Amanda Wilkinson

A fatigue management programme for persons with multiple sclerosis: development, theory and practical considerations

Background: Fatigue in multiple sclerosis (MS) is what most interferes with usual activities such as self-care, child-care, work and community engagement and contributes to disability and depression. Fatigue intensifies the other symptoms of MS, thereby making everyday life more challenging. Self-management or cognitive behavioural approaches and programmes are argued to be effective for managing fatigue in MS. However, there was no such manualised or accessible approach available for people with MS in New Zealand (NZ). Objectives: This report outlines how people with MS in NZ were included, via Participatory Action Research (PAR), in the development of the fatigue self-management programme ‘Minimise Fatigue, Maximise Life’ (MFML), so that it had relevance and meaning to them. It also discusses the theories drawn on for developing the programme, and presents considerations for the programme for use in NZ and elsewhere. Major findings: Use of PAR facilitated a positive experience for people with MS, the end users of the programme. It enabled the principles of self-efficacy, self-management, and self-determination to underpin the programme via the sharing of knowledge through their partnership with healthcare professionals. However, the research undertaken to date suggests the need for more consideration of ways to support attendees to maintain behaviour change over time. Conclusions: PAR was a useful approach for developing the fatigue self-management programme. Future development of the programme could entail use of online technology to deliver the programme. Consideration for supporting ongoing behaviour change is required. Adaptation of the programme has potential for use with people with long-term conditions other than MS.

Using intervention mapping to design a self-management programme for older people with chronic conditions

Self-management programmes provide strategies to optimise health while educating and providing resources for living with enduring illnesses. The current paper describes the development of a community-based programme that combines a transdiagnostic approach to self-management with mindfulness to enhance psychological coping for older people with long-term multimorbidity. The six steps of intervention mapping (IM) were used to develop the programme. From a needs assessment, the objectives of the programme were formulated; the theoretical underpinnings then aligned to the objectives, which informed programme design, decisions on implementation, programme adoption and evaluation steps. Banduras social cognitive theory informed the methods and practical strategies of delivery. Among the features addressed with participants are transdiagnostic dimensions such as fatigue, pain, breathlessness, sleep disturbances. The programme utilises mindfulness to aid coping and ameliorate the psychological distresses associated with chronicity. Findings from an initial feasibility study and subsequent pilot assisted in conceptualising our programme. In conclusion, applying IM gave the planners confidence the programme is robust and evidence-based with clearly articulated links between the behavioural goals and design elements to obtain the desired outcomes.

Views of healthcare professionals on training for and delivery of a fatigue self-management program for persons with multiple sclerosis

Abstract Purpose: To explore the experiences and perspectives of the healthcare professionals who were trained to and delivered “Minimise Fatigue, Maximise Life” (MFML), a patient-centered group-based fatigue self-management program for persons with multiple sclerosis. Methods: A qualitative descriptive study with semi-structured individual interviews at two time points. Data were analyzed for themes. Six healthcare professional facilitators who were trained to and delivered “Minimise Fatigue, Maximise Life” participated in a first interview, and five in a second. Participants were all female, aged between 23 and 66 years old and either occupational therapists or physiotherapists. Results: Two themes were evident in the data. The first, “Reciprocity,” showed how the healthcare professionals were trained to deliver MFML, then reciprocated in the program delivery as active participants, which then provided feelings of personal reward and expansion of their usual practice. The second, “Enhancements,” encompassed suggested directions for future training and deliveries of the program. Conclusion: This study suggests that multidimensional patient centered interventions also benefit the healthcare professionals who provide them because it expands their practice. Healthcare professionals who recognize the benefits of innovative and patient-centered interventions, supports both the patients with whom they work, and adds value to the health services they provide. Implications for rehabilitation Healthcare professionals who undergo training to facilitate delivery of self-management programs, which are based in an empowerment model, report an enhancement or expansion of their traditional practice. An empowerment-based program delivered in a group situation encourages and facilitates people to draw on their own and peers’ knowledge and expertise to problem solve for self-management. Healthcare professional education should facilitate the healthcare professional’s learning, and ability and willingness to acknowledge the richness in knowledge and expertise held by their patients.

Disability facilitators’ views of their work with children with disability in South Africa*

Disability facilitators’ views of their work with children with disability in South Africa Hilda Mulligan, Lorna McCoy, Amanda Wilkinson, Joanne Sullivan, Eliana Kirk, Kristin Hastings, Clara Ibrahim, Jenny Hawke and Joanne Potterton School of Physiotherapy, University of Otago, Dunedin, New Zealand; Physiotherapist, Johannesburg, South Africa; were undergraduate students, School of Physiotherapy, University of Otago, Dunedin, New Zealand at the time of this study; Department of Physiotherapy, School of Therapeutic Sciences, University of the Witswatersrand, Johannesburg, South Africa