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Original Research
Physical activity among older people with sight loss: a qualitative research study to inform policy and practice C. Phoenix a,*, M. Griffin a,b, B. Smith c a
European Centre for Environment and Human Health, University of Exeter Medical School, Knowledge Spa, Royal Cornwall Hospital, Truro, Cornwall TR1 3HD, UK b Department of Health, Aging & Society, McMaster University, Canada c Peter Harrison Centre for Disability Sport, Loughborough University, UK
article info
abstract
Article history:
Objectives: To investigate the ways in which participation in physical activity is prevented
Received 16 May 2014
or facilitated among older people with acquired sight loss later in life.
Received in revised form
Study design: Qualitative research.
30 September 2014
Methods: Interviews were conducted with 48 visually impaired adults age 60þ years,
Accepted 2 October 2014
recruited from a range of settings including local sight loss organisations and via talking
Available online 14 February 2015
newspaper advertisements. Visual impairment was defined by self-report. Data was analysed using a thematic analysis. This research represents a first step toward the develop-
Keywords:
ment of empirically based practical suggestions for decision-makers and health
Visual impairment
professionals in terms of supporting e when required e visually impaired older adults
Physical activity
participation in physical activity.
Older adults
Results: Six themes were identified that captured why physical activity was prevented or
Qualitative methods
facilitated: disabling environments; organisational opportunities; transport; lack of information; confidence, fear and personal safety; and exercise as medicine. Conclusions: Recommendations for policy change need to be focused at the societal level. This includes developing more accessible and inclusive environments and providing meaningful information about physical activity to older adults with a visual impairment, and visual impairment in older age to physical activity providers. © 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
* Corresponding author. Tel.: þ44 (0) 1872 258159; fax: þ44 (0) 1872 258134. E-mail address: [email protected] (C. Phoenix). http://dx.doi.org/10.1016/j.puhe.2014.10.001 0033-3506/© 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
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Introduction Sight loss amongst people age 60þ years is a global and significant public health issue. For example, almost two million people in the UK are living with sight loss that has a major impact on their health and every day approximately 100 more people begin to lose their sight.1 This phenomenon is increasingly linked to age, with one in nine people aged 60þ years in the UK currently living with sight loss. Visually impaired older adults, in general, have poorer general health than the sighted population.2 They are also at significant risk of future costly medical complications.3 Being physically active can help improve health and wellbeing and prevent secondary medical conditions. For instance, physically active older adults are at lower risk of disease and have higher levels of physical and cognitive function, psychological well-being and independence than inactive older adults.4,5 Despite such benefits, less than 10% of those over 55 years meet the minimum amounts of activity recommended for health (30 minutes of at least moderate physical activity on five or more days per week).4 This is more pronounced for disabled people in general and visually impaired adults in particular. Disabled adults are less likely than non-disabled adults to participate in physical, leisure or sporting activities.6 Participation in these activities for those with a sensory impairment (i.e. deaf and/or visually impaired) are 4% lower than amongst those adults with other impairments such as spinal cord injury (SCI).7 Within the fields of both gerontology and disability, research has highlighted numerous barriers that impact upon older people's ability and inclination to engage in physical activity.8e10 For example, a recent meta-synthesis identified that for people disabled through SCI, barriers included depression, embarrassment, and a lack of knowledge and self-confidence.11 What helped to facilitate a physically active lifestyle for this group included a sense of hope that exercise might enable them to be independent, sustain mental health, and walk again in the future. To that end, it has been noted that a more critically informed approach is needed when advocating a physically active lifestyle, particularly within certain groups such as those who are disabled and those in their older age (cognisant that these are not always separate). For instance, when promoting ‘exercise as medicine’ there is a danger that exercise is equated with a definition of and relation to the body to which it is not entirely akin.12 Moreover, bodies can become at risk of being understood within the medical model or neo-liberal health role that locates the ‘problem’ of and ‘solutions’ to both disability and ageing within the individual as their own personal responsibility. In so doing, the social world that can oppress disabled and older people, subsequently restricting what they (perceive they) can do, can continue to be ignored.13,14 There is a danger too, as has been identified with reference to ageing and physical activity, that various kinds of pleasure that can be experienced when being active are elided, thereby limiting health policy promotion.15 Although there is a growing prominence of evidence based policies, which advocate the need to improve health and well-
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being in older age through increasing levels of physical activity,16e19 there is a paucity of published research which might help inform health policy on why older adults who have late onset sight loss do not engage in physical activity and how their participation could be enabled. This is especially concerning given the aforementioned scenario of significant demographic change and increased prevalence of visual impairment in older adults. It is important to fill this knowledge gap because public health practitioners and managers cannot assume that what is known about one population (e.g. older sighted people/ young physically active/young visually impaired people) can simply be imported into recommendations for promoting physical activity for another (e.g. older adults with sight loss). As such, the purpose of this research was to investigate the ways in which participation in physical activity could be prevented or facilitated among older people with acquired sight loss later in life (i.e. people who lost their sight later in life, rather than were born with loss of sight). To meet this purpose, qualitative methods were used. Qualitative research plays an important role in contributing to the public health evidence base. Not only can it contribute to answering the ‘why’ questions, it can also produce rich and detailed answers that are grounded in the experiences of the end-users themselves (i.e. visually impaired older adults). This ensures that any public health recommendations that follow are meaningful and useful to this population.
