Introduction

This chapter presents the aims and methods of the qualitative study, which explores the meaning of confidence after stroke, as described by the intervention participants. The principles of interpretive phenomenology analysis (IPA) were applied in both the collection and analysis phases of the study, resulting in broadening our understanding of the meaning of ‘confidence’ after having a stroke.

Aims

The aims of the qualitative study were to answer the following questions:

1. How does having a stroke affect self-confidence?
2. How do stroke survivors describe their experiences of regaining confidence after stroke?
3. What do stroke survivors identify as barriers to regaining confidence?

Sampling strategy and recruitment

All participants were selected from the ‘getting out of the house’ trial as IPA recommends that participants should be experts in the phenomenon being studied. ‘Lack of confidence’ was cited in the single centre²⁴ as a reason for not getting out of the house, so it was felt that participants in the multicentre study were likely to have a perspective of individual confidence. To achieve maximum diversity a purposefully selected sample, ranging from no symptoms at all after stroke to severe disability, were recruited. The Modified Rankin Scale^{63 , 64} was used to identify this range, which was considered reflective of the stroke population. Ten potential participants were contacted by the qualitative researcher and invited to consent. All 10 participants agreed to be interviewed and a willingness to tell their stroke story was observed.

Participant sample characteristics

The sample was drawn from two trial sites for geographical convenience. Five men and five women were included in the study. One presented with no symptoms after stroke, three with slight disability, four with moderate disability, and two with moderately severe disability. Five lived alone, three lived with their spouses, and the remaining two lived with their spouses and children. Nine participants were of white British origin and one was of black Caribbean origin.

Data collection: interviewing approach

Semistructured, in-depth interviews that sought the perceptions of stroke survivors were the favoured method of data collection. It is advocated that in-depth interviews are the best ways to attain rich, comprehensive, first-person experience.⁶⁵ Interviews were conducted in participants’ own homes, which aimed to provide a safe and familiar context. A reflective journal to capture feelings and thoughts throughout the interview process was maintained.

An interview guide was developed for two pilot interviews, and improved for next eight interviews. This proved a useful tool for steering the interview. However, the first interview question elicited the majority of the data. ‘Tell me about your stroke, what happened when you had your stroke?’ The natural responses and flow of the interview as a result of this question, enabled participants to articulate meanings around losing confidence and regaining confidence, through their experiences, in their own words. Ten completed interviews were transcribed verbatim, using digital dictation transcription software. Transcripts reflected words, laughter, significant pauses and silences.

Data analysis

The framework for the data analysis was selected on the basis of the methodology. A six-stage process following IPA principles was chosen in favour of using a computer software package, such as, NVivo. IPA is interested in understanding the content of the data, rather than measuring frequency of words, or imposing a more tapered approach to the data. Therefore, principles advocated by an IPA expert⁶⁵ were applied, and six-stage analysis process followed:

1. Reading and re-reading the data, making initial notes in margins.
2. Initial noting, taking one participant’s data at time, applying no rules and, therefore, making this stage as exploratory as possible.
3. Key data were then captured during the next analytical stage and the development of emergent themes progressed.
4. Stage four involved looking for patterns and connections across emergent themes and interpretation within these data was applied.
5. Stage five involved a repetition of stages 1–4 across all participants.
6. The final stage was a process that aimed to capture the essence of each individual story and also seek out differences and similarities within the data.

This process was audited by an experienced researcher in order to verify that all stages had been followed, adding to the trustworthiness of the data findings.

Presentation of the findings

The findings section follows with six key emergent themes that describe the phenomenon of confidence after a stroke. Although each participant provided a unique account, surprisingly, the emergent themes identified shared many concepts, despite difference in stroke impairments and personal context. The themes represent the essence of ‘confidence’ for the participants.

As there is an argument for the definition of confidence being different dependent upon who is asked,⁶⁶ embedded in the interview data were a direct question about what confidence meant to participants in this study, conducted on the basis of providing some introductory data. Box 1 illustrates these findings:

BOX 1

Examples of what confidence means Bob 12.16 ‘Going out and doing what you want to do’

To three of the participants, confidence is about doing, choice and engaging in everyday activity. Two participants struggled with its definition in this direct context; however, were able to define the impact of confidence elsewhere in the data. A further two immediately describe losing their confidence and to these participants, confidence has a negative connotation and relates to fear and safety. Further analysis and interpretation is embedded within the themes that follow.

‘Robbed of life’

The notion that having a stroke questions who you are was articulated by many of the participants. Skill loss, decreased competency and lack of engagement in activities were described as contributing to a general feeling of being a lesser person, and uncertainty as to how competent one feels after having a stroke.

June illustrates a perceived link between activity and identity, associating what she does, to who she is:

Can’t walk far, can’t play badminton. I’m just a totally different person.

June 11.9

The data indicated that the participants’ sense of competence after stroke was challenged. Not feeling able to engage in previous, often familiar, skills or roles, such as ‘washing the pots or walking the dog [laughter]’ (Ryan 9.17) contributed to loss of confidence. However, embedded in the data, successfully regaining skills contributed to increased competence and self-beliefs, resulting in a regaining of confidence in their abilities.

