5: Occupation and long-term neurological conditions

CHAPTER 5
Occupation and long-term neurological conditions

5.1 Introduction

Occupation is the foundation of occupational therapy, yet this relatively straightforward assertion becomes inordinately complex in practice. Challenges exist for occupational therapists in the application of the theoretical concepts of occupation to the accurate identification of occupational needs and the development of person-centred and meaningful occupational goals. Within this chapter occupation is considered within the constructs of doing, being, becoming and belonging and in the context of unpredictable and life-changing progressive neurological disease. Personal narratives are used throughout the chapter to illustrate the broader context of occupation in practice.

5.2 Defining occupation

Theoretical models of occupational therapy define occupation within three domains of self-care, productivity and leisure (Law et al., 1997, p. 34). Within this theoretical framework the focus is predominantly on the ‘doing’ aspects of the tasks which people carry out within their everyday lives. The main emphasis is placed on the execution of the task with secondary consideration of elements of performance capacity which may inhibit or restrict successful completion of the particular activity. This approach however provides little understanding of the meaning or purpose that engagement in such tasks brings to the person (Preston, 2009).

Throughout this book occupation will be considered within Wilcock’s (1999) model of occupations for doing, being, becoming and belonging. Aspects of personal effectiveness, importance or worth attached to the task and the amount of enjoyment or satisfaction gained from participation all contribute to the level of motivation and willingness for a person to engage in activity (Preston et al., 2014). Diagnosis with a long-term neurological condition can significantly impact on the choice and potential abilities to engage in occupations which people find meaningful as can be seen within the following example (Preston, 2009):

Maureen:

So, it, it’s, I mean it’s [MS] played a big role in my life. What I’ve done and what I’ve not done, I mean I’ve never been abroad, I’ve only been down in England, three times…and…I don’t make plans. Even when the children were small I never made plans to go anywhere, because I knew that every day that there would be something going on with me. I remember when eh, we had made a plan to rent a car and go away…and…I got neuralgia in my face. It’s just, the pain, and I couldn’t go anywhere. I remember going to eh, Arran, and the pain in my legs with just sitting in the car…and…I mean I wasn’t doing anything…and we went out for a little walk round about to see what was going on…and eh, I was in agony, but the children were small, and I had to do it for the children.

(Preston, 2009)

5.3 Occupational patterns

Occupational patterns develop over time and within certain socio-cultural norms of how the specific occupation is to be performed (Erlandsson and Christiansen, 2015). Analysis of occupational patterns therefore requires the occupational therapist to consider the past occupations as well as the future occupations of the person living with a long-term neurological condition (Erlandsson and Christiansen, 2015). Occupations will change and be adapted as people transition through life stages, and the meanings attributed will continue to evolve (Erlandsson and Christiansen, 2015).

People living with a long-term neurological condition may reflect on their previous occupations prior to the diagnosis often ascribing occupational change to the impairments and associated limitations of subsequent disease progression. Fraser provides an illustration of how his occupations have changed over time, and what this means for him, further to a diagnosis of multiple sclerosis (MS):

Well…I was like working since I was a wee boy, you know like when I was 9 years old I worked for a milk run until I was 12, then when I was 12 I worked on the farms so, I was always used to going about all the time, hardly in the house, eh…, I just liked to be the one that provided for my family, when I couldn’t do that, that kind of got to me…

(Preston, 2009)

For others like Maureen, reflection on her current occupations helps her to understand her previous limitations within the context of her difficulties as a young woman prior to a diagnosis of MS:

But now, now that I think about it, eh, what was going on with me, I mean I thought a lot of the time I was stupid and was slow. Um…but I wasn’t stupid, and I know that. You just, now I can start putting things in place…that, this is happening to me because of the thingmy [MS]…um, so…I mean I’ve been able to sort of put things into place, where if you had had this interview with me when I was in my teens, I would have had a different eh opinion of what was going on with me and eh…I knew, I knew that I couldn’t work. I wasn’t…, nobody could depend on me.

(Preston et al., 2014)

The nature of occupational patterns may develop a certain regularity, predictability, or consistency determined by the person living with a long-term neurological condition, for example changing bed linen every Monday, weekly shopping, or going to the hairdresser once a month (Erlandsson and Christiansen, 2015, p. 125). Society and culture may also influence these predictable patterns or routines such as going to church on Sundays. Routines are defined as ‘occupations with established sequences and provide an orderly structure for daily living’ (Erlandsson and Christiansen, 2015, p. 123).

Habits and routines are woven into the fabric of our personal and social lives as humans, and it is hard to get through the day without encountering some element of habitual behaviour (Graybiel, 2008). Habits are largely learned from repeated behaviours over the course of a period of days or years until they become fixed (Graybiel, 2008). The relationship between habit and long-term neurological conditions is not yet fully understood and as well as the implications for occupational therapy practice. However helpful as habits can be in daily life, they can become dominant and intrusive in neurological conditions such as Huntington’s disease (HD) or exaggerated in some forms of Parkinson’s (Graybiel, 2008).

Occupational patterns support people living with a long-term neurological condition to (Matuska and Christiansen, 2008):

Meet basic needs and which are necessary for personal health and safety
Have rewarding and self-affirming relationships with others
Feel engaged, challenged and competent
Create meaning and a satisfactory personal identity
Organise time and energy to meet important personal goals and personal renewal.

