources can be created with consumer involvement in design. Identified themes inform professionals about resources to recommend to patients based on their needs. Health care professionals can aid preparation by addressing resource gaps, particularly regarding health condition management.

Background: Personal caregivers including partners and families play a critical role in supporting persons with MS, including engagement in health behaviours. The role and challenges of carer burden are acknowledged in the research, yet there is less research on what helpful caregiving looks like, what resources and qualities are needed to promote it, and what barriers may emerge.

Methods: In this qualitative study, we explored these questions through interviews with 27 participants in Australia (10 persons with MS, 10 carers, and 7 MS service providers).

Results: All groups described personal qualities of helpful caregiving that would typically align with compassionate care, including patience, knowledge and understanding, empathy, and being non-judgmental. In supporting health behaviours in persons with MS, this translated into caregiving actions such as encouraging autonomy, shared decision making and working together, openness in communication, and listening with attention. Participants identified tensions in caregiving such as managing the balance between providing enough support with encouraging independence, as well as balancing the commitment to caregiving with the need for self-care. Caregivers also recognised personal barriers to helpful caregiving such as self-criticism and guilt, lack of time, energy, and support, and identified resources that would facilitate helpful caregiving including attending to carer wellbeing, managing difficult emotions, seeking support and connection, and respite.

Conclusions: These findings may help to inform the development of skills and resources to support carer wellbeing as well as supporting care for persons with MS.

Objective
The COVID‐19 pandemic continues to impact communities around the world. In this study, we explored the COVID‐19 experiences of persons with multiple sclerosis (MS) and carers.

Methods
Using a qualitative approach, interviews were undertaken with 27 participants residing in Australia (10 persons with MS, 10 carers and 7 MS service providers). Demographic and background data were also collected. Interviews were analysed using an inductive iterative thematic analysis.

Results
Across all groups, participants consistently recognized pandemic challenges and impacts for persons with MS and carers, especially due to disruption to routines and services. Emotional and mental health impacts were also highlighted, as anxiety, fear of contracting COVID‐19 and stress, including relationship stress between persons with MS and carers and family members. Some persons with MS also mentioned physical health impacts, while for carers, the challenge of disruptions included increased demands and reduced resources. In addition to acknowledging challenges, persons with MS and carers also gave examples of resilience. This included coping and adapting by finding new routines and creating space through rest and breaks and through appreciating positives including the benefits of access to telehealth.

Conclusion
Additional support is required for persons with MS and carers in navigating the impacts of COVID‐19 as the pandemic progresses. In addition to addressing challenges and disruptions, such support should also acknowledge and support the resilience of people with MS and carers and enhance resilience through supporting strategies for coping and adaptation.

Patient and Public Contribution
Service user stakeholders were consulted at the beginning and end of the study. They provided feedback on interview questions and participant engagement, as well as service user perspectives on the themes identified in the current study. Participants were provided with summaries of key themes identified and invited to provide comments.

Lurking on the fringes of university culture are academic identities that do not fit into the usual disciplinary communities. Aiming to explore the experience of ‘being academic’ when not linked directly to a discipline, this paper examines the stories of a diverse group of SoTL scholars who work in a centralised multi-campus academic skills support centre in an Australian university. Framed as group auto-ethnography, the paper inquires into the everyday experience of these academics through narrative analysis of multiple first-person accounts and makes apparent the monstrousness of de-affiliated academic identities. Despite diverse disciplinary backgrounds, the author-participants found that they now shared a tripartite academic identity formed through the negotiation of three roles: the teacher, the disciplinarian, and the educational researcher. Using the chimaera, a mythical three-headed monster as an organising metaphor, this paper aims to provide agency and visibility for often under-represented and unacknowledged academic identities.