“Be ready to learn”: a qualitative study of the patient perspective of falls and fall prevention following discharge from a spinal injuries unit

Abstract

Purpose

Falls following a spinal cord injury (SCI) can have physical and psychological consequences, although some risk of falls may be acceptable to enable participation in meaningful activity. The study aimed to explore the patients’ perspective of falls and fall prevention after discharge from a inpatient spinal injuries unit.

Methods

An interpretive descriptive approach guided the study. Semi structured interviews were conducted in the 6–12 months post discharge period. Thematic analysis was used to analyze the data and identify themes.

Results

Fifteen individuals with SCI, with a mean age of 57 years and varied fall experiences were included. Three themes were identified including: 1. Expectation of falling; 2. Learning from my own experience and the experience of others’ and 3. How to prevent falls. Learning from their own experience and the experience of others was highly valued by persons with SCI and influenced expectations of falls. A variety of strategies were used to prevent falls.

Conclusions

Strategies that include learning from others, include activities that are individual and provide skills in self-reflection may aid to make fall prevention meaningful.

IMPLICATIONS FOR REHABILITATION

• Patients want to learn from practical experience and the experience of others with spinal cord injury (SCI).

• Clinicians need to consider patients’ readiness to receive education and could benefit from the inclusion of peers in the delivery of information/education provided.

• A shift of focus for clinicians providing fall prevention education to skills in risk assessment, self-reflection and ability to formulate fall management plans may be beneficial to patients with SCI.

• Patients appreciate demonstration of skills. Clinicians are encouraged to learn wheelchair skills when performing functional tasks and demonstrate them to add credibility to their fall prevention education.

Keywords:

• Spinal cord injury
• falls
• rehabilitation
• patient perspective
• self-management
• community living

Introduction

Falls are common for people with spinal cord injury (SCI) living in the community with 78% of persons who ambulate and 69% of persons who use a wheelchair falling over a 12-month period [1]. Falls are often considered a negative outcome by the health professional team with a focus on the negative consequences and the need for risk mitigation. Physical injuries often occur when individuals with SCI fall, with fractures listed among the more serious injuries [2–6]. Psychosocial consequences of falling include prolonged bed rest, increased fear of falling [7], limited participation in the community [8], limited normal daily activities [6] and affected self-image [9]. While these consequences indicate the need for fall prevention, an understanding of the lived experience of how falls and fall prevention affect daily life of someone with a SCI is needed to target fall prevention strategies [10].

In recent years, research has explored the perspective of falls for persons with SCI living in the community [9,11–15] with findings from these studies that participants strived for independence [9,11], wanted to live a normal life and made choices based on what would have the greatest benefit for their lives even if that scenario created some risk of falls [13]. Persons with SCI may have concerns about falls, although this concern changes over time and is based on whether the perceived gains outweigh the risks [14]. These studies exploring the lived experience add to the existing body of knowledge about falls following SCI however do not explore the crucial transition period post-discharge home from hospital when individuals are often still participating in rehabilitation but are largely navigating life without daily support from a health care team. Perspectives of persons with SCI early after discharge may be valuable to inform the development of targeted fall prevention intervention.

Using photo-elicitation Habib Perez et al. [16] explored the lived experience of falls and falls risk during the 6-month period following transition from hospital to home. Participants were asked to complete a photo-assignment in response to questions related to items, places or situations that increased or decreased their risk of falls and affected ability to participate in work or recreation [16]. Findings from this study were that individuals used lived experience to identify risk factors for falls and their perception of falls were influenced by family and the experience of falls. Falls had an impact on meaningful activity, and it was reported that fall training could be improved. While this study contributes to the evidence on the patient’s perspective, the authors included mostly person who were ambulatory (7 of 8), and acknowledged the research included a small sample size of 8 participants, a large proportion of males (88%), and included only participants with a non-traumatic SCI [16]. With the need for additional research in this area, this current study aimed to explore the perspectives of persons with SCI, who primarily use a wheelchair, in the 6–12 months post discharge from a spinal injuries unit (SIU) about their experience of falls and the impact of falls and fall prevention. The information gained from this study may be used to inform the development of an appropriate consumer-informed fall prevention programme for incorporation in rehabilitation services.

