Hilda Mulligan

“Tell me what you want, what you really really want….”: asking people with multiple sclerosis about enhancing their participation in physical activity

Purpose: This paper provides a review of research that emphasizes the importance of listening to the people whom health professionals serve when promoting participation and engagement in rehabilitation. We report on the development of an approach aiming to optimize long-term adherence in physical activity for people with multiple sclerosis (MS). This approach was very different to those based on current evidence-based exercise recommendations, although the objectives for both approaches were similar. Key message: We argue that only by ensuring that people living with chronic disability not only have a voice but a voice that is listened to, can health professionals truly engage in evidenced-based practice that works in application and meets the needs, desires and capabilities of people with MS and other chronic health conditions. Implications for Rehabilitation Participation in physical activity is important for people living with chronic disability to maintain long-term health and well-being and prevent secondary complications of disability. To truly engage in evidenced-based practice the needs, desires and capabilities of the people for whom the intervention is targeted need to be considered and addressed. Service development and refinement which draws on perspectives of people living with chronic disabling conditions may enhance longer term adherence.

Tics and developmental stuttering

BACKGROUND Developmental stuttering affects 1% of the population but its cause remains unclear. Recent PET studies of metabolism in the central nervous system suggest that it may be related to dysfunction in the basal ganglia or its connections with regions of the cortex associated with speech and motor control. OBJECTIVE To determine the presence and characteristics of involuntary movements (IMs) in people who stutter and to investigate the hypothesis that these movements may be of a very similar nature to the IMs seen in patients with movement disorders due to basal ganglia dysfunction. METHODS Sixteen adults with developmental stuttering and 16 controls matched for sex and age were audio-videotaped while freely speaking 300 words in conversation and reading aloud 300 words. The audio data was inspected for dysfluencies and the video data was scrutinised for the presence and characteristics of IMs. RESULTS Subjects who stuttered produced more IMs than controls during free speech (354 vs 187, p<0.05) and reading (297 vs 47, p<0.001). Most of the IMs in both groups were tics, with a greater number of both simple and complex motor tics (CMTs) in subjects who stuttered. CMTs were more frequent than simple motor tics in those who stuttered, but not in controls. The combination of repetitive eye blink followed by prolonged eye closure was found exclusively in the stuttering group, as were simple tics consisting of eyebrow raise or jaw movement. Dystonia in the form of blepharospasm was identified in a small number of subjects who stuttered. Choreic movements were not associated with stuttering. CONCLUSIONS Developmental stuttering is associated with the presence of IMs that are predominantly simple and CMTs. This association suggests that tics and stuttering may share a common pathophysiology and supports the view that, in common with tics, stuttering may reflect dysfunction in the basal ganglia or its immediate connections.

Participant perceptions of a novel physiotherapy approach (“Blue Prescription”) for increasing levels of physical activity in people with multiple sclerosis: a qualitative study following intervention

Purpose: The aim of this study was to investigate experiences of participating in a feasibility trial of a novel physiotherapy intervention (Blue Prescription). The trial was designed to increase participation in physical activity for people with multiple sclerosis living in the community. Methods: We individually interviewed 27 volunteers from two New Zealand metropolitan areas at the conclusion of their participation in Blue Prescription. We asked volunteers about what participation in Blue Prescription had meant to them; how participants intended to continue with their physical activity; how the approach differed from previous experiences of physiotherapy encounters; and how Blue Prescription could be improved. Interviews were semi-structured, audio-recorded, transcribed verbatim, and analysed using a General Inductive Approach. Results: ‘Support’ was identified as a key theme with three sub-themes: ‘The therapeutic relationship’; ‘The Blue Prescription approach’; and ‘Supporting themselves’. We identified two additional themes ‘Motivation to participate’ and ‘Improving the Blue Prescription approach’. Conclusion: A novel approach (Blue Prescription) which facilitates engagement in higher levels of desirable physical activity was perceived by participants to be supportive, motivating and enabling. This approach might be particularly useful for people with multiple sclerosis ready to adopt new health-related behaviours. For future studies, this approach requires further refinement, particularly with regards to methods of communication and evaluation. Implications for Rehabilitation The Blue Prescription Intervention was perceived by participants to be supportive, motivating and enabling when attempting to increase levels of PA Participants with multiple sclerosis who were ready to adopt higher levels of PA appeared to be more receptive to the Blue Prescription intervention than those who were not Frequently used outcome measures might require further development or refinement in order to make better sense to people with multiple sclerosis living in New Zealand

