Tag Archives: Goals

Finding meaning in therapy

As a speech and language therapist and researcher, Mark Ylvisaker inspires my work. Mark was both a speech and language therapist and philosopher, and someone who passionately devoted his life to working with people with brain injury. Back in 2007, he said “in the absence of meaningful engagement in chosen life activities, all interventions ultimately fail”. A phrase like this really resonated with me as a therapist. Therapy needs to be meaningful. However, it wasn’t until a few years ago when a Professor asked me “but what is meaning?” that I started to consider the importance of this term.

In our interactions involving people with brain injury the term “meaningful” is regularly used; meaningful goals, meaningful activities, meaningful roles, meaningful participation and meaningful engagement. But what I found particularly interesting to learn was that philosophers couldn’t agree on the definition of meaning owing to its complex, fluid and multifaceted nature. In fact, philosophers argue that meaning does not surrender itself to a definition. They do agree however, that meaning is comprised of three features: connectedness, coherence, and subjectivity. Connectedness refers to the linking of experiences so that they can be understood and interpreted. Coherence refers to a person making an evaluation of their life or experiences as making sense or being coherent. This is usually done within a bigger context that may include a goal, motivation or life at large. Both connectedness and coherence relate to meaningfulness, as a disconnected and fragmented (incoherent) life is considered meaningless. Subjectivity refers to the subjective experience of connectedness and coherence, as the experiences in a person’s life have no meaning unless they are meaningful to someone.

This started me thinking about how we as therapists create meaning for people with brain injury. Some people may have a notion of what is meaningful to them but need our help to connect and make sense of their experiences. Others have lost meaning in their lives so we need to help them find it again. Meaning can be derived in many ways, from multiple contexts (or sources). An activity or action alone cannot create meaning. It is the emotional response to those activities or actions and the link to a higher purpose, motivation or goal, which is important to the creation of meaning. As a therapist, I’m often left wondering how to do that for people with brain injury. A few years ago, I came across some research by Levasseur and colleagues (2010) who described contexts according to a person’s involvement in an activity (alone through to interaction with others) and the goals of that activity (to satisfy basic needs through to helping others and contributing to society).

Taxonomy

 

 

 

 

 

Proposed taxonomy of social activities

This “taxonomy” made me realise that much of the therapy I was offering was at some of the lower levels (individual or small group activities focused on fulfilling basic needs e.g. buying a coffee, ordering lunch, having a conversation). Little therapy was focused on helping others or contributing to society in interaction with others. That is not to say we should do that, but rather, doing therapy in multiple contexts (or sources), which includes Levels 4-6, may serve to increase opportunities in which a person with brain injury can derive meaning.

The creation of meaning during the therapy process is considered essential for a person with brain injury to engage with the rehabilitation process. People with brain injury just want to take part in something, give something back to others and be someone important, in spite of their injury. If we can help people with brain injury take part in meaningful activities reflective of their desires, they may also report a better quality of life, which some would consider the ultimate goal of therapy. Some ways in which we could achieve this include: individual and group therapy; therapy in real-life contexts chosen by the person with brain injury; video-taping interactions involving people with brain injury and family members, friends and/or significant others; completion of projects designed to help others learn more about brain injury or help brain injury survivors cope with the experience of sustaining a brain injury; setting goals that relate directly to something bigger (e.g. getting a girlfriend, getting a job). These are just some examples of the contexts that may help people with brain injury find meaning in their lives.

Ultimately, I wrote this blog to convey a simple message: how important it is to help a person with brain injury find meaning in their lives. This message attests to Mark’s legacy who was dedicated to making lives for people with brain injury both meaningful and satisfying. Not losing sight of what is meaningful to our patients and clients is what we can do as therapists to take his life’s work forward.

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Dr Nicholas Behn
Speech and Language Therapist
City University London

 

 

