An investigation in Kitchen aids and upper limb amputees

AN INVESTIGATION INTO KITCHEN AIDS FOR UPPER LIMB AMPUTEES AMAANI AMBER AHMED Aston University|159142954|PD32PRO Dr. Timothy Whitehead|16/01/19

ACKNOWLEDGEMENTS I would like to express my gratitude to Dr. Timothy Whitehead, my project supervisor, for his professional guidance and constructive suggestions during the planning of this project. The time he has given up is particularly appreciated.

Thanks also goes out to the Design staff at Aston University for their time and encouragement.

My appreciation extends out to the staff at Evergreen Occupation Therapists Ltd for their support and participation, which allowed me to gain invaluable insights.

Finally, a thank you to my friends and family for their continuous support throughout my studies and this project in particular.

3

ABSTRACT This dissertation investigates single upper limb amputees and their relationship with the kitchen. The main objective was to identify what tasks were the most difficult in the kitchen and why? 5% of the UK was identified as having one functional hand whether it be due to amputation, stroke or other medical conditions. To gather research various literatures were reviewed, including a book written by a quadruple amputee on her experience in the kitchen. To gain a deeper understanding an Occupational Therapist was interviewed, existing products were looked into, and a focus group was carried out where participants completed cooking tasks with their non-dominant hand to help identify problems. The reoccurring themes that presented themselves were the need of independence, upper limb amputees not using prosthetics, and the clinical aesthetics of the products. The activities that were rated the most difficult included cracking eggs, opening jars, grating cheese, slicing and buttering bread, and chopping. Also, overall this experience was negative as participants felt incompetent and unsatisfied. It was important to note that people did not want one product to be so multifunctional. It was clear a range of products would be created to help complete some of the tasks mentioned above. The target market of 18-60 year olds should be able to use the products independently, and without prosthetics. They will need to be simple to use and ergonomical, as well as aesthetically pleasing.

5

CONT INTRODUCTION 9 Introduction

METHODOLOGY 14 Overview 15 Interview with an Occupational Therapist 15 One Handed Focus Group 16 Existing Products 16 Observational Videos 16 Analysis Method

DISCUSSION 24 Amputee’s Relationship 26 Prosthetics and Functionality 26 Rehabilitation Techniques 26 Aesthetics and Ergonomics 27 Tasks Found Most Difficult 28 Current Products 28 Other Features 29 Personas and Users

CONCLUSIONS 32 Key Findings 32 What this Means for the Product 33 Future Research 33 Next Steps 33 Summary

REFERENCES 36 References 37 Image References

TENTS LITERATURE REVIEW 10 Amputations and Causes 10 Upper Limb Amputations and Who is Affected?

11 Other Causes of a Disabling Arm 11 Assistive Products and Technology 12 Case Studies

RESULTS 18 Prosthetics and Functionality 18 Rehabilitation Techniques 18 Gaining Independence 18 Tools and Equipment 19 Feedback and Reviews 19 What the product should do 20 Tasks Found Most Difficult 21 Techniques Used and Why 23 Emotions and Feelings

LIMITATIONS 30 Prosthetics Vs Ergonomics 30 Amputees Vs Focus Group 31 Tools and Equipment 31 Prosthetics and Physiotherapists 31 Existing Products

DESIGN BRIEF 34 Design Brief

APPENDICES 38 Appendix 1: Focus Group Worksheets 40 Appendix 2: Focus group Raw Data 42 Appendix 3: Interview Questions and Transcription

Figure 1 : Amputee cooking with a prosthetic hook

INTRODUCTION In the UK upper limb amputations account for 5% of total amputations. This resulted in 262 upper limb amputations in 2001/02 in the UK. (National Amputee Statistical Databse, 2003). The primary effect of having one functioning hand was difficulty when carrying out day to day tasks. Eating and being able to prepare and cook food is a necessity for survival, however with one functioning hand (whether it be to amputation, stroke, or broken bone) the ability to do so effectively is reduced. In addition, the individual may also rely upon someone else to provide for them.

This dissertation investigates how developing products for this market can allow upper limb amputees to prepare and cook with less hassle, while enchaining their sense of independence, and self-esteem. ‘Most upper limb referrals tend to be in the younger groups aged between 16-54’ (National Amputee Statistical Databse, 2003). This age range is usually considered to be working autonomously and independently. This issue has been addressed before and there are relevant products on the market (such as rocker knives and cutting boards that hold food in place), yet amputees are still seeking improved products to aid them. Cheryl Douglass (a quadruple amputee) talks about all the issues she has faced in the kitchen and how she has modified equipment in her book: The Bionic chef (Douglass 2015). Jennifer Griffin also stated in an interview that cooking never was discussed in her rehabilitation sessions until she highlighted it and asked what resources were available to her, the response was “not much at all” (Griffin, 2012). This raises the question of why are there not kitchen products or resources for amputees? Why are existing products having to be modified by their amputee users? And what can be done about it?

The aim of this dissertation is to answer the above questions to better understand how a solution can be developed. The following objectives have been proposed to provide meaningful research and insight: •

• •

• • •

Investigating an amputee’s relationship with the kitchen and how it has changed (if it has) prior to the amputation.

Observing amputees cook to allow a better understanding of the key difficulties faced along with the emotions associated with completing these tasks.

Speaking to Physiotherapists and Occupational Therapists to provide a professional and technical overview.

Analysis of rehabilitation exercises to see if they could be incorporated into the solution, as well the use of prosthetics.

Determining if the solution will work alongside prosthetics (and what kind) was an important factor to consider as it would greatly affect the design of the solution.

Reviewing and scrutinising current products on the market to see how well and effectively they perform their function, and using this as a basis to develop better solutions.

9

LITERATURE REVIEW

01

Amputations and Causes

An amputation is the removal of a limb or extremities (such as the arm, leg, fingers or toes), therefore an amputee is someone who has undergone this procedure. An amputee may have one limb removed or a variety (WebMD, 2018). A person who has all four limbs removed is known as a quadruple amputee. Amputations are performed for many reasons. In the UK upper limb amputations accounted for 5% of total amputations, which is 262 upper limb amputations in 2001/02 (National Amputee Statistical Databse, 2003). Below are the common causes of upper limb amputations:

•Trauma: a physical injury (59%)

•Neoplasia: new or abnormal growth of tissue.

•Dysvascularity: poor vascular status in limb. A common cause of this is people

who suffer from diabetes. Amputations caused by diabetes are at an all-time

high with approximately 20 a day.

•Infection

•Neurological disorders such as nerve injury and leprosy.

02

Upper Limb Amputations and Who is Affected

There are many types of upper limb amputations and these are usually defined by what part of the upper limb is amputated. Below are the most common types of upper limb amputations in the UK (National Amputee Statistical Databse, 2003):

•Partial hand amputation (22.5%) is the removal of part of the fingers, wrist or

palm.

•Trans-humeral (20.6%) which is above the elbow.

•Trans-radial (20.2%) which is defined as below the elbow.

•Digits account for 17%

•Forequarter which is the removal of the whole arm.

•Double upper limb amputees account for about 5%

•Shoulder disarticulation (3.4%) where the upper arm bone meets the shoulder.

•Wrist disarticulation (2.3%) where the lower arm meets the wrist.

•Elbow disarticulation (1.1%) where the lower arm is removed by separating the

elbow joint.

Males make up 63% of all upper limb amputations. The largest male age group is between 16-54 (65% of which are males). The largest female age group is also 16-54 (51% of females). Upper limb referrals tend to be in the younger age groups. Some amputations can be caused due to congenital reasons. This is when a child is born without limbs. There is an even split of amputees with congenital amputations. There are 91 upper limb congenital amputations (National Amputee Statistical Databse, 2003).