The feasibility and short-term benefits of Blue Prescription: a novel intervention to enable physical activity for people with multiple sclerosis

Purpose: Participation in physical activity for people with Multiple sclerosis (MS) is important but can be difficult to sustain long-term. Facilitators for long-term adherence include choice over activity and control over level of engagement, coupled with support, advice and encouragement from a physiotherapist. This is the basis of Blue Prescription, a novel physiotherapy approach aimed at optimising long-term adherence with physical activity. We evaluated the feasibility and short-term benefits of Blue Prescription in people with MS. Methods: Twenty-seven people with MS (mean age: 51 ± 11 years, with a range of MS type and disability) were assessed at baseline and immediately post-intervention with the MS Impact Scale, MS Self-efficacy Scale, and European Quality of Life Questionnaire. Change in outcomes were analysed with Wilcoxon signed ranks tests. Results: All participants, irrespective of level of disability, were able to choose a physical activity and to engage in it. The physical component MS Impact Scale score significantly improved by a median change of 6.5 (95% CI = −10.5 to −2.0; p = 0.007; effect size = 0.38). There were no other significant changes in outcomes. Conclusion: Blue Prescription appears feasible and potentially beneficial, particularly in reducing the negative impacts of MS upon individuals, and thus warrants further evaluation. Implications for Rehabilitation Facilitators for long-term adherence for disabled people include choice over activity and control over level of engagement, coupled with support, advice and encouragement from a physiotherapist. Blue Prescription is a physiotherapy approach aimed at optimising long-term adherence with physical activity for people with multiple sclerosis. Blue Prescription appears to reduce the negative impacts of multiple sclerosis upon individuals.

Promoting physical activity for individuals with neurological disability: indications for practice.

Purpose: This study explored processes that influenced involvement in recreational exercise for individuals with neurological disability, to identify strategies to promote physical activity for health and well-being in this population. Method: Nineteen participants (11 males and eight females), aged 20–71 years, with a range of neurological conditions and functional limitations, were recruited in one large metropolitan area in New Zealand. Individual semi-structured interviews explored participants’ views, perceptions, and experiences of undertaking recreational exercise. Data were analysed for themes. Results: For some individuals, recreational exercise is undertaken for its physical, psychological, or social benefits, despite the physical activity itself feeling relatively unsatisfactory. In contrast, individuals who are able to undertake their preferred choice of recreational exercise experience intense satisfaction. This motivates self-maintenance of physical activity, even for those individuals who require carer support or assistance to do so. Conclusions: This study has identified that there can be two forms of involvement in recreational exercise that allows individuals with neurological disability to become more physically active. The information could be further developed and tested in intervention studies to provide strategies for health professionals to facilitate engagement in physical activity for people with neurological disability. Implications for Rehabilitation Strategies to encourage physical activity should promote the individual’s own choice of involvement in recreational exercise. Access to an individual’s own choice of recreational exercise leads to self-sufficiency for it to be maintained.

Promoting physical activity for people with neurological disability : perspectives and experiences of physiotherapists

Both New Zealand and Sweden have health and disability policies that promote recreational exercise within society for people with disability. Despite these policies, levels of physical activity by people with disability in these countries are low. Physiotherapists are equipped to assist people with disabling conditions into physical activity. This qualitative study explored the perspectives and experiences of physiotherapists in New Zealand and Sweden toward promoting physically active recreation for adults with chronic neurological conditions. Nine physiotherapists who worked with adults with neurological disability in a range of long-term rehabilitation and community (home) health services were interviewed and the data analysed for themes. The physiotherapists described innovative and resourceful expertise to assist patients to be physically active. However, they perceived a lack of support for their work from within the health system and a lack of knowledge of disability issues within the recreational arena, both of which they perceived hindered their promotion of physical activity for people with neurological disability. Physiotherapists feel unable to fully support health and disability policies for the promotion of physically active recreation for people with neurological conditions, because of perceived constraints from within the recreational arena and their own health systems. If these constraints were addressed, then physiotherapists could be better agents to promote physical activity for people with neurological conditions.

