Little is known of the day-to-day experience of living with motor neurone disease from the perspective of those who have it, apart from what can be found in personal accounts such as those published on web pages. In this study, which was informed by phenomenology, seven people living in an urban setting in New Zealand were asked to describe their experiences. This report focuses on the study findings that related specifically to disruption to occupation. It describes how early changes in occupational performance alerted the participants to the fact that something was wrong. The findings also showed the pervasive impact of an awkward and unreliable body on participation in occupations that gave meaning to life, expressed identity and filled time. Issues of how the family's world was changed, the introduction of assistive devices into their homes and the betrayal of trust were also powerfully evident in participants' stories. Although the findings are broadly consistent with those of previous studies, the disruption to occupation and the consequent role losses are new findings. Further research into the impact of the loss of participation in occupation, the ways in which people are perceived when occupations are disrupted and the experience of having occupations taken away prematurely is recommended.

Background Pulmonary rehabilitation (PR) is an effective intervention for the management of people with chronic respiratory diseases, but the uptake of and adherence to PR programs is low. There is potential for mobile health (mHealth) to provide an alternative modality for the delivery of PR, overcoming many of the barriers contributing to poor attendance to current services. Objective The objective of this study was to understand the needs, preferences, and priorities of end users for the development of an adaptive mobile PR (mPR) support program. Methods A mixed methods (qualitative and quantitative) approach was used to assess the needs, preferences, and priorities of the end users (ie, patients with chronic respiratory disorders) and key stakeholders (ie, clinicians working with patients with chronic respiratory disorders and running PR). The formative studies included the following: (1) a survey to understand the preferences and priorities of patients for PR and how mobile technology could be used to provide PR support, (2) ethnographic semistructured interviews with patients with chronic respiratory disorders to gain perspectives on their understanding of their health and potential features that could be included in an mPR program, and (3) key informant interviews with health care providers to understand the needs, preferences, and priorities for the development of an mPR support program. Results Across all formative studies (patient survey, n=30; patient interviews, n=8; and key stakeholder interviews, n=8), the participants were positive about the idea of an mPR program but raised concerns related to digital literacy and confidence in using technology, access to technology, and loss of social support currently gained from traditional programs. Key stakeholders highlighted the need for patient safety to be maintained and ensuring appropriate programs for different groups within the population. Finding a balance between ensuring safety and maximizing access was seen to be essential in the success of an mPR program. Conclusions These formative studies found high interest in mHealth-based PR intervention and detailed the potential for an mPR program to overcome current barriers to accessing traditional PR programs. Key considerations and features were identified, including the importance of technology access and digital literacy being considered in utilizing technology with this population.

Background: Pulmonary rehabilitation (PR) has been proven effective but is not well accessed due to transport, time, cost, and physical limitations of patients. We have developed a mobile phone-based PR program (mPR) that could be offered as an alternative for those unable to attend in-person. This was developed following formative research with patients, their families and clinicians. mPR has a core text message program plus an app that includes an action plan, exercise videos, lung visualization, symptom score questionnaire and 1-min sit-to-stand test.Aims: To determine the feasibility of delivering pulmonary rehabilitation by mobile phone.Methods: A 9-week non-randomized (1-arm) pilot study was conducted. Participants were 26 adults with chronic obstructive pulmonary disease plus four family members, who were offered participation at first assessment or during group PR sessions. Outcomes included satisfaction, engagement with the program, and perceived impacts.Results: Eight people (31%) opted for text messages only, and 18 (69%) chose text messages plus the app. Three people stopped the program early, 20 said they would recommend it to others, 19 said it helped them to feel more supported, 17 said it helped them to change their behavior.Conclusion: It is feasible to deliver PR support via mobile phone, including exercise prescription and support. Our mPR program was appreciated by a small number of people with chronic respiratory disorders and family members. Suggestions for improvements are being used to inform the further development of the program, which will then be tested for effectiveness. Registered with the Australia New Zealand Clinical Trials Registry ACTRN12619000884101 (www.anzctr.org.au).

This interpretive study aimed to shed light on the experience of living with motor neurone disease (MND). Guided by phenomenological methodology, it involved semi-structured interviews with 4 women and 3 men diagnosed with MND, living in their own home in a major city in New Zealand. Three themes emerged; the wobbly body, doing and being, and changed world — changed future. The themes reveal the impact of living with a body that cannot follow commands and is increasingly unreliable, of losing the capacity to engage in valued activities, and the complexity of receiving care from family members and health-care workers. Implications include the need to further support individual’s attempts to stay active, provide accurate and consistent information, minimize the number of health-care workers involved with individual clients, and to actively monitor whether care is delivered as contracted.

Background/Aims The allied health service is department based rather than dedicated to a particular ward or specialty and use different data collection modalities to nursing colleagues. This results in allied health data sitting in isolation in multiple systems with no way to integrate data sets. This study aims to support quality improvement initiatives, population health management and innovation in the clinical space, create a transparent environment that seeks to engage staff, challenge assumptions and add value service delivery for patients. Methods The dashboard content was developed through discussions with key stakeholders to identify key performance indicators and appropriate measures before being developed. The dashboard was then presented in a test environment and modified to meet the end user requirements. Findings The dashboard is a highly visual way of displaying information for allied health professionals. Conclusion The dashboard provides knowledge on service development opportunities, supports strategic and clinical decision making, allocates staff and raises the profile of allied health. The dashboard will also meet staff requests with demonstrating what happens to their daily statistical data in an easily viewable method.