Phase Three: Modelling and analysing Resilience The focus group stage of the research was developed in order to model and analyse resilience. We wanted to explore our findings from the life story phase of the research with groups of disabled people. We identified three focus groups from among Scope service users: a group of six adults; a group of eleven parents of disabled children and a group of two disabled young people (one of whom used AAC). Each focus group met once to explore and make sense of the life story phase. Anonymised vignettes from Stage 2 of the research were used to stimulate discussion (see stimulus materials for the focus groups in appendicesx 1, 2 & 3).The focus group is a collective, rather than an individual, research method and as such it allows for a range of participants’ attitudes, beliefs and experiences to be shared in the research processi. Interaction between participants creates opportunities for participants to discuss ideas between them and to generate rich dataii. Whereas some research methods focus on collecting experiences, focus groups enhance the research encounter by inviting members to share and debate perspectives on a particular issue. Our focus groups invited members to critique some of the ways in which we, as a research team, were becoming to understand the concept of resilience. Furthermore, members offered their own analyses of this concept. One might argue then that focus groups have the potential for a participatory mode of production: inviting participants in as active researchers of a given phenomenon.

EthicsNo real names were used in transcription material (only focus group numbers and participant numbers eg: F1, P1 = focus group 1,

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participant 1) and any data that had the potential to identify people was changed or removed on a case-by-case basis. At no point in any of the data analysis did the research team identify individual participants or third parties not actively involved in data production. 

AnalysisWith the data from focus groups we drew on a thematic network analysis approachiii. This approach to analysis allowed us to develop themes and sub-themes to facilitate data analysis. This analysis was also guided by the project boards at Scope and MMU and the project reference group at Scope. During the analysis the following themes emerged: community; risk; social care and work.Community

Community participation and community cohesion were key resources identified in the previous phases of the research. Barriers to participation identified in the focus group supported the data in the life story phase of the research. These included attitudinal barriers where the attitudes of others exclude disabled people:

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Some places are quite cliquey and you’re scared to approach people (F 1 P1)

As well as outright discrimination:I went to [soft play centre] to organise a party for my daughter and they refused. They said there would be too many disabled children there and there would be health and safety issues – they just didn’t want them…F2 P9

Structural factors also led to exclusion from communities. This was particularly the case for fathers who were excluded from activities and services for disabled families because of the times they were held:

Most males work in our society … so you don’t get to access activities or services, so you become significantly isolated. The only reason that there are a few male befrienders [here] is because [facilitator] took the brave decision to run the course at the weekend…. Services for disabled children are set up by women for women (F2 P9)

Inaccessible environments were also identified as a concern in the life story phase. In the focus group phase, living in a rural community with poor transport links was highlighted as a key barrier to community participation:

I couldn’t get on a bus to go to [local town] because I could get there and not get back. They are either too lazy to put the ramp down or they say it’s not working.You know on the crossings, I go on the wheelchair and you’re only half way across and it stops … they don’t give you a chance to get across. I couldn’t get up to the shops because there were no drop kerbs … I still can’t go to my friend’s shop because there are not drop kerbs (F1 P1)

Supportive new communities, then, became of key importance for disabled people. Some participants in the focus group phase also spoke about the value of peer support, in particular:

I have only really accepted my condition after being at [parent support group] before this, I would never have accepted my condition, I just wanted it to go away, any operation to get rid of it but now I accept it. I was at the cinema once, it was a kids club, there were load of kids making a noise, more noise than me, and I must have coughed and sniffed and this man said ‘there is a film on could you please stop coughing and sniffing?” I said “I’ve put up with this for 36 years I’m sure you can put up with it for an hour and half”… he gathered his things together and went and sat somewhere else. (F2 P7)

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I don’t think I have any friends now that don’t have children with disabilities. (F2 P5)

There was a sense that support groups led by and for disabled people and their families were the best source of support:

parent led parent forums do best (F2 P5)However, they also highlighted the difficulties of building and sustaining peer support mechanisms:

what usually happens with parents of disabled children who run support groups, what happens when they crash? … there needs to be someone else there to keep it going while you rebuild (F2 P6)

Social care was identified as a key material resource in the life story phase of the research. Access and information was experienced as a barrier to receiving services and support. The system was described as complicated, confusing and difficult.

