http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–9 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1017613

RESEARCH PAPER

Prevention of falls for adults with intellectual disability (PROFAID): a feasibility study Leigh Anne Hale1, Brigit F. Mirfin-Veitch2, and Gareth J. Treharne3

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Centre for Health, Activity, and Rehabilitation Research, University of Otago, Dunedin, New Zealand, 2Donald Beasley Institute, Dunedin, New Zealand, and 3Department of Psychology, University of Otago, Dunedin, New Zealand

Abstract

Keywords

Purpose: A novel physiotherapy intervention for people with intellectual disability (ID) to improve balance was developed and evaluated in a feasibility study which quantitatively assessed potential benefits on measures of balance, gait and activity participation, and qualitatively explored its acceptability, utility and feasibility. Methods: Participants were 27 adults with mild to profound ID (mean age 53 years SD 10.9). We used a mixed methods approach: an uncontrolled before–after study (data analysed with the related samples sign test) and a qualitative interview evaluation (data analysed with the general inductive approach). Balance, gait and participation were assessed at baseline and 6 months after introduction of the physiotherapy intervention with four standardised measures and two questionnaires. Results: Appropriate exercises and a physical activity could be found for all participants, irrespective of the level of ID, although for many this required a high level of assistance from support staff. Only the Balance Scale for ID changed significantly by a median score of 2 (95% CI ¼ 0.00–2.50, p ¼ 0.04). No other outcomes changed significantly. Four themes emerged: ‘‘Understanding the intervention’’; ‘‘Routine and reality’’; ‘‘Remembering what I have to do’’ and ‘‘What happens beyond the study itself’’? Conclusions: The findings provide some evidence for the benefit, acceptability, utility and feasibility of the intervention justifying further evaluation.

Balance, exercise, fall prevention, intellectual disability, participation, physical activity, physiotherapy History Received 3 August 2014 Revised 21 January 2015 Accepted 6 February 2015 Published online 25 February 2015

ä Implications for Rehabilitation  



Falling is a frequent and serious problem for many adults with intellectual disability. Two to three exercises targeted at increasing lower limb strength and challenging balance, performed each day as part of daily routine may help improve balance in adults with intellectual disability. The importance of exercising needs to be stressed to those who support adults with intellectual disability to encourage ongoing adherence.

Introduction Falling is a frequent and serious problem for many adults with intellectual disability (ID). Studies to date report similar findings; approximately 30% of adults with ID will experience a fall in one year and many will have numerous falls [1–5]. Not only is falling a recurrent problem, it frequently results in serious injury [2,4]. Of concern is that an increase in risk of falling starts at a younger age in people with ID than that reported in older adults without disability [1,6,7]. The reasons for frequent and serious falls in the ID population are multiple and complex [1,3,4,8]. Hsieh et al. [4] identified the risk factors for falling in a sample of 1515 adults with ID were being female, having arthritis, having a seizure disorder, taking

Address for correspondence: Professor Leigh Anne Hale, Centre for Health, Activity, and Rehabilitation Research, School of Physiotherapy, University of Otago, PO Box 56, Dunedin 9054, New Zealand. Tel: +64 3 4795425. E-mail: [email protected]

more than four medications, using walking aids and having difficulty in lifting or carrying greater than 4.5 kg. Other identified potential risk factors for falling among people with ID are abnormal patterns of walking, decreased motor responses to balance perturbations, concurrent medical problems, issues with impulsiveness and distractibility and visual deficits [8,9]. ‘‘Fallers’’ commonly have gait disturbances and poor balance, problems which physiotherapy can specifically address [1,6,8,10]. Also of concern is that fallers’ participation in everyday activities can be greatly restricted as a management approach to reduce risk of falling that may then contribute to a vicious cycle of declining balance and regular falls [8,9]. People with ID are known to already have reduced participation in physical activity [11–13]. It is well-known that reducing physical activity leads to reduced fitness and health, confidence and community participation [13]. In the case of adults with ID, this can eventuate in increasing workload for support staff and family as the person becomes progressively more immobile, and may necessitate early admission to rest home facilities that can cope with mobility-dependent people.