Methods

Design

An interpretive descriptive approach [17] guided the study with data gathered using in-depth semi-structured interviews. An interpretive descriptive approach was chosen due to its ability to utilise subjective perceptions to inform clinical understanding, which in turn can have the potential for clinical application [17]. Participants were recruited while in inpatient rehabilitation and interviewed 6 -12 months after discharge.

Ethical approval was received from the Metro South Human Research Ethics Committee (Reference number: HREC/2018/QMS/46617), the Medical Research Ethics Committee, The University of Queensland (Approval number: 2019000070), and Griffith University (Reference number: 2019/016)

Participants and setting

The study included 15 participants who had been discharged from the spinal injuries unit (SIU) at the Princess Alexandra Hospital, a major tertiary hospital in Queensland, Australia. The SIU is a 40 bed, inpatient, specialised service which forms part of the Queensland Spinal Cord Injuries Service (QSCIS). The SIU offers rehabilitation services to persons with both traumatic injuries and non-traumatic injuries and provides a service for those persons with a SCI who develop complications which require specialised treatment.

Participants were eligible for inclusion in the study if they were: 1) Aged over 18, 2) Level of English sufficient to participant in an interview, 3) Diagnosis of a non-progressive SCI, 4) Used a wheelchair as their primary means of mobility at the time of recruitment, 5) Adequate endurance to participate in a 1-h long interview, 6) Sufficient cognitive ability to give informed consent. The inclusion criteria did not specify level or completeness of injury, age or gender to allow for variation of participants. If an individual indicated willingness to participate written informed consent was obtained. In instances where the participant was unable to use a pen, verbal consent was documented.

Participants were recruited at two single time points in March 2019 and June 2020. The study recruited 22 participants although seven participants were lost at time of interview as they were unable to be contacted. At the time of recruitment all participants used a wheelchair most of the time, although in the time between recruitment and participating in the interview, two participants became mostly ambulatory, and two participants became ambulatory for at least a small part of the time. The sample consisted of four females and eleven males, had a mean age of 57 years (range 25–78), and included nine participants who sustained a traumatic SCI with the remaining participants’ SCI due to non-traumatic means. Participant demographics are included in Table 1. At the time of interview seven participants had experienced a fall since being discharged from the hospital, with two experiencing multiple falls. Of the eight participants who had not experienced a fall since being discharged from the hospital, four experienced one or more falls during their inpatient admission. No participants reported falling both after discharge and on the inpatient ward.

Table 1. Participant demographics.

Participant number	Age (years)	Sex	Level of SCI	AIS	Time of interview since discharge (months)	Living alone	Fall description	Experienced a physical consequence
1	78	Female	T10	D	12	No	Yes – single fall since discharge in the home	Yes
2	49	Male	C2	D	12	Yes	Yes (4) – multiple falls since discharge in the home	No
3	61	Female	T10	D	12	No	Yes – single fall since discharge in the home	No
4	74	Male	C2	D	12	No	Yes – single fall since discharge in the community	Yes
5	60	Female	T7	D	12	No	Yes (6) – multiple falls since discharge in the home	Yes
6	59	Male	T4	A	6	No	Yes (2) – multiple falls while an inpatient on the ward	No
7	47	Male	T8	B	12	No	Yes – single fall while an inpatient in the community	Yes
8	73	Male	T3	A	12	No	No	No
9	25	Male	C6	A	6	Yes	No	No
10	44	Female	T12	C	12	No	Yes – single fall while an inpatient in the community	Yes
11	74	Male	C2	C	7	No	No	No
12	43	Male	T9	D	7	No	Yes – single fall since discharge in the home	No
13	60	Male	L4	A	10	Yes	Yes – single fall while an inpatient on the ward	Yes
14	55	Male	C1	D	10	Yes	No	No
15	59	Male	T6	A	9	Yes	Yes – single fall since discharge in the home	Yes

Of the eleven who had experienced a fall, seven had experienced a physical consequence. These consequences ranged from bruising to a significant head injury. Other consequences experienced by participants included embarrassment, fear, worry, and concern for others who needed to help after the fall. Falls impacted self-efficacy and confidence as participants felt “embarrassed,” “felt stupid,” “vulnerable,” and “worried.”