Methods After gaining university ethical approval for the study, participants were recruited using a purposive sampling strategy that was informed by maximum variation sampling in order to capture a diverse range of views.20 The inclusion criteria was (a) adults with acquired sight loss (i.e. non-congenital), and (b) aged 60þ years. Participants were recruited within England, from a range of settings by using local sight loss organisations and advertisements in talking newspapers. Upon expressing interest in the research, prospective participants were asked to fill out a biographical questionnaire (with assistance if required), wherein they confirmed their age and self-identified their current level of vision. Categories for these self-reports of visual impairment were drawn from the English Longitudinal Study of Ageing (ELSA) regarding visual impairment.21 Recruitment of each participant group continued until data saturation was achieved and there were no more emergent patterns in the data.22 Taking into account the notion of representativeness, in order to facilitate naturalistic generalisability and the transferability of findings, a sample was generated that included differences in sex, age, educational level, socio-economic status, and marital status.20 The result was a recruited sample of 48 visually impaired older adults comprising of 24 males and 24 females who (via a self-report measure) identified a variety of activity levels e from being inactive to highly active (see Table 1). In line with University ethical guidelines, interviews commenced only when the participants had provided informed consent either through written or recorded word
Age
Gender
Type of VI
Age at onset
Physical activity participation
Type of activity (if applicable)
Black blind
66 65 62 65 70 71 71 81 65 74 64 72 89 72 68 72 69 93 62 63 65 65 60 66 71 97 62 70 63 69 70 68 66 77 69 60 82 72 72 66 62 67 67 70 73 79 68 76
Male Male Female Female Female Female Male Male Male Male Male Male Male Male Female Male Male Female Male Female Male Female Female Female Female Male Female Male Male Female Male Male Male Female Female Female Female Female Female Female Female Female Male Female Female Male Male Male
Retinal haemorrhage Retinal haemorrhage Degenerative Myopathy Glaucoma and AMD Detached retina DR AMD Glaucoma and AMD AMD AMD AMD, vein occlusion and glaucoma Accident (one eye)/Herpes Simplex (other) AMD Unknown/infection RP RP RP AMD AMD DR Retinal haemorrhage AMD RP AMD AMD Glaucoma and AMD RP and cataracts Cataracts AMD AMD and cataracts AMD Pseudoxanthoma Elastica AMD AMD AMD (Sorsby's Fundus Dystrophy) Hemianopia AMD AMD DR and cataracts AMD Albinism (genetic-degenerative) Macular Dystrophy (Stargardts) AMD and cataracts Stargardts AMD and glaucoma AMD AMD AMD
36 50 44 54 55 46 49 61 54 63 58 10/20 69 18 8 20 12 68 55 60 54 58 50 50 41 86 25 69 59 63 64 49 64 74 62 55 72 59 67 54 50 27 66 10 56 72 58 74
Regular Regular Frequent Regular Rarely/never Rarely/never Frequent Rarely/never Occasional Rarely/never Frequent Regular Rarely/never Frequent Frequent Rarely/never Frequent Rarely/never Regular Regular Regular Regular Regular Regular Frequent Frequent Regular Regular Regular Regular Rarely/never Regular Regular Regular Regular Occasional Occasional Regular Regular Regular Rarely/never Regular Regular Regular Rarely/never Regular Frequent Regular
Swimming, walking, sailing Home-based exercise and rifle-shooting Walking Swimming N/A N/A Home exercise, gig-rowing, skiing N/A Gym and home exercise N/A Cricket and gym Walking N/A Lawn bowls and swimming Running (guided), gardening, skiing and walking N/A Gym, tandem cycling and walking N/A Rifle-shooting and home exercise Rifle-shooting, some walking Rifle-shooting Walking and dancing Gym and swimming Keep Fit, home exercise and dancing Gym, dancing, bowls Walking and home exercise Fitness dancing Walking and cycling Gym Walking, gardening and Tai Chi N/A Walking and gardening Walking Bird-watching/walking Walking, cycling and skiing Walking Walking Yoga and walking Hospital-based exercise program Yoga, gardening and walking N/A Walking Walking Dance and walking N/A Lawn bowls and walking Swimming and tandem cycling Gym and walking
Partial sight
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VI degree
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Table 1 e Participant characteristics.
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depending on level of visual impairment. This data collection process was chosen because when done well, interviewing can generate rich, retrospective, and thick descriptions of human life. Thus, interviews are a useful source of knowledge about personal and social aspects of lives. An interview guide was used to help facilitate discussion. Questions included in the guide were, ‘Why did you decide to be physically active?’, ‘Why have you not been physically active’, ‘What are some barriers to your physical activity?’, ‘How does being active impact on your wellbeing?’ and ‘How have you remained active?’ Clarification, elaboration, and detail orientated probes, that is, curiosity-driven follow-up questions were used throughout to elicit richer data.20 Participants were interviewed in a location of their choosing. This was primarily in their homes and occasionally in a local coffee shop or quiet meeting place. Interviews were digitally recorded, and all data were subsequently transcribed verbatim. Data were analysed using an inductive thematic analysis.23 This involved the systematic organisation, description, and interpretation of the key patterns (themes) within the data set. In terms of validity, the study was guided by a list of criteria as assembled in Tracy's review of what constitutes ‘excellent qualitative work’ (p. 837).24 This included: the worthiness of the topic; the significant contribution of the work; rich rigor, that is, developing a sample appropriate for the purpose of the study through the processes noted above and generating data that could provide for meaningful and significant claims; the coherence of the research, which refers to how well the study conforms to the purpose, methods, and results as judged by an independent researcher and readers; ‘member checks’ by verbally sharing interpretations of data and inviting participants to reflect on these interpretations. Finally, an audit trail was used that involved a researcher independently scrutinised ethics, data collection and analysis. To that end, the researcher doing the majority of the data collection (M. Griffin) practiced conscious reflexivity, kept a reflexive journal and consulted with critical friends throughout the process. The project also included an independent advisory board that scrutinised ethics, the collection of data, analytic ideas, and practical recommendations that followed. The board comprised of five researchers who have published extensively on ageing, disability or physical activity, three representatives of relevant non-profit organisations, and two older adults with visual impairment.
Results The analysis revealed several themes that helped to explain why physical activity was prevented or facilitated among older adults with a visual impairment. Each theme often captured both a barrier and facilitator to physical activity. For example, transport could prevent or enable participation in physical activity. The following themes that were identified through the analysis will be discussed in turn: ‘Environments’; ‘Organisational opportunities’; ‘Transport’; ‘Information’; ‘Confidence, fear, and personal safety’; and ‘Exercise is Medicine’.