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A systematic review of risk factors for falling in people with ID recommended supervised exercise programmes as one method for preventing falls [14], but there is still a paucity of literature to guide such interventions [3]. We have, over several years, provided a variety of physiotherapy interventions to a wide range of people with ID to improve balance and strength and reduce falls risk, and we have identified strategies used by therapists to minimise falls risk [15]. This work revealed that: (1) It is difficult for people with ID to regularly attend a physiotherapy clinic as neither transport nor an accompanying support person are always available. (2) A new and ‘‘strange’’ environment and ‘‘instructor’’ are not conducive to concentration and can aggravate problematic behaviours. (3) It is difficult for many people with ID to exercise in a group, they frequently require individual attention to accomplish the exercise and thus group work requires many exercise assistants. Participants respond well to individual attention. (4) For many people with ID, sustained concentration is not possible, necessitating exercise sessions to be short and appealing, using appropriate stimulation to engage the person in exercise, for example, using balls or balloons. Based on this knowledge, a novel physiotherapy intervention was developed with the aim of reducing falls risk for people with ID and is the focus of this paper. The intervention was designed to address physical reasons (namely, reduced balance and leg strength) [16] for increased falls risk and subsequent physical inactivity. The intervention takes into account the barriers (described above) that impact on the implementation of physical interventions for people with ID. Furthermore, earlier consultation with stakeholders (people with ID and those who support them) shaped the intervention to ensure that it was acceptable, feasible and potentially affordable for funding bodies. This paper reports on the results of an exploratory phase II study [17] in which we investigated the short-term outcomes of the Prevention of falls for adults with intellectual disability (PROFAID) intervention. Specifically, we were aiming to evaluate, in a range of people with intellectual disability: (1) the possible short-term benefits (on balance, gait and domestic and community participation) and (2) the intervention’s acceptability, utility and feasibility.

Method A mixed methods approach including quantitative (a before–after intervention study with no control group) and qualitative evaluation using semi-structured face-to-face interviews was implemented. Throughout the research process, the research team regularly consulted with and were guided by a Research Advisory Group comprising of a person with ID who had experienced a fall, a mother of a person with ID who experiences frequent falls and an ID support worker. In this study we used the Prevention of Falls Network Europe definition of a fall which is ‘‘an unexpected event in which the participants come to rest on the ground, floor or lower level’’ [18, p. 1619]. This study was approved by the New Zealand Upper South A Regional Ethics Committee (URA/I1108104). Inclusion criteria To be included, participants had to meet the New Zealand legislation [ID (Compulsory Care and Rehabilitation) Act, 2003] definition of ID [19], which are: (i) a permanent impairment that results in significantly sub-average general intelligence – IQ of 70 or less; (ii) significant deficits in adaptive functioning in at least two skills in the following list: communication, self-care, home living, social skills, use of community services, self-direction, health and safety, reading writing and arithmetic, leisure and work

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and (iii) The issues must become apparent during the developmental period of the person which generally finishes when a person turns 18. In addition, participants had to be aged + 18 years, be considered by the organisation that supports them to be at risk of falling or a known faller, willing to participate and be independently mobile with or without assistive walking devices. Participants could be living in supported living arrangements, in residential care, or at home with their families. Participants were not recruited if they had a pre-existing health condition that precluded supervised involvement in low-intensity physical activity. Recruitment Three disability support organisations identified individuals whom they provided support to who meet the study criteria. In total these organisations support about 400 people with ID with a wide range of disability severity and types of living arrangements. These organisations also ensured that potential participants went through an appropriate consent procedure. Participants consented in a range of ways depending on their level of understanding, including: (a) providing independent signed consent; (b) their legal guardian provided consent or (c) a consent statement was provided by a significant other in consultation with the participant. Individuals with ID and their supporters were provided with a plain English study information sheet and consent forms approved by a University research ethics committee. On gaining consent, the appropriate signed consent form was forwarded to the researcher. As appropriate, support workers/family members were invited to join the participant with ID in the qualitative interview, and also provided signed informed consent. Outcome measurements Demographic data and fall risk information were collected at baseline. Gait and balance were assessed by trained researchers at baseline and 6 months with the Tinetti Gait and Balance Instrument [20]; the Modified Gait Abnormality Rating Scale (GARS-M) [21]; the short form Berg Balance Scale [22] and Balance Scale for ID [23]. Participants were video-recorded performing the test items of each scale and these recordings were used later by two researchers independently to score each scale, the mean score of which was used in the analysis. All four scales have been used in ID populations and have demonstrated sound clinometric properties [9,10,24–26]. Good inter-rater reliability for the Tinetti Gait and Balance Instrument, the GARS-M, the Balance Scale for Intellectual Disability (BSID) (ICC ¼ 0.91– 0.98) [23] and the Berg Balance Scale (kappa ¼ 0.74–1.00) [24] is reported. To evaluate domestic and community participation, participants or their support worker/family member (as appropriate) completed two questionnaires: (1) Index of Participation in Domestic Life, which assesses participation in a variety of domestic tasks with help or independently. (2) Index of Community Involvement – Revised, a measure of the frequency and variety of involvement in social, leisure and community-based activities. Both scales have acceptable inter-rater agreement (92–97%) and internal consistency (alpha ¼ 0.77–0.89) [27,28]. Proxy completion of questionnaires by a key support person of the participant with ID has been shown to have acceptable reliability [29]. Sample size To assess feasibility related aims, 25 participants in a single group study is suggested sufficient for a moderate effect size [30]. To counter the effects of drop-out, we aimed to recruit 30 participants.