Dysfluency and involuntary movements : A new look at developmental stuttering

Studies using modern imaging techniques suggest that, in developmental stuttering, there is dysfunction within the cortical and subcortical areas of the motor control system wider than that pertaining to speech motor control alone. If this is the case, one might expect motor deficits extending beyond and unrelated to the production of speech in people who stutter. This study explored this proposal by investigating the presence and characteristics of involuntary movements accompanying stuttering. Sixteen adults with developmental stuttering and 16 controls matched for age and sex were audio-videotaped during 5 minutes of conversational speech and reading a passage of 350 words. Audio-data were examined for dysfluencies. Movements of the face, head and upper body considered involuntary and not part of normal facial expression or gesture and not part of the mechanics of speech were identified and described from muted video-data. Subjects who stuttered had a higher proportion of classic (within-word) dysfluencies accompanied by involuntary movements (IMs) than controls during speech (24.4% vs. 4.5%, p=.054) and reading (28.6% vs. 4.9%, p equals;. 033). There was no difference in proportion of classic dysfluencies accompanied by IMs between speech and reading for either group. IMs were also seen in both groups during fluent speech, with a similar incidence during free speech (3.9% vs. 3.0%, NS) but a greater incidence in the subjects who stuttered during reading (2.4% vs. 0.8%, p equals;. 03). In contrast, there was no difference between the two groups for IMs accompanying normal (between-word) dysfluencies. This suggests that classic and normal dysfluency and their accompanying IMs have different etiologies. The notion that stuttering and IMs are due to altered function in a motor control system wider than that of speech motor control alone is supported by a higher incidence of IMs in people who stutter during both classic dysfluencies and fluent speech.

Combining self-help and professional help to minimize barriers to physical activity in persons with multiple sclerosis: a trial of the "Blue Prescription" approach in New Zealand.

Background and Purpose: Increasing participation in physical activity is a goal for many health care providers working with persons with disability. In order to reduce the physical and social barriers to participation, there is a need to develop approaches that integrate self-help with professional help for autonomous yet supported health promotion. This study reports on an innovative program, entitled the “Blue Prescription approach”, in which physical therapists work collaboratively with persons with a disability to promote community-based physical activity participation. Methods: We trialed this collaborative approach with two physical therapists and 27 participants with multiple sclerosis (MS) over a three month period. We gathered qualitative data from four sources: (i) individual interviews with our participants, (ii) individual interviews with the physical therapists, (iii) clinical notes, and (iv) Advisory Group meeting notes. We then analyzed these data for categories to inform the content and resources required for delivery of the approach. Results: For most participants, the Blue Prescription approach facilitated regular engagement in the physical activity of their choice. The Advisory Group provided advice to help solve individual contexts that presented as challenges to participants. Based on review of interview transcripts, we identified four strategies or issues to inform the further development of Blue Prescription. Discussion and Conclusions: Evidence indicated that the Blue Prescription approach can provide a collaborative and flexible way for physical therapists to work with individuals with MS, to increase participation in community-based physical activity. To further develop the approach, there is a need to address issues related to the use of standardized measures and develop strategies to train physical therapists in collaborative approaches for promotion of physical activity. The integration of self-help and professional help provided by the Blue Prescription approach appeared to result in successful promotion of physical activity in persons with MS. Additional testing is required to examine its efficacy in other health care systems, in conditions beyond MS, and in terms of its economic impact. Video Abstract available (see Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A46) for more insights from the authors.

Association between motor functioning and leisure participation of children with physical disability: an integrative review

The aim of this integrative review is to synthesize the evidence of association between motor functioning and leisure participation of children with physical disability.

“I do like the activities which I can do…” Leisure participation experiences of children with movement impairments

Abstract Aim: To explore in depth the leisure participation experiences of children with movement impairments. Methods: We used Interpretative Phenomenological Analysis approach to interpret and understand the experiences of 22 children with movement impairments, aged between 6 and 12 years. Children expressed their views through flexible child-centred methods of data collection that allowed the children to draw, paint, use stickers, and demonstrate their leisure activities and equipment while communicating about their experiences. Results: Children participated in leisure activities of their choice, and expressed positive experience of fun, challenge, independence and achievement. The choice of activities depended on a combination of the motor functioning of the individual child, inspiration and support from families, friends and health professionals, as well as the possibility of adaptations and availability of community programmes. At times children felt disappointed and avoided some activities due to associated negative experience such as injury, fear, non-inclusion and the difficulty they had experienced in adapting and performing certain activities. Conclusion: Families, therapists and community service providers such as disability organisations could enhance leisure participation experiences by suggesting and creating opportunities that could increase children’s choices of leisure activities. Implications for rehabilitation Children’s choice of activities, places and friends is important for positive experiences of fun, achievement, challenge, independence and motivation in leisure participation. Families and health professionals could assist children make appropriate choices for leisure activities that depends on factors such as motor abilities, adaptations and availability of activities in the community. In the community, widening the options for leisure activities such as non-competitive adaptive sports and indoor sports for children with variable levels of movement impairment could improve leisure participation experiences.