10

03

Other Causes of A Disabling Arm

STROKE Stroke is another major contributor to the loss of function of an upper limb. There are 15 million strokes worldwide and more than 100,000 strokes in the UK, with approximately 1.2 million stroke survivors. Two thirds of these leave care with a disability. 84% of patients leave hospital requiring assistance with daily life and activities (Stroke Association, 2018).

A common effect of stroke is arm and hand weakness. 80% of survivors struggle with general movement and 70% with arm movement. 40% of people are unable to use one arm in the long term. The muscles affected will feel heavy and numb. Muscles can become stiff and even have spasms which makes it difficult to carry out normal tasks (Stroke Association, 2013).

DIABETIC CHEIROARTHROPATHY Diabetic Cheiroarthropathy is caused by diabetes and is the stiffness and thickness of the hand due to extra collagen being produced which limits mobility. The joints cannot be strengthened, and this severely reduces the hand’s function. It begins in the little finger and spreads overtime to the thumb.

It is found in 8% to 50% of diabetic patients (Virtual Medical Centre, 2004) with 3.2 million people in the UK diagnosed with diabetes (Diabetes UK, 2013).

04

DUPUYTREN’S DISEASE Dupuytren’s disease is like Diabetic Cheiroarthropathy in the sense that the tissue under the skin thickens. It starts in the palm but can extend into the fingers. The hand stays in a bent finger position and is debilitating. It is also hard to treat, surgery is available however the reoccurrence rate of the disease is very high. Even after surgery the hand may not be completely straight and as strong as it was (NHS,2018). This condition affects up to 2 million people in the UK (BMI Health, 2018).

BROKEN BONES In addition to medical conditions/diseases, research suggests that 1 in 100 people break their bones every year in the UK (Daily Mail, 2015). A broken or fractured arm can also cause inconvenience to a person, which makes regular activities difficult. Although it may be temporary, during this recovery period cooking, cleaning and getting dressed all require additional assistance which may not be available to a person if living independently.

Taking the above in consideration overall at least 5% of the UK population has one functioning hand.

Assistive Products and Technology

Assistive products and technology are items that let people suffering from reduced mobility live dignified lives, and help make their lives easier by compensating for an impairment or loss (World Health Organisation, 2016). For example, hearing aids are an assistive product for those with hearing impairments. They allow the users to hear better and put them at ease.

In this study assistive products are required by amputees. The world Health Organisation (WHO) believes that 1 billion people require these assistive aids, however only 1 in 10 people have access to them. These aids reduce the needs of caregivers and provide greater mobility and independence to their users. This affects mental health in a positive way and is usually the first step of getting these users out of bed and out the house. It encourages inclusion and participation. They also reduce the effects of gradual functional decline and prevent secondary health conditions from using products incorrectly, or not having the products in the first place to help (World Health Organisation, 2016).

These products can, and are also used by the elderly, the disabled, those with non-communicable diseases, mental health conditions and gradual functional decline (World Health Organisation, 2016).

11

CASE STUDIES To understand the subject in greater detail, three case studies have been presented, the first is of Cheryl Douglass who is an amputee, which highlights her relationship with the kitchen and the problems she faced. The second is about Louise which highlights the use of prosthetics and craving independence, and finally Jennifer Griffin who also covers rehabilitation and recovery.

01

Cheryl Douglass (Figure 2) is a quadruple amputee who wrote a book titled ‘The bionic chef: cooking with or without hands.’ In the book she discusses her amputation and how it affected her relationship with the kitchen. She mentions how she adapted tasks and equipment to suit her better.

02

Louise’s story is featured in an amputee self-help book titled ‘Nine lives: A self-help book for amputees.’ She talks about her accident, prosthetics and her goal of achieving independence again. These two sources have been compared and the reoccurring themes have been discussed below:

Tools, Equipment & Modifications:

As an amputee the correct tools and equipment can make cooking easier.

Cheryl found that she did not need “ergonomically sophisticated equipment or a lot of electronic novelties.” It was clear that just a few simple tools helped more than one tool that was multifunctional. Tools were adapted and used for more than their purpose. Cheryl found more than one use for a tool. For example, she’d use her spring-loaded scissors to open packaging as well as cutting vegetables like spring onions. Cheryl has a list of equipment she would recommend to people including battery powered grinders, angled measuring cups, tweezers, L-shaped knives, spoked chopping boards and suction cup bases for items. Despite having all these tools Cheryl still found herself making modifications to these such as adding first aid tape for extra stickiness to handles, or adding non-slip foam tubing to allow for better comfort and grip. Cheryl said that flat rather than cylindrical handles were used because they provided a more secure grip. (Douglass, 2015)

Prosthetics:

Cheryl is a quadruple amputee and required both of her upper limb prosthetics. Cheryl has myoelectric hands which respond to the electrical signals produced by muscle contractions in her residual limbs.

However, her prosthetics are still prone to break on a regular basis and take weeks to be repaired. They are also “a far cry from the dexterity of the hands most of us are born with.” As technology improves more advanced and versatile prosthetics are being produced, however these can be very expensive. Most products are also not designed to be used with prosthetic hands and this makes the task even harder (Douglass, 2015). Louise made it clear that one form of prosthetics she did not need was a prosthetic arm. “I tried one but to be honest I didn’t really like it. I can manage just fine with just one hand, though some things have taken a bit of practice. I can do my hair, use my mobile and do my make up with one hand” (Colquhoun, 2013)

Figure 3 : Cheryl Douglass

Gaining Independence:

After the operation Cheryl required assistants and carers to look after her. She has expressed that she had a goal of achieving independence and savoured the freedom of moving around on her own, as it was not easy to be dependent on people. She became a full-time job for her husband and this made her feel useless. It got to the point where the constant acts of kindness began to hurt her feelings. She wanted to make herself useful and give back to those that were helping her (Douglass, 2015).

“The only thing that Louise fears for the future is having to be overly reliant on others, and not being able to do things for herself that she has already re-learned how to do since her limb loss” (Colquhoun, 2013)

What tasks they needed help with?

Throughout her book Cheryl talked about different techniques for tasks that she found difficult. These included cracking and peeling eggs, cutting, chopping and peeling vegetables, stirring, buttering bread, as well as undoing packaging such as air tight packages and opening cans (Douglass, 2015).

Figure 2 : Jennifer Griffin

03

Jennifer Griffin (Figure 3) is also a quadruple amputee after losing her limbs to sepsis. She enjoyed baking before her operation, but after the operation she had more time to learn and became more interested in cooking

Resources available and Recovery:

Jennifer stated that cooking hardly ever came up during her rehabilitation sessions until she brought it up. In terms of resources there was “not much at all”. Jennifer was looking for an instructional class with a teacher who could think outside the box. It was important not to be afraid of exploring what suited her and allowed her to work around the situation, as well as having the desire to accomplish the challenge. (Griffin, 2012)

Re-learning Skills and Adapting:

The skills Jennifer found the most difficult to relearn consisted of stirring, cracking eggs and chopping. Anything she stirred would move the bowl around; to overcome this she would push the bowl up in a corner to prevent it moving.

Cracking an egg took a lot of time to perfect and holding a knife was difficult, so she opted for a pizza cutter instead to chop up her food due to the thicker handles for better grip. (Griffin, 2013) Based on the literature review there needs to be a deeper understanding of the problems faced in the kitchen, what causes these problems and how they are solved?

The tools and equipment discussed need to be investigated further to identify how they work. It is also important to gain a technical view from a professional in the industry who can help clarify and bring to light issues with products, and the way people interact with them in the kitchen.