Prevention of falls in intellectual disability

DOI: 10.3109/09638288.2015.1017613

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Qualitative evaluation After the 6-months measurement point all those involved in the intervention were invited to participate in semi-structured interviews to evaluate and explore issues of acceptability, utility and feasibility of the intervention. As we wished to gain the perceptions of the participants with ID and those of the support workers/family members, both were invited and interviewed separately. In some cases, where necessary and appropriate, the participant with ID was supported in the interview by their key support worker/family member. For some participants, their cognitive level prevented them from participating in an interview. Information relating to four core questions were sought: (1) How did participants perceive the intervention? (2) How acceptable was the intervention to people with ID and those who support them? (3) How realistic, appropriate and feasible within the context of the participants was it? (4) How could the intervention be modified or refined? These overarching questions were explored using a semi-structured interview framework to allow the pertinent qualitative information to be gathered in a flexible manner and to actively probe participants about unexpected issues they raised. The interviews were conducted by the researchers in locations mutually agreed with participants, and they were each audiorecorded and then fully transcribed. A constant comparison process was used by the researchers, in that they reflected on and discussed completed interviews, and revised the questions schedule accordingly to ensure a broad capture of new important information. The PROFAID intervention The intervention comprised two parts: (1) a training workshop for support staff/families and (2) three visits and ongoing support from a physiotherapist.

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(1) Training workshop: Educating support workers and family about the importance of assisting the person they support to exercise and participate in physical activities to maintain safe mobility was considered crucial for sustainability of the intervention [15]. A one-hour workshop was conducted to impart this information. The researchers emphasised that the physiotherapy prescribed exercises needed to become part of the person’s daily routine and completed every day. (2) Physiotherapy: Two physiotherapists with experience in working with people with ID delivered the intervention. One researcher (LH) trained the physiotherapists and regularly contacted them to discuss the intervention and provide advice where necessary. During the three visits the physiotherapist became acquainted with the participant and provided them with two to three individualised exercises that were aimed at increasing lower limb strength and improving balance capabilities; exercises that the person would do every day as part of their normal daily routine. The participant was photographed doing the exercises and was provided with a chart of the photographs with a brief exercise description, and a calendar on which to tick off daily completion of the exercises. Our previous work [described above] had established that having more than three exercises and an accompanying specific exercise period was difficult to integrate into daily life, whereas two or three exercises that become part of a routine alongside daily activities, such as eating breakfast and brushing teeth, might be more readily adhered to. In addition, the participant was encouraged to attend a physical activity of choice once a week, such as swimming or walking. The physiotherapist then contacted the participant weekly or fortnightly via telephone to ensure the exercise programme was going well, to answer any queries, and to encourage continued participation. The details of the PROFAID intervention are shown in Table 1.

Table 1. Details of the PROFAID intervention. Visit

Task

Visit 1: The physiotherapist . . .

 Gets to know and develops a rapport with participant and support person  Using a colourful diagrammatic plain language pamphlet (specifically designed for the study) explains the importance of physical activity and exercises to reduce falls risk, maintain mobility and health  Establishes what the participant’s daily schedule is, what physical activity they most enjoy, their interests, and what would be feasible physical activity to do in their context  Decides on 2–3 exercises aimed at strengthening lower limb muscles and challenging balance that are best suited for the participant. Teaches the participant, and the support worker as appropriate, these exercises and takes photographs of participant performing exercises  Discusses with the participant and their support worker what physical activity the participant will participate in once a week  Checks heart rate, blood pressure and person’s medical information to ensure the person can safely exercise  Consults participant’s general practitioner if necessary

Visit 2: The physiotherapist . . .

 Ensures the participant knows how to do the prescribed exercises  Discusses participation in the chosen physical activity programme  Provides participant with a folder containing this information and a participation calendar to keep a record of their exercise and physical activity participation  The six month participation calendar included a photograph of the participant performing each exercise – participant is requested to tick each day they do the exercise  Participants encouraged to do their exercises each day of the week at the same time of day (so it became as regular as ‘‘brushing your teeth’’), and their physical activity at least once a week

Visit 3: The physiotherapist then maintains regular support by means of either e-mail or telephone . . .

