Researched By :

Jason Liverton (B.A.)

Supervised By :

Dr Ian Patterson

The purpose of this paper is to inform leisure service providers of the diverse range of leisure experiences currently engaged in and sought by people with neuromuscular disorders. Three essential issues will be examined. A comparison will be made between the leisure behaviour of people with and without neuromuscular disorders. The leisure preferences of people with neuromuscular disorders will be examined. an examination will be conducted of the potential threat that certain barriers or constraints have upon the pursuit of these leisure preferences.

The term neuromuscular disorder encompasses an estimated 40 different types of muscle disease (MDAA, 1996). Three common elements link each of these disorders. Further, they are hereditary and progressive. Each produces a characteristic selective pattern of muscle group weakness and all result in an irreversible wasting of the muscle tissues (MDAA, 1990).

The age of onset, severity, progression and life expectancy of each disorder type collectively determines the psycho-social limitations presented for each individual. Although mobile in the early stages of the disorder, people with neuromuscular disorders gradually become less mobile and more dependant upon the assistance of others for the performance of everyday tasks. Associated outcomes include increased levels of anxiety, frustration, embarrassment and carer reliance, as well as reduced levels of self confidence and personal privacy (Gething,1992).

The growth of opportunities for people with disabilities to participate in sport and recreation activities in Australia has developed in a fragmented fashion over the past 30 years services have generally been segregated from mainstream activities. While the opportunity to participate in sport and recreation has largely concentrated on such major disability groups as people with spinal injuries, sensory disabilities and intellectual disabilities, support groups have only recently been established for people with Neuromuscular Disorders (Goodman,1996). The following section consequently details the current provision of leisure services.

The Muscular Dystrophy Association Of Australia (MDAA) is primarily a coordinating body for state associations and international representatives. It also provides financial assistance, through sponsorship and donations to several national recreation programs. These include a National Electric Wheelchair Sports tournament (NEWS), a National Camp at Puckapunyal, and an internet site, and a small page dedicated to recreation ideas (ie. inclusive games, sports and their therapeutic benefits) State association’s by contrast, orientate their funds towards welfare and counselling, equipment purchase, research and information exchange and small recreation programs. These include annual respite and recreational camps, family and adult client recreation outings and the partial subsidisation of representative sporting teams (MDAA,1996).

Rosen and Burchard (1990) and Crapps et al. (1985) have indicated that, the majority of leisure activities engaged in by people with disabilities tend to be passive in nature and home based. Dempsey (1991) supported this proposition stating that interviews with parents of recently graduated school children revealed that very few accessed community leisure facilities or were involved in leisure activities outside their own home. Lockwood and Lockwood (1991) also found that those people with high support needs engaged in such passive activities as watching television, going to the movies and the theatre and social activities with family and friends, due to having limited choice. Hanley (1996) also found that the most frequently engaged passive leisure activities of people with disabilities were, listening to music (35%), watching television (35%) and going to movies or drive in (26.8%), reading (16.9%), arts and crafts (14.2%), and playing computer games (12.6%).

While there is strong evidence to suggest that people with disabilities predominantly engage in leisure activities that are home based and passive in nature, there is some support to suggest that people with disabilities participate in away from home and physically orientated activities. Dempsey and Simmons’ (1995) study examined the main types of away from home leisure activities of people with disabilities and the frequency of participation over the preceding year. He found that visiting friends and relatives was the most frequently engaged leisure activity of the preceding 12 month period (67.1%), while engagement in social and community activities was a distant second (25%), engagement in sporting activities was the third activity accounting for 16.7% of all response.

A research study of the leisure participation and employment patterns and attitudes of New Zealander’s with a diverse range of disabilities indicated that, walking (53%), gardening (14%), cycling (13%), playing with the family (11%), gym and weight training (9%) and team sports (8%) were the most engaging activities (Hillary Commission and Workbridge,1994:10). A similar study conducted by Hanley (1996) revealed that swimming (36.8%), wheelchair sports (28.7%), walking (25.7%) and ten pin bowling (25.7%) were frequent activities.