Data collection

Participants were contacted by phone between 6- and 12-months post discharge to complete an interview (mean time 34 min) with the aim of gathering perspective across the 6–12 months post discharge time frame. Semi-structured interviews were conducted by KM between April 2020 and May 2021. Details of falls were collected retrospectively. With no additional new information obtained towards the end of data collection, the authors assumed data saturation was reached. All interviews were completed via phone due to the global pandemic, COVID-19, were audio recorded with the participants’ consent and field notes were taken which included initial thoughts following the interview and a summary of the interview’s main ideas. One participant had assistance from his wife to participate. Interviews followed an interview guide which was developed based on knowledge of prior research and gaps identified (see Supplementary Appendix A). Probing questions were used to further explore the patient perspective. The interviews covered content related to the participant’s experience of falls, trips and stumbles, the impact of falls and fall prevention on their lives, and information pertaining to what they would recommend for a fall prevention education program. Demographic data such as age, sex and level of injury were collected at the end of the interview.

Data analysis

Data analysis followed the six phases of thematic analysis outlined by Braun and Clarke [18]. This method was chosen because it is not constricted to a particular theoretical framework so can be used with interpretive description [18]. It can be used to make sense of shared meanings and experiences, and it has been used previously when attempting to make sense of the experience of persons with SCI [19]. Table 2 outlines the thematic analyses process followed which included the consolidated criteria for reporting qualitative research (COREQ) [20].

Table 2. Six phases of thematic analysis [18].

Phase	Actions completed
Familiarising yourself with the dataset	Review of field note summaries. With funding available transcription of the interviews completed by an external company. Transcription checked with audio by KM. Data were read multiple times by KM and notes were taken of initial thoughts.
Coding	Two transcripts independently coded by two members of the research team (KM and FP) with data organised in NVivo software. FP and KM met to discuss initial coding, with codes added and edited based on mutual agreeance. From this discussion an initial code list developed. JF confirmed the code list using a coded interview. KM completed the coding of all interviews with additional codes added. JF, KM and FP reviewed final comprehensive code list with agreeance on final list.
Generating initial themes	Codes sorted into potential themes by KM and data reorganised under each of these themes. Thematic map developed by KM to visually represent the relationships between codes and themes.
Developing and reviewing themes	Each theme and codes within that theme were reviewed. Review of the entire data set and refinement of the themes completed.
Refining, defining, and naming themes	A detailed analysis of the identified themes was conducted which included ensuring each theme had a single idea and that themes were not repetitive. A brief synopsis of each theme completed. How the themes fit in the story in relation to the original research question were considered.
Writing up	A detailed account of the data with the use of extracts from the data to support the themes was presented in relation to the research question. Quotes were taken from the transcribed interviews and included in the article. Consolidated criteria for reporting qualitative research (COREQ), [20] guideline was used to ensure that a comprehensive report was produced.

Following the evaluative criterion set by Lincoln and Guba (1985), steps were taken to enhance the trustworthiness of the data, including credibility, transferability, dependability, and confirmability [21]. To address credibility, the research team met regularly at the beginning of the study, during the research design phase and throughout data collection and analysis. These meetings were used to debrief, and worked to uncover any assumptions, perspectives, and bias that the researcher may have. Member checking to confirm the description of the participant’s experience of falls was completed following each interview by providing the participant with a written summary of their interview for review. The summary written by KM included the talking points in the format of key ideas discussed. No responses were received from participants to change or deny content of the summary.

Details of the participants, inclusion criteria and practice context were provided in the report to allow the reader to decide about the transferability of the results. To demonstrate dependability, a third member of the research team reviewed coding of one interview using the codes previously identified as a way of externally auditing the codes. In this study the research team consisted of a clinician working in the area of spinal rehabilitation, the director of the SIU, two university professors, and a university lecturer. Four members of the research team are occupational therapists by background although KM was the only researcher working clinically. SA is a Spinal Rehabilitation Consultant. KM had worked within the QSCIS for over 5 years, and she had extensive knowledge of the ward processes and intervention provided to patients while on the ward and had informally discussed falls with people with SCI. At the time of recruitment and interviews KM did not work on the SIU and had not worked with any participant as part of clinical care. To manage potential bias, and address confirmability a reflective journal was maintained by KM during the recruitment, data collection and data analysis which explored the assumptions and preconceived ideas of KM. This was in addition regular discussion of the findings as they emerged, and an audit trail being kept by KM throughout the study duration.