   

Checks participant doing exercises correctly and answers any queries or concerns Answers any questions or concerns Encourages participation in the exercise and physical activity Alters exercises as appropriate

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Data analysis The total score of the Tinetti Gait and Balance Instrument was calculated, as well as both the gait and balance sub-scores and all three scores were used in the analysis. For the other outcome measures, the total scores were calculated and used in the analysis. Descriptive statistics were calculated for all quantitative measures. The differences in outcomes before and after intervention were calculated with the related samples sign test as the sample was not large enough to meet parametric assumptions; the significance level was set at p50.05. As the data were not symmetrically distributed, the method described by Hodges– Lehmann estimated the difference in medians with their associated 95% confidence intervals. The effect size for each outcome was calculated with the following formula: group mean difference divided by the baseline SD [31]. Effect size was interpreted according to Cohen’s criteria: small effect size (0.20), moderate (0.50) and large (40.80) [32]. Data were analysed using SPSS Statistics (version 19, Chicago, IL). The general inductive approach [33] was used to analyse the qualitative data, as this approach was suited to answering our specific study research questions. All transcripts were systematically and meticulously read by researchers, and a coding framework was developed on discussion. As new codes become evident on multiple readings, further discussion and adjustments to the coding framework were made. On further deliberation the codes were collapsed into categories, which were in turn conceptualised into the main themes. Particular attention was paid to whether the codes and themes were evident in the interviews with the participants with ID as well as the support staff. During the analysis process the Research Advisory Group were consulted and asked to assist in the verification of emerging codes, categorisations and themes. The quantitative and qualitative data were finally interrogated for convergences, complementarities and dissonances in order to triangulate and integrate the findings. Two sets of findings are said to (1) converge if they indicate a consistent picture; (2) be complementary if they indicate diverse but compatible pictures or (3) be dissonant if they produce radically different pictures that they require a rethinking of the assumptions or aims of the overall study [34].

Results Twenty-nine adults with a wide range of ID (mild ¼ 9, moderate ¼ 11, severe ¼ 6, profound ¼ 3) participated in the study (13 males and 16 females, age range 29–71 years, mean 53, SD 10.9 years), however, final data could only be collected for 27 people as one person passed away during the study period and one person was unable to do the final physical tests due to a fracture sustained while engaged in an activity unrelated to the study. Twenty-two participants reported living in residential homes; the remaining seven lived in supported independent living arrangements. Although all participants were considered to have a falls risk and 22 participants had experienced a fall in the year prior; five had not fallen and previous fall history was not known for two participants. Of the 22 fallers, two had sustained a fracture as result of their fall. Table 2 reports the health conditions of participants. Table 3 shows the prescribed exercises and chosen physical activities. Quantitative findings Tables 4 and 5 present data collected for the outcomes measured at baseline and 6 months. Only the BSID changed significantly (p ¼ 0.04) after the 6-month intervention period with a group median score change of two points, with a small effect size of

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Table 2. Medical and health status of participants with ID (n ¼ 29). Does the person have any of the following conditions? Specific disabilities, e.g. cerebral palsy Epilepsy Medical conditions, e.g. diabetes Orthopaedic conditions, e.g. arthritis Visual problems Mood disorders, e.g. anxiety Communication difficulties Hearing problems Behavioural issues, e.g. impulsiveness Physical disabilities Problems with walking Incontinence Weight issues, e.g. overweight Is the person on medications Use of mobility device, e.g. walker

Yes n (%) 10 11 9 12 11 11 11 2 13 6 12 11 7 29 8

(34.5%) (37%) (31%) (41%) (38%) (38%) (38%) (7%) (45%) (21%) (41%) (38%) (24%) (100%) (28%)

No n (%) 19 18 20 17 18 18 18 27 16 23 17 18 22 0 21

(65.5%) (62%) (69%) (59%) (62%) (62%) (62%) (93%) (55%) (79%) (59%) (62%) (76%) (0%) (72%)

0.13. There was a trend towards significant change in the Index of Participation in Domestic Life (p ¼ 0.06). Although, as part of the intervention, participants were asked to maintain a six-month participation calendar, this was done to a variable degree and we were unable to collect these data for all participants, so were unable to confirm how well participants adhered to the intervention. Qualitative findings Ten participants with ID were able to and agreed to be interviewed. Eight support workers agreed to be interviewed. In only one interview, the support worker was interviewed alongside the person they supported. The analysis of interview data across participants with ID and support workers led to four themes relating to the acceptability, utility and feasibility of the intervention. Theme 1: Understanding the intervention Subtheme 1.1: What am I doing and why am I doing it?. The level of understanding that participants with ID held about the intervention varied. Most participants were able to describe the tasks they had been asked to undertake as part of the intervention including both the exercises they had been set and the chart they had been asked to tick each time they completed their exercises: ‘‘I walked up and down the steps 10 times. And I stood on one leg you know, and I did that’’ (Person with ID). While participants generally understood and could describe what they had been asked to do, only some participants with ID confidently answered questions about why they were involved in the intervention: ‘‘To stop me falling over’’ (Person with ID). Others were more hesitant in their response, but clearly understood that the exercises they had been set were intended to help them with their balance and mobility: ‘‘Um, is it to do with balancing . . . to stop tripping’’ (Person with ID). For participants who did not have well-developed verbal skills or who were unavailable for interview, the interviews with support workers provided additional information about the understanding of participants. Subtheme 1.2: Was the right support worker involved?. The intervention was designed to involve encouragement from support workers. It became evident that there were variations in awareness of the intervention when we interviewed support workers of participants who lived in residential care: ‘‘I wasn’t actually aware