Because of the functional limitations imposed on people with neuromuscular disorders and the associated consequences of engaging in physically strenuous exercise for example fatigue, very few physically active leisure activities are engaged in (Goodman,1996). Swimming was not the most frequently engaged in nor favoured physical activity (Liverton,1994). Through the advancement of such mobility aids as the electric wheelchair, participation such as organised wheelchair touch rugby league, hockey and balloon soccer were cited as the most frequently engaged in physical activity. In terms of citing a favoured leisure activity for this group, playing wheelchair sport rated overwhelmingly as the favourite, accounting for 90% of all responses.

Thus, although the leisure participation patterns of people with disabilities are generally reflective of the general population, it is important to realise that many studies of disability in particular, have used examples which incorporate a wide cross section of disability types. As a consequence, it is difficult to determine the specific leisure activities participated in, or sought by such specific disability groups, as people with neuromuscular disorders, as well as the extent to which the functional abilities of this group constrain participation in certain activities.

As is the case for people without disabilities, people with disabilities similarly seek involvement in a wide variety of leisure activities. For example, in a study on the Queensland’s Sunshine Coast, people with disabilities sought engagement in swimming, ten pin bowling, rugby football, dancing, arts and crafts, going for drives, watching movies and playing musical instruments (Patterson et al.,1996). People with neuromuscular disorders, similarly aspire to engage in a diverse range of unmet leisure experiences. Examples of expressed leisure interests include skating, scuba diving, nightclubbing, driving a car, sex, hanggliding, domestic and international travel, and gardening (Liverton,1994).

Crawford and Godbey (1987) have used the terms intrapersonal and interpersonal to categorise leisure constraints. Intrapersonal constraints relate to an individual’s lack of physical ability and ease in social situations, whereas Interpersonal constraints relate to the difficulty in finding someone with whom to engage in the activity, being too busy with family to participate and not knowing where to participate. Collectively, the identified constraints impinge upon the ability of person with a disability to gain the benefits associated with leisure experiences. Therefore, it can be assumed that leisure participation is dependent on a person's ability to successfully negotiate and conquer the constraints presented to them (Crawford et al.,1991). Lockwood and Lockwood (1991) identified a number of constraints to the leisure participation of people with disabilities, the frustrating limitations imposed by their disability, the financial restrictions (ie. low income) associated with engaging in comparatively high cost recreational activities, dependence on parents and friends to provide transport, lack of information about current and future programs and the lack of suitable programs in the local area. Although these constraints are common to many disability groups, it is difficult to ascertain which of the constraints are affecting people with neuromuscular disorders most of all. As such, a closer examination of this issue needs to be conducted.

There has been a dearth of studies investigating the unique leisure needs of people with neuromuscular disorders and as a result it is imperative that a study be conducted. In essence this study proposes to assist in informing leisure service providers about three essential issues. The first relates to the notion that people with neuromuscular disorders do not seek the same leisure experiences as able bodied people. The second relates to the identification of this group’s preferred leisure activities. The third relates to the identification of constraints which present the greatest obstacle to this group.

The Leisure Diagnostic Battery (1987), was originally two sets of scales designed to access the leisure functioning of nine to 14 year old individuals with disabilities. The questionnaire used within the LDB elicits response which concerns the behaviour and perception of individuals relative to their ability to use play and recreation to attain leisure and the associated benefits. The questionnaire for the second set of scales comprises both the leisure preference and the barriers to participation scales. An additional scale for the measurement of leisure knowledge is also included. The questionnaire for the first set of scales is comprised of five subscales. These include the scales for the measurement of perceived leisure competence, perceived leisure control, leisure needs, depth of involvement and playfulness. The sum of these five subscales provide a construct which is labelled "perceived freedom" in leisure. The LDB, therefore, identifies key constraints to participation and leisure preferences and indicates the extent to which individual’s perceive themselves to have the freedom to competently perform a leisure oriented task.

Post survey, the collected data were analysed using a quantitative approach. Using the Statistical Package for Social Science (SPSS) several analyses were conducted. First, descriptive statistics were used to describe the demographic characteristics of the sample; the frequencies associated with present leisure behaviour; the sample’s perceived leisure barrier score; and the frequencies associated with preferred leisure styles and domains. Second, inferential statistics were used to test for variance within the sample (Neuman, 1994). To determine whether or not there were significant difference between the demographic characteristics and the perceived leisure barriers, preferred leisure styles and domains, a one way analysis of variance was conducted.

