The experiences of stroke survivors with managing eating 6 months post stroke

Abstract

Introduction: Stroke affects activities of daily living such as eating. Little is known about how stroke survivors cope with eating difficulties in the long term. This research conducted in the United Kingdom explores the complex phenomenon of eating difficulties 6 months post stroke.

Method: This qualitative study used a participatory approach to explore the experiences of seven stroke survivors using a focus group and visual methods of photography, to explore the lived experiences of managing eating with a stroke disability.

Findings: Participants (n = 8) identified barriers to managing eating including physical, social, environmental and emotional issues. Participants recognised that sustaining eating activities regardless of their disabilities was important for their wellbeing. Stroke survivors sought opportunities to participate in occupations that revolved around eating, which enabled them to experience mastery over eating activities. Participants viewed eating activities as a way to self-monitor recovery and progression.

Conclusion: This study informs occupational therapy practice about how people living with stroke strive to adapt to eating difficulties.

Keywords

Stroke eating difficulties visual methods occupation assistive devices

Introduction

Stroke can affect the ability to perform eating activities and dietary intake which in turn impacts on health (Medin et al., 2012). The research literature reflects that, in addition to being essential to life, eating activities are of central importance to other aspects of social and psychological wellbeing and quality of life (Perry and McLaren, 2003a, 2003b). Risks to stroke survivors who are not eating sufficiently include malnutrition, reduced muscle strength and low mood, which have been linked to higher rates of mortality (McLaren and Dickerson, 2000).

Understanding stroke survivors’ experience of eating difficulties is important as this knowledge may inform future stroke care (Medin et al., 2012). To prevent nutritional complications the United Kingdom (UK) national clinical guideline for stroke recommends that all stroke survivors with eating difficulties are provided with appropriate support and assistive devices to help with eating (Intercollegiate Stroke Working Party (ISWP), 2016: 54). The ISWP guideline advocates that stroke survivors should be offered opportunities to practice feeding and cooking activities with assistive devices where indicated (ISWP, 2016: 71). However, there are no occupational therapy-specific studies to explore the experiences of stroke survivors with managing eating and there is limited wider research to inform occupational therapy practice (ISWP, 2016: 54). The aim of this study was to explore the shared eating experiences of stroke survivors using a participatory approach and explore possible coping strategies.

Literature review

The literature describes a number of impairments that impact on stroke survivors’ performance of eating activities. These include motor impairments such as unstable posture (Perry and McLaren, 2003b) and poor coordination of upper limb movements affecting the use of eating utensils (McLaren and Dickerson, 2000). Problems with chewing, swallowing and dribbling (Medin et al., 2010; Perry and McLaren, 2003a) were identified as causing discomfort and fear (Jacobsson et al., 2000; McLaren and Dickerson, 2000; Medin et al., 2010). Perry and McLaren (2003a) identified that sensory impairments such as the ability to taste and smell affected the stroke survivors’ enjoyment of food.

Three other impairments impacting on eating activities include visual disturbances (Perry and McLaren, 2003b), perceptual problems (Medin et al., 2012) and cognitive deficits (McLaren and Dickerson, 2000). Medin et al. (2010) found that life style changes resulting from the stroke could influence aspects of choice such as not being able to shop for food or not being able to prepare and cook food independently (Medin et al., 2010).

Current research suggests that psychosocial aspects of eating disabilities are of equal importance and should not be overlooked in future studies Perry and McLaren, 2003a; Perry and McLaren, 2003b). A small number of studies revealed that eating difficulties affected stroke survivors’ emotional wellbeing (Jacobsson et al., 2000; Medin et al., 2010). Feelings of shame and embarrassment were associated with having to ask for help, and dependency on others (Jacobsson et al., 2000; Medin et al., 2010). In view of the lack of evidence to inform practice, further research is required to explore this important topic.

Design

Participants: sampling and recruitment

A non-probability purposive sampling approach was used to recruit potential participants and to gain a deep understanding of the phenomenon under study. Although purposive sampling is thought to be less rigorous than other sampling strategies it is often used in qualitative research when the participants are accessible to the researcher (Braun and Clarke, 2013). Ritchie and Lewis (2003) argue that rigour in sampling is not necessarily required for qualitative research as the primary concern is to gain an understanding of a particular phenomenon.

The participants (seven stroke survivors and one carer providing conversational support for a participant with aphasia) were recruited from a stroke support group. The researcher held meetings with the leaders of the group and the secretary agreed to distribute the participant information leaflet. The leaders of the group approached members inviting an expression of interest in being involved. Names were passed to the researcher and those interested were contacted by telephone.