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Environments An accessible, equitable, and inclusive environment helped to facilitate physical activity participation. Although antidiscrimination legislation has progressed and real change by organisations has been made in terms of enabling built environments for disabled people, it remains that the environment was a major barrier to the participants involving themselves in physical activity. Inside the built environment, being active was prevented or hindered in numerous ways. These included: inaccessible machinery; allocated/restricted time slots to use facilities; poor lighting; poor signage; lack of permanence/consistency of obstacles; poor locker and changing rooms; health and safety concerns; being asked to pay more money (in addition to a membership) to have a dedicated personal trainer or guide at every gym session; and spatial restrictions to allow movement between and on things. Further, disabling environments extended beyond the literal concept of ‘environment’, emphasising disablism as it arises from structure, narrative, and interrelationships. Poor attitudes by gym staff toward disabled people were often influential in creating an overall negative disability culture. As Michael said (pseudonyms used throughout to maintain anonymity): I think the thing that puts me off with gyms is that the machines are not accessible. Things like the treadmill, the rowing machine, the cross-country [elliptical trainer]. To operate them, you always have to have assistants there, to help you. And navigating around a gym e you get in a leisure centre and because it's so massive and there's so many machines and that, you know, I could stumble around there with my white cane and you can end up bumping into somebody. And if you’ve got somebody doing free weights and you bump into them, it's a bit of a nightmare. And there's nobody there to watch you, to guide you. Or as they say, they haven't got enough staff, they haven't got enough time to do it, or the right attitude to disabled people. And then you’re often waiting e like, there's always queues waiting to get onto machines. So you can't spend a lot of time trying to set it up, or getting somebody to set it up. So I don't go. The built environment outside of buildings and facilities also restricted physical activity participation. This included: pavement quality and grade; unexpected repairs or alterations to paths; the location of bollards, street signs, bushes, and rubbish bins; poor interactions with the public; and the fast pace of urban life. While participants often sought creative ways to overcome these barriers, this regularly came at a cost for their physical and emotional health. Many participants talked about injuries and the harm to their self-esteem that arose when being active due to a poor built environment or social interactions that induced embarrassment. One time e and this was a breaking point for me e I got on the bike to the local Tesco's near me. And on the way back there was a massive pothole, because of the frost this winter. And we’re talking half the wheel went down it. As I'm going past this pothole, I literally went straight over the handlebars… And these two women saw it, and came at me. I felt embarrassed as hell. I’d
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gashed me hand right up on the tarmac. Honestly, I haven't been on my bike since. (David) The participants also revealed that navigating the built environment took physical as well as mental energy, and this could limit physical activity participation. For example: It's not just the physical strain but also the mental strain of walking. Because you’ve got to think of so many things at the same time. You’ve got to think which side of the path you’re on, where the kerbs are, where the grass is. Listening for other people, traffic, for people on the pavements on bicycles. And coming across unexpected obstacles like the gas board digging the road up, or digging a path up. You always have to be alert. And then just actually moving your hand back and forwards every pace. You know, if you go a mile and a quarter, that's quite a few hundred swipes of the cane. And you’ve got to hold the cane tight. So you end up getting cramp in your hands, and in your wrist and your elbow and that. And then you can mistime your stepping and walk into something, or over-hanging bushes. So you’ve got so much to think about, so sometimes it's just easier to jump on the bus and go into town than actually walking, you know? So it's the environment that puts me off being active a lot of the time. (Margaret)
Organisational opportunities: variety, sustainability and consistency Participation in physical activity was facilitated when disability organisations provided activities that were varied, sustained, and consistent across the week and month. However, when this was not the case being active was hindered. As Louisa, talking about a local visual impairment organisation, said: ‘Archery they started once, never heard of it again. Tandem riding e I went on one ride and I’ve not heard anything since. Gardening started, and then it stopped. And that's worse than not having it at all, to be honest. It raises people up, and down they come again’. Activities in an organisation also often stopped when volunteers who delivered physical activity sessions became ill, had life interruptions, or died. Funding cuts were another reason why opportunities for being active as an older adult were not sustained by organisations: ‘The local blind association, they had a lottery fund and their aim was to get social activities going. This area got a bowls club, and a blind rock-climbing group. We got fishing, we got archery and we got art. But then the lottery funded stopped, so archery stopped, art stopped, it all stopped’. (John)
Transport: access and cost Access to regular public or community transport was a common barrier to physical activity participation, particularly in rural communities. As Thomas said: ‘The problem here with trying to be active is transport. If you live here, it's just not an option. There is one bus a week’. While public transport in
cities was often inconsistent (e.g. buses did not run on time), when a network of transport (e.g. buses, trains, trams, and the underground) was available on a regular basis, being physically active was generally facilitated. For example, talking about why her physical activity developed to and expanded beyond walking, Pauline commented: ‘London is easy for getting about, because there are so many tube stations and a good transport system. The parks have footpaths, and where I live it's very quiet, but I'm still very close to the tube station and bus service, and all the shops that I need’. Concessionary travel passes, as registered blind or partially sighted, for public transport were important for enabling people to be active. When public or community transport was inaccessible, unavailable or too inconsistent, private transport (i.e. taxis) was often perceived to be the only option. However, this was deemed too costly. Despite a desire to be physically active, our findings revealed how the necessary logistics were often unattainable and as a consequence the possibilities of living a physically active life shifted further from the participants reach.
Information Another reason for not engaging in physical activity relates to a lack of awareness and information on how to overcome barriers, what different activities to do, where to be active, how much activity to do, and how to stay motivated. As Sue explained, ‘I’ve heard of archery groups for blind people, and I’ve also even heard of shooting for blind people, but I’ve no idea how you would get into that or where they are, nor how to find out about it. Yeah, it's difficult not knowing what's going on. I don't even know where to start looking’.