Of the 32 subjects who participated in the study, 31 were male, and 1 was female. The age grouping of subjects found that, approximately 60% were between the ages of 15 and 20 years. In terms of the types of neuromuscular disorders that subjects were disabled by, approximately 80% had Duchene Muscular Dystrophy. In terms of significant findings, there was a significant level of variance between the age of subjects and their Neuromuscular Disorders (f(2,28)= 4.31,sig.=.01) with over half of the subjects between the age of 15 and 20 years having duchenne muscular dystrophy (56%) (Refer Figure 1). In addition, 82% of subjects resided in Australia and 18% in New Zealand.

Of the 31 favoured leisure activities identified, the most prominent activity was playing electric wheelchair sports such as hockey, soccer and rugby league (Refer Figure 2). Overall, this accounted for nearly a quarter (22%) of the overall responses for favoured leisure activities. Other prominent leisure activities favoured by subjects included, spectator sport (ie. watching live or televised football codes, motor racing and basketball) (11%), playing computer games (9%), listening to music (8%), watching movies (7%) and watching television (6%). Although watching television accounted for only 6% of the overall responses of favoured leisure activities, the inclusion of more specific details about watching televised sport and movies would have substantially increased this figure.

It was found that 76% of respondents engaged in their favoured leisure activities with others within a range of social settings. The most prominent social grouping that activities occurred in were with friends, which accounted for 53% of all responses. The overall frequency of participation in the identified leisure activities occurred predominantly on a weekly basis (34%). Daily and fortnightly participation accounted for 29% and 21% respectively.

After an examination of the relationship between favoured leisure activities and their respective social settings for engagement the following results were found. Of those who listen to music, 53% listen alone; 97% of those who play electric wheelchair sport play with friends; 44% of those who watch television, watch with their family; and 21% of those who watch movies watch them with their carers. Likewise, an examination between favoured leisure activities and their respective frequencies of participation revealed the following. Of those who watch television, 100% watch daily; 54% of those who play computer games play weekly; 61% of those who play electric wheelchair sport play fortnightly; 33% of those who watch movies watch on a 6 monthly basis; 15% of those who spectate sport and watch movies participate monthly; and of those who spectate sport, 100% spectate annually.

To determine whether the previously identified leisure activities favoured by people with neuromuscular disorders reflect their leisure style and domain preferences, a comparison was made between both sets of data. The most significant findings relating to leisure domain preferences included, subjects wishing to engage less often in mental and linguistic activities (-33%) and sport (-10%), and more often in natural and outdoor activities (19%), arts and crafts activities (15%), and musical and dramatic activities (6%) (Refer Figure 4). In terms of significant findings relating to leisure style preferences, subjects wish to engage more often in risk (15%) and group (14%) oriented activities (Refer Figure 5).

People with neuromuscular disorders enjoy participating in many of the same leisure activities as the wider community. Of particular note are home based passive activities such as listening to music and watching television, which strongly support the findings of previously cited studies (A.B.S.,1994; Dasett,1991; Lockwood and Lockwood,1991; Hanley,1996; Rosen and Burchard,1990; Crapps et al.,1985; Dempsey,1991; Liverton,1994). Other significant similarities include going to the movies, which ranks higher amongst the studies of people with disabilities than the general population. Possibly, the sedentary nature of movie watching, makes it more attractive to people with mobility disabilities.

From the other perspective, some of the distinctly different preferences include those related to the playing of computer games, spectator sport, and reading. A comparison between the general population’s participatory rates in these leisure activities, and those of people with neuromuscular disorder's clearly showed a significantly lower level of participation amongst the general population. One possible explanation for this marked difference is that while the person with a neuromuscular disorder is actively engaged both linguistically and mentally, it is not likely to be physical demanding or strenuous. In addition, the competitive nature of many computer games may serve as a substitute for an otherwise physically engaging activity such as sport, or to alleviate boredom. With reading, it appears that people with neuromuscular disorders are substantially less inclined to enjoy it. This may be attributed to the difficulty of book manipulation (page turning, book retrieval) due to the physical limitations associated with each disorder.