Power, professionals, privilege and person-centredness…

DSC01389_lightAs an allied health professional and educator in the health and social care sector, I interview a lot of would-be health and social care professionals. Almost without fail, these university applicants talk about caring and their desire to work with people, of communication skills and understanding. In due course the successful students study hard to achieve their professional registration. The academic Caroline Ellis-Hills and her team have written that rehabilitation is about helping people to live a life not dominated by their disability; a shift from the traditional medical ‘fix-it’ models. With professional registration comes the opportunity to use newly acquired knowledge to support people to live such lives. This privileged opportunity is one of both position and potential power.  In policy, education and as health and social care professionals, we talk about being ‘patient-centred’; in reality and borne out in the research literature, we may be falling short in this aspect of our practice. It is my observation that many therapists, including me, readily slip into a ‘gift’ model of rehabilitation; one where as a product of our knowledge, we tend to hold the power and suggest what is best in the light of available evidence. As a result we tend to dominate and drive rehabilitation and in turn lose sight of the person at the centre. Again the research literature reflects this. For some years now, William Levack and his colleagues have looked in detail at what happens in goal setting; a central tenet of rehabilitation practice. They have observed that while therapists talk about person-centredness and empowerment, when there is disagreement between patients and teams about which goals to set, patient preferences seem to get lost. Regrettably, I recognise my own practice in Levack’s observation of therapists steering a patient to set less ambitious, more realistic goals; a goal Levack and his colleagues call a ‘privileged goal’. In the past I have rationalised this as therapeutic, avoiding raising unrealistic expectations and supporting the development of insight, but I am increasingly ill-at-ease with this element of practice and it is fast joining my list of behaviours and practices to eliminate in rehabilitation along with the over used and thinly considered phrase: ‘no rehab’ potential’. Furthermore, I’m asking myself (and my students), what’s the more normal behaviour; setting a realistic goal or setting an unrealistic goal? Hands-up …. I set a lot of unrealistic goals … for myself, over and over again …. so, I don’t really demonstrate very good learning either. Is this a health condition?

It’s reassuring that the research literature is documenting these phenomena and encouraging practitioners to think about practices that have become so embedded that we have ceased to examine what is really happening in these powerful interactions. However, notwithstanding the contribution of evidence based practice in recent years, we need to be wary of being too dependent on the research literature. For me, the most powerful prompt to re-evaluate my practice came from two ad hoc personal interactions. The first with a social work colleague who many years ago told me: ‘when someone is told they have ‘no rehab’ potential’, they feel like they have scored ‘null points’ for life’. The second was hearing the experiences of my school friend’s husband, David. David had an aggressive brain tumour in 2005, (http://www.braintumourresearch.org/david-grant_725 ). When diagnosed he was told his life expectancy was about 15 months. A decade later, David is still here. He’s only recently retired from fulltime work and remains both independent and active, contributing to student education, cancer charity and policy work.

When I first heard David talking about his goals I remember worrying that he lacked insight about the gravity of his condition. David’s goals were big, ambitious and emotionally laden; things like, ‘I’m going to walk my daughter to school on her first day at school’. As a friend, I struggled with how to react. I felt empathy for any therapists who might have been trying to rein him in and recalibrate his expectations. Actually, it was me who had to recalibrate; David did not and does not lack insight. He is absolutely realistic about the gravity of his condition, but this does not mean he cannot also be active and hopeful. The importance of supporting and nurturing hope features little in health and social care education but is an area gathering attention. Returning to the research for a moment, there’s evidence that, just like David, patients can remain hopeful but equally grasp the seriousness of their condition. Bright and her colleagues reviewed the literature about hope in relation to stroke and suggest that while there’s some evidence that health and social care professionals can have a positive role in fostering hope, they are just as likely to dash hopes, to justify this as setting realistic expectations and what’s more, seldom see fostering hope as their role.

Clearly there is a balance to be struck, but I have always thought that there is huge merit in the phrase David recalls his oncologist using: ‘David, you have a very nasty brain tumour, but a small minority of people do very well; join them!’. After all, how do the health and social care professionals ‘know’ what a realistic expectation is?  For a couple of decades now we have been encouraged to look at the evidence, the statistics and empirical research; to embrace evidence based practice. There is of course value in such evidence, but it doesn’t tell us the whole story. David, for example, is excluded from brain tumour survivor research because …… well, he’s survived too long! The occupational therapist and writer in the field of rehabilitation, Karen Whalley Hammel, encourages us to tease apart the ties between knowledge and power. As far back as 1999, Coulter wrote in the British Medical Journal: ‘….while the professional is knowledgeable about the individual’s condition, only service users and carers know about their experiences, circumstances, habits, preferences and values; the partnership approach to care should be based on mutual respect.’ There are echoes here of George Kelly’s characterisation of two experts in the room. A decade and a half later we still talk about patient-centredness as if it is a new concept and campaigns such as Kate Granger’s (http://hellomynameis.org.uk/), suggest there is still a way to go and that there are small things that can make an enormous difference.