Confidence, fear and personal safety Many participants reported a lack of confidence regarding their involvement in physical activity. This was sometimes linked to a fear of injury due to an inaccessible environment. However, participants also expressed a lack of confidence due to the fear of being a target of crime. This, in turn, had implications for the types of physical activity that participants felt safe to engage in along with the times when and spaces where they could imagine being active: I don't go out on my own at night because I’ve been stopped a couple of times, and had a close shave with people and things like that. People stop you in the street, and ask you for money, things like that. You feel intimidated. A friend of mine, he was actually physically assaulted twice by this bloke, trying to grab money off him. So yeah, there's always that fear. Especially nowadays, you know, they’ve got so many gangs of people around. You know, you’ve got to keep listening all the while. You know, if somebody came up and grabbed you, and ripped your wallet out, you’ve got no chance of defending yourself. And if somebody said, ‘who was it?’ You’ve got no description and things like that. You know, if you’ve had a bad experience, it can be really, really frightening,
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and that limits what activities you can do, where you can be active, and when. (Robert)
Exercise is medicine: a healthy body, healthy mind Managing sight loss alongside chronic conditions that can often accompany an ageing, changing body meant that some participants found it difficult to participate regularly in physical activity. Other participants, however, used physical activity as a form of ‘medicine’ in several senses that helped facilitate and maintain a physically active lifestyle. First, people who were physically active explained that it was pleasurable and helped to promote positive psychological well-being, or could help manage mental health problems (e.g. depression) that often arose with acquired sight loss. Second, and as the following quote exemplifies, physical activity was used to manage chronic conditions: ‘I have diabetes, so I need to keep fit and healthy and I keep my blood sugar at a really good level. And that's only because of my diet and my exercise. It controls it. And the more I do, the healthier I am. I also have arthritis in my hip joints. I've had one hip replacement and the other one needs to be replaced one day. But, exercise seems to help that as well, just keeping my hips going’. (Joanna)
Conclusions and recommendations This research used qualitative methods to investigate the ways in which participation in physical activity is prevented or facilitated among older people with acquired sight loss. By providing empirical knowledge about an under explored topic, it fills an important gap within the peer-reviewed research literature. While psychology (e.g. a desire to maintain wellbeing) was significant in hindering or promoting physical activity, most of the barriers and facilitators originated within the participant's social world. Thus, rather than simply putting the responsibility for change on the individual, what is needed is a model that places the social at the centre of thinking and policy planning. One such model is the social relational model of disability. Building upon the social model e including its critiques e and also the well documented problems associated with the medical model, the social relational model describes disability as ‘a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being’ (p. 73).25 This model has not yet been discussed in terms of visual impairment, ageing, and physical activity. But, given its focus on social relations, oppression, impairment, and well-being, it would seem to hold much potential for helping to inform public policy. Grounded in the data, and aided by the social relational model, the following evidence-based recommendations for health policy are offered for promoting physical activity among older adults with sight loss. First, change needs to be targeted more at the structural/environmental level. For example, if physical activity is to be best promoted and the social restrictions challenged, spaces to be active need to be more accessible, safe and supported by regular transport.
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Second, there is a need to engage community and commercial stakeholders in the matter of inclusion, to widen accessibility and promote compliance to anti-discrimination laws. Specifically, a concerted effort to challenge and change negative assumptions about both ageing and visual impairment within gyms, leisure settings, sporting facilities, and broader society is needed. Indeed, physical activity providers (e.g. gym trainers) could benefit from training on how best to facilitate physical activity for visually impaired adults. Third, opportunities to participate in different forms and levels of physical activity with inbuilt provisions for the smooth transition between volunteers when they leave are essential. Fourth, information and guidelines are needed that inform people how, why, where, and when to be physically active. As part of this, promoting positive messages that incorporate the multiple reasons for being physically active, such as physical, mental, and emotional rewards, is required. For example, in focussing exclusively on health related benefits, health promotion information and messages can often fail to emphasise the various pleasures that can be experienced when engaging in physical activity.15 Finally, relevant service providers should endeavour to provide a variety of options for participation in physical activity within local sight loss organisations and in partnership with existing mainstream community activities. Collaboration is essential: to pool resources and knowledge, and to ensure development and consistency of opportunity across the country. As with any recommendations, the authors are cognisant of the economic implications associated with implementation of the above. However, they strongly believe that the changes proposed would not only benefit visually impaired older adults, but also have wider implications for disabled people and an ageing society in general.
Author statements This research was conducted while [M. Griffin] was employed at the European Centre for Environment and Human Health, University of Exeter Medical School.
Ethical approval Loughborough University Ethical Review Board (reference number R12-P94).
Funding This work was supported by research funding provided by the Thomas Pocklington Trust, a sight loss charity in the United Kingdom. The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organisation. The European Centre for Environment and Human Health (part of the University of Exeter Medical School) is part financed by the European Regional Development Fund Programme 2007 to 2013 and European Social Fund Convergence Programme for Cornwall and the Isles of Scilly.
Competing interests None declared.
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references
1. Fight for Sight. Statistics about blindness and eye disease. Available at: http://www.fightforsight.org.uk/statistics-aboutblindness-and-eye-disease; 2013 (accessed 15 January 2013). 2. Jones GC, Rovner BW, Crews JE, Danielson ML. Effects of depressive symptoms on health behaviour practices among older adults with vision loss. Rehabil Psychol 2009;54(2):164e72. 3. Crews JE, Campbell VA. Health conditions, activity limitations, and participation restrictions among older people with visual impairments. J Vis Impair Blin 2001;95:453e67. 4. Department of Health. UK physical activity guidelines. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_127931; 2011 (accessed 15 January 2013). 5. Evans JR, Fletcher AE, Wormald RP. Depression and anxiety in visually impaired older people. Ophthalmol 2007;114(2):283e8. 6. Department of Work and Pensions. Fulfilling potential: building a deeper understanding of disability in the UK today. Available at: http://odi.dwp.gov.uk/fulfilling-potential/index.php; 2013 (accessed 15 January 2013). 7. Sport England. Active people survey 5: disability trends and barriers. Available at: http://www.sportengland.org/research/ active_people_survey/aps5.aspx?sortBy¼alpha&pageNum¼1; 2011 (accessed 15 January 2013). 8. Crombie IK, Irvine L, Williams B, McGinnis AR, Slane PW, Alder EM, McMurdo MET. Why older people do not participate in leisure time physical activity: a survey of activity levels, beliefs and deterrents. Age Ageing 2004;33:287e92. 9. Rashinaho M, Hirvensalo M, Leinonen R, Lintuen T, Rantanen T. Motives for and barriers to physical activity among older adults with mobility limitations. J Aging Phys Activity 2006;15:19e102. 10. McGannon KR, Busanich R, Witcher CSG, Schinke RJA. social ecological exploration of physical activity influences among rural men and women across life stages. Qual Res Sport Exerc Health 2014;6(4):517e36. 11. Williams TL, Smith B, Papathomas A. The barriers, benefits and facilitators of leisure time physical activity among people with spinal cord injury: a meta-synthesis of qualitative findings. Health Psychol Rev; 2014;. http://dx.doi.org/10.1080/ 17437199.2014.898406.