Method

Participatory research methods are designed, planned and conducted in collaboration with people whose lived experiences and meaningful occupations are being studied (Bergold and Thomas, 2012). This participatory study combines a focus group and visual methods of photography to explore the complex phenomenon of eating difficulties after stroke by understanding the shared perspectives and reflections of stroke survivors.

Focus groups were selected over semi-structured interviews, for a number of reasons. Focus groups are suitable research methods when participants in the study form a homogenous group of individuals with similar experiences. The dynamic nature of the group facilitates ideas to be brought out which cannot be easily elicited by semi-structured interviews and hence meanings are constructed through social interaction.

The focus group gives participants an opportunity to share their experiences and revise them in the light of similar stories narrated by others in the group. Unlike semi-structured interviews, focus groups encourage participants to express their views freely, talk about their feelings and allow individual experiences to emerge. Focus groups are not designed to obtain conformity or consensus but to elicit a range of opinions, which matched the aim of our study. Furthermore, focus groups provide the opportunity for the researcher and participants to learn and create new meanings together (Cook, 2012).

A strength of focus groups lies in the ability to explore views, beliefs and assumptions as well as observe behaviours and interactions (Green and Thorogood, 2004). Focus groups are a popular method of inquiry in stroke research (Demain et al., 2013), and provide opportunities to involve participants in the knowledge production process (Bergold and Thomas, 2012). Participants were invited to share verbally and illustrate stories using photographs. They were asked to brainstorm solutions to eating difficulties and envision new assistive devices.

Photography is considered an acceptable method of data collection to enhance research into the lived experience. It can provide unique observations which would not otherwise have been uncovered (Nasr et al., 2015; Wills et al., 2016). Participants lead the photography data collection process. They were able to choose what pictures to take and what aspects of their life they wanted to share with others.

Carter and Mankoff (2005) advocate using a disposable camera to encourage research participants to examine their daily life in ways they have not tried before. Photographs are thought to facilitate a deeper sense of understanding between the researcher and the subjects (Willis et al., 2016). Photos can gain unobtrusive insights into sensitive areas and therefore this is an acceptable method of data collection for this study.

A participatory design approach to research involves participants in different aspects, such as study development, design and data collection (Bergold and Thomas, 2012). A patient and public involvement group was created to lead the development of a topic guide, participant information and co-design of the study. This took place through a discussion forum and for those that could not attend completion of a feedback form to obtain the views of the patient and public involvement group on safety, privacy, dignity and participant burden. The topic guide included questions to explore eating difficulties, what changes have been made to adapt to the difficulties and what strategies or equipment where helpful (see Appendix 1).

This joint approach to study development informed the participatory elements of the research and ensured that practical arrangements were not burdensome. This participatory study aimed to ensure it was inclusive by including participants with speech and language difficulties as eating problems can occur in combination with communication impairments (Brady et al., 2013; Carlsson et al., 2004). Speech and language therapists with stroke expertise were invited to co-design aphasia-friendly participant information.

Data collection

Ethical approval was obtained from the University of Sheffield School of Health and Related Research Ethics.

Participants were given the optional opportunity of taking home a disposable camera to take pictures of their eating experiences. Participants were keen to take part in the photography activity, with the exception of two who lived alone and had unilateral arm weakness.

Participants were provided with a plastic pouch, which included a disposable camera with flash, 27 exposures and laminated operating instructions. They also had a practice session on how to operate the camera with the researcher. The information sheet explained that they could take pictures of their friends and family but only if they were informed about how the pictures would be used in the research and verbal consent was obtained. (No photographs of participants’ friends or families are published in this article.) Participants had one week to take photographs before the cameras were collected by the researcher for processing.

Informed consent was taken in writing for the focus group and separate informed consent was taken for participants to take home a disposable camera. Informed consent was obtained before conducting the focus group and for the focus group to be recorded. The focus group was audio recorded and transcribed verbatim.

Trustworthiness

The researcher and the second author are experienced stroke therapists as well as stroke researchers. The participants were not known to the researcher before the study. As a result of the ethical challenges associated with visual data collection, photographs were only used in the focus group. Participants consented for a few selected images to be included in dissemination of the research outcomes and the rest were destroyed after the study.