I’m encouraged that increasingly I see issues of hope and person-focus thoughtfully discussed by both therapists in training and those more established in practice and I find myself thinking: ‘Is an experienced practitioner the one with the most up-to-date disease-specific research knowledge or the wise one, open to possibility, practising their craft with care and respect and above all with a focus on the individual?’

Deborah Harding
Senior Lecturer, Rehabilitation
Faculty of Health and Social Care Sciences
St George’s, University of London
Email: d.harding@sgul.kingston.ac.uk
Twitter: @HardingDebs

Sadly – not all academic journals are open access yet, but for those who are interested here are the references for any literature I have cited:

Bright, F.A.S., Kayes, N.M., McCann, C.M. and McPherson, K.M. (2011) Understanding hope after stroke: A systematic review of the literature using concept analysis.  Topics in Stroke Rehabilitation. 18(5): 490-508

Coulter, A. (1999) Paternalism or partnership? Patients have grown up – and there’s no going back. British Medical Journal, 3 19: 719–20

Ellis-Hills, C., Payne, S. And Ward, C. (2008) Using stroke to explore the Life Thread Model: An alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2): 150-159

Kelly, G. (1963) A theory of personality: The psychology of personal constructs. New York : Norton

Levack, W., Dean, S.G., Siegert, R.J. & McPherson, K.M. (2011) ‘Navigating patient-centred goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities’, Patient Education and Counseling. 85(2): 206-213

Whalley Hammel, K., (2006) Perspectives on Disability and Rehabilitation: contesting assumptions; challenging practice. London: Churchill Livingston

News Group: Behind the Scenes (2/2)

I wrote last month about how some of our neuro-rehabilitation service users benefit from the experience of attending the news group we run on the ward.

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As a service, we have found that we can use our group provision for a number of purposes:

 

We can use the group to provide different packages of care to different service users within the same session. We may invite people to attend news group as part of their goal-based therapy. For example, they may be working towards a more consistent use of intelligibility strategies, or demonstrating increased communicative confidence by facilitating discussion or presenting a news item as part of the session.

Some people know they are able to participate relatively independently in group conversation. However, they may continue to benefit from support, for example to counter the effects of fatigue or distractibility. Further speech and language therapy (SLT) input for these people beyond discharge from our ward may not be indicated, but there are benefits to them continuing to attend the group while they are with us. This monitoring and maintenance package allows room for fine-tuning and further confidence boosting prior to discharge. Such people are also often positive role models for other group members who may require higher levels of support to engage in group conversation.

Some group members still early on in their admission, or newly referred to SLT by others in the multidisciplinary team, may join us for a number of assessment sessions. This may be because the group setting reveals more interactive skills than they are able to show in the often more transactionally-based ward setting. Alternatively, for some there may be an indication of higher-level language processing or social communication difficulties, which do not impact particularly on the ward. Attending the group allows further assessment of the impact, which their impairments may have in more complex group conversation. It can also provide a concrete starting point from which to discuss these subtle difficulties with the service users who may not themselves necessarily consider any difficulties to be present

Group sessions provide rich observation opportunities for new staff and students. Over the past year, we have been joined by students from nursing, medicine, physiotherapy and occupational therapy. We invite new staff members to join us as part of their induction. The richness of the experience of coming to the group as an observer is that there is the opportunity to meet people with a number of different communication diagnoses, and to see in action the strengths and needs these diagnoses may create. A further positive is that none of our observers is passive; anyone coming to visit our group is invited to participate, thus enriching their own experience and learning, while providing further positive role modelling for our service users. Our own SLT students will often take on facilitation of the group for the duration of their placement, which works particularly well with peer placements.

The news group is a joint project between occupational therapy (OT) and SLT. We have found that we need to meet frequently to review and discuss the strengths, needs and progress of each participant to ensure we keep our input focused. Otherwise, there can be a risk of running a session which goes through the motions of looking at recent news stories, but which gives no specific input to any of the packages of care identified for each service user. I will admit that this has happened at times especially if staffing is low or the ward very busy. After a ‘going through the motions’ session, I feel I have facilitated an opportunity for social interaction and the chance for some people perhaps to take on a bit of information about current news events. However, I also feel that the same session could have been facilitated by an enthusiastic volunteer with no specific training in or knowledge of communication impairment.

News group review has now evolved into a joint SLT and OT review of the needs of whoever is on our ward at any given time, and whether there are other groups we could run. This can often change from month to month as we aim to create group opportunities for the people we have on our ward, rather than to try to shoe-horn people in to a fixed format. For example, in the last fortnight we find we have several people with specific comprehension needs and have this week started a ‘points of view’ group structured with a very low language load, but providing opportunities for interaction and expression of likes and dislikes through music appreciation (a clear split in today’s group between heavy metal and the Jackson 5!), chocolate tasting, TV reviewing and more as we plan it..!