12. Neville R. Exercise is medicine: some cautionary remarks in principle as well as in practice. Med Health Care Philos 2013;16:615e22. 13. Tulle E. Acting your age? Sport science and the ageing body. J Aging Stud 2008;22:340e7. 14. Smith B, Marie-Josee P. Disability, sport, and impaired bodies: a critical approach. In: Schinke R, McGannon KR, editors. The psychology of sub-culture in sport and physical activity: a critical approach. London: Psychology Press; 2014. p. 95e102. 15. Phoenix C, Orr N. Pleasure: a forgotten dimension of physical activity in older adults. Soc Sci Med 2014;15:94e102. 16. AgeUK. Healthy ageing evidence review. Available at: http:// www.ageuk.org.uk/professional-resources-home/ knowledge-hub-evidence-statistics/evidence-reviews/; 2010 (accessed 01 August 2014). 17. Department of Health, UK. National service framework for older people. Available at: https://www.gov.uk/government/ publications/quality-standards-for-care-services-for-olderpeople; 2010 (accessed 01 August 2014). 18. Department of Health, UK. Our health, our care, our say. Available at: https://www.gov.uk/government/uploads/ system/uploads/attachment_data/file/272238/6737.pdf; 2006 (accessed 01 August 2014). 19. Department of Health, UK. Let's get moving. Available at: https://www.gov.uk/government/news/let-s-get-movingresources-help-promote-physical-activity; 2012 (accessed 01 August 2014). 20. Sparkes A, Smith B. Qualitative research methods in sport, exercise & health. London: Routledge; 2014. 21. English longitudinal study of aging (ELSA). Available at: http:// www.elsa-project.ac.uk/; 2008-2013 http://discover. ukdataservice.ac.uk/catalogue?sn¼5050; 2008-2013 (accessed 15 January 2013). Full datasets available at:. 22. Green J, Thorogood N. Qualitative research methods for health care. 2nd ed. London: Sage; 2009. 23. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77e101. 24. Tracy SJ. Qualitative quality: eight “Big Tent” criteria for excellent qualitative research. Qual Inq 2010;16:837e51. 25. Thomas C. Sociologies of disability and illness. London: Palgrave; 2007.
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Public Health journal homepage: www.elsevier.com/puhe
Original Research
Physical activity among older people with sight loss: a qualitative research study to inform policy and practice C. Phoenix a,*, M. Griffin a,b, B. Smith c a
European Centre for Environment and Human Health, University of Exeter Medical School, Knowledge Spa, Royal Cornwall Hospital, Truro, Cornwall TR1 3HD, UK b Department of Health, Aging & Society, McMaster University, Canada c Peter Harrison Centre for Disability Sport, Loughborough University, UK
article info
abstract
Article history:
Objectives: To investigate the ways in which participation in physical activity is prevented
Received 16 May 2014
or facilitated among older people with acquired sight loss later in life.
Received in revised form
Study design: Qualitative research.
30 September 2014
Methods: Interviews were conducted with 48 visually impaired adults age 60þ years,
Accepted 2 October 2014
recruited from a range of settings including local sight loss organisations and via talking
Available online 14 February 2015
newspaper advertisements. Visual impairment was defined by self-report. Data was analysed using a thematic analysis. This research represents a first step toward the develop-
Keywords:
ment of empirically based practical suggestions for decision-makers and health
Visual impairment
professionals in terms of supporting e when required e visually impaired older adults
Physical activity
participation in physical activity.
Older adults
Results: Six themes were identified that captured why physical activity was prevented or
Qualitative methods
facilitated: disabling environments; organisational opportunities; transport; lack of information; confidence, fear and personal safety; and exercise as medicine. Conclusions: Recommendations for policy change need to be focused at the societal level. This includes developing more accessible and inclusive environments and providing meaningful information about physical activity to older adults with a visual impairment, and visual impairment in older age to physical activity providers. © 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
* Corresponding author. Tel.: þ44 (0) 1872 258159; fax: þ44 (0) 1872 258134. E-mail address: [email protected] (C. Phoenix). http://dx.doi.org/10.1016/j.puhe.2014.10.001 0033-3506/© 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
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Introduction Sight loss amongst people age 60þ years is a global and significant public health issue. For example, almost two million people in the UK are living with sight loss that has a major impact on their health and every day approximately 100 more people begin to lose their sight.1 This phenomenon is increasingly linked to age, with one in nine people aged 60þ years in the UK currently living with sight loss. Visually impaired older adults, in general, have poorer general health than the sighted population.2 They are also at significant risk of future costly medical complications.3 Being physically active can help improve health and wellbeing and prevent secondary medical conditions. For instance, physically active older adults are at lower risk of disease and have higher levels of physical and cognitive function, psychological well-being and independence than inactive older adults.4,5 Despite such benefits, less than 10% of those over 55 years meet the minimum amounts of activity recommended for health (30 minutes of at least moderate physical activity on five or more days per week).4 This is more pronounced for disabled people in general and visually impaired adults in particular. Disabled adults are less likely than non-disabled adults to participate in physical, leisure or sporting activities.6 Participation in these activities for those with a sensory impairment (i.e. deaf and/or visually impaired) are 4% lower than amongst those adults with other impairments such as spinal cord injury (SCI).7 Within the fields of both gerontology and disability, research has highlighted numerous barriers that impact upon older people's ability and inclination to engage in physical activity.8e10 For example, a recent meta-synthesis identified that for people disabled through SCI, barriers included depression, embarrassment, and a lack of knowledge and self-confidence.11 What helped to facilitate a physically active lifestyle for this group included a sense of hope that exercise might enable them to be independent, sustain mental health, and walk again in the future. To that end, it has been noted that a more critically informed approach is needed when advocating a physically active lifestyle, particularly within certain groups such as those who are disabled and those in their older age (cognisant that these are not always separate). For instance, when promoting ‘exercise as medicine’ there is a danger that exercise is equated with a definition of and relation to the body to which it is not entirely akin.12 Moreover, bodies can become at risk of being understood within the medical model or neo-liberal health role that locates the ‘problem’ of and ‘solutions’ to both disability and ageing within the individual as their own personal responsibility. In so doing, the social world that can oppress disabled and older people, subsequently restricting what they (perceive they) can do, can continue to be ignored.13,14 There is a danger too, as has been identified with reference to ageing and physical activity, that various kinds of pleasure that can be experienced when being active are elided, thereby limiting health policy promotion.15 Although there is a growing prominence of evidence based policies, which advocate the need to improve health and well-
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being in older age through increasing levels of physical activity,16e19 there is a paucity of published research which might help inform health policy on why older adults who have late onset sight loss do not engage in physical activity and how their participation could be enabled. This is especially concerning given the aforementioned scenario of significant demographic change and increased prevalence of visual impairment in older adults. It is important to fill this knowledge gap because public health practitioners and managers cannot assume that what is known about one population (e.g. older sighted people/ young physically active/young visually impaired people) can simply be imported into recommendations for promoting physical activity for another (e.g. older adults with sight loss). As such, the purpose of this research was to investigate the ways in which participation in physical activity could be prevented or facilitated among older people with acquired sight loss later in life (i.e. people who lost their sight later in life, rather than were born with loss of sight). To meet this purpose, qualitative methods were used. Qualitative research plays an important role in contributing to the public health evidence base. Not only can it contribute to answering the ‘why’ questions, it can also produce rich and detailed answers that are grounded in the experiences of the end-users themselves (i.e. visually impaired older adults). This ensures that any public health recommendations that follow are meaningful and useful to this population.