Results

Three themes were identified during the data analysis, and these were 1) expectations of falling, 2) learning from my own experience and others’ experience and, 3) how to prevent falls. These themes and their sub themes are described below with supporting quotes from participants presented.

Theme one: Expectations of falling

The first theme included the participants’ expectations about the likelihood they would experience a fall including whether they needed to prepare for falls, and their expectations of whether falls would have consequences. Within this theme, two sub-themes emerged which included the expectations of experiencing a fall and expectations of consequence. These sub themes are described below.

Expectations of experiencing a fall

Expectations of falling were influenced by participants’ sense of control, whether they felt safe and secure, and from hearing about the experience of others. A sense of control for participants was centred around things that they believed they could do to prevent falls. Being physically strong and being careful were two examples of factors that participants felt reduced their risk of falling. For example, one participant described, “Yeah. I’m actually quite a lot stronger. I can actually get up, um, quite easily now……So, um, you know, my chances of falling are quite, ah, slim” (P12, T9 AIS D, 43 years). Most participants who used a wheelchair believed that they were in a safe space with little risk of falling while sitting in the wheelchair, “people that fall out of wheelchairs and stuff like that, you know, that’s it, they’ve got to be doing actually, stupid things to be honest with you” (P8, T3 AIS A, 73 years). However, not all participants shared the belief that falls could be avoided by being sensible, with three participants expecting falls as inevitable and out of their control, for example, ‘…you know, really, it’s just reality, it’s like you ride a pushbike, you’re going to fall off somewhere in your lifetime, aren’t you, you know’(P15, T6 AIS A, 59 years). As well as the lifelong nature of SCI, participants described their lack of control over aspects of the environment which may contribute to falls in the future, for example:

Up here it’s bound to happen with the amount of rainfall and stuff like that that’s around the place. Things get mossy and mouldy and slippery and what have you. At some stage it will happen someone along the line, but you try not to, as I said, and in your head try not to but, you know, don’t know how many years I’ve got left, well, I dare say one or two might happen within that time (P13, L4 AIS A, 60 years).

Learning from the experience of others also shaped the participants’ expectations of falls. This was reflected by one participant, “Knowing someone who’s – who’s fallen out makes you, you know, doubly cautious I guess, or doubly aware that it’s a possibility” (P6, T4 AIS A, 59 years). Knowing that another person fell and was injured while going to the toilet had one participant thinking “yeah, well, that can happen” (P1, T10 AIS D, 78 years).

Reflecting on information provided about falls and falling by health professionals in the inpatient ward, one participant recalled being told “it’s not if you fall, it’s when you fall” (P10, T12 AIS C, 44 years), and what to do if they fell which was to call an ambulance, be in control and to not let anyone lift you. Participant 8 (T3 AIS A, 73 years) said ‘I know that if she’s [wife] not here or if something happens to me, I’ve got to spend hours on the floor or whatever it is before somebody turns up’. Participants valued being taught by physiotherapists to get up off the ground. Learning this skill was part of personal safety for one participant who described:

…My legs don’t work properly, and if I fall again, and something might choose to hurt me, knocks me off my balance, I can’t get off the ground and defend myself, like – like, I am, like, really a target for someone. (P2, C2 AIS D, 49 years).

While this education was provided as part of the inpatient rehabilitation stay, one participant reflected that, “… I remember going to rehab at the [hospital], and they, um, went through the process of falling, you know. I thought, well, I won’t be needing that. I’m not falling anywhere” (P5, T7 AIS D, 60 years). Participants who had this belief were then “quite surprised that it actually happened” (P12, T9 AIS D, 43 years).