Nic Martin

News group: ‘being part of something’ (1/2)

10.30am and this week’s News Group is about to start on the neuro-rehabilitation unit where I work as a speech and language therapist. As I arrange chairs and sort through the newspapers, John arrives without any prompting, having remembered to consult his diary for his programme for the day. John is working on strategies to compensate for memory impairment.

Steve is next to walk in. He has come prepared with a couple of news stories to present to the rest of the group. Steve has had a long hospital stay and is close to getting home now. He wants to fine-tune his speech intelligibility strategies as he hopes to make moves to a gradual return to his job where speaking to small groups is a significant component. The plan is that next week he will co-facilitate the group with me as he has enjoyed re-exploring the nurturing side of his nature; discovering that he can be supportive of others here in hospital just as he has done in his work role in the past.

Jan arrives on time having consulted her diary too. She announces that she has ‘done her homework’. She spent a session with the speech and language therapy assistant yesterday selecting and preparing a news item to present to the group. Jan has used the group to rebuild her communicative confidence. This was low when she first came to us due to difficulties with verbal explanation as a result of generally slowed processing. Like Steve, Jan has now become a supportive member of the group, using sessions both to challenge herself to convey information and her own opinions concisely, as well as to encourage other group members to contribute to the discussion:

‘Other people share topics and I’m learning more. It’s like educating. I’m learning about more and different things. I’m speaking loudly. Preventing other people from butting in because before I just whispered. Now I don’t shut up talking. Definitely more confident. I can tell people ‘shut up, I’m talking!. I won’t cope with rudeness. I liked having the chance to prepare the day before.’

‘I was worried at first about coming but then I actually really enjoyed it.’

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As Steve and Jan organise their notes, Hashim comes in, with my occupational therapy colleague and co-facilitator. Hashim finds it difficult to inhibit voicing his every thought, which as well as impacting on conversation, is affecting his ability to engage and benefit fully from his other therapy sessions. We will agree as a group before we start that we will endeavour to let everyone have a turn at getting their point across, and that we will supportively highlight when any group member may be returning to a theme they have already clearly expressed in whatever way they can. This provides a structure for giving direct feedback to Hashim as necessary. He also has the opportunity to interact with positive role models such as Steve and Jan throughout the session’s discussion on world news, sports news, celebrity gossip, local news or perhaps even a bit of light-hearted ‘ward gossip’. More serious ward issues may arise at times. The group is a safe place to express any frustrations and to problem-solve with others possible courses of action. As staff members, we may be able to take an opportunity here to provide information, or to offer to take on an advocacy role for a given issue if needed.

Now Val walks in with a student nurse who wants to learn more about the role of the SLT on the ward, and who will join our group today. Val has marked expressive aphasia. In a group setting, she has been able to show that her functional communication skills far outweigh her abilities in more specific word-finding tasks and in the limited, often practitioner-led, task-focused conversation opportunities which she is most frequently exposed to on the ward.

Vladan too has aphasia. Previously a keen daily newspaper reader, he has said he enjoys the group as it allows him the extra time he needs to absorb information about what is going on in the world. Participating in the group also provides Vladan with unpressured space to try out compensatory strategies, such as drawing or circumlocution, when word finding difficulties arise. 1:1 support from one of the two co-facilitators is available. Any encouragement to verbal output from Vladan is in response to whatever course the group discussion is taking. There are no test questions or situations where Vladan is expected to attempt to convey information already known by others in the group. Some weeks, with his strong auditory comprehension abilities, Vladan may choose to participate primarily by listening and commenting with facial expression (often cynical!), a laugh or a nod.

Josie completes the group for this week’s session. It is not easy for Josie to remain orientated to time and place. The group provides an opportunity for her to receive gentle orientation as we will generally begin by checking the date on the newspapers, again avoiding any direct testing. The daily news then provides ready-made, genuine material for orientation to the times we are living in as the group as a whole attempts to piece together the facts on any given news story before moving on to opportunities for discussion and debate.

‘It’s lively and thorough and makes me feel as though I am part of something.’