Prevention of falls in intellectual disability

DOI: 10.3109/09638288.2015.1017613

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Table 3. Examples of the exercises and physical activities used in the PROFAID intervention. Types of exercises prescribed

Types of physical activities chosen

      

 Walk around garden to collect stones or leaves, walk to letter box to fetch mail, put laundry away at night,  Wipe down the tables after meals  Walking programme (inside or outside)  Walk to washing line with staff member, collect pegs from line and place in a basket, bring in the washing  Dancing  Swimming  Horse riding  Exercise bike  Play ball – throw and catch.  Treasure hunt requiring lots of walking  Ten pin bowling  Aqua jogging  Vacuuming house  Circuit class at a gym

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In sitting – hit the balloon up into the air with the stick  5 Sit on couch and straighten leg and hold for 3 s. Each leg  10 Seated in a chair without arm rests – throw a ball into bucket Bridging  10 Sit to stand without using arms  10 Squats  10 Increase time spent in standing during daily activities (e.g. showering, meal preparation) or an activity (e.g. read magazine) Stretch arms up while standing in shower Standing, holding onto the back of a chair – stand on one leg and lift other knee up to waist height; stand on one leg and extend leg backwards; stand on one for leg for 10 s; kick a ball accurately at a target Stand in tandem between a table and a chair for 30 s Stand on one leg on a cushion for 30 s Steps – use the rail and walk up the steps to go into the house Step ups, holding onto a counter top  10 Step up and down while holding onto washing basket  10. Assisted walking around house Backwards walking up and down the lounge  3 (with staff member) Sideways walking up and down the lounge  3 (with staff member) Picking up objects from the floor – pick up at least 3 items on 3 occasions each day. Placing 10 objects one at a time on a top shelve Place three logs on floor, walk stepping over the logs and repeat  10 (with staff member)

Table 4. Data collected for all outcomes measured at baseline (BL) and after 6 months (FU) (n ¼ 27). BSID

GARS-M

TB&GI total score

TB&GI gait score

TB&GI balance score

BBS

IPDL

ICI

(Score/41)

(Score/21)

(Score/28)

(Score/12)

(Score/16)

(Score/ 28)

(Score/26)

(Score/80)

BL

FU

BL

FU

BL

FU

BL

FU

BL

FU

BL

FU

BL

FU

BL

FU

Mean 32.1 Median 35.0 SD 9.5 Minimum 8 Maximum 41

33.4 37.0 9.5 10 41

7.9 9.0 4.9 0 17

8.0 9.0 5.3 0 16

21.4 22.0 6.0 3 28

21.3 22.0 7.4 5 28

8.9 9.0 2.9 2 12

9.1 9.0 2.7 2 12

11.9 13.0 4.4 1 16

12.2 13.0 5.0 1 16

13.2 13.0 8.3 0 28

13.7 15.0 8.9 0 28

7.9 6.0 7.5 0 25

8.7 6.0 7.6 0 25

12.9 11.0 9.0 2 38

14.3 13.0 10.5 2 41

BSID: Balance Scale for Intellectual Disability; GARS-M: Modified Gait Abnormality Rating Scale; TB&GI: Tinetti Gait and Balance Instrument; BBS: Berg Balance Scale; IPDL: Index of Participation in Domestic Life; ICI: Index of Community Involvement; BL: baseline; FU: 6 month followup; SD: standard deviation.

that she had put herself in for the study, so I wasn’t aware of that’’ (Support worker). Some support workers reflected on the need for the team of staff to be aware of the intervention: ‘‘And if your staff are more aware of what’s going on and kind of like how often he should be doing them or whatever we can prompt him and remind him to do them as well’’ (Support worker). An issue that complicated the input of support workers was what to do when participants indicated they did not want to do the prescribed exercises on a particular day: No because once they refused then we had to take the refusal, we didn’t sort of keep going on and on about getting it done, if they said no it was no and we just had to take that. (Support worker) . . . but if you, you know if you try and engage him in ways that he doesn’t actually realise he’s doing it he’s pretty good. (Support worker) Several people with ID who took part in the intervention lived independently and received only a low level of formal support. These individuals were able to participate in the study and to carry out the tasks they had been asked to do, although may have benefitted from support to make the exercises or activity more