Expectations of consequence

Regardless of whether participants expected to fall or did not expect to fall, they all shared their perspectives about what a fall may mean for them and the persons that care for them. Physical consequences were a particular concern, with one participant describing, “Oh, well, yeah, you just don’t know what’s going to happen with them, you know? Um, you know, if you broke a hip, there’d be nothing left to life, you know?……. So, ah, you can’t afford to have a fall” (P5, T7 AIS D, 60 years). Within this discussion about physical consequences, participants talked about their perception that consequences would be more severe if they had a fall now that they had a SCI. For example:

There’s sort of more consequences to me having a fall now especially in being in a house by myself so it’s, you know, only a phone call away from help or I yell out the front door or something for the neighbours, I’ve still got to be conscious of the fall, um, the damage – more damage you can do now because you’ve got less protection (P13, L4 AIS A, 60 years).

The impact of falls on others was mentioned by participants with one participant suggesting that “She’s [wife] the one that’s got to put all of the pieces back together again if I fall out” (P8, T3 AIS A, 73 years).

The experience of having a fall with consequence impacted the expectations of future consequence. For some falls resulted in short term affects that only lasted a few days such as “I hurt one of my arms, I can’t remember what I did and yeah, just aches and pains and horrible things happened…. A couple of days for it to all settle down again” (P10, T12 AIS C, 44 years). For one participant they described lifelong injuries from the head injury they sustained from a fall.

As well as these physical injuries, psychological consequences were also discussed. It was explained by participant 3 (T10 AIS D, 61 years) as ‘Every time you transfer it’s there in the back of your brain;… because I’ve already fallen, I don’t want to do that again or, it could be worse next time’.

Participants who fell described being worried about how to get up of the floor and “scared that it was going to happen again” (P10, T12 AIS C, 44 years). Participant 4 (C2 AIS D, 74 years) said that ‘…I wasn’t expecting it, and it just come out of the blue’.

Theme two: Learning from my own experience and the experience of others

The second theme related to the preferred method of learning for participants which included the sub themes learning from their own experience and learning from the experience of others’. Participants reported using these methods of learning during rehabilitation, in the period post discharge from the hospital, and when they experienced a fall.

Learning from my own experience

The participants’ experience of having a new SCI and leaving the supported environment of the hospital was described as a “rude shock” (P8, T3 AIS A, 73 years) with one participant noting that “it’s not until you get out there that you, um, you know, you fully understand” (P5, T7 AIS D, 60 years). The concept of needing to learn from their own experience was highlighted by another participant:

you’ve got to have your adventure when you get home that’s part and parcel of learning, you can’t, you can’t expect to learn about stuff in high school by not going……You’ve got to go home; you’ve got to be there and do it firsthand (P7, T8 AIS B, 47 years).

Participants describe a learning curve on discharge and needing to “… be ready to learn, be ready to adapt and [not] take it too seriously” (P7, T8 AIS B, 47 years). To facilitate learning how to do new things, participants discussed working it out for themselves using trial and error: “we change, we do things, try things differently and stuff, try and challenge ourselves to do things or try to make things easier for ourselves” (P13, L4 AIS A, 60 years). This personal experience was how participants learnt about fall prevention.

The experience of a fall provided participants with opportunities for learning. All participants who had fallen described changes that they had made performing the activity that caused the fall. Participant 7 (T8 AIS B, 47 years) explained:

Every single time I come to that kind of, exactly that type of exit the roadway or down to the shops now I constantly readjust myself to my chair and, and lean forward and, you know, take all the appropriate measures to not let that happen again.

For a small few, learning from a fall changed practices during other activities. For example, one participant who fell while walking, discussed that they now put on shoes to transfer:

it changed after the fall actually - - - because, well, I never used to put the slippers on in the PA [hospital], I used to, ah, just stand up in me bare feet and hop on the – on the, ah, the wheelchair…but I think I was more conscious after I had the fall (P4, C2 AIS D, 74 years).

Learning from the experience of others

While learning from their own experience was fundamental, another important method of learning was from others who also had a SCI and were able to share their lived experiences. This included persons who had been at SIU for longer as well as formal peer support offered in the SIU. Reflecting on peer leaning learning and support about falls, participants valued:

… the stories…. It’s, you know, life experiences, um, and what other people have come – come across or heard about and, um, yeah. It’s just building up empathy that, you know, whoever you’re talking to knows what you – where you’re at and, um, they’ve experienced it, sort of thing (P5, T7 AIS D, 60 years).

