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.

This chapter outlines the background and change that has taken place in higher education systems in both the UK and Australia. It outlines the move to a mass system of university participation across a number of countries and describes the more recent focus upon widening access to those groups previously under-represented in the student body. A case is made for why examining the experiences, motivations and aspirations of the mature-male students is important now and some findings from international research are shared. The parameters, issues and challenges of the study are outlined, key terms defined and the chapter concludes with an outline of the book’s structure.

The reasons for a later entry to university are explored in the first part of this chapter. The differences in the Australian and the UK school systems are explained, and the varying points at which participants completed or withdrew from compulsory education are described. The chapter then looks at some of the decisions that the men made relating to employment or pursuing technical qualifications and why, at that stage, university was not seen as a potential or viable option. Antipathy to school and an unsatisfactory school experience are considered through the lenses of class, family culture, gendered expectations and masculine identities. The chapter ends with the voice of Cedric which supports the view that complexity is inherent in all constructions of men’s experience here.

This chapter considers those reported motivations to study that are most closely connected to pursuing learning for its own sake. This theme is considered and explored through the stories of two Australian students, Alain and Rick, and one UK student, Peter. The students’ narratives reveal that age, past educational experience and circumstances all played a part in what led to study at this point in their lives. Issues emerge with some of the ideas used to frame student motivations and aspirations and, although there are areas of commonality with mature female students’ reporting, societal expectations of men and women highlight some differences.

This chapter provides some final commentary on the study as a whole including the diversity of the men and their stories. The connections to mature women students’ access and experience of university study are discussed and summarised. The challenges that mature-age male students encountered are re-visited and the successes, as reported by the men, also. In the final part of the chapter, a number of recommendations are made in line with findings from the study. These include fostering social networks and communication with and between mature-age students; teaching and learning approaches, curricula and resources; proactive support services and meaningful contact with academic staff.

At the beginning of the chapter, the adjustment to study is discussed. Those factors which emerged as likely predictors of successful study at this level are explored using men’s reporting of their experience of success at school and length of time between any other formal learning and starting their degree programme. Other aspects relating to expectations, persistence, effective study skills and the value of Access/bridging courses are discussed. The chapter then looks at the challenges and concerns that the men report relating to learning and teaching; lack of time and money; lack of confidence and stress. Men’s views on their future and their pleasure and surprise at how much they are enjoying their studies brings the chapter to a close.

This book explores the unique set of challenges faced by mature-age male undergraduates as they adapt to university study. The authors examine the motivations of mature male students for enrolling in higher education and their aspirations for life after graduation, in doing so filling a crucial gap in the current literature. Later access to higher education carries numerous benefits, including improved social mobility: it is therefore paramount to understand why men tend to be underrepresented among mature students. Exploring the intersections of socioeconomic status, ethnicity, culture and gender, and paying careful attention to the stories of the students themselves, the authors provide a thought-provoking analysis of an underrepresented student group. The book will be of interest and value to students and scholars of mature-age male students, and aspirations and motivations within higher education more generally.

This chapter reports on mature-age male students’ motivations and aspirations in relation to employment and undertaking a university degree. Delving more deeply into these stories, it became apparent that, for most men, such work-related motivations were very closely linked to a number of more personal reasons. These reasons are then explored in more detail and a number of strands emerge that are linked to educational experience, family, self-investment and self-direction, and life-events as catalysts for change. The men’s voices are forefront as the chapter draws to a close.