I can’t cope with it [filling in the benefit form] myself but my social worker came out and said ‘we don’t fill these in anymore in case we get sued’. I tried to phone the number on the form to say my form would be late in… they said I didn’t have the right number for my area. He offered to give me the number but I can’t write and hold the phone so I was stuck with that. When I got through to someone he was a total prat … I blew it with him! My language went totally Anglo-Saxon, which I don’t normally do!’ (F1 P2)

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You can call [social services] if you go into crisis but a lot of people are not aware of that… you are not told, there is a lack of information. There are so many departments, it is so confusing, knowing who to turn to next. (F2 P8)

Even with support, people struggled to fill in forms and were given misinformation. For example a parent of a disabled child was incorrectly told that she wouldn’t be entitled to Disability Living Allowance because ‘she was mobile’.Families struggled to access social care. As well as the lack of information and the complexity of the system, they felt this was due to a lack of resources:

there’s not enough social workers to go round basically so that’s why they tell you you don’t meet the criteria because they haven’t got the staff to do it. (F2 P3)

One father described how even when support was offered, it was not always available:

Social care is a crisis management tool… I had to threaten to leave home, my wife had to be near breakdown to get support. The first solution to that is direct payments, but that is not always the best solution, but at the moment that is the panacea… if you have a child with autism … it is key they build up that familiarity… if you have change of carers coming in that will have a significant impact on the family … it is finding the correct person … the first thing our social worker said ‘was have you got a family member who will do it?’… [direct payments] turns out to be something that’s offered that can’t be used. (F2 P9)

The current change in the benefits system means that disabled people and their allies (including families) are facing changes to their services and support. This leads to a good deal of uncertainty:

I’m on ESA but I don’t know for how much longer. I’ve just been for my medical. I had my assessment here about three weeks ago… It was the things I was asked to do, I don’t have any mobility issues, except I have ME so if I keep doing things I get tired. So I did the exercises [as part of the assessment] that you are asked to do and so obviously you worry then that it is going to go against you because I can do them. But obviously, you want to go in there and be honest so I’m waiting to hear… And it is frustrating because I want to get back to work. (F1 P3)

Change, in turn, can lead to high levels of anxiety:

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The doctor came to my house [for an assessment for DLA] and I was ill in bed. And he came in and said ‘oh your hair looks tidy’. I don’t even blow my hair, I just comb it and leave it. And I thought what has my hair got to do with it, why is he asking me these things? … when the report came back … I nearly had a nervous breakdown. They took everything off me, I had a mobility car, they came and took it away, I was left without a car. I was so stressed – this doctor had been given £250 for every person they knocked off [benefits]. Everybody who knew anything about me were absolutely livid… I had to wait with no money ten months for the appeal. When I went to the appeal I was very ill, there were doctors, a solicitor, someone from social services and they took one look at me and apologised. They’d looked at my reports … and it was all given back…. I saw the doctor recently, he said I need the higher rate care component for DLA, I said ‘I’m not going for that, I’m too scared.’ (F1 P1)

Parents/carers of disabled children, in particular, talked about the stigma involved in seeking help:

There is that resistance as well [to having a social worker] because you are not going to show that you are not coping… a social worker means that you are a dysfunctional family, you can’t cope. (F2 P6)

Work

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In the life story phase, work was identified as a key material resource for disabled people. Disabled people in the focus group phase highlighted the barriers to the work place. This included lack of appropriate support to find work:

People don’t help you as well …. You try to do voluntary work to try and get yourself better to try and help, but no one seems to want to give you a job. If they could help you with finding a job that you could cope with and you could manage and they had some understanding of your illness then it would be helpful but there is nothing like that. We will take your money off you and no one will help you. (F1 P 3)

Parents of disabled children reported the attitudinal barriers that prevent parents of young children from working:

I went for an interview a couple of weeks ago and the person interviewing me told me he wasn’t keen on taking on parents of young kids because they are a liability. (F2 P5)

However, as parents of disabled children, they felt the barriers were greater:

If you’ve got an employer who knows that [someone has] got a disabled child, how flexible are they going to be? They need to be quite flexible and some employers aren’t.