13

METHODOLOGY A number of methods were used to gain a deeper understanding of the situation. The variety of methods included interviews, focus groups, product research and observation videos. All these methods are inductive as they allow for the emergence of results and insights. Details can be seen in the table below (Figure 4). All participants completed ethics forms before completing the study

Figure 4: Table dispalying methods used and why, along with analysis methods

14

01

Interview with an

Occupational Therapist

An experienced Occupational Therapist was interviewed to gain an understanding of what difficulties those with one functioning hand face in their homes and kitchen. The Occupational Therapist was contacted via email after finding their contact details on a therapist database (Royal College of Occupational Therapists). This Therapist was chosen due to their experience with sarcoma patients and their professional qualification in housing design and adaptation.

They have been in the field since 1995 and have an in depth understanding of orthopaedics and trauma, amputee rehabilitation, and hand therapy and splinting (Evergreen occupational therapy services, 2013). The interview was carried out over phone and recorded using and audio recorder for transcription purposes. A total of 11 questions were pre determined to allow the relevant information to be discussed, and the interview lasted around 40 minutes.

(See appendix 3 for questions) The interview was semi structured with pre-determined questions.

This allowed for flexible wording and allowed questions to be added or removed based on the responses given, resulting in a deeper understanding and clarification of the issue (Design Kit, 2018). This interview was inductive to allow the theory to develop and to bring to light further issues to support the theory. The result of this interview was qualitative data to be analysed.

02

One-Handed Focus Group

The participants used had two functioning hands, however by tying their dominant hand behind their back allowed the experience of an amputee to be simulated. Participants were asked to use their non-dominant hand because it would prove more difficult to carry out tasks. By catering for the non-dominant hand, the dominant hand was also catered for. Participants were asked to carry out a set list of 3 cooking tasks (scrambled eggs and toast, pasta, and making a sandwich), and were observed. These tasks were chosen as they required a variety of techniques such as cracking eggs, opening jars, chopping, straining items and mixing. These tasks were identified when carrying out the literature review and the purpose of this activity was to validate these results. The participants were provided with ingredients but were asked to use their own equipment. This allowed a variety of techniques to be used and analysed, as one member may have a specialised tool. A user journey map was created on how the task would be carried out by a person with two functioning hands, and compared against how a person with one functioning hand carried out the task (see appendix 1 for journey maps). This was done to help visualise the users experience from beginning to end (Design Kit, 2018). At each stage the participant was asked to vocalise what emotions they felt (for example, frustrated, relieved, anxious). This was categorised into positive and negative. After they completed each task a Likert scale was used to assess how difficult they found the task, and what part of the task they found the most difficult. Participants were between the age range of 21-50 as this is within the age range of most upper limb amputees of 16-54 (National Amputee Statistical Databse, 2003).

Also at this age people have the ability to be independent. There was an even split between male and female between the six participants to ensure everyone was catered for. Amputees were not used because it was difficult to find willing participants to, and due to the ethical issues involved with using amputees. This allowed first hand observations and insight. This task was recommended by the Occupational Therapist interviewed and was a task they carried out themselves on to-be amputees. This method was also inductive. The outcome was qualitative but once analysed it could be put into graphs.

15

03

Existing Products

04

Observational Videos

Videos were posted online by members of the public who had purchased and used existing products for one handed use. This allowed a better understanding of what is currently on the market, what these products do well, and what issues people face when using these products, as well as what tasks these products allowed people to carry out. The people using these products either had one functioning hand or simulated having one hand by tying their hand behind their back. A large amount of these videos were found on Youtube. This resulted in quantitative data that could be grouped into reoccurring themes.

Videos looking into products for those with hand mobility issues were analysed. The first was of a person using equipment at the gym and what products he used. The gloves he used allowed him to grip bars and move. This was done to see if these products could be adapted or incorporated into the kitchen. On the Great British Bake Off (2018), one of the contestants had the digits on her hand amputated. She made her way to the end of the competition by baking with this disability. Following on from this a Romanian cooking show had two contestants, one who had no use of his hands and the other had limited mobility in her hands, due to an explosion when she was younger. Looking into these episodes allowed problems to be identified, as well as looking into how the issues were worked around. Again, participants could not be observed due to ethical concerns. A problem with this was that there was no opportunity to ask for clarification or expansion on issues. This resulted in quantitative data again to gain a more in depth understanding.

Analysis

The results from the methods above will be analysed (Figure 5). The aim of all these methods is to draw out themes depending on how often they occur, and how important they are. The data was organised to gain a broader understanding then put under ‘codes’. A code is a word to describe a group of evidence such as quotes or insights with a similar message. These codes are then put into overarching themes, linking similar codes together. In this example codes could include ‘modifications to equipment’, and ‘problems with current equipment’. Both of these codes have an overarching theme of ‘equipment’. The purpose of this is to allow information to emerge from the data to help form a deeper understanding.

16

Figure 5: Thematic analysis used for the results obtained

RESULTS This section covers the findings revealed through the primary research carried out. The results have been organised into themes and shown below. The purpose of this study is to find out what every day cooking tasks amputees struggle with and why, as well as looking into the use of prosthetics as assistive products, and how commonly they are used. All quotes from the Occupational Therapist (OT) can be seen in the full interview (see appendix 3 for full interview).

01

Prosthetics and Functionality

It is common for Occupational Therapists to come across prosthetics when working with amputees. Some of the prosthetics have been described as “awful”, “archaic” and “like a mannequin”. There were people on both ends of the spectrum when it came to prosthetics. A lady found that she wore her prosthetics less than she had the chance to, because it gave her blisters. Others had “absolutely supersonic” prosthetics who funded for these themselves.

People are limited to what is available on the NHS. A lot of the upper limb patients “just didn’t bother” as it was thought to be more hassle than it was worth. Upper limb prosthetics are very uncomfortable to wear as they would rub the armpit and chafe.

“They’re very uncomfortable to wear, it’s almost like a gun holster. They found it was rubbing their armpit and uncomfortable, so they didn’t really bother with upper limb as much” OT

02

Rehabilitation Techniques

During occupational therapy classes, Occupational Therapists tend to work closely with Physiotherapists. As the Physiotherapists do day to day exercises, the Occupational Therapists complete indirect, meaningful, in practice exercises with people. These include lifting heavy items, moving things, and reaching.

“This is the beauty of occupational therapy, we work very closely with Physiotherapists because we do the same sort of thing, they’re doing day to day exercises and we’re doing meaningful exercises which incorporated lifting weights, you just don’t know you’re doing it with us because you’re doing some sort of practical activity whilst doing it” OT

03

Gaining Independence

Before catering for amputees an Occupational Therapist will complete a kitchen assessment.

This assessment looks at what the person requires help with but also how independent they were before the operation. “There’s no point making a MasterChef out of someone if they’ve never really done it before” for example, it is common for mothers with young families to want to resume their role in the house, and be able to provide and cook for their partner and children. It was important for them to feel that an amputation was not going to hinder them, and make them lose their role within the house.

Another example looks at elderly gentlemen who would have recently lost their partners, and were now going through the process of losing a limb, and they were taught how to make themselves a drink. Even though they were reliant on others such as their wives before, they now had no choice but to become independent.

“At the end of the day you just want people to be as independent as possible, without carers.” OT

04

Tools and Equipment

The top three products that the Occupational Therapist recommends to amputees include a belly clamp, a spoked chopping board with a rim, and an electric tin opener. Technology is also a big advantage to amputees in the kitchen due to it’s simplicity. Making coffee only requires the push of a button on a coffee maker, compared to the boiling, pouring and stirring of making a coffee manually. Observational videos also revealed less known products such as pasta strainers (One handed cooking challenge, 2018). Looking into products for other activities such as the gym resulted in the 18

emergence of gloves that allow users to make a fist and grab items.