Methods After gaining university ethical approval for the study, participants were recruited using a purposive sampling strategy that was informed by maximum variation sampling in order to capture a diverse range of views.20 The inclusion criteria was (a) adults with acquired sight loss (i.e. non-congenital), and (b) aged 60þ years. Participants were recruited within England, from a range of settings by using local sight loss organisations and advertisements in talking newspapers. Upon expressing interest in the research, prospective participants were asked to fill out a biographical questionnaire (with assistance if required), wherein they confirmed their age and self-identified their current level of vision. Categories for these self-reports of visual impairment were drawn from the English Longitudinal Study of Ageing (ELSA) regarding visual impairment.21 Recruitment of each participant group continued until data saturation was achieved and there were no more emergent patterns in the data.22 Taking into account the notion of representativeness, in order to facilitate naturalistic generalisability and the transferability of findings, a sample was generated that included differences in sex, age, educational level, socio-economic status, and marital status.20 The result was a recruited sample of 48 visually impaired older adults comprising of 24 males and 24 females who (via a self-report measure) identified a variety of activity levels e from being inactive to highly active (see Table 1). In line with University ethical guidelines, interviews commenced only when the participants had provided informed consent either through written or recorded word
Age
Gender
Type of VI
Age at onset
Physical activity participation
Type of activity (if applicable)
Black blind
66 65 62 65 70 71 71 81 65 74 64 72 89 72 68 72 69 93 62 63 65 65 60 66 71 97 62 70 63 69 70 68 66 77 69 60 82 72 72 66 62 67 67 70 73 79 68 76
Male Male Female Female Female Female Male Male Male Male Male Male Male Male Female Male Male Female Male Female Male Female Female Female Female Male Female Male Male Female Male Male Male Female Female Female Female Female Female Female Female Female Male Female Female Male Male Male
Retinal haemorrhage Retinal haemorrhage Degenerative Myopathy Glaucoma and AMD Detached retina DR AMD Glaucoma and AMD AMD AMD AMD, vein occlusion and glaucoma Accident (one eye)/Herpes Simplex (other) AMD Unknown/infection RP RP RP AMD AMD DR Retinal haemorrhage AMD RP AMD AMD Glaucoma and AMD RP and cataracts Cataracts AMD AMD and cataracts AMD Pseudoxanthoma Elastica AMD AMD AMD (Sorsby's Fundus Dystrophy) Hemianopia AMD AMD DR and cataracts AMD Albinism (genetic-degenerative) Macular Dystrophy (Stargardts) AMD and cataracts Stargardts AMD and glaucoma AMD AMD AMD
36 50 44 54 55 46 49 61 54 63 58 10/20 69 18 8 20 12 68 55 60 54 58 50 50 41 86 25 69 59 63 64 49 64 74 62 55 72 59 67 54 50 27 66 10 56 72 58 74
Regular Regular Frequent Regular Rarely/never Rarely/never Frequent Rarely/never Occasional Rarely/never Frequent Regular Rarely/never Frequent Frequent Rarely/never Frequent Rarely/never Regular Regular Regular Regular Regular Regular Frequent Frequent Regular Regular Regular Regular Rarely/never Regular Regular Regular Regular Occasional Occasional Regular Regular Regular Rarely/never Regular Regular Regular Rarely/never Regular Frequent Regular
Swimming, walking, sailing Home-based exercise and rifle-shooting Walking Swimming N/A N/A Home exercise, gig-rowing, skiing N/A Gym and home exercise N/A Cricket and gym Walking N/A Lawn bowls and swimming Running (guided), gardening, skiing and walking N/A Gym, tandem cycling and walking N/A Rifle-shooting and home exercise Rifle-shooting, some walking Rifle-shooting Walking and dancing Gym and swimming Keep Fit, home exercise and dancing Gym, dancing, bowls Walking and home exercise Fitness dancing Walking and cycling Gym Walking, gardening and Tai Chi N/A Walking and gardening Walking Bird-watching/walking Walking, cycling and skiing Walking Walking Yoga and walking Hospital-based exercise program Yoga, gardening and walking N/A Walking Walking Dance and walking N/A Lawn bowls and walking Swimming and tandem cycling Gym and walking
Partial sight
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VI degree
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Table 1 e Participant characteristics.