Caring responsibilities were also identified as barriers to work:Even I wouldn’t employ me, five doctors I see a month who is going to employ me? (F2 P6)

As we saw in the life story phase, work is about much more than bringing in money to the family home. As one parent said:

[without it] you lose your identity, work is more than just bringing money in. You just want a life like everybody else. (F2 P6)

As we saw in the literature review, only 16% of mothers of disabled children work, compared with 61% of mothers of non-disabled children. This has an impact on family life beyond income as fathers as sole earners are unable to support their partners:

I hated [my husband] for not being there that day [because he was working] I hated going to the see the paediatrician on my own. I felt so lonely, I needed his support then. (F2 P11)

The divide between men’s paid work and women’s caring roles also put pressures on families:

One of the reasons why there is such a high split rate between parents of disabled children is because of the divide.

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Particularly early doors, if you are a man in a room with any kind of care worker you are ignored. You are absolutely excluded from the process early on so when things get tough there is not a significant bonding there so it is easier for the man to leave, but equally on the flip side should there be something where the woman can’t continue, it makes it extremely difficult for the man to take over. (F2, P 9)

Work is clearly important in building relationships and in gaining resources to support resilience, however, the focus group participants reminded us that work should not be seen as the only answer to the problem of resilience. It is not desirable for all (disabled) people:

At the moment, I have to look after my wife a lot … I was working up in London but I went on sick for a year and they finished me off. (F1 P4)

As the participant above suggests, caring responsibilities and impairment effects mean that work is not possible or desirable for all disabled people.

Risk

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In the literature review of this study, risk was identified as a key factor in developing resilience. Participants in the focus groups recognised the benefits of risk taking, especially in relation to disabled children’s development:

You have to let them go for it (F2 P4)However, they found it difficult to assess the risks their disabled children might take:

there’s no one who can help you with [risk] when do you say I am going to step back? How do you step back when your child has no understanding of danger? (F2 P9)

Sometimes parents felt guilty that they hadn’t allowed their children to take risks:

I’ve wrapped up my son in cotton wool and now he’s 12 I feel really awful … now he hasn’t got [a] clue. I just wish I’d let him do things at a younger age because now he’s completely clueless. (F2, P11)

And others recognised the need to seek support in developing their children’s risk taking

if I were to take [son] to [activity centre] I’d be worried and fussing round him but because it was with school he had a much better time. (F2 P9)

Social Justice

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As we saw in the life story phase of research, disabled people were engaged in issues of social justice throughout the life course. This experience was also evident in the lives of the focus group participants.Sadly, the focus groups participants confirmed that injustice often felt like part of everyday life:

I go shopping and I go to look for the disabled changing room and they say ‘oh, I’m awful sorry, we’ve got stock in it’. And I say ‘excuse me, that’s against the law.’ They say ‘oh we’ll take it out for you’. And I say ‘don’t matter’ and I put the things back but I say ‘if I see it again I will report you’. (F1 P1)

While the first two stories demonstrate that sometimes fighting for justice can build resilience, the last story reveals that fighting can also have the opposite and drain resilience so that someone becomes ‘too scared’ to stand up for themselves or to ask others to do so on their behalf.One participant explained how over time, his attitude to fighting for his rights had changed:

I’m sixty. When I was in my fifties I used to relish it [fighting for my rights] bring it on, let’s have it, but now I am starting to shy

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away from it. And it is only going to get worse for me in that respect. (F 1 P2)