“We used a belly clamp with him, which I feel are invaluable…The three things I tend to show people are the belly clamp, the chopping board and the electric tin opener.” OT

05

Feedback and Reviews

Feedback to these products is “usually good”, however some patients refuse the products. This can be due to denial, anger, and pride. This also leads into how these products look.

People refused, because these products “look dreadful”. People do not want cold clinical products that make their homes look like a hospital, because this can imply that they are disabled and require extra help. People do not want others feeling sorry for them either. The response can be positive, because patients are shown and introduced to these products before they go home and before they need to use them. They allow for independence. A positive response would also appear once patients who refused the equipment realised they would be helpful.

“You just need something to hold the jar, so you can open it, something to butter bread to make a sandwich, something to stick cheese on or peel a potato” OT The products also need to be robust as they will be heavily used. They need to do what they say on the tin. It is important to note that there is no need for a product to do everything at once and be so multifunctional. It would be ideal to improve aesthetics by using “sustainable materials, or colours, or something to make it look a bit more funkier”.

“You don’t really want a massive piece of equipment that does 60 million jobs because you don’t need 60 million jobs in one go” OT

“Thats why some people refuse to have them because they look dreadful, sometimes you need to have a blunt conversation with people and say I know it doesn’t look the greatest, but if it means you can make yourself a sandwich that’s your choice, but it is there to help you. You can always put in a drawer at the end of the day and hide it away. People don’t want their house to look like a hospital. More choice would be great, but you’re limited to what is available on the NHS.” OT

06

What the Product Should Do

The main purpose of these products is to maintain a healthy and balanced diet. However, to do this, the products need to help accomplish tasks on a smaller scale for everyday cooking, such as holding and opening a jar, buttering bread, peeling vegetables and making a sandwich, in addition to reaching, grabbing and lifting items.

Figure 6: Section of Analysis completed on the interview

19

07

Tasks Found Most Difficult

When completing the simulated focus group, it was clear what tasks were the most difficult to complete. These involved cracking eggs, buttering bread, cutting bread, straining liquids, opening jars and grating cheese. Below the average difficulty rating of each activity is displayed out of ten (Figure 7). There are also pie charts indicating what specific tasks majority of the participants found the most difficult (Figure 8). (See appendix 2 for full results and ratings)

Figure 7: Average difficulty rating out of ten. Ten being the most difficult

Figure 8: Percentage of specific tasks people found the most difficult

08

Techniques Used and Why

A note was made of the techniques used to complete these tasks to better understand what the participants required and that they could not do with one hand. Below are the individual journey maps highlighting the different techniques used at each stage.

Figure 9: Techniques used by participants when cooking scrambled eggs

Cooking an egg was rated second highest in terms of difficulty (Figure 7). Cracking an egg with one hand is possible but is a skill that needs to be mastered. Participants would either create a small crack, and push their thumb into this to break the egg. It was common for this to be done over a bowl, so pieces of shell could be picked out before transferring it into the pan. One participant stabbed the egg with a fork to break the shell (Figure 9).

Figure 10: Techniques used by participants when preparing toast

Stability was required for many tasks such as buttering and cutting toast. When buttering the bread participants would simply place slices of butter they had cut on the toast, or even used their hands to have more control and power when spreading. One participant waited for the butter to melt to allow for easier spreading (Figure 10).

21

Figure 11: Techniques used by participants when cooking pasta

When opening jars, it was clear the participants required a better grip which was difficult with one hand. To compensate participants would place the jar between their legs, or in between their arm and hip. One participant even sat on the floor to hold the jar between their feet to allow them to unscrew the lid. Straining food proved difficult (removing pasta from water to add the sauce) due to the heavy weight of the pan, especially since participants were using their non-dominant hand and had less control. Participants would slowly pour the water out but found it hard to completely remove all the water. Two participants opted to use a colander and poured the pasta into this, before transferring it back into the pot to add the sauce. To compensate for the pot moving when stirring a few participants lifted the pot up and spun it to swirl the food and mix it (Figure 11).

Figure 12: Techniques used by participants when making a sandwich

Stability was also required for making a sandwich. Participants would push the bread up against a corner before cutting, so the bread would move around less. To stabilise the cheese grater participants would use their head to hold it steady or lay it horizontally and push it against their stomach, so it would not topple over or move (Figure 12).

22

09

Emotions and Feelings

Overall 77% of the emotions felt were negative and 23% were positive. 62% of these positive emotions were relief that the tasks were completed without anything going wrong, or the feeling of accomplishment when the task was completed successfully. Bellow all the emotions have been compiled into a word cloud (Figure 13). The larger the word, the higher its reoccurrence rate.

Negative words have been written in grey and positive ones in orange to clearly distinguish and see the ratio between them. (See appendix 2 for full list of emotions and during what specific tasks they were expressed).

Figure 13: A word map to dispaly the emotions expressed while carrying out the tasks

23

DISCUSSION There is a need for better developed kitchen aids for amputees or those with one functioning hand. This is due to the fact that many products are still being modified by users for function, as well as a common agreement on the undesired, clinical, and cold, aesthetics of these products. The purpose of carrying out the research was to discover how an amputee’s relationship has changed, what difficulties they face in the kitchen, as well as gaining a technical overview of rehabilitation and prosthetics. A clear understanding of the key difficulties in the kitchen have been identified, and decisions made on the use of prosthetics and rehabilitation methods in the product. The emotional impact amputation or having one functioning hand has on an individual’s independence and self-confidence needs to be addressed.

01

Amputee’s Relationship

One of the objectives was to investigate an amputee’s relationship with the kitchen and how it has changed (if it has) prior to the amputation. The loss of a limb has a negative impact on the mental wellbeing of a person, especially when it stops them from completing day to day tasks independently. This is because people feel reliant on others and a burden. They don’t want to be labelled as disabled or needing extra help when they did not require it before. During the focus group a common emotion expressed was incompetence and un-accomplishment when carrying out the tasks. “The only thing that Louise fears for the future is having to be overly reliant on others, and not being able to do things for herself that she has already re-learned how to do since her limb loss.” (Colquhoun, 2013) This relates directly to the therapist stating that “At the end of the day you just want people to be as independent as possible, without carers.” This proves that there is a need for assistive products in order to help amputees gain independence, allow them to participate in activities, and be able to look after themselves without the need of carers. The product/s should allow users to complete tasks without any assistance from anyone else. The product will also be aimed at those between the ages of 18-60, as this the most common age group of upper limb amputees (National Amputee Statistical Databse, 2003), and during these ages people have the ability to be independent.

Below are the emotions the participants felt when completing certain tasks (Figure 14, 15, 16, 17). Majority of these were negative which proves the experience in the kitchen needs to be improved.