Further quality assurance was provided by two independent reviewers from Sheffield University reviewing the research protocol and accompanying participant information sheets. This promoted a critical review and evaluation of research projects as a way to stimulate the consideration of a different perspective. This peer review offered additional rigour and provided constructive suggestions for improvement of the research protocol.

Data analysis

Data were analysed by using the seven stages of thematic analysis as outlined by Braun and Clarke (2013). The first stage involved the researcher transcribing verbatim recordings of the focus group. This was analysed alongside the notes of the second author who was observing the focus group interactions. The reflections of the researcher and the second author were compared in discussion following the focus group to examine inter-observer reliability (Braun and Clarke, 2013).

The second stage involved familiarisation with transcriptions; an iterative strategy allowed the transcript to be examined and re-examined in detail, identifying each participant by a pseudonym. In the third stage the whole transcript was coded identifying themes relevant to the research question (Braun and Clarke, 2013). The codes were explored to create emerging themes which were discussed between the researcher and second author. When differences in interpretation were found discussions took place to agree a consensus viewpoint.

In stages four and five themes were reviewed and checked to capture patterns exploring differences and similarities. Themes and subthemes were developed by using mind maps (Buzan, 2011), which helped to demonstrate the relationships between themes (Braun and Clarke, 2013). The authors concluded stages six and seven by finalising and naming the themes, subthemes and writing the report.

Findings

The characteristics of the stroke survivors are presented in Table 1.

Table 1.

Characteristics of stroke survivors.

	Stroke survivors
Mean age	58 years
Mean age	Range 49–68 years
Male/female	4/3
Ethnicity white British	7
Marital status	Widowed 1
	Single 1
	Divorced 1
	Married 4
Employment status	Employed 1
	Retired 5
	Unemployed 1
Onset of stroke over 6 months	7
Experience of eating difficulties	7

The emergent themes and subthemes arising from the analysis of the data have been described below with examples and quotes (see Figure 1).

Figure 1.

Summary of themes.

Theme 1: The impact of stroke on eating experiences

The stroke survivors described five impact factors affecting their ability to eat and participate in eating activities (see Figure 2).

Figure 2.

Impact of stroke on eating experiences.

Subtheme 1: Motor functions

Participants expressed difficulties with motor function. The main areas were in relation to mobility, upper limb movement and coordination of chewing, swallowing and fear of choking. Participants took photographs of places they liked to eat out and these demonstrated some of the challenges. One participant explained how standing with a plate to queue for food was difficult with no provision for those less mobile. Carvery restaurants were identified as inhospitable for people with mobility problems.

I have problems with postural standing because I tend to prefer one side more than the other, a normal person would stand preferably on the left hip or right hip but when you have a stroke what used to be the dominant side could well be the weak side, you have big problems you just have to keep walking round and hope somebody offers you a chair. (P4)

Four participants described biting the lips and inside of the mouth while eating, resulting from difficulties with coordinating movements of the jaw. They reported that this was also affected by loss of sensation and agreed that this took pleasure out of the eating experience.

I think in your lips you have nerve endings and I think some of them don’t work and so you naturally chew your lips and they should move in sequence with your jaw. (P3)

I do bite when I am eating; I bite my lips, because I have no feeling in it. (P1)

Subtheme 2: Sensory function

The participants discussed how sensory impairments affected their eating experiences, especially in the kitchen when they couldn’t feel hot objects.

there’s pans there and you just go to the oven and pull pans out, it’s half way out and you realize, I found it takes a bit of time to actually know it’s hurting you, it’s halfway to hurting you and you’re actually stuck thinking what do I do now? I can’t then focus on anything you can’t be quick enough to know what to do with anything you know it’s a nightmare (P2)

the pan’s there and it’s obvious it’s hot, it’s just boiled up but you still go and grab it you just don’t think, that process isn’t there (P6)

Half of the group reported that their ability to taste food had been affected by changes in eating habits, dietary restrictions and sensory loss which reduced the pleasure of eating. Three participants had experienced visual problems after stroke which affected their ability to see the plate of food and judge distances when taking cutlery up to the mouth.

Because of the problems with my eye sight I would only eat on one side of the plate and it took me ages so what I had to do was start turning my plate round like this (P6)

Subtheme 3: Cognitive and perceptual function

Participants discussed the impact of cognitive deficits such as memory impairment on the performance of cooking activities. Two participants discussed the difficulties they experienced with calculating recipe times and using mental maths skills. Participant 1 shared a story about how he used complex tasks like cooking the Sunday lunch to measure his progress with cognitive skills.

progressively my cooking got better and I could do Sunday dinners and that’s how I knew cognitively I got sharper because you have got all different things coming together all at the same time before you sit down and eat. (P1)

Participants discussed how their ability to perceive objects was a problem in the earlier stages of recovery.