Communication

Power, control and communication emerged as a key resource throughout the life story phase of the research. The focus group participants, particularly the young people, also reminded us of the importance of effective communication in their lives. The young people told us that to communicate effectively people need information about communication styles and requirements as well as time and sometimes access to technology as a participant below tells us:

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(F3, P1)

ConclusionIn short, the focus group phase of the research overlapped with many of the findings of the life story phase. This included: the value of peer support; the complex place of access to paid work in building resilience; the effect of lack of resources such as social care; the ambiguous role of conflict in disabled people’s lives in both building and draining resilience; and structural and environmental barriers. However, in addition, the focus group phase revealed the impact of rurality on community cohesion and participation in ways which did not emerge in the life story phase. The importance of accessible and accurate information was also a key message from the focus groups. The focus group participants reminded us of the complicated role that risk plays in developing resilience, particularly in the lives of disabled children. Finally, the importance of communication in disabled people’s lives was made clear.

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Appendix 1: Focus group 1 stimulus material

Resilience research focus group topic guide1. ResilienceCharacter traits and/or support networks

I suppose for me some of my personality is that I am a very stubborn person and I don’t like being told I can’t do things so often just by the nature of something being phrased to me as ‘this is difficult or you might find this tricky’ is a good tactic for actually me digging in my heals and saying “I am damn well going to show that even though I have a disability I can do this just as well as anybody else”. Matilda (disabled person)Don’t let the bastards get you down!Abbey (disabled person)

Networks of resilience

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There is no way I could have done anything without my I have a huge network system of support - just huge. (Beatrice, disabled person)

2. Work & ResilienceWork building resilience

I think for me as well one of the things that is important to me is to be needed and at work. Those times when I feel like my work is making a difference; it’s almost as if I viewed resilience like a fuel that you put in your body; and it helps keep you

going when times aren’t so great. I can think back and say “I might be having a rubbish day at work today, but remember how you felt when someone told you Matilda this is really helpful its really helped me with my work today and that.” Those kind of memories and thinking hard about that when things are

rough those kind of things are really important I think (Matilda, disabled person)

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Threats to resilience at workI know I’ve been ill in the past, so I’ve got to have that contingency [savings] there. We are moving into a new building shortly and I’ve got real worries about access issues. Technically because of my spina bifida, I’m doubly incontinent but I manage it to the point where I rarely have accidents but I need to be able to get to the toilet very quickly. Fortunately both my managers are female so I’ve been able to be quite open about it. I’ve been in this job eight years and they’ve been aware of this. But now I face being in an office where I have to get through about five heavy fire doors and travel about thirty metres to the nearest toilet, which is going to be outside the door to a lecture theatre that holds about two hundred and fifty students, and it’s the only toilet accessible from our office. The writing’s on the wall. I know that that toilet is going to be abused, I know that that toilet is going to be full when I need to use it. Abbey (disabled person)

3. Social Care, Support & ResilienceAfter leaving work I went on job seekers allowance and the DLA [Disability Living Allowance} basically told me I should go onto what used to be incapacity benefit and I’ve applied for that, sent off the form, and I haven’t

heard back yet. I have to go through ATOS [work capability assessment] testing for my ESA {Employment Support Allowance], the disability employment adviser is convinced I can get that but she is leaving her job and I don’t know what’s going to happen. She says that I’m a straightforward case, whether they’ll actually pay it or not remains to be seen, I’ll have to see what happens in terms of the allowance, my chances of a job are pretty slim at the moment. (Jim, disabled person)I have PAs who support me in the home. I actually have seven people, I used to have just two but they went on holiday and I was left PA-less, but it is very difficult to open up your life to seven people, seven strangers. (Afia, disabled person)I pay for my social care with direct payments. I love being in control but it is quite daunting. I’ve been employing PAs for three years now. It is quite difficult when you are managing a disciplinary procedure for someone who wipes your bum and does intimate care for you. It is very odd when your employee knows so much about you. (Sarah, disabled person)