Although they did not have lived experience to share, health professionals were afforded credibility as experts when they demonstrated real life skills. Participant 15 (T6 AIS A, 59 years) described one example of learning wheelchair skills from a physiotherapist who was teaching and demonstrating skills seated in a wheelchair:

That was enough for me to go, “Oh, well, they’re - they’re not reading this out of a textbook,” you know?……They know how - they know what it’s like to be in a wheelchair. Not only that, they know - they know how to do all their, they weren’t tricks, they were just getting themselves out of situations that were pretty full-on, and it was just amazing.

While learning from the experience of other people was valued, participants had difficulty offering their own advice on fall prevention if they had not fallen and noted that generalisability of their experience to others can be difficult:

I can’t, because my story, my injury and my legs, and my injuries is different to what they would be like… So, no spinal injury too, with psychological and emotional feeling, how it affects you and how you deal with it, is, like, totally different to each – each person (P2, C2 AIS D, 49 years).

Reflecting on how best to deliver information, another participant highlighted the value of learning from experience in real life as opposed to learning from advice:

Oh, well it’s very hard to - to tell somebody about preventing a fall because some people are, it doesn’t matter, it’s like when you were a child you can say to your child, don’t go there, don’t do this and don’t do that but they still go ahead and do it. So, you know, me just telling somebody else that they can do this or they can’t do that, ah, you know, I don’t reckon it, you know, you can tell them but whether they take it any notice of you that’s another thing (P8, T3 AIS A, 73 years).

Theme three: How to prevent falls

The third theme, how to prevent falls, included what participants do to prevent falls but also the advice that they would offer others. Fall prevention strategies were used by all participants although for most, preventing falls was not something that affected their day to day lives. Strategies to prevent falls were described in subthemes and included cognitive strategies, support from others, use of equipment and changes to the environment.

Cognitive strategies

There were several ways that participants had adapted their thinking or approach to life which they believed helped them to prevent falls. All but one participant identified the need to be alert to safety risks as important in the prevention of falls. These participants were mindful of activities and situations in which they could fall and made sure they utilised strategies to prevent them. Needing to be aware was understood as vital to not falling and this included being aware of the environment as well as your own limitations.

With regards to being aware of the environment, participants highlighted that “the tiniest little thing will - will throw you off the chair” (P15, T6 AIS A, 59 years), and “You can’t just drive out and do this and do that without watching what you’re doing, because you do that, you’ve only got to hit a pothole, and it’s all over” (P14, C1 AIS D, 55 years).

Strategies used to minimise the risk of falling were described as being aware of your own limitations, working within your capabilities, and remembering what you have been taught: “Just, you know, not taking too many things on, not just being, you know, I am not superman” (P13, L4 AIS A, 60 years). Another component of being aware was not getting distracted and focusing on what you are doing. This included “keeping your head about you and knowing what’s going on” (P7, T8 AIS B, 47 years) when in the care of others such as when being buckled into a car or when being hoisted.

The participants planned what they were doing and used routine as a strategy to prevent falls. For example, “If someone came in and changed my system I’d be lost” (P4, C2 AIS D, 74 years). Another participant described that, in the interest of safety, they were no longer able to be spontaneous:

You can’t just get up and go. If someone says to me, “Right, let’s go down the coffee shop,” I’ve got to think ahead. If someone, you know, and normally sometimes you run for a bus, you run for a train, you go and do this, do that. It’s not lazy. If someone said the train’s going, must go in five minutes, well it’s tough luck, I miss it (P14, C1 AIS D, 55 years).

Support from others

As well as using cognitive strategies, participants also acknowledged the importance of support from others in the prevention of falls. Family and carers provided support when completing activities or were required to complete tasks that participants were no longer able to complete safely: “[The carers] turn around backwards and you know keep hold of my handles and make sure I don’t tip over or anything like that going up steps and stuff like that” (P13, L4 AIS A, 60 years).

Another participant shared insight into how their husband was helping to prevent falls:

I’m finding now when I go for our – our walk in the afternoons and my – and my husband’s holding my hand, I wander off, and if I didn’t have him holding my hand I would be wandering off and I’d probably, you know, and I’m aware that – that – that could cause your falling (P1, T10 AIS D, 78 years).

While support from family and carers was usually seen as positive, one described it as too much, “…I’m like a school kid being smacked on the hand any time I go somewhere” (P8, T3 AIS A, 73 years).