Figure 14: Emotions expressed by participants when cooking scrambled eggs

24

Figure 15: Emotions expressed by participants when preparing toast

Figure 16: Emotions expressed by participants when cooking pasta

Figure 17: Emotions expressed by participants when making a sandwich

25

02

Prosthetics and Functionality

Prosthetics and rehabilitation methods were analysed by talking to Occupational Therapists for a professional opinion. It was discovered that many upper limb amputees opt not to wear their prosthetics because it is uncomfortable and inconvenient. The Occupational Therapist stated that “they’re very uncomfortable to wear, it’s almost like a gun holster. They found it was rubbing their armpit and uncomfortable, so they didn’t really bother with upper limb as much” This coincided with the information extracted from the literature reviews. That they “were a far cry from the dexterity of the hands people were born with” (Douglass, 2015) and Louise’s experience with her prosthetics: “I tried one but to be honest I didn’t really like it. I can manage just fine with just one hand, though some things have taken a bit of practice. I can do my hair, use my mobile and do my make up with one hand” (Colquhoun, 2013). This means that the product/s will be designed to be used without prosthetics. The user will interact with these products with their other hand. This also then does not exclude people who suffer from other medical conditions such as stroke or broken bones.

03

Rehabilitation Techniques

Occupational therapy has a form of rehabilitation exercises incorporated into it because of the practical activities the participants are carrying out. “This is the beauty of occupational therapy, we work very closely with Physiotherapists because we do the same sort of thing, they’re doing day to day exercises, and we’re doing meaningful exercises which incorporated lifting weights, you just don’t know you’re doing it with us because you’re doing some sort of practical activity whilst doing it” Jennifer had stated that in terms of rehabilitation cooking never came up until she brought it up (Griffin, 2012). This contrasts the findings when interviewing the Occupational Therapist where patients carry out activities in the hospital kitchen before going home. Jennifer could possibly be talking about her sessions with a Physiotherapist. Either way these products are to be used in the house after therapy as

opposed to being a therapeutic product.

Intentionally incorporating rehabilitation exercises into the product may make the product exclusive for amputees, and no longer cater for those who suffer from stroke, for example. By using these products, the user will unintentionally be exercising by carrying out practical activities like in Occupational Therapy.

The purpose of these products is not for rehabilitation but to allow tasks to be completed easier in the home.

04

Aesthetics and Ergonomics

Cheryl had stated that she still adds foam tubing or sticky first aid tape to allow her to have a better grip, and flat handles are better than cylindrical ones (Griffin, 2013). Even though Cheryl is a quadruple amputee who uses prosthetics, this factor of better grip and comfort can still be applied to products for one handed users. Another point of improvement would be the aesthetics as this can be a reason people are put of the products and refuse. “That whys some people refuse to have them because they look dreadful… People don’t want their house to look like a hospital.” The product/s will need to look aesthetically pleasing and not clinical as well as providing an ergonomical element for comfort and grip.

Figure 18: OXO Good Grips range

26

05

Tasks Found Most Difficult

Observing amputees cook allowed a better understanding of the key difficulties faced along with the emotions associated with completing these tasks. The tasks identified as being the most difficult to complete were: cracking eggs, buttering bread, cutting bread, straining liquids, opening jars and grating cheese. These were the activities that participants kept bringing up and were rated the highest in terms of difficulty. The tasks that were the most difficult in each of the activities carried out were compared to the tasks found difficult in the literature review. There were some reoccurring themes. These were cracking eggs, holding a knife to chop or spread and opening jars. Other tasks mentioned were stirring, peeling vegetables and opening air tight packaging. Refer to the Venn diagram below (Figure 19).

Figure 19: Venn diagram illustrating the common tasks found difficult from primary and secondary research

When completing the focus group stirring was not rated as one of the most difficult tasks and many participants did not have a problem with this. This may be due to the pot and hob used.

Understandably everyone has different kitchen worktops and appliances, and this may be the difference. When trying to stir stability and grip is required. In comparison when completing other tasks such as grating cheese, cutting bread, and buttering bread, it was clear that they were difficult because there was no stability. Participants resorted to pushing the bread in a corner to butter it and this is the same technique Jennifer used: she pushed her bowl in the corner and stirred to stop it moving around. (Griffin, 2012) This determines that the product/s to be designed must initially provide stability and grip (that an additional hand would provide). The tasks that these products could help with are cracking eggs, grating cheese, buttering bread and chopping/cutting items such as bread or vegetables.

27

06

Current Products

Current products were reviewed and scrutinised to see what was curently on the market and what issues they solve. Below is a Venn diagram illustrating the common products identified (Figure 20).

Figure 20: Venn diagram illustrating the common tools and equipment from primary and secondary research

The top three products the Occupational Therapist recommended was the belly clamp, a spoked chopping board, and an electric tin opener. These products provide stability and grip for the user, which allows the user to perform the task easier as mentioned before. Cheryl also mentioned the spoked chopping board and this is a popular and successful product (Griffin, 2015). Throughout the videos other versions of this chopping board were used along with other less known items such as strainers (One handed cooking challenge, 2018). Other products were also mentioned such as spring-loaded scissors, battery powered grinders, angled measuring cups, tweezers, and suction cup bases for items (Griffin, 2015). The gloves mentioned before will not be taken into consideration as they are to be used by the non-functioning hand. The products being designed will be used by the functioning hand therefore the gloves are not relevant.

07

Other Features

A successful product needs to be robust, since it will be used heavily, it needs to “do what it says on the tin” and be simple; “you don’t really want a massive piece of equipment that does 60 million jobs because you don’t need 60 million jobs in one go”. It would be ideal to use sustainable and hygienic materials.

28

08

Personas and Users

Based on the results and discussion, below are examples of the target market and some of the users of the product/s to be designed.

To summarise the product should be used without assistance & prosthetics. The product should be ergonomical, manufactured from hygienic materials & look aesthetically pleasing. The functions that these products should carry out could include cracking an egg, grating, chopping items & buttering bread.

LIMITATIONS Throughout this process it if fair to say that there have been limitations to some of the methods used for obtaining information.

01

Prosthetics Vs Ergonomics

02

Amputess Vs Simulation

During the literature review a book written by a Quadruple amputee was analysed to see what issues were faced in the kitchen. Since Cheryl was a quadruple amputee upper limb prosthetics were a necessity for her. Upon further research it was discovered that many single upper limb amputees chose not to wear a prosthetic. Therefore, the interaction with the products and completing tasks would be different for each of these individuals. Cheryl talks about how ergonomically designed products were of no use to her with her prosthetic hands, however this would not be the case for someone with only one hand. They would require ergonomical tools more so than a person with two functioning hands to compensate for their loss. The purpose of looking at Cheryl was that by designing for the most extreme scenario the product can cater for more people. So, by designing for use with one hand, the product should also theoretically cater for someone with one hand and a prosthetic.

However, it would be more relevant to look at people in the same situation as the ones being designed for.

To begin with, the focus group was simulated as no actual amputees or people with one functioning hand were used. Instead participants were asked to place their dominant hand behind their back and carry out activities. While this provided insights, using actual amputees would have provided more reliable and valid data. Since amputees would have been living with these conditions for longer, it is likely that they would have found different ways around the problems presented, and have set techniques in place, compared to people who have been simulated these conditions. It is also possible that amputees would carry out these

Figure 21: Top Chef Contestant

tasks more sensitively. The participants may not have put in their full effort as they were not required to eat the food afterward, there was no impact to them if the meal was not prepared properly, whereas for an amputee they would have no other choice. Using amputees or those with one functioning hand would have been ideal.

03

Tools and Equipment

04

Prosthetics and Physiotherapists

05

Existing Products

An Occupational Therapist was interviewed, and this provided information on tools and equipment recommended to amputees, and their experience with them. The Therapist was pleased with the products that were already on the market and said that there were tools to help complete tasks in the kitchen.

However interviewing amputees on this subject might have provided different results.

Amputees would be using these tools daily and on a long-term basis, this means that they would have more interaction with the product, which means problems could arise later on in use. They would have provided more long term first-hand experiences.

A Physiotherapist would have provided a more deeper understanding of prosthetics as opposed to an Occupational Therapist. An Occupational Therapist sees patients after they have been assigned prosthetics by the Physiotherapist.