I kept pushing the cup away cause I couldn’t get the distance right and then the boys would throw me a ball, they would laugh at me, because I could just not gauge as daft as it sounds, to pick a biscuit up you still have to find the depth and you go for it and you just end up pushing the plate away from you (P3)

Subtheme 4: Emotional and psychological function

Participants described stroke as an unseen disability and gave examples of when they had wanted people to notice they were struggling with eating activities. In contrast to this, two participants shared how they wanted to be noticed so others could see what they were achieving. Participant 6 told a story of carrying a tray of cups in a cafe to illustrate this point.

I could walk across the room with one hand, but you can see everyone looking, you know thinking look he’s gonna fall over any-minute, they all actually want to help you, and that’s genuine, I actually have to turn them off and say no, I don’t feel embarrassed I feel stronger than anything, and proud that I am beating whatever it is they think that’s going to affect me, I feel that I am in charge, I’m fully responsible for myself and that’s why I tell them no thanks I will do this.

Four of the participants talked of how the stroke had affected physical abilities which left them regressing to ‘childlike’ behaviours such as having someone cut up their food, dribbling and making noises while eating.

yes I can’t use both hands to cut food up, whoever I go out with will usually do it but you know you feel self-conscious, you know somebody to cut your food up like a child. (P3)

They also described the feeling of ‘being mothered’ by others and how this made them self-conscious when eating.

people weren’t looking at me but I thought they were looking at me and then my wife kept coming up and wiping my face which used to annoy me, it’s like your mum used to spit on a cloth and wipe your face… my wife used to wipe my face while we were having something to eat, so I would be self-conscious about whether I had dribbled all over my top or if I was making noises, so you tend not to enjoy the food as much as you usually would because you think people are looking at you and so you opt to stay in.

Subtheme 5: Social life

Three of the participants took photographs of restaurants, cafes and pubs, which they had visited. These photos provided insights into the difficulties with eating out illustrating the realities of life after stroke. Problems such as access to buildings, car parking and space at the table for mobility aids were highlighted. Participants described eating out as an activity that had to be meticulously planned and mastered.

we’ve got it down to a fine art now (P5)

you can’t just drop in now (P7)

Theme 2: Change of lifestyle, roles and relationships

Three participants talked about how they had made changes to their diet as a result of diabetes or weight gain from medication. This meant a change in the types of food they could eat and swapping to healthier options.

my taste has had to change because after I had this stroke I was diagnosed as being diabetic and so I have had to cut sweet stuff out and watch my carbohydrates, so yes my food choices are very different. (P3)

They also discussed having to buy food they could easily open; and in some cases these were not always the healthier options. Participants 7 and 3 photographed difficulties encountered with opening breakfast cereal packaging and peeling fruit one handed.

Two participants talked about how they had learnt to cook after the stroke, buying recipe books and cooking family meals. Although this was not explored in depth, it suggested that this was a new role and they were acquiring new skills.

Theme 3: Adaptation and coping strategies

Participants were striving for mastery of eating activities by learning from experience, learning from others and generating their own strategies and solutions. The group discussed which assistive devices were helpful and which devices were bought but no longer used.

To eat is a necessity, a desire and a pleasure. However, to prepare and cook can be a mighty challenge, but with a little planning, imagination and determination, and maybe a little help with improvised gadgets, it can be very rewarding. (P6)

I mean you can overcome things with stuff on the market now a days, you can buy frozen stuff like mashed potatoes. (P1)

Theme 4: Assistive devices

Participants describe how one-handed tasks in the kitchen were most challenging, including peeling fruit, cracking eggs, using a knife and opening packaging. These were particularly difficult for the two participants that lived alone.

I’ve only bought three things and I’ve used them all, the fruit and veg peeler, a one handed can opener and a jar opener but even if I fully recovered I would still use them, perhaps not the peeler but the other stuff, they are useful. (P3)

The participants used their photographs to illustrate the use of everyday objects which they had adapted to meet needs. A pasta bowl that served as a plate and a grapefruit spoon that became an everyday spoon. The group generated some innovative ways to manage eating difficulties. They were enthusiastic about visioning gadgets to solve eating problems such as a tie that wipes your mouth automatically to prevent dribbling.