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depending on level of visual impairment. This data collection process was chosen because when done well, interviewing can generate rich, retrospective, and thick descriptions of human life. Thus, interviews are a useful source of knowledge about personal and social aspects of lives. An interview guide was used to help facilitate discussion. Questions included in the guide were, ‘Why did you decide to be physically active?’, ‘Why have you not been physically active’, ‘What are some barriers to your physical activity?’, ‘How does being active impact on your wellbeing?’ and ‘How have you remained active?’ Clarification, elaboration, and detail orientated probes, that is, curiosity-driven follow-up questions were used throughout to elicit richer data.20 Participants were interviewed in a location of their choosing. This was primarily in their homes and occasionally in a local coffee shop or quiet meeting place. Interviews were digitally recorded, and all data were subsequently transcribed verbatim. Data were analysed using an inductive thematic analysis.23 This involved the systematic organisation, description, and interpretation of the key patterns (themes) within the data set. In terms of validity, the study was guided by a list of criteria as assembled in Tracy's review of what constitutes ‘excellent qualitative work’ (p. 837).24 This included: the worthiness of the topic; the significant contribution of the work; rich rigor, that is, developing a sample appropriate for the purpose of the study through the processes noted above and generating data that could provide for meaningful and significant claims; the coherence of the research, which refers to how well the study conforms to the purpose, methods, and results as judged by an independent researcher and readers; ‘member checks’ by verbally sharing interpretations of data and inviting participants to reflect on these interpretations. Finally, an audit trail was used that involved a researcher independently scrutinised ethics, data collection and analysis. To that end, the researcher doing the majority of the data collection (M. Griffin) practiced conscious reflexivity, kept a reflexive journal and consulted with critical friends throughout the process. The project also included an independent advisory board that scrutinised ethics, the collection of data, analytic ideas, and practical recommendations that followed. The board comprised of five researchers who have published extensively on ageing, disability or physical activity, three representatives of relevant non-profit organisations, and two older adults with visual impairment.
Results The analysis revealed several themes that helped to explain why physical activity was prevented or facilitated among older adults with a visual impairment. Each theme often captured both a barrier and facilitator to physical activity. For example, transport could prevent or enable participation in physical activity. The following themes that were identified through the analysis will be discussed in turn: ‘Environments’; ‘Organisational opportunities’; ‘Transport’; ‘Information’; ‘Confidence, fear, and personal safety’; and ‘Exercise is Medicine’.
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Environments An accessible, equitable, and inclusive environment helped to facilitate physical activity participation. Although antidiscrimination legislation has progressed and real change by organisations has been made in terms of enabling built environments for disabled people, it remains that the environment was a major barrier to the participants involving themselves in physical activity. Inside the built environment, being active was prevented or hindered in numerous ways. These included: inaccessible machinery; allocated/restricted time slots to use facilities; poor lighting; poor signage; lack of permanence/consistency of obstacles; poor locker and changing rooms; health and safety concerns; being asked to pay more money (in addition to a membership) to have a dedicated personal trainer or guide at every gym session; and spatial restrictions to allow movement between and on things. Further, disabling environments extended beyond the literal concept of ‘environment’, emphasising disablism as it arises from structure, narrative, and interrelationships. Poor attitudes by gym staff toward disabled people were often influential in creating an overall negative disability culture. As Michael said (pseudonyms used throughout to maintain anonymity): I think the thing that puts me off with gyms is that the machines are not accessible. Things like the treadmill, the rowing machine, the cross-country [elliptical trainer]. To operate them, you always have to have assistants there, to help you. And navigating around a gym e you get in a leisure centre and because it's so massive and there's so many machines and that, you know, I could stumble around there with my white cane and you can end up bumping into somebody. And if you’ve got somebody doing free weights and you bump into them, it's a bit of a nightmare. And there's nobody there to watch you, to guide you. Or as they say, they haven't got enough staff, they haven't got enough time to do it, or the right attitude to disabled people. And then you’re often waiting e like, there's always queues waiting to get onto machines. So you can't spend a lot of time trying to set it up, or getting somebody to set it up. So I don't go. The built environment outside of buildings and facilities also restricted physical activity participation. This included: pavement quality and grade; unexpected repairs or alterations to paths; the location of bollards, street signs, bushes, and rubbish bins; poor interactions with the public; and the fast pace of urban life. While participants often sought creative ways to overcome these barriers, this regularly came at a cost for their physical and emotional health. Many participants talked about injuries and the harm to their self-esteem that arose when being active due to a poor built environment or social interactions that induced embarrassment. One time e and this was a breaking point for me e I got on the bike to the local Tesco's near me. And on the way back there was a massive pothole, because of the frost this winter. And we’re talking half the wheel went down it. As I'm going past this pothole, I literally went straight over the handlebars… And these two women saw it, and came at me. I felt embarrassed as hell. I’d
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gashed me hand right up on the tarmac. Honestly, I haven't been on my bike since. (David) The participants also revealed that navigating the built environment took physical as well as mental energy, and this could limit physical activity participation. For example: It's not just the physical strain but also the mental strain of walking. Because you’ve got to think of so many things at the same time. You’ve got to think which side of the path you’re on, where the kerbs are, where the grass is. Listening for other people, traffic, for people on the pavements on bicycles. And coming across unexpected obstacles like the gas board digging the road up, or digging a path up. You always have to be alert. And then just actually moving your hand back and forwards every pace. You know, if you go a mile and a quarter, that's quite a few hundred swipes of the cane. And you’ve got to hold the cane tight. So you end up getting cramp in your hands, and in your wrist and your elbow and that. And then you can mistime your stepping and walk into something, or over-hanging bushes. So you’ve got so much to think about, so sometimes it's just easier to jump on the bus and go into town than actually walking, you know? So it's the environment that puts me off being active a lot of the time. (Margaret)
Organisational opportunities: variety, sustainability and consistency Participation in physical activity was facilitated when disability organisations provided activities that were varied, sustained, and consistent across the week and month. However, when this was not the case being active was hindered. As Louisa, talking about a local visual impairment organisation, said: ‘Archery they started once, never heard of it again. Tandem riding e I went on one ride and I’ve not heard anything since. Gardening started, and then it stopped. And that's worse than not having it at all, to be honest. It raises people up, and down they come again’. Activities in an organisation also often stopped when volunteers who delivered physical activity sessions became ill, had life interruptions, or died. Funding cuts were another reason why opportunities for being active as an older adult were not sustained by organisations: ‘The local blind association, they had a lottery fund and their aim was to get social activities going. This area got a bowls club, and a blind rock-climbing group. We got fishing, we got archery and we got art. But then the lottery funded stopped, so archery stopped, art stopped, it all stopped’. (John)
Transport: access and cost Access to regular public or community transport was a common barrier to physical activity participation, particularly in rural communities. As Thomas said: ‘The problem here with trying to be active is transport. If you live here, it's just not an option. There is one bus a week’. While public transport in
cities was often inconsistent (e.g. buses did not run on time), when a network of transport (e.g. buses, trains, trams, and the underground) was available on a regular basis, being physically active was generally facilitated. For example, talking about why her physical activity developed to and expanded beyond walking, Pauline commented: ‘London is easy for getting about, because there are so many tube stations and a good transport system. The parks have footpaths, and where I live it's very quiet, but I'm still very close to the tube station and bus service, and all the shops that I need’. Concessionary travel passes, as registered blind or partially sighted, for public transport were important for enabling people to be active. When public or community transport was inaccessible, unavailable or too inconsistent, private transport (i.e. taxis) was often perceived to be the only option. However, this was deemed too costly. Despite a desire to be physically active, our findings revealed how the necessary logistics were often unattainable and as a consequence the possibilities of living a physically active life shifted further from the participants reach.