Support needs varied and participants considered the person with SCI to be in the best position to know if they needed help: “… if they don’t have the strength to do [the transfer] by themselves, um, they’ll need to try to get some help, wait for assistance, ah, and, you know, not try to do it by themselves” (P12, T9 AIS D, 43 years). Support was recommended when trying new things, and valued in the inpatient ward, “Well yeah, there’s still support there and there’s plenty of people around and, um, if you half come out someone’s going to pick you up… Because if it all goes pear-shaped, um, they’ll run you up to the cat scanner” (P6, T4 AIS A, 59 years).

The role of equipment

The role of equipment in fall prevention was highlighted by participants and included features of the wheelchair were described as useful in the prevention of falls including the use of brakes, tippers, and positioning of the castors for transferring. A chest strap was an example of equipment used in the community to prevent falls:

Um, I’m always just so careful when it comes to, like, being in my chair and if I’m going for a wander into town, making sure I’ve got my seatbelt and my chest strap on and when I’m in the car, making sure that they’ve got all the things buckled in and everything’s tight and stuff like that (P10, T12 AIS C, 44 years).

Participants’ own experience of falls and of being home or difficulties at home was reflected in the falls strategies they employed and recommended. For example, through personal experience of arriving home late at night and not having adequate lighting to transfer, participant 7 (T8 AIS B, 47 years) suggested that people carry a torch on them to safely transfer out of the car at night. For a participant who had a fall due to the brakes not being on their bed, checking equipment became significant in the prevention of future falls:

…I would probably say, don’t forget to check the equipment and see how safe it is before, and make sure all the equipment’s got brakes on. You know, it’s all right to put the brake on in the wheelchair. It’s all right to put the brake on with the Sara Stedy [a standing aid used for transfers] as you’re getting on it, you know, that sort of thing. But who remembers to put – make sure the brakes on the bed? (P3, T10 AIS D, 61 years).

A participant who fell backwards over their tippers recommended that: “Um, well wheelchair tippers don’t stop you tipping…. Yeah, don’t rely on the tippers at all, that’s what I would suggest to someone…. Pretend they’re not there……Yep. Do not rely on them one little bit” (P7, T8 AIS B, 47 years).

Changes to the environment

The environment was another area focused on in fall prevention and often changes were made by participants to make it safer, such as removal of obstacles, ensuring the floor was not wet or wearing shoes when transferring in wet environments. Installation of rails and small changes were described within the home such as:

I have got a couple of little lower little shelving units in and stuff like that and changed the unit in the bathroom to hold medications and stuff in underneath that aren’t being used as often and then have my clothes and positioned open shelving for my clothes so that I can get to them easy (P13, L4 AIS A, 60 years).

It was acknowledged that the hospital environment is different from the community but that the experience of moving about the hospital grounds was valuable:

You know, get around – getting around – the more you get around the more you’ll kind of get the experience, or even getting around the hospital grounds, you learn that things are not all smooth sailing. If you just go from the ward to the gym and back, it’s – it’s completely flat and smooth and places aren’t necessarily like that. So they’d be the main things, just get some experience of different terrain (P6, T4 AIS A, 59 years).

Discussion

This study aimed to explore the patient perspectives of falls and fall prevention in the 6 -12 months after discharge from a SIU. Participants described mixed expectations about the likelihood that they would experience a fall and the consequences they may experience. Fall prevention strategies were utilised by all participants and were often the result of learning from the patient’s own experience and learning from others with SCI.

A key finding from this study was that patients’ expectation of falls were shaped by their own experience. While fall prevention strategies were taught on the ward and patients were informed of fall risk, before the experience of a fall some participants did not believe they would have a fall and perceived that the information on fall prevention was not relevant to them. This creates difficulties for clinicians who are delivering education to newly diagnosed patients in an inpatient setting who have limited experience living with a SCI. The finding from this study and Habib Perez et al. [16] indicate that that patients learn from the experience of others with SCI who have fallen. Hearing from others with a SCI may highlight to patients who have not had a fall that there is a real risk of falls, may change expectations and improve uptake of fall prevention strategies. Peer to peer mentoring programs have demonstrated significant positive effect on individual’s self-efficacy and reduction in hospital readmission [22]. Fall prevention classes with peers as facilitators such as the “Steady As You Go” program have been successful at reducing falls with increased attendance [23]. Learning from others’ experience may be a way to adjust expectations of falling and increase the use of fall prevention strategies by patients who have not experienced a fall.