Eating activities were part of a spectrum of eating tasks which includes sourcing food, dealing with packaging, preparing food and cooking (see Figures 3 and 4).

Figure 3.

A photograph taken to demonstrate the challenges of dining out.

Figure 4.

A photograph to demonstrate the challenges of managing packaging one handed.

Participants described eating out as a pleasurable activity that they wanted to achieve; however, for some it was no longer a spontaneous activity. Eating out required a number of strategies to navigate inhospitable environments, menu choices and seating arrangements. While two participants stated that they would rather not eat out because of the fear of encountering difficulties, three participants shared their experiences of planning and eating out as a means of achieving personal goals.

Participants described a range of activities which had five elements. The process of eating began with sourcing the food and ensuring it was accessible packaging. This led onto the preparation of food before the performance of cooking activities and finally the eating. They consider all of the elements to be essential to the experience of eating (see Figure 5).

Figure 5.

Spectrum of eating tasks.

Discussion and implications

This study investigates the experiences of stroke survivors with managing eating activities.

Bendz (2000) found that resumption of activities after stroke served as a connection to the past life as well as envisioning a new future. Planning and having a Sunday lunch held significant meaning for all participants as this was a time for social eating with the family. Participants were passionate about this weekly ritual. They felt that cooking a roast chicken lunch was a demonstration of their recovery and in some cases an opportunity to showcase new skills.

Stroke research in Sweden suggests that stroke survivors measure their recovery in terms of how well they are able to resume activities (Bendz, 2000). That study found that stroke survivors were using cooking for self-rehabilitation, to improve competency, measure progress and male participants said it provided a new occupational role in the home.

Eriksson and Tham (2009) suggest that feeling competent in a task is related to regaining a sense of normality. All participants described examples of the emotional impact of eating difficulties, and self-consciousness was a shared theme. Goodley and Lawthom (2006) note the experience of being stared at can adversely affect emotional wellbeing and self-worth. The fears of not fitting cultural norms for eating were expressed by all of the stroke survivors.

Participants described how dribbling; eating noisily and needing assistance with cutting up food were barriers to eating in public. Elias (2000) suggests that little has changed since the end of the 18th century with the cultural norms for table manners which frown upon messy eating. Elias (2000) describes how society has invisible eating habit rules, which form cultural norms for eating in public. Participants discussed how their performance of eating activities had become flawed and childlike, disrupting their ability to comply with social norms for eating. The experience of flawed performance and self-consciousness affected how the participants felt about themselves (Goodley and Lawthom, 2006) and in turn their lack of desire to eat out in public places. This resonates with the stigma experienced by lack of conformity to society’s norms, which facilitates a heightened sense of awareness, being self-critical or avoiding social situations (Marini and Stebnicki, 2012).

The stroke survivors sought opportunities to participate in occupations that revolved around cooking and expressed a desire to master these tasks, which will lead to higher levels of wellbeing (Pritchard et al., 2014). Yerxa (2002: 105) states that ‘people literally create who they are through occupations which connect them to their world and culture’. The participants expressed the importance of participation in everyday eating activities and the positive influence that this had on their psychological wellbeing. Eriksson and Tham (2009) argues that recognising the self in doing activities and sustaining these activities despite interruption is important for people recovering from illness. This potentially offers an explanation as to why the participants were striving for mastery and control in eating activities.

Participants demonstrated a resourceful and resilient attitude towards overcoming eating difficulties. However, the high cost of assistive devices and not being able to try them out before purchase were identified as barriers to success. Assistive devices for the kitchen were thought to be helpful, time saving and useful. The most valued objects were: non-slip mats, jar openers, electric tin openers and vegetable boards.

Boradkar (2010) suggests that kitchen gadgets only retain their meaning and value to the user while they hold functional value. Participants talked about the value and importance of assistive devices as they afforded functional independence, but they did not mention explicitly aesthetic design features. An explanation for this might be that specific questions about design features were not explored in depth or aesthetic design was not a primary concern for these stroke survivors.

The participants were asked to envision new assistive devices for problems they were experiencing and they enjoyed this opportunity while thinking creatively and suggesting innovative ideas to solve everyday problems. McDonagh et al. (2002) promoted the benefits of incorporating users’ views to enhance aesthetics and ergonomic design for assistive devices.