Although definitely a place for rehabilitation, our ward does feel very much like a medical ward with people spending large amounts of time at their bed-space on a bay when they are not engaged in therapy sessions or activities. Group members have frequently reported that they enjoy the opportunity to socialise with other people they may otherwise not meet; people from so many different backgrounds and ways of life:

‘Works as a social mechanism – that’s important for people with communication problems. It helped me to work on volume and voice but it was more about confidence.’

Group members consistently express how they enjoy the group sessions and will talk about the news group during their other therapy sessions that day. The group membership can change from week to week according to the admission and discharge patterns on the ward. However, the format of the group is such that as long as we have news to discuss, there will be people on our ward who can benefit from and simultaneously contribute to what the news group has to offer.

 Nic Martin

Please note all names have been changed to protect identities.

 

Reflections on what supports change and personal growth (2/2)

march14Continuing with our two-part blog post on the different strategies people employ to support change, this month’s entry reflects the voice of some of our clients who have generously shared their ideas below:

Dom: “When I am planning anything I am always trying to save myself energy and to plan anything I need to be energetic for. The first person I always go to is Marc. He is my best starting point. Then I go to Gary and then my parents. Marc is impartial, independent, and my friend. He wants to help out – he is my housemate and nearest carer. Gary (my paid carer), by contrast, is efficient and organised! All the things Marc isn’t. Asking Gary is like asking my Dad for something, but without the judgmental nature of my Dad! Plus I pay Gary and so I can expect the job to be complete and not forget stuff. My parents are like my safety net – the last line of defense.”

Here Dom identifies the importance of the initial planning process when contemplating change, as well as considering the personal demands the change involves – including the emotional and physical energy engaging in something new can take. He highlights the value of knowing who he can turn to for what when looking for support as different people bring a unique set of qualities and skills and are, therefore, more naturally suited to helping in some situations more than others. Finally, Dom signals that family are not always the first port of call and that being willing to pay for help can usefully bring consistency and reliability.

Tony: “With something I want to do that I am motivated about I rely on myself mainly. But with things I know I should do like going to the gym I need others to help motivate me. To get to the gym, Jane (my wife) keeps on at me and gives me a push! Knowing that it’s going to do me some good and make me feel better when I have done it also helps to get me there!”

Tony emphasises the importance of personal meaning and engagement when trying out something new. He also reflects on the significance of recruiting support from others for desirable but less intrinsically motivating activities. Finally, drawing on past experience to identify a sense of future achievement is highlighted as a helpful means of self-motivation.

Cara: “It’s useful for me to set goals for myself, both short- and long-term when trying to make a change. Having something tangible to work towards keeps me focused and moving forward. Encouragement from other people – family, friends, or people inside therapy – gives me the strength to push myself and try new things. I’m very inspired by other people who stammer and their stories. When I see someone living their life in a way that I thought was impossible, it motivates me to change.”

Here Cara foregrounds the value of structure and a clear idea of what she is working towards from the outset, which she achieves by breaking bigger aspirations down into smaller, more manageable steps. She identifies recruiting the support and encouragement of others as a valuable means of promoting a more experimental attitude to change and fostering greater risk-taking. Cara also cites the importance of meeting others with similar experiences for inspiration and the re-definition of what is possible.

Walter: “My current approach to ‘new growth’ is to be tough with myself in taking on new challenges in which my stammer is likely be “an issue’ – especially at work (e.g. chairing meetings, talking in senior meetings) – having decided that I am happy to present myself as someone with a speech problem. It would otherwise be all to easy to spend the rest of my life internally using my speech as an excuse for not doing things, while externally trying to present myself as fluent – that if anything would cramp new growth. The other important new developmental thing I have taken on is to be proud to talk about my stammer and how I handle it – it is, after all, an extremely tough course on which to find oneself, much like SAS selection in psychological terms, and, as a person who stammers, I am proud of how I am surviving it and keen to project my pride in that survival.”

Walter signposts the importance of courage and being willing to challenge himself to take risks and step outside of his comfort zone. He highlights the value of working hierarchically as a means of doing this. Walter also advocates being more honest and genuine with people rather than attempting to hide any communication difficulties from them. Being aware of the short- and long-term costs of not making the change is also cited as self-motivating. Finally, Walter highlights the value of developing a kinder and more compassionate understanding of the day-to-day challenges of living with a communication disability, reframing openness and a willingness to share his personal experience of stammering as an act of pride and personal achievement.

I thank everyone who has contributed to this two-part blog post for their time, self-scrutiny and insight, and hope that their diverse examples inspire you to consider the ways in which you support your own change process – and to even contemplate trying out something new.

Sam