Interviewing a Physiotherapist could identify different types of prosthetics, and how they work, to provide further information before deciding if the product/s will be used without prosthetics.

Finally, when analysing existing products this was done by watching videos of others reviewing and using the products. This was not a first-hand experience. If the products were used in tasks personally, a better understanding of their limitations and an empathetic view could have been brought up.

31

CONCLUSIONS The objectives outlined in the introduction have been met through the literature review and primary research carried out. The research carried out provided vital insight into the problem area both technical and empathetic, both which are important when designing a product, understanding the problem, and user needs. These insights help develop the design brief and elements of the design specification. The research validated or contradicted assumptions that were made at the start, which allowed the emergence of valid, real life information.

01

Key Findings

• 5% of the UK population has one • functioning hand and only 5% of amputees are upper limb amputees. It was expected that there would be more upper limb • amputees however majority of amputees are lower limb. This does not diminish the • problems faced by upper limb amputees, and others who have one functioning hand due to other medical conditions.

• Most upper limb amputees are aged • between 16-54. This result was expected, during these ages people are independent and able to work autonomously.

• 1 billion people require assistive products but only 1 in 10 have access to these. In a worldwide context this is understandable when considering third world countries. In the UK there are still people who do not have access to the products they need. This proves there is a need for the products to be created.

• Gaining independence is key for those with one functioning hand.

• Existing products are still being modified. It is understandable that not every product is going to solve all the problems because • different individuals will face different • situations based on their circumstances.

• Upper limb amputees tend not to wear • prosthetics unless necessary. This result was not expected as it was believed amputees would wear prosthetics to compensate for their loss. This is true for lower limb • amputees however upper limb amputees believe it is not necessary. There are such a variety of prosthetics and most people only have access to basic ones provided by the NHS. • Aesthetics of current products can be off•

• •

• • •

putting and need to be improved to help the products be accepted. Many products are clinical, and this was not a surprise. It is

function before form, however a product can be functional and aesthetically pleasing at the same time.

The tasks participants found the most difficult included cracking eggs, buttering bread, slicing bread, grating cheese, opening jars and straining liquids. This was validated in the literature review as well as the focus group.

The experience of cooking can be negative with one functioning hand, this was an obvious finding when taking into consideration the difficulties faced, relying on others and the emotions felt when things are more difficult.

02

What this Means for the Product

• The product should be able to be used • independently for those between the ages of 18-60.

• The product will be used without prosthetics.

• The product will have egronomical features.

• The product should be aesthetically pleasing.

• The products should tackle the following tasks: cracking eggs, grating cheese, cutting/ chopping food, buttering bread and opening jar.

• The product should be robust, hygienic and easy to use.

32

03

Future Research

04

Next Steps

• Obtain existing products and trial them for a better understanding of what is currently on the market and what they offer.

• Gather products with the same function (e.g. cracking eggs) and understand how they work. What techniques they use, and which are the most efficient? What are the areas of improvement?

• Interview people with one functioning hand to gain their opinion on the products they use in the long term and what problems they face.

• Identify out of the existing problem areas which ones the products will cater for.

• Create a design specification to completely understand what requirements the products need to meet to be successful.

• Begin looking in ergonomics and • anthropometrics of products and how • products interact with the user.

• Begin experimenting with concepts and • prototyping various designs, while gaining user feedback.

Summary It has been identified that there is a need for better kitchen aids for those with one functioning hand. The key findings dictated the design function of the products to be created. The purpose of these products is to help those with one functioning hand have a healthy and balanced diet. To do this the products need to help complete smaller everyday tasks in the kitchen. The products should also promote independence and be able to be used without prosthetics to be more inclusive. Further research has been identified which corresponds with the limitations mentioned above. The next steps help answer the gaps and questions raised from the research.

Figure 22: Stock photo of amputee chopping

33

DESIGN BRIEF

“

To create a range of products that tackle a few of the problems identified such as cracking eggs, grating cheese, cutting/chopping food, opening jars and buttering bread. It is to be used independently, without prosthetics by those with one functioning hand, aged between 18-60, and steer away from the cold clinical aesthetics of the products already on market

“

Figure 23: Compilation of data and research

REFERENCES BMI HEALTHCARE (2018) Dupuytren’s contracture: the facts and figures [Online] Available from: https://www.bmihealthcare.co.uk/health-matters/health-and-wellbeing/dupuytrens. [Accessed: 20th November 2018] CHO, E. (2018) ONE HANDED COOKING CHALLENGE - Adaptive KITCHEN GADGETS Test - Does it Work? [Online] United states: Youtube. Available from: https://www.youtube.com/ watch?v=nMGPCUYSMxY. [Accessed 27th November 2018] COLQUHOUN, I (2013) NINE LIVES: A Self-Help Book for Amputees. United states: lulu.com.

DESIGN KIT (2018) Expert Interview [Online} Available from: http://www.designkit.org/methods/43 [Accessed: 08th December 2018] DESIGN KIT (2018) Journey Maps [Online} Available from: http://www.designkit.org/methods/63 [Accessed: 08th December 2018] GREAT BRITAIN, DIABETES UK. (2014) Diabetes: facts and stats [Online] Version 3. United Kingdom: Diabetes UK. Available from: https://www.diabetes.org.uk/resources-s3/2017-11/diabetes-key-stats-guidelines-april2014.pdf. [Accessed: 25th November 2018] DOUGLASS, C (2015) The Bionic Chef: Cooking With or Without Hands [Online] United states: Cheryl Douglass. Available from: https//: www.kindle.com [Accessed: 12th October 2018] EVERGREEN OCCUPATIONAL THERAPY SERVICES (2013) Meet the team. [Online] Available from: http://www.evergreenot.co.uk/page13.html. [Accessed: 18th November 2018] FEINMANN, J. (2015) Why are so many broken bones being missed in A&E and thousands of patients being sent home in agony with just a paracetamol? The Daily Mail. [Online] 9th March.

Available from: https://www.dailymail.co.uk/health/article-2986953/Why-broken-bonesmissed-E.html. [Accessed: 23rd October 2018] GREAT BRITAIN. INFORMATION AND STATISTICS DIVISION. (2003) The amputee statstical database for the United Kingdom 2001/02. Edingbrugh: Information and statistics division. [Accessed 01st November 2018) NHS (2018) Dupuytren’s contracture [Online] Available from: https://www.nhs.uk/conditions/dupuytrens-contracture/. [Accessed: 20th November 2018] RHODES, J. (2012) Jennifer Griffin on Managing a kitchen as an amputee. Smithsonian. [Online] 18th July. Available from: https://www.smithsonianmag.com/arts-culture/jennifer-griffin-on-managing-a-kitchen-as-an-amputee-3340800/. [Accessed: 1st October 2018] GREAT BRITAIN. STROKE ASSOCCIATION. (2018) State of the nation: Stroke statistics. [Online] United Kingdom: Stroke association. Available from: https://www.stroke.org.uk/system/files/ sotn_2018.pdf (Accessed: 20th October 2018) GREAT BRITAIN, STROKE ASSOCCIATION. (2013) Stroke Statistics. [Online] United Kingdom: stroke association. Available from: http://www.thepossibilities.co.uk/assets/downloads/ stroke-statistics.pdf (Accessed: 20th October 2018) 36