Participants were adapting everyday objects to meet their individual needs. In design research this activity is called ‘hacking’, a method in product design in which everyday objects are adapted to enhance the design or individualise the object for personal use. Norman (2004) suggests personalisation increases the pleasure associated with use, affecting the value placed on an object. Participants talked about how assistive devices for eating ‘looked disabled’. It is possible that by hacking their everyday objects the participants were saving money and avoiding the feelings of stigma associated with products for the disabled.

In contrast to ‘hacking’ and adaptation of everyday devices Williamson (2012) advocates universal design as a solution to the design of assistive devices. The OXO good grip kitchen tools are held up as an example of universal design, addressing the needs of disabled people in everyday products (Williamson, 2012). However, the OXO design has been criticised for lack of aesthetic beauty (Renda and Kuys, 2013).

Experts in participatory research take the view that disability should not be seen as an individual impairment but as a result of the environments, products and services that fail to address the needs of potential users (Coleman et al., 2003). This thinking opens a further debate on whether we should be making assistive devices more aesthetically desirable or facilitating personalisation of everyday devices to meet the individual needs.

Limitations

The risk of researchers imposing their own perceptions onto the participants’ accounts (Goodley and Lawthom, 2006) was reduced by developing a topic guide for the focus group and avoiding leading questions.

A limitation of focus groups is that people are inhibited by the group setting and may not want to share embarrassing stories; also it is not possible to assess if the participants have adapted their stories for the group. However, participants were familiar with each other from the support group and they appeared to talk freely about their life experiences and no disagreements or dominant viewpoints were observed.

This study had a small group sample (n = 7) and therefore we cannot generalise the findings to the wider stroke populations; however, small focus group sizes are acceptable in qualitative research (Liampyttong and Ezzy, 2005).

Visual methods of data collection such as photography could be criticised for the lack of objectivity and formal analysis. However, Gaver et al. (2004) argues that participatory methods such as this provide creative insight into participants’ lives which should not be quantified. Future studies would need to consider the limitation of disposable cameras for participants who live alone or have limited upper limb use as this did limit three participants who were willing to take a camera home.

Implications for practice

This study informs occupational therapy practice about how people living with stroke are striving to overcome eating difficulties. Participants demonstrated resilience and resourcefulness as well as mastering new skills. Occupational therapists need to be aware of the emotional and psychological aspects of managing eating difficulties. The participants’ stories resonate with current disability theory demonstrating that the ‘perception of self’ has a significant effect on emotional and psychological wellbeing, which can negatively impact on the lived experience of stroke survivors.

The use of assistive devices elicited a sense of mastery and achievement as well as improving performance in cooking and eating activities. Although assistive devices were embraced, some of the participants preferred to adapt everyday objects to meet their needs. Possible explanations for this are feeling stigmatised, cost, accessibility, and not being able to try before buying.

The most unexpected finding was the concept of ‘hacking everyday objects’ to meet individual needs; this was viewed as an alternative solution to off-the-shelf devices. Participants preferred adapting their own equipment as it looked more ‘normal’. Occupational therapists are best placed to help and facilitate this hacking approach using everyday objects.

Conclusion

Eating after stroke is a complex multifaceted phenomenon and research into this area requires research methods that peel back the layers of complexity and allow collaborative exploration of the lived experience. Participatory research methods such as photography have provided occupational therapy with opportunities to gain deeper insights into real life contexts and explore the experiences of stroke survivors with managing eating.

Occupational therapists have a significant role to play in supporting and enabling stroke survivors to overcome eating difficulties. It was evident that more research is required to explore which assistive devices for eating and cooking activities are useful and whether new designs are required. Aesthetic appeal and the functionality of assistive devices are key considerations for the engineering and design industry.

Key findings

Visual methods such as photography merit further exploration as a tool to enquire about the lived experience of eating activities after stroke.

Stroke survivors are rich sources of knowledge and expertise when considering designing assistive devices for eating.

What the study has added

This study has provided a number of insights into the experiences of stroke survivors who are managing eating activities. This could be used to inform occupational therapy practice and further research into coping strategies for eating difficulties.

Footnotes

Acknowledgements

The researchers would like to acknowledge and thank the members of Different Strokes Charity and the Sheffield Teaching Hospitals Therapeutics and Palliative Care Patient and Public Panel for their support with this project.

Research ethics

Ethical approval was granted by the University of Sheffield Ethics Committee (003419, 2015). All participants provided written informed consent.

Declaration of conflicting interests

The authors confirm that there is no conflict of interest.

Funding

This research was funded by the NHIR Masters in Clinical Research Studentship.

Appendix 1. Topic guide for the ESSME Focus Group*

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