Another key finding was that patients learnt about their own capabilities and made changes based their own experience, as well as the experience of others. One way to target fall prevention using patients own experience and learning could be to provide practical experiences on the ward within real life scenarios that are meaningful to the patient [24]. An example of this is reviewing and offering fall prevention education while a patient is reaching out of base of support plugging in a phone charger on the ward as opposed to in a therapy area. This method of education may be useful with patients with a newly diagnosed SCI as fall prevention is incorporated into the development of other personal skills rather than being seen as an isolated occasion of service. To further reinforce information, completing this education with peers or using stories of patient experiences might increase relevance and increase adoption of strategies. The delivery of education in real life scenarios addresses another learning mode favoured raised by participants which is that they value seeing skills demonstrated rather than just providing verbal explanation.

The inpatient setting is a time to test boundaries within the ward and in the community while there is support from the healthcare team [25]. While inpatients might feel overwhelmed receiving information related to fall prevention during this period [26], it is important as research identifies that 24% of patients are falling during their admission to an SIU [27]. Inpatient clinicians can provide opportunities and skills for learning by reviewing near misses and falls experienced when patients are learning new skills, accessing the community, or following weekend leave. As patients are discharged and attempt new skills in the community, continued learning and reflection can be supported by community services. Increasing the skill of self-reflection and formation of fall management plans with patients to prevent future falls may be a way to reduce falls and harm from falls.

This research extends upon the findings of Habib Perez et al. [16] with a larger sample size, including a higher proportion of females, wheelchair users and participants with traumatic injuries. The findings from this current study are consistent with their findings including the importance of learning from lived experience, the influence of the experience of others, expectations of consequence and fall strategies employed. Our findings lend further support to recommendations that fall prevention needs to be delivered by both health professionals and peers with SCI and needs to be delivered across the continuum of care to support patients as they develop skills and learn from their experience. The similarities in the findings between this and the study by Habib Perez et al. [16] which was completed in Canada, suggest that these findings could be applied to fall prevention beyond the local environment.

Fall strategies are often individualised [16] and based on participants’ own experience. This is evident in examples provided by participants which related to the falls and near misses that they had experienced. One challenge therefore, is the delivery of falls education and how to make it meaningful to individuals when everyone is different. The inclusion of a variety of experiences may provide patients with information they can relate to and use, as well as understand the challenges with falls to be expected in their future living with a life- long disability.

Study strengths and limitations

A strength of this study is that it includes the perspectives of 15 participants with varying level of injury, sex, cause of injury, time since discharge and experience of falls vs no experience of falls. The authors acknowledge the limitations of the study including that due to the global pandemic, COVID − 19 all interviews were completed via phone rather than face to face. Also due to the global pandemic, participant self-reported that they had not being going out in the community as much. This may have led to reduced number of falls and experience of falls in the 12 months post discharge. The timing of interviews, with some interviews completed at the beginning of COVID − 19 compared to others completed later may have led to varied experiences of spinal rehabilitation. As well as this, fall details were collected retrospectively which relies on participants correct recollection of events which could have impacted falls reported. There was a considerable number of persons who were unable be contacted at time of interview (n = 7). As these persons were not able to be contacted, the reason for their withdrawal could not be obtained.

Conclusion

Individuals with SCI have varied expectations of falling and this is impacted on by their own experience and the experience of others. Persons with SCI learn from and make direct changes in response to experience but also appreciate the experience of others. Future fall prevention programmes may benefit with the inclusion of peer support and a format which promotes skills in risk assessment, self-reflection, and the ability to formulate fall management plans. In addition to this, incorporation of fall prevention education into tasks that are meaningful to persons with SCI and delivered by clinicians who can demonstrate those skills may increase uptake of strategies.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available from the corresponding author, [KM], upon reasonable request.

Additional information

Funding

This research is supported by a research support grant from the University of Queensland Spinal Injury Research Fund.