enjoyable: ‘‘I remembered and did them myself. . . . . . . Have to do exercises’’ (Person with ID). Theme 2: Routine and reality Some participants with ID or their support workers liked the suggestion of finding a regular time to schedule the exercises, which was made as part of the intervention: I would do the exercises and have breakfast and that and then do what I’ve got to do during the day. (Person with ID) He has a daily data sheet which is like the things that he has to do every day, and then I just put inside that folder the exercises . . . So every time somebody opens, whoever was working with [Person with ID] opened up his folder they saw that and they saw that they had to do that as well. (Support worker) For other participants, scheduling was not achieved due to having busy lives or living in a busy residential facility: ‘‘Some days it was hard depending, coz I mean this is a very busy house’’ (Support worker). Moving to a different residential facility impacted on adherence to exercises. This scenario is not likely to be a regular

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Table 5. Sign test with Hodges–Lehmann estimated difference in medians with their associated 95% confidence intervals: results and calculated effect size for all outcomes (n ¼ 27). Outcome: Baseline score – Six month score BSID GARS-M TB&GI total score TB&GI gait score TB&GI balance score Berg Balance Scale Index of Participation in Domestic Life Index of Community Involvement

p Value

Estimate

0.04* 1.00 0.69 1.00 0.68 1.00 0.06 0.85

1.00 0.00 0.00 0.00 0.50 0.00 1.00 1.50

95% Confidence interval 0.00 0.50 2.50 0.50 0.50 1.00 0.00 2.00

to to to to to to to to

2.50 1.00 2.00 0.50 1.50 1.50 2.00 4.50

Effect size 0.13 0.03 0.02 0.05 0.08 0.06 0.12 0.16

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BSID: Balance Scale for Intellectual Disability; GARS-M: Modified Gait Abnormality Rating Scale; TB&GI: Tinetti Balance and Gait Instrument. *Significant at p50.05.

occurrence but could have lasting impact: ‘‘I haven’t [giggles]. I’ve been telling [Physiotherapist] that . . . . . . Coz I’ve just moved into a new house and . . . ’’ (Person with ID). Theme 3: Remembering what I have to do In addition to attempting to fit the exercises into a routine, a number of components of the intervention were cited by participants as helping them engage in the exercises. Subtheme 3.1: Doing things I like to do. The choice over which activity to do was valued by participants, who often cited this with more enthusiasm than the prescribed balance exercises: ‘‘I love my walks you know. I love walking’’ (Person with ID). Subtheme 3.2: The exercise charts and telephone calls. The charts containing personalised photos of the balance exercises were not always retained or used as intended, but were cited as reminder of what had been prescribed by some: Well [Physiotherapist] asked me to do a lot of exercises. . . . and then she gave me like a diagram and photographs of what I’ve got to do . . . . . . Yes it does help me to remember, because I say to myself when I get home now, I stand on one leg, that’s right you know, then later on go outside and up and down the step, up and down the step, up and down the step, that’s [me] doing it you know. (Person with ID) The follow-up telephone calls were also an important component of the intervention being remembered: Interviewer: Yeah, Ok. So did [Physiotherapist] ring you very often? Person with ID: Yes she did. Interviewer: Yeah, and when she rang you did you do your exercises for a while and then forget or? Person with ID: Yeah, I’d do them then. Theme 4: What happens beyond the study itself? Another polarising point was whether or not participants intended to continue with the exercises beyond the initially specified timeframe of the study and the assessments. There was a logic among many participants that once the study period was over, the exercises should be stopped: Person with ID: I won’t do them anymore. Interviewer: OK. Why wouldn’t you do them anymore? Person with ID: Coz we’ve finished.

This was particularly related to the initial supply of exercise charts running out: Interviewer: OK. And then um [Physiotherapist] left a picture with a chart to tick off, and did that happen or? Support worker: Um it did yeah. I think we’ve finished that now. Interviewer: Do you know where those charts are? Support worker: Um I could look [laughs]. The intention of the intervention was to set up ongoing exercising, and some participants were keen to do so: ‘‘I’ll do yeah, I’ll go and do it on my own you know. I can just do it on my own . . . . . . Yeah because I thought well now that I am used to it you know, I know what I’m doing . . . ’’ (Person with ID). Suggestions for ongoing support centred around maintaining contact as a reminder and helping participants vary or amend the exercises to make them more interesting and more or less demanding if needed: ‘‘And I think sometimes it’s good to touch base though through that. Like maybe in six months I’d say ‘‘Hey are we on the right track? Do we need to change things slightly?’’ (Support worker). Yeah perhaps um it’d be a good idea to just have a physio come every now and then and introduce new and harder exercises. (Support worker) Some participants had picked up ways of making the exercises more demanding and were applying them: ‘‘And then she said like if I had my feet so far apart, and then bring it back like that, see that’s a harder one’’ (Person with ID).