4. Peer support

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That’s why it is good to meet other parents of disabled children. I think that’s quite useful to feel like you not the only ones because speaking to other people, even if they are friends, they really don’t know what you’re going through or understand. (George, father of a disabled child)

When I first became ill with ME, people are really sympathetic at first but then they don’t really want to talk about it, so one of the things I found was really helpful was to go online where I found people who had similar experiences. You didn’t have to say anything, you didn’t have to explain. (Flora, disabled person)

Very luckily, I found this place in a local town that knew all about neuromuscular conditions and I started going there for physiotherapy. It was there that I learned about Disability Living Allowance, I’d never heard of that one before. At the neuro muscular centre, they give you physiotherapy but not just physiotherapy, you get a lot of help and guidance because a lot of people like me have to come to terms with this condition and there is such a lot of useful information there. (Simon, older person)

Appendix 2: Focus group 2 stimulus material

Resilience research focus group topic guide1. ResilienceCharacter traits and/or support networks

I suppose for me some of my personality is that I am a very stubborn person and I don’t like being told I can’t do things so often just by the nature of something being phrased to me as ‘this is difficult or you might find this tricky’ is a good tactic for

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actually me digging in my heals and saying “I am damn well going to show that even though I have a disability I can do this just as well as anybody else”. Matilda (disabled person)Don’t let them get you down!Abbey (disabled person)

Networks of resilience

There is no way I could have done anything without my I have a huge network system of support - just huge. (Beatrice, disabled person)

2. Social CareWhen we had the social work assessment, a friend had warned me that the only way you are going to get a short break is to say that you are having a breakdown. I didn’t believe that could be right – it is ridiculous. But the social worker sat there and said: “I need to ask you one final thing, are you on the verge of a breakdown or is your relationship?” I could not believe that this was part and parcel of the assessment, because I could lie to her, and then presumably she’d tick the box and I’d get the hours, or I could sit there and I could say to her “no” and then she could go away and deny us the hours. This is like a ridiculous trap almost for parents to fall into. So I said to her: “well, if you’re asking me, are you or is your relationship going to have a break down if you never give us any support then the answer is yes. If you’re asking me am I on the verge of a breakdown right now

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at this very point in time the answer is no, but given that if you don’t give us any support then the answer would be yes, then if you go away from here today and don’t give us any support then I will be on the way to that, yes, and that’s is as honest as I can be with you. She looked a bit flummoxed and she said: “well right ok”. And I thought I’m not sure how she’s going to interpret that but I can’t lie (Cate, mother of five year old summer). I employed three new girls last Christmas through an agency and paid for them out of the direct payment account. One of them ended up being somebody that was on Facebook all the time and it didn’t work, so she went. The other girl’s boyfriend smashed her car up so she couldn’t come to work and then the other girl got a full-time job in a school but still wanted to come and didn’t want to leave us. So consequently, I have got nobody that could help me to actually hold my job down. So now in my responsible job, [as a nurse] I was letting the ward down so I went to my manager told her “I can’t do this I don’t know what I am going to do but it’s going to make me very sad to give up”. She gave me time to try and sort it out so I had a month off to try and find some new people which I employed via another agency and that is just starting now. And that’s exhausting in itself because you have now got to teach them everything that you do and it’s in your home. They’ve transferred me from staff nurse to bank staff now and I’ve been off work, so I’m back on Carer’s Allowance, so there is a financial strain on the family now. (Molly, parent mother of fourteen year old Annie)

3. Community participationI just don’t go to the supermarket any more, I just get deliveries. It’s just so difficult Billy would either be ADHD Billy who would just be whizzing round the aisle madly and people would stare. Or he would be the autistic Billy where it would take me half an hour to get down the tin aisle because he would be putting everything in order and people would just look!