Fear of having another stroke

Some element of fear was identified by all participants; however, the impact of fear on losing confidence and also regaining confidence varied between participants. The first fear that participants described was the fear of having another stroke:

. . . Every time I had a headache, I feel lightheaded, my leg hurts, there is always that question, erm, maybe [laughs], just kinda maybe.

Mick 13.2

. . . you never know what is going to happen tomorrow.

June 17.6

. . . I am going to have another stroke? – So that was on my mind.

Ted 12.1

. . . alert to any changes in my body at all, you know? Anything, because I think now, perhaps this is going to be the big one, you know.

Barbara 19.4

Participants described living with this fear and how it prevented them from participating in everyday activities. Mick experienced a second stroke, and articulates this period, as:

cementing the fear in my brain

Mick 12.14.

This second event had a huge impact on his recovery and confidence to leave the house, and resulted in a period of avoiding going out. For Mick, confidence has been about gradually overcoming this fear to enable him to regain confidence, to enable him to engage in what he chooses. He describes this process as gradual, and experiences ‘good and bad days’, suggesting confidence has a temporal component. Similar meanings evolved from June, indicating that fear is a factor that underpins her participation in going out of her home environment. Ted’s fear of having another stroke directly impacted on feeling anxious in crowds, and cites shopping centres as a place that held a particular anxiety. Avoidance was his coping strategy.

Fear of going out/social confidence

Fear of going out and being socially active after a stroke was a major concern voiced throughout the interviews by all of the 10 participants. Some were able to address their fears early on in their recovery, whereas others found it more difficult and, years after recovery, have not fully been able to achieve this, resulting in an avoidance of going out and a general sense of a diminished social lifestyle and social confidence.

I don’t know whether it was that I was self-conscious about the fact that I was struggling with my wheelchair, or struggling to walk, people looking at me or not, but . . .

Ryan 15.13

Eventually, as your confidence grows, your bubble starts to get bigger, erm, the garden, then the street, then the shops, eventually.

Mick 19.2

Participants also attributed positive encouragement from others as an enabler to going out and not avoiding activities that caused fear.

Although participants acknowledged huge fears about going out and social interactions with others, coupled with this fear was an immense desire to overcome these fears. For example, Ryan states ‘I had coping strategies pinned all over the wall’ (15.17). It is clear from the descriptions evolving from participants that confidence improves over time. Nevertheless, for some this is a slow process that may never be fully resolved. In summary, fear has a huge impact on daily activities and lives after stroke, often linked with low self-efficacy and avoidance of engagement in tasks, roles and events.

Team confidence/collective efficacy

The influence of significant others, as touched on within the previous theme, impact on levels of confidence. Although, not surprisingly, participants described positive influences as enablers to regaining confidence and conversely, negative influences act as barriers, the negatives and positives are not always overt in the context of participant’s daily lives and often require a period of reflection. Influence from a supportive friend, coupled with self-determination, one participant’s confidence levels increased to a point that enabled her to pursue ambitions she would not have considered prior to her stroke:

He [Friend] said ‘Let’s go to Cyprus.’ I said I’m not going to CYPRUS [increased tone: laughter] – you see I’ve never flown before, you see, so we flew to Cyprus.’ [laughter]

Freya 41.7

Conversely, another participant describes her family’s ‘help’ as being restrictive:

They don’t let me, well, I can’t go out of the back door without someone going with me.

Helen 11.13

Independently mobile and competent, this participant describes feelings of inadequate opportunities, to fulfil her potential. A message underpinning success for another participant, fundamental in gaining the confidence to mobilise outside after stroke, was a physiotherapy intervention:

. . . the best thing that happened to me, and the most erm, useful one to me, was being referred to a physiotherapist.

Barbara 11.1

Initially, unable to mobilise to the kerb without fear of falling, and apprehensive about physiotherapy intervention, she described factors such as humour, empathy, positive reinforcement and encouragement as the components that led to a positive treatment outcome. Keen to feedback her perceived success, once her treatment was completed, she describes telephoning the physiotherapist who delivered her treatment:

And I said to him, I can walk into town now, I can walk as far as Marks and Spencer’s, and he said ‘I can’t believe it, that’s wonderful.’ But I can, and I can now get as far as the shopping centre.

Barbara 24.19

Increased confidence after stroke appears to have a component that is influenced by the actions of others, in addition to the actions of self.

Role confidence

Participants perceived that ‘loss of roles’ had an impact on decreased confidence.

Loss of a driving role was considered hugely important to two participants and both these participants reported being more confident and active once they were able to resume their driving role. A gardening role, for another participant, despite a memory issue since stroke, still enables her to participate in an enjoyable role:

Couldn’t remember when they were supposed to flower, if they flowered and all those kind of things, but it didn’t bother me.