Discussion We investigated the feasibility and short-term benefits of a novel approach to prevent falls in adults with ID. Our intervention was achievable and acceptable to our participants with ID and those who support them. Appropriate exercises and a physical activity could be found for all participants with ID, irrespective of the level of ID, although for many this required a high level of assistance from support staff. Six months after initiating the PROFAID intervention with participants with ID there was a significant improvement in the BSID and a trend towards significant improvement in the Index of Participation in Domestic Life, potentially inferring the benefit of the programme to improve balance and increase physical activity participation. Four themes within the qualitative interviews highlighted the acceptability, utility and feasibility of the intervention. The

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DOI: 10.3109/09638288.2015.1017613

intervention fitted well with some participants’ routines but busy routines and changes to routine affected the fit. Components of the intervention, particularly choice and enjoyment, supported participants with ID in remembering what exercises and physical activities to do. The end of the study signalled a logical end to exercising for some participants with ID but others were continuing to exercise, and ongoing physiotherapy input was raised as important to support participants with ID overcome setbacks and increase the intensity of their exercises where appropriate following the successful initial planning of exercises. Overall, both the quantitative and qualitative findings provide evidence of the acceptability, utility, and feasibility of the programme. Below, we discuss this support in relation to previous research and implications for service providers and individuals with ID. Nine participants with ID could be considered at baseline to have good balance as they scored 25 or over on the total score of the Tinetti Gait and Balance instrument, a cut point score considered to differentiate between fallers and non-fallers [10]. At six months, 11 participants with ID had scores over 24 points. Further, two-point change on this scale is considered to be clinically significant [10]; 10 (34.5%) participants with ID achieved this after the PROFAID intervention; six (21%) participants with ID, however, reduced their total Tinetti scores by two or more points. Finding clinical tests of balance that can be reliably administered to people with ID is problematic [6,8]. Although we based our choice of outcome measures on reported clinometric properties and successful use in people with ID in previous studies [6,8,23–26], some measures could not be fully administrated as a considerable proportion of participants with ID would not (as opposed to could not) do the test item. The short form Berg Balance Scale proved particularly difficult for many of our participants with ID; 14 participants (48%) would not do two or more items of the scale, two participants would not do one item. Sackley et al. [24] administered the long form of the Berg Balance Scale to 47 people with ID and reported that 11 participants had difficulty in completing assessment items. We chose the short form in the hope that more people would be able to complete it, but this was not the case. Similarly, for the Tinetti Gait and Balance Instrument, at baseline 13 participants with ID (45%) would not close their eyes and two participants (7%) did not want the ‘‘nudge’’ test to be done. Chiba et al. [10] reported more success with the Tinetti Gait and Balance Instrument when testing 144 people with a wide range of cognitive abilities; only two participants were reported unable to complete all items. These authors described extensive use of encouraging strategies to enable people to perform the test items. For the BSID, five participants with ID (17%) would not do the ‘‘pick up a drink bottle from the floor’’ item and four (14%) would not walk across a mat. Of interest, one Ma¯ori participant would not walk across the mat (which was a thick exercise mat) as she noted that it is culturally inappropriate to walk over a mat you might sleep on. The BSID was recently developed [23], based on stakeholder consultation to include test items that people with ID would find familiar, and thus theoretically be comfortable attempting, but the current study demonstrates that it too has practical limitations. Additionally, although a significant improvement in this measure post-intervention was demonstrated, the effect size for this was small [32]. Within each of the four qualitative themes there were key variations in the success of the intervention, with some expected and unexpected reasons for success or barriers to exercise. In the first theme, there were variations in what participants with ID and support workers understood about the purpose of the intervention and what it entailed, which connect with the utility of the