Apart from swimming and playing electric wheelchair sport, people with neuromuscular disorders do not appear to engage in the same physical leisure activities as those studies conducted on people with disabilities (Hillary Commission and Workbridge,1994; Hanley,1996). The difference between these findings may be attributed to the fact that people with neuromuscular disorders by the very nature of their medical condition are generally prevented from engaging in activities that entail physical strain or exertion (Goodman,1996; MDAA, 1996). Based on this fact, it is not suprising to find that the leisure pursuits of people with neuromuscular disorders are more passive than physically active in nature.

Although leisure activities of a sporting and mental or linguistic nature are highly sought after by people with neuromuscular disorders, they also seek greater involvement in a diverse range of additional leisure experiences. This study found that people with neuromuscular disorders would like to participate more frequently in leisure activities that are oriented towards nature and the outdoors, arts and crafts, music and drama, and involve increased risk and group involvement. This finding should hardly be suprising when one considers that individuals are likely to seek a holistic range of leisure experiences over their lifetime, and that many leisure service providers for this group are unable to meet all their leisure needs. To facilitate more of the sought leisure experiences therefore, it is imperative that constraining factors be carefully considered.

According to the findings of this study, the most important constraining factors that prevent people with neuromuscular disorders from engaging in leisure activities are two fold. Firstly, there are those factors which are externally imposed such as the inadequate provision of leisure opportunities. Secondly, there are those factors which are internally acquired as a consequence of the imposed factors such as the inability to communicate leisure needs and make decisions about leisure choices, and reduced motivation to pursue activity engagement.

In the case of opportunity barriers, several constraining factors are clearly evident. Present leisure service providers such as the MDAA, are either not interested, unaware of their clients leisure needs or lack the resources necessary to support such activities. Another factor relates to the long standing problem associated with the inadequate provision by community leisure services, who neglect to provide inclusive programs which consider the functional needs of all people (Crilley,1994; Lockwood et al.,1991; Hutchison et al.,1979). Service providers need to be educated about people with neuromuscular disorders and their desire to engage in a greater diversity of leisure experiences.

With communication barriers, difficulty may be attributed to the social isolation experienced by many people with disabilities, and the lack of opportunity to develop the social and communication skills of their non-disabled peers (Hanley,1996; Ashman et al.,1993; Stuart,1988). Therefore, for effective communication skills to develop, people with neuromuscular disorders need to be encouraged to communicate their leisure preferences to others.

With decision making barriers, difficulty may be attributed to the lack of exposure to leisure opportunities for people with neuromuscular disorders, the limited range of choices made available to people with disabilities by service providers, and the lack of information about suitable leisure options (Lockwood,1992; 1991; Patterson et al.,1996; Hutchison,1982; Hanley,1996). If people with neuromuscular disorders are to become more decisive in their choice of leisure activity engagement, they need to be educated about the wide array of leisure options available to them, and appropriate service providers need to provide easier access to this literature.

With motivational barriers, a combination of several factors account for the difficulties experienced. These factors include, the functional limitations associated with having a neuromuscular disability, the lack of acceptance by others, the lack of encouragement by others, and the limitations imposed by the physical environment (Williamson,1993; Patterson et al.,1996; Lockwood,1991;1992; Hanley,1996). If people with neuromuscular disorders are to become increasingly motivated in their pursuit of leisure preferences, leisure service providers need to ensure that they provide a supportive environment of assistance and encouragement, which de-emphasises both the perceived and actual obstacles and offers practical solutions for success.

This study found that people with neuromuscular disorders generally enjoyed participating in many of the same leisure activities as the wider community. For these sought experiences to become a reality for those with neuromuscular disorders however, leisure service providers need to help overcome the identified barriers.

To assist service providers in this endeavour the following strategies have been recommended; service providers need to be more enthusiastic and supportive when facilitating leisure experiences; provide easier access to informative leisure option literature; offer assistance and advice; continue providing present opportunities; promote participatory benefits; encourage clients with neuromuscular disorders to communicate their leisure preferences; and inform clients about the wide array of leisure options available to them.

It is envisaged that this study will provide increased knowledge and information about the specific leisure needs and behaviour of people with neuromuscular disorders, a group who up until now has been ignored.