Information Another reason for not engaging in physical activity relates to a lack of awareness and information on how to overcome barriers, what different activities to do, where to be active, how much activity to do, and how to stay motivated. As Sue explained, ‘I’ve heard of archery groups for blind people, and I’ve also even heard of shooting for blind people, but I’ve no idea how you would get into that or where they are, nor how to find out about it. Yeah, it's difficult not knowing what's going on. I don't even know where to start looking’.
Confidence, fear and personal safety Many participants reported a lack of confidence regarding their involvement in physical activity. This was sometimes linked to a fear of injury due to an inaccessible environment. However, participants also expressed a lack of confidence due to the fear of being a target of crime. This, in turn, had implications for the types of physical activity that participants felt safe to engage in along with the times when and spaces where they could imagine being active: I don't go out on my own at night because I’ve been stopped a couple of times, and had a close shave with people and things like that. People stop you in the street, and ask you for money, things like that. You feel intimidated. A friend of mine, he was actually physically assaulted twice by this bloke, trying to grab money off him. So yeah, there's always that fear. Especially nowadays, you know, they’ve got so many gangs of people around. You know, you’ve got to keep listening all the while. You know, if somebody came up and grabbed you, and ripped your wallet out, you’ve got no chance of defending yourself. And if somebody said, ‘who was it?’ You’ve got no description and things like that. You know, if you’ve had a bad experience, it can be really, really frightening,
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and that limits what activities you can do, where you can be active, and when. (Robert)
Exercise is medicine: a healthy body, healthy mind Managing sight loss alongside chronic conditions that can often accompany an ageing, changing body meant that some participants found it difficult to participate regularly in physical activity. Other participants, however, used physical activity as a form of ‘medicine’ in several senses that helped facilitate and maintain a physically active lifestyle. First, people who were physically active explained that it was pleasurable and helped to promote positive psychological well-being, or could help manage mental health problems (e.g. depression) that often arose with acquired sight loss. Second, and as the following quote exemplifies, physical activity was used to manage chronic conditions: ‘I have diabetes, so I need to keep fit and healthy and I keep my blood sugar at a really good level. And that's only because of my diet and my exercise. It controls it. And the more I do, the healthier I am. I also have arthritis in my hip joints. I've had one hip replacement and the other one needs to be replaced one day. But, exercise seems to help that as well, just keeping my hips going’. (Joanna)
Conclusions and recommendations This research used qualitative methods to investigate the ways in which participation in physical activity is prevented or facilitated among older people with acquired sight loss. By providing empirical knowledge about an under explored topic, it fills an important gap within the peer-reviewed research literature. While psychology (e.g. a desire to maintain wellbeing) was significant in hindering or promoting physical activity, most of the barriers and facilitators originated within the participant's social world. Thus, rather than simply putting the responsibility for change on the individual, what is needed is a model that places the social at the centre of thinking and policy planning. One such model is the social relational model of disability. Building upon the social model e including its critiques e and also the well documented problems associated with the medical model, the social relational model describes disability as ‘a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being’ (p. 73).25 This model has not yet been discussed in terms of visual impairment, ageing, and physical activity. But, given its focus on social relations, oppression, impairment, and well-being, it would seem to hold much potential for helping to inform public policy. Grounded in the data, and aided by the social relational model, the following evidence-based recommendations for health policy are offered for promoting physical activity among older adults with sight loss. First, change needs to be targeted more at the structural/environmental level. For example, if physical activity is to be best promoted and the social restrictions challenged, spaces to be active need to be more accessible, safe and supported by regular transport.
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Second, there is a need to engage community and commercial stakeholders in the matter of inclusion, to widen accessibility and promote compliance to anti-discrimination laws. Specifically, a concerted effort to challenge and change negative assumptions about both ageing and visual impairment within gyms, leisure settings, sporting facilities, and broader society is needed. Indeed, physical activity providers (e.g. gym trainers) could benefit from training on how best to facilitate physical activity for visually impaired adults. Third, opportunities to participate in different forms and levels of physical activity with inbuilt provisions for the smooth transition between volunteers when they leave are essential. Fourth, information and guidelines are needed that inform people how, why, where, and when to be physically active. As part of this, promoting positive messages that incorporate the multiple reasons for being physically active, such as physical, mental, and emotional rewards, is required. For example, in focussing exclusively on health related benefits, health promotion information and messages can often fail to emphasise the various pleasures that can be experienced when engaging in physical activity.15 Finally, relevant service providers should endeavour to provide a variety of options for participation in physical activity within local sight loss organisations and in partnership with existing mainstream community activities. Collaboration is essential: to pool resources and knowledge, and to ensure development and consistency of opportunity across the country. As with any recommendations, the authors are cognisant of the economic implications associated with implementation of the above. However, they strongly believe that the changes proposed would not only benefit visually impaired older adults, but also have wider implications for disabled people and an ageing society in general.
Author statements This research was conducted while [M. Griffin] was employed at the European Centre for Environment and Human Health, University of Exeter Medical School.
Ethical approval Loughborough University Ethical Review Board (reference number R12-P94).
Funding This work was supported by research funding provided by the Thomas Pocklington Trust, a sight loss charity in the United Kingdom. The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organisation. The European Centre for Environment and Human Health (part of the University of Exeter Medical School) is part financed by the European Regional Development Fund Programme 2007 to 2013 and European Social Fund Convergence Programme for Cornwall and the Isles of Scilly.
Competing interests None declared.
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