A few months ago we went into the supermarket and there was a basket with sugar in it and obviously, people had taken a few and left it a mess, and Billy was just looking at this basket. And I thought, I am going to pretend I haven’t seen him but I thought he was going to explode and so I said quietly “do it!” People were just staring at him but maybe he could get a job shelf stacking! But God help anyone who took anything though

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– he would say ‘don’t touch!” (Helen, mother of nine year old Billy)

4. Peer supportThat’s why it is good to meet other parents of disabled children. I think that’s quite useful to feel like you not the only ones because speaking to other people, even if they are friends, they really don’t know what you’re going through or understand. (George, father of a disabled child)

When I first became ill with ME, people are really sympathetic at first but then they don’t really want to talk about it, so one of the things I found was really helpful was to go online where I found people who had similar experiences. You didn’t have to say anything, you didn’t have to explain. (Flora, disabled person)

Very luckily, I found this place in a local town that knew all about neuromuscular conditions and I started going there for physiotherapy. It was there that I learned about Disability Living Allowance, I’d never heard of that one before. At the neuro muscular centre, they give you physiotherapy but not just physiotherapy, you get a lot of help and guidance because a lot of people like me have to come to terms with this condition and there is such a lot of useful information there. (Simon, older person)

5. RiskOne of the things for Peppa that we feel is important is emotional resilience; it strikes me as something that’s perhaps even more important than speech and movement. It’s something that my husband and I thought about a lot with the older two children as well … I think the only way that you can build resilience in a little tiny one like Peppa, is to let them know that they can come to you, so that they can still be brave, but if it’s still too much then they can come to you and you’re the one that has to be brave. But also, this might have been a different answer before last week, but my feeling has always been that she’s got to try things. She’s got to be allowed to play and she will fall over and she will hit her head, and she’ll do that in the garden and she’ll do that in the house and she’s got to be allowed to do it because it just that if she was younger and learning to walk I would probably let her do it but she might always be like that. (Janice, parent)

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Appendix 3: Focus group 3 stimulus material

Some young people told us about their lives. What do you think?

What you need to know about me…

You need to learn all about me. There is an information pack in my home which you need to read carefully and slowly, take your time, and ask my mum, my dad, my sister or my brother if you are unsure. To keep me safe, read all the information about me. I need resources – like a hoist and a special bath. (Annie)

My perfect day

My name is Annie, I am fourteen years old and I go to

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a special school. I live with my mum, dad and my brother who is eleven. My big sister, who is 23, lives nearby with her family. I love my mum and my dad and my sister and my brother very much. They say that I am happy go lucky, I smile a lot and that I teach them what the important things in life are. I like music – especially the Backstreet Boys and S Club 7 and Kylie Minogue to calm me down or the Eagles at night time. I like to try and take wet wipes out of their packet. I like throwing them behind me. (Annie)

A bad day for me

A bad day for me: I would have to get up early and eat all my breakfast. I would have to get dressed and have my nappy changed and wear my splints. I wouldn’t be able to wash my hands or get muddy and I would have to go to a crowded place where people flushed toilets and used the hand driers. And then I would go to a party where a balloon would pop and I would go out for tea somewhere I didn’t know (Summer, disabled child).

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Going places

I have used the buses and things but not recently, I tend to use taxis because that’s easier. I do use the train, I like the train but I used the train last week, to go to [city] for the day and I was told by the man at the ticket office thing “oh well you need to book disabled assistance twenty four hours ago” and I said “well sometimes you might want to be spontaneous!”. I was told by one man: “oh, you’re holding the train up, because we have to come and get the ramps down”. I said: “you know, that’s the wrong attitude to have. You can’t say that I’m holding the train up when you were supposed to come and get the ramps down”. (David, young person)

Additional questions

Who is important to you?

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What do you like?

What don’t you like?

At home?

At school?

Is there anything else you would like to tell us

about?

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i Madriz, E. (2000) Focus Groups in Feminist Research in Norman, K. and Denzin, L. (Eds) (2000) Handbook of Qualitative Research, 2nd Edition, London: Sage Publicationsii Madriz, E. (2000) Focus Groups in Feminist Research in Norman, K. and Denzin, L. (Eds) (2000) Handbook of Qualitative Research, 2nd Edition, London: Sage Publicationsiii