VIRTUAL MEDICAL CARE (2004) Diabetic Cheiroarthropathy [0nline] Available from: https:// www.myvmc.com/diseases/diabetic-cheiroarthropathy/. [Accessed: 20th November 2018] WEBMD (2018) Amputation Overview [Online] Available from: https://www.webmd.com/a-to-zguides/definition-amputation. [Accessed: 17th October 2018] GENEVA, WORLD HEALTH UK. (2016) Priority Assistive Products List [Online] France: World Health Organisation. Available from: http://apps.who.int/iris/bitstream/handle/10665/207694/ WHO_EMP_PHI_2016.01_eng.pdf?sequence=1. [Accessed: 27th September 2018]

IMAGE REFERENCES Figure 1: https://studentfilmreviews.org/?p=37639 Figure 2: http://unapix.com/biographies/jennifer-griffin-biography.html Figure 3: https://www.gettyimages.com.au/photos/cheryl-douglass?sort=mostpopular&mediatype=photography&phrase=cheryl%20douglass Figure 18 and Cover: https://www.amazon.com/OXO-Grips-18-Piece-Everyday-Kitchen/dp/ B07DXBLN2D Figure 21: https://www.tapatalk.com/groups/survivorsucks/what-is-the-proper-etiquette-forgreeting-an-amput-t67872-s60.html Figure 22:https://www.alamy.com/young-woman-with-amputee-arm-cutting-vegetables-in-kitchen-image277673978.html

37

APPENDICES Appendix 1: User Journey maps used in the focus group by the participants

38

Baguette

Baguette Baguette

39

Appendix 2: Collation of raw data collected from focus group. Techniques at top and emotions below

40

41

Appendix 3: Interview questions and transcription from Occuptional Therapist Interview From your experience, what advice do you give amputees about only having one fully functioning hand (whether it be due to stroke, amputation or rheumatological)?

My best example was, because I used to work in a unit for sarcomas, sarcomas are one of the rarest types of bone cancers or soft tissue cancers, so we had a gentleman that came in and he had a lump on his arm, on his dominant side, his right hand side, near the top by his shoulder. When we examined it we did a biopsy. We found it was a sarcoma and the best treatment was to amputate the whole of the arm up to the shoulder socket.

Because it was quite a quick turnaround from his appointment to him coming into hospital. The day we got him in, the day before, I actually went down the OT department with him and we put his hand behind his back, and we had a practice, just to sort of give us an idea of what he was going to have to do with his left hand. So that was one good start. Being an OT we have the facilities in the hospital to be able to do that, so we took him down the OT kitchen. We literally went through making himself a cup of tea, moving items around with his left hand. I got him to butter a scone with his left hand. We had a practise run to give him an idea of what it was going to be like, which proved to me what he needed post-surgery and gave him a bit of indication.

After surgery we did the same procedure. We did another kitchen assessment with him. We used a belly clamp with him, which I feel are invaluable for people with one limb, because they use the force of their stomach against the clamp to push items and hold them in place while they can unscrew jars, undo tins, things like that. Daily things with their non-dominant hands. You can also buy these chopping boards which have a rim on the edge of them, so he can practice spreading butter on the bread up against the rim, you need something to obviously push the bread up against. He also did cheese and biscuits, so he got a biscuit and we were chopping cheese. The other part of the board you can buy has spikes on it: Quite lethal spikes. Need to be careful who you give those to. So, he put the block of cheese on the spike and he was able to slice the cheese. They’re the two main ones but I also like the electric tin opener which you can get. Again, they’re brilliant. The three things I tend to show people are the belly clamp, the chopping board and the electric tin opener.

Things like that and bottle openers.

Some people looked at me agape, but I though you know, it’s going to happen, it’s happening in a few days’ time, we’re saving his life by removing his arm, he needs to see how and what it’s going to be like and I needed to see what I needed to purchase for him, it was a win-win situation but I’m quite pragmatic like that, I’m a bit black and white. It’s going to happen, and he needed to come to terms with it quite quickly. We did lots of amputations and they were quite rapid decisions made in the clinic and then you were back in with us a few days later, so it was quite a fast turnaround for the patients we saw with the conditions they got.

If we had the opportunity to do kitchen assessments, it sounds terribly sexist now but particularly with the ladies, who want to resume their role within the home and do the meals, things like that.

It was quite important for them to feel that if they lost a leg, it wasn’t going to lose them their role within the home, because again we have quite a few young patients, with young families and they wanted to maintain being the mum in the kitchen, so we worked a lot with those people.

Lower limb gentlemen tended to be of the older generation, whose wives had looked after them and it all seemed to happen at once with these patients. They’d lost their wives, they lost their limbs, so again, it sounds a bit sexist to be afraid, but we tended to look at those people to be able to make themselves a drink. However bizarrely they did it. One gentleman used to put the teabag in the kettle, you kind of went along with it. I tended to look for meals on wheels for them. I should’ve had shares in Wiltshire Farm Foods, I’d have been a very rich person. You tend to gage at the initial interview how much they want to be in the kitchen. There’s no point making a MasterChef out of 42

someone if they’ve never really done it before. You’re just trying to make sure they maintain a healthy balanced diet and can get themselves around the kitchen if they needed to for small items, like if they needed to get themselves a drink, things like that.

The beauty of nowadays is you’ve got these coffee machine now as well. No need to worry about kettle tippers and all those sorts of things. You just have to push a button with your dominant arm, or your non-dominant arm and your coffee is there for you. Technology in the kitchen anyways is getting a lot easier and better for people, than the stuff we used to recommend in the old days.

What issues do people with one functioning hand face in the kitchen and how do you recommend overcoming them?

You need to find out to what extent they were the dominant person in the kitchen or if they were not.

How much they want to, post injury, post-surgery want to continue in the kitchen, a lot of people just think I used to do it, I’ll sit back a bit and find out what could be available (like your Whiltshire farm foods and carers). When you lose a limb and if you’re on your own, you’d be looking at checking things like self-care and self-hygiene. You tend to find if they’re struggling to do that; you’ve got a carer coming in. You will then be asking the carer to be assisting with breakfast, you may get the carer back for lunch or dinner. So you assess their abilities with other aspects of daily living as well as the kitchen, so you’re not just looking at the kitchen. It kind of involves everything else throughout the day. You got to look beyond the kitchen I know that you have experience in house design and adaption. I was wondering what current adaptions do you make or recommend for people’s kitchens?

So again, you need to look at if it’s their dominant hand or their non-dominant hand. If it’s their non-dominant hand you don’t actually need to adapt things like their worktops and that too much.

You do an assessment, you find out what they’re struggling with. The main thing is, when you go to lift a pile of plates, let’s say, me and you would just lift them, without thinking about it, but obviously if you’ve got one limb, especially your non-dominant hand, it would be a lot heavier, you have to move things one at a time. You wouldn’t expect to pick up four dinner plates in one hand. So you’d be looking at positioning items you use on a daily basis to a more waist height. I’ve even said if you’re really struggling, why bother putting things away. If they’re clean, leave them on the worktop.

Otherwise if someone’s had a stroke you’re looking at the same thing, lifting, reaching, grabbing things. There’s some amazing things you can get for kitchen adaptions. You’ve got your high/low kitchen worktops. Electric operated that will move up and down if you needed them. You’ve got sinks that are accessible underneath if you’re in a wheelchair. They have a shallow bowl, so you can get your knees under the worktop. The great thing you can get nowadays are the pull-down baskets, as long as you can reach the cupboards, the actual cupboards can have the rack to pull down.

Howdens the kitchen joinery have a lot of great stuff for adaptations. I particularly like them. A lot of companies are now cracking onto adaptive kitchens. Along with NEFF slide and hide oven doors. It gets the oven door out your way. Usually it comes down and if you’re in a wheelchair you can’t get to the oven. If you have a limb amputation you really could do with getting closer access.