June 26.38

Confidence in meaningful roles appeared to make a difference to all participants. Increased confidence was evident when participants were motivated to engage in similar roles that were important pre-stroke or when they had found replacement roles that generated similar benefits.

‘It’s not I can’t, it’s I can’: skill mastery

Participants illustrated many examples of how relearning skills and becoming successful in mastering a new skill as being one of the biggest factors in regaining confidence. Some participants were slow to start to regain skills and gave examples of how they avoided activities that evoked fear and uncertainly. Others described being successful in a particular task or skill, which enabled them to believe they could increase their range of activities. This correlates closely to the self-efficacy theory. Participants who described themselves as confident pre-stroke tended to also describe a higher level of self-efficacy. This process is best described by participants:

Once I could get up and take a step, I knew I could do it, I know it seems daft.

Ryan 10.13

Gradually your confidence builds. The first time is always kinda nervous [pause] well it is for me now anyway.

Mick 31.4

Eventually, started cooking for myself, I thought, oh I can manage to do different things instead of using the microwave all the time.

Freya 30.2

Once participants began to succeed and achieve by repetitive practice, their motivation and confidence levels improved enabling them to move on to other activities. Practising skills was described as increasing competence and confidence; nonetheless, when practice did not improve skill, participants described becoming frustrated and found that their confidence decreased.

‘Inner strength’ and confidence

The final theme examines how the phenomenon of confidence is associated with other components of psychological distress. For three participants, episodes of depression were prevalent after stroke. Other participants identified periods of low mood, and most had some experience of anxiety. Low confidence was cited as underpinning their daily lives throughout these experiences. One participant stated being depressed ‘makes you feel a bit useless’ (Helen 23.7) and another describes similar sentiments: ‘Some days I feel helpless, alone’ (Mick 20.10). Interestingly, a participant describing herself as having very low self-esteem and a history of depression prior to her stroke, perceives she has a raised self-esteem and higher self-efficacy beliefs as a result of her stroke journey – ‘an inner strength almost that I didn’t realise I had’ (Freya 35.19). She illustrates this by telling us:

. . . the main barrier is within yourself, I think. The biggest one is within yourself, you think I can’t do that and you think about it and you think I’ll try. But you don’t try very hard because you think you can’t do it, you see? So you have to try a bit harder and then you realise you can do it, you know. So often the biggest barrier is within yourself.

Freya 50.11

Although focusing on doing and achieving, a process that increased self-efficacy beliefs was experienced by some participants; others clearly described it being a struggle to achieve the same:

I know in the back of my head there was something telling me you had to try and do these things, because, if you don’t June, you’ll just sit and vegetate, and life is too important for that.

June 23.17

As soon as I see a crowd of people I start to lose my balance. Go ‘hold me’ someone hold me [panic in tone of voice].

Alison 15.1

This latter quote suggests that success is about more than skill and ability. Alison was able to illustrate how negative thinking can often lead to an unsuccessful outcome.

Reinforcement from others suggests that another participant is not enough on its own: ‘Everybody kept saying “Oh, you are doing so well” but it wasn’t enough for me’ (Helen 8.2), suggesting that positive reinforcement does not compensate for intrinsic worth. The data signify that participants’ confidence levels have been affected by having a stroke to varying degrees. In seeking to explore the meaning of confidence after stroke, connections and interrelations between themes were identified, and similarities and differences in the data and between participants were disentangled, confirming that the phenomenon of confidence is multifaceted and complex.

Summary

• Loss of confidence after stroke is a common experience.
• The impact of stroke is truly realised only when a stroke survivor begins to establish routines, and continues with his/her life. Loss of former roles and a lack of competence when trying to engage in previously familiar tasks is prevalent in the early stages of stroke recovery, often linked to questioning self-identity.
• Gradually regaining skills and re-establishing identity appeared to increase confidence over time.
• Fear was identified in this study as a huge barrier to being confident to do the things participants wanted or needed to do.
• Avoidance behaviours were evident and described in the data, lowering participant’s self-efficacy beliefs, further limiting the opportunity to become more competent and confident in activities and tasks.
• Social confidence, fear of social interactions and stigma, was also embedded within the study’s findings. Gracey et al. ⁶⁷ argued, if these issues fail to be resolved, a poor psychosocial outcome long term after stroke is realised.
• Strategies that enable stroke survivors to resolve loss of confidence in social situations should be considered a necessary treatment component in stroke rehabilitation.
• Confidence in ‘team’ and/or ‘partner’ was evident in the data. Descriptions of encouragement, patience and positive reinforcement are examples of factors that helped improve confidence and self-efficacy beliefs.
• Prevention of opportunities for independence and choice of activities resulted in loss of confidence, control and disengagement during recovery.
• A model to increase confidence in sport, which uses a multivaried framework encompassing self-confidence, role confidence, partner confidence, cohort confidence, team confidence, coach confidence and organisational confidence⁶⁸ might be suitable for stroke patients when trying to improve outdoor mobility.
• Highlighted in the literature is the concept that physical appearance often impacts on self-confidence; this was not prevalent in these study findings.