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intervention. A lack of understanding may in part be created by the awareness or cognitive ability levels of the person with ID. The intervention aimed to compensate for participant-related awareness issues where relevant by closely working with support workers and services as a whole, which required active engagement of support workers but it became evident that not always the right support workers were in-the-know. The two extremes of the variation in understanding were either (1) participants with ID and their support workers were engaged by the intervention, committed to the exercises and activities, and clear about what they had been asked to do and why or (2) participants with ID and/or their support workers who were not convinced, not committed or unclear about the purpose and potential outcomes. Many of our participants with ID lived in residential homes supported by paid support workers. High turnovers of staff as well as staff shortages have previously been identified as barriers to people with ID regularly participating in exercises [15]. This may have been the reason for some support workers in this study not realising that one of the people they supported was in the study or being unaware of the study as they did not attend the training workshop at the beginning of the study. Additionally, the training workshop was only one hour in duration; this may not have been sufficient time to fully emphasise the importance of the staff members’ role in assisting participants with ID to exercise. In the second theme, participants also raised variations in the success of tying the intervention to daily routines. Those participants with ID who successfully followed the intended intervention had established a daily routine. Some of these participants were in supported living services and some were in group homes. The two extremes of the variation in fitting in with daily routines were either (1) in the context of group homes, having staff who were able to create opportunities for the routine to be established in that environment and recognised the importance of physical activity or (2) situations in which the daily routine was considered already too busy to include additional activities, changes in services (such as moving location) that disrupted routines, or staff who did not believe in the value of physical activity in general or for the specific participant with ID. These variations indicate what is required for the intervention to be feasible in the context of services and individuals’ lives. In the third theme, it was noted that those participants with ID who engaged in the intervention were supported in doing so by two factors in addition to routine: (a) being offered choice over the activity they wanted to do or enjoying the prescribed exercises and (b) the two structured forms of reminder that were made available on a daily basis (the exercise tick charts) and on an interim basis (the reminders from the physiotherapist). Offering choice arose from our recognition of successful engagement in other research and consultation [7,35]. The two extremes of variation in the offering of choice were either (1) remembering what exercise to do being aided by involvement in the planning of their tailored exercise plan and input into the prescribed exercises through discussion, modelling, personalised photographs, charts and reminders or (2) chosen activities not happening due to reliance on a specific support worker or other specific set up. These variations provide evidence of the acceptability and utility of the intervention. Support workers need to know what the chosen activity entails and be able to commit to supporting that activity on a regular basis to help maintain participants’ motivation. Ongoing discussion about whether the chosen activity is feasible, is prompted, is strenuous enough and remains desired by the participant could all be important aspects to consider in future research. In the fourth theme, it was evident that some participants with ID and support workers were only accepting of the intervention

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when they were being reminded to do exercises and had a framework within which to do it, which was seen as having stopped after the study period was finished. This was contrary to the aim of establishing ongoing acceptable and manageable exercise programme. The two extremes of variation in what happened beyond the study itself were (1) participants with ID who highlighted how they were keeping going with the exercises and had chosen activities beyond the study because they appeared to have developed self-sustaining intrinsic motivation that relied on positive feedback of important outcomes, a sense of enjoyment, and a sense of self-efficacy over the intensity of their exercising and (2) those who adhered to the intended intervention but only through extrinsic motivation arising from being part of the study and/or instructed by support workers. This theme connects with the self-determination theory of motivation and the drives of competence, autonomy and relatedness [36]. These findings also raise questions about the best way to establish interventions that are not driven by the researchers’ motivation to gather data and instead have long-lasting feasibility to engage people with ID in falls prevention exercises and activities. The lack of a control group could be viewed as a study limitation; however, we were evaluating the feasibility and potential benefits of the approach, not its effectiveness. Further, we were unable to obtain a good record of exercise adherence as, although participants were asked to complete a six month participation calendar, not all of them did this. A possible limitation was the proxy completion of questionnaires by those supporting participants with ID who were unable to complete such outcome measures themselves. Although acceptable reliability between proxy and participant reporting has been demonstrated [29], we acknowledge that proxy responses are not an unadulterated substitution but rather an optimal means of gathering information when a participant is unable to selfreport [37]. A strength of the study was the robust nature of our methodology and steps taken to ensure the trustworthiness of our findings. We used a mixed methods approach with allowed for triangulation of data from a variety of sources, multiple researchers analysed and discussed the qualitative data, and a Research Advisory Group advised on each aspect of the study, including verifying our qualitative findings.

Conclusions Four sources of data were triangulated in this feasibility study: (1) details of the prescribed exercises and chosen activities demonstrate the feasibility of the intervention as a way of setting falls prevention exercises; (2) information about the reliability and acceptability of the quantitative assessments highlight the most appropriate ways of quantitating; (3) quantitative improvement in balance on the BSID indicate the utility of the intervention and (4) qualitative themes around the participants with ID’s and support workers’ views of the intervention raise variations in success of achieving the aims of the intervention. In combination these sources of data provide some evidence for the benefits, acceptability, utility and feasibility of the intervention and provide key questions for further research and implementation. The overall narrative from this mixed methods study was one of complementarity – the findings indicate diverse but compatible pictures of the issues around provision of falls prevention exercises for people with ID.

Declaration of interest The authors declare no conflict of interest. The study was funded by the Health Research Council of New Zealand (grant number: 11/54).

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Ethical approval This study was approved by the New Zealand Upper South A Regional Ethics Committee (URA/I1108104).

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