I know that you’ve mentioned products in the kitchen that aid cooking, I just wanted to know what was the user feedback you received from these?

Well, very positive because it was showing people, because you can take them in the kitchen while in hospital and practice and show them, people have got quite a good idea before they go home.

It’s not such a anxious feeling. They realise there are things out there to allow them to keep being 43

independent. At the end of the day you just want people to be as independent as possible, without carers. It can be obtrusive having a stranger come into your house on a daily basis. Generally, the feedback is usually good. You always get a new patient that understandably refuses to have equipment and you just have to work your way around it, if they point blank refuse to have anything, you obviously still got to provide some sort of care. You can’t send somebody home with nothing, who can’t feed themselves or eat. So, you have to find a different way or get them to say they will have some sort of help, maybe not the equipment.

Why do you think patients would refuse these adaptive products?

Pride and anger. Anger that they got the sarcoma, like you know, why me sort of thing and just denial. Denial that we had to amputate their limb. Anger that we done it and they didn’t want to feel like they were now disabled. They didn’t want to look disabled or have people coming around feeling sorry for them. The emotional impact generally with the people who refuse is quite understandable. It was cruel to send them home with nothing, but I’d always ring them up afterwards, after they had a few days to come to terms and realise they really couldn’t manage. Generally, they have a more positive response after realisation has sunk in and why trying to get them to do it before hand gives them an indication. On the other hand, it can also scare a few people. It is very much a rollercoaster and an emotional time for them.

Moving on, some products will obviously be more effective than others. What would you say makes these products effective? What are you looking for in a product for it to be effective?

Well, that it does what it says on the tin and that it can perform. That doesn’t fall apart because it’s going to be quite heavily used. Generally, that they’re robust because that’s how their designed. As an independent OT we can order products online and the patients pays for them now. That opens up the door to a lot more opportunities for people as opposed to being limited to what the council will pay for. Generally, they’re built to do what they say they’re going to do and in all fairness they are robust.

I assume some of these products can look quite clinical and cold. Is that something we want to pull away from and improve the aesthetics? Let’s say its functions well but improving the way it looks in a person’s home?

That would be ideal, and I think the amount of gadgets people have in their kitchens nowadays, I think the aesthetic side of things is improving from what it used to be like. The material used, it used to be wood, especially the chopping boards, and people even way back, we used to make these things in our OT department. Materials used are a lot better and more hygienic. The aesthetic aspect of it, yeah, they’re not great but you have to weigh up the practicality side of it opposed to the aesthetic side. That’s why some people refuse to have them because they look dreadful. Sometimes you need to have a blunt conversation with people and say I know it doesn’t look the greatest, but if it means you can make yourself a sandwich that’s your choice, but it is there to help you. You can always put in a drawer at the end of the day and hide it away. People don’t want their house to look like a hospital. More choice would be great, but you’re limited to what is available on the NHS. When you’re independent you can look online for the best because money isn’t an issue.

44

In an ideal world, where technology is at its best, what would you say is the ideal solution for aiding an amputee in the kitchen? If you could create anything, what would it be?

Gosh, I don’t know actually because I’m a huge fan of the market. I’d probably just look at how that works and making that aesthetically pleasing. You know what, I don’t know, I’m a big advocate for the stuff that they’ve already got out there. You don’t really want a massive piece of equipment that does 60 million jobs because you don’t need 60 million jobs in one go. You just need something to hold the jar so you can open it, something to butter bread to make a sandwich, something to stick cheese on or peel a potato. I don’t know really, I’m quite chuffed with what’s already out there. You could just do with looking at how it’s made, if it can be made with more sustainable materials, or colours or something to make it look a bit more funkier I suppose. The stuff that is used is pretty good at the minute.

I assume that a lot of people get prosthetics with upper limb amputations. I wanted to know what the common types of prosthetics you come across are. I know you get ones that are purely aesthetic and some that are functional and move and grip.

We were at the beginning of the process, so we would follow somebody up every 6 months or yearly. We really didn’t have anything to do with the prosthetic side of things. We just saw them when they came back from their clinic appointments. I remember some of the prosthesis that came through were just like a mannequin, like they’d just gone to a shop. This one lady tried to paint her toe nails on one of her prosthetic legs to match her other leg. Oh God, they were awful. They didn’t have the right skin colour. Our limb prosthetic place in Wales didn’t have the best reputation for coming up with the best things unfortunately. You had the extremes, you had a lady with the most God awful leg that rubbed her so she found that she wore it less than actually had chance. She got blisters, she was in her wheelchair more than actually being able to get up on her leg. It just looked so archaic. That’s where I’d spend the money. Then you had people who had got children, looking at long term things who had funded themselves or got funding with absolutely supersonic, dynamic lower limb prosthesis. The real blade, that sort of thing. They were phenomenal you just wish everybody could have a limb like that. You pay for what you get basically. So, if you’ve got the awful NHS leg, it looks awful. With the upper limb, you know what, a lot of the upper generation just didn’t bother. Thought it was more hassle than it was worth, we’re talking 70, they just tied their shirt, or jumper with a pin, folded it in half or just put their coat on. And they actually said a lot of people didn’t notice at first that they didn’t even have a limb. They’re very uncomfortable to wear, it’s almost like a gun holster. They just found it was rubbing their armpit and uncomfortable, so they didn’t really bother with upper limb as much. We didn’t have a lot of young people with upper limb prosthesis either if I can remember, so you pay for what you get at the end of the day.

I know we mentioned careers. I’m assuming a career is not necessary for every type of upper limb amputation.

If it was a non-dominant hand it was harder to do things, you’re talking elderly population that it happens to, so if they spent their whole life using their right hand say, to start to do buttons and shoes, to move items with your non dominant hand, you really need to retrain yourself and you also don’t have the same muscle bulk on that side. You go back and do an assessment in those cases and see if they require it or not. Some people are more determined, and some are more than happy to have someone to help them.

45

Am I right to assume that if you were amputated at the wrist, or if you were amputated at the shoulder, you would require a carer more so if you were at the shoulder than you were at the wrist.

Not necessarily, it sounds a bit blunt but if you’ve been amputated at the shoulder you haven’t got to worry about getting that limb into a blouse or cardigan. If you try yourself to get into some item of clothing, if you put you’re one remaining arm in and get it over your head, it just falls.

Whereas if you have the rest of your limb you’ve still got to get that limb into everything. It’s how much movement the person has got. It down to the individual rather than the extent of the amputation.

Moving on, how do you encourage participation and independence in a kitchen environment, to get them to cook for themselves?

Well, you have to establish a rapport and talk to them first of all to establish what their participation was previously. Like I say, there no point making a MasterChef out of someone who didn’t do it before anyways. That’s down to when we do our initial interviews, we go into detail about their home circumstances and their level of compliance while in the hospital. Some people are determined to go back to doing what they do, and some people have a complete turn around and just can’t cope and refuse to do it so we need to look at what adaptations they need.

Are you aware of any rehabilitation methods or exercises for amputees?

We tend to leave the exercises to the actual physiotherapists, but you’ve got indirect exercises we do with people because you’re still lifting heavy items, moving things, reaching for things and so on. This is the beauty of occupational therapy, we work very closely with physiotherapists because we do the same sort of thing, they’re doing day to day exercises and we’re doing meaningful exercises which incorporated lifting weight, you just don’t know you’re doing it with us because you’re doing some sort of practical activity whilst you’re doing it.

46

AMAANI AMBER AHMED Aston University Student ID: 159142954 Module: PD32PRO Supervisor: Dr. Timothy Whitehead 16/01/19