Occupational balance occurs when there is equal participation in physical, cognitive, social and rest occupations (although the actual amount of time spent in each can be different) and when the individual finds meaning and value within the occupations in which they engage (Håkansson et al., 2006). Occupational balance is a dynamic process which requires a combination of occupations which are self-chosen and those which are required in response to daily habits and routine, or those expected from others (Håkansson et al., 2006). In order for an individual to achieve occupational balance, the person must perceive that they have the necessary competence and control to allow them to engage in personally meaningful occupations (Håkansson et al., 2006).

5.4 Doing, being, becoming and belonging

Occupation is the synthesis of doing, being and becoming that is central to everyday life and is necessary for adaptation and survival (Creek, 2003, p. 32). Wilcock’s (1999) model provides a structure for the occupational therapist to explore and understand a person’s unique relationship between an individual task/activity (doing) with their sense of self (being), ability to realise future aspirations (becoming) and a sense of inclusion in society (belonging).

5.4.1 Occupations for doing

Doing is the medium through which people engage in occupations, and the skills and abilities needed for doing accumulate over time. Doing involves engaging in occupations that are personally meaningful but not necessarily purposeful, healthy or organised. Doing involves being actively engaged, either overtly (i.e. observable, physical) or tacitly (i.e. mental or spiritual). Doing follows broadly similar patterns across the population, and humans are able to adapt their doing to greater and lesser degrees according to circumstance.

(Hitch et al., 2014)

Doing is an essential part of being human as ‘people spend their lives almost constantly engaged in purposeful “doing” even when free of obligation or necessity’ (Wilcock, 1999). When considering ‘doing’ it is important to identify the broad range of activities a person may engage in and the meaning and importance they attribute to these activities/tasks is fully explored and understood. Living with a long-term neurological condition can impact on all aspects of the person’s ability to ‘do’ and in turn their sense of being, becoming and belonging.

Graeme offers some insight into what it meant for him when his walking ability changed due to MS. Graeme illustrates meaning through his comparison to child development when he was unable to perform what he believed to be a simple everyday function:

I think because sometimes I can’t do basic things like walk, you know, that takes all the confidence away from you that eh, I’ll say to myself, you know it sounds stupid but kids at 3 year old, 4 year old walk about, and I’m blooming struggling to walk you know, I have got an illness but why the hell should I not be able to do that?

(Preston, 2009)

For Grace, her continued engagement despite her difficulties with balance reflects her motivation to master aspects of doing within her routines:

And that’s, that’s what I do, like um…I’ve seen a simple, well maybe it’s not so simple like putting the curtains up, but I always think to myself how am I going to do that or see even painting, I’ll say to myself right how am I going to paint that skirting board or whatever else, and I can’t bend down because then I would fall over you see, so if you sit long enough I think I could get a chair and I could paint the skirting board sitting on a chair. With these kinds of problems I can always sort of find an answer.

(Preston, 2009)

Capacity for doing relies on aspects of physical, cognitive and affective skills to allow the person living with a long-term neurological condition to carry out the actions, and monitor and modify the process as necessary (Hocking, 2011). Attitudes and beliefs shape the way things are done and how the knowledge and skills are applied to the occupation. Capacities change over time and can be acquired, maintained or honed through engagement in occupation (Hocking, 2011). Changes can also occur in knowledge, skills and attitudes in response to progressive neurological conditions.

5.4.2 Occupations for being

Being is the sense of who someone is as an occupational and human being. It encompasses the meanings they invest in life, and their unique physical, mental, and social capacities and abilities. Occupation may provide a focus for being, but it also exists independently of it during reflection and self-discovery. Being is expressed through consciousness, creativity and the roles people assume in life. Ideally, individuals are able to exercise agency and choice in their expression of being, but this is not always possible or even desirable.

(Hitch et al., 2014)

Below Diana describes her relationship with her friends and her need for them to see her as who she really is, independent of her diagnosis with MS:

Probably because I don’t want them feeling sorry for me. …Yeah I don’t want them feeling sorry for me, I want them to be my friends because they want to be my friend, not because oh I’ve got to go round and help Diana with this or help Diana with that. I’m not that type of person. Not that type of person. I prefer to do something in return. If somebody does something for me, I do something for them. I know that maybe sounds wrong, but that’s me, that’s me. …that’s who I am, who I am.

(Preston et al., 2014)

Within the construct of ‘being’ the emphasis is on the experience of the occupation and the feelings it brings to the person living with a long-term neurological condition (Hammell, 2004). Being contributes to the development of occupational identity and the roles that people living with a long-term neurological condition inhabit within their everyday lives which in turn shapes the occupations in which people engage (Kielhofner, 2002, p. 73). As capacity changes for people living with a long-term neurological condition this may impact on their choice of occupations and their sense of occupational identity. Capacity in the sense of being relates to the ‘innate and perhaps underdeveloped potential, aptitude, ability, talent, trait, or power with which each individual is endowed’ (Wilcock, 2006).

At first glance, Maureen seems to describe her despair at not being able to cook for her family:

And, um…I always cooked for my children and my husband. I never used tins. I used one tin a week, of food, and that was baked beans! Because I always cooked for my children and my husband, produced good food for myself. In the end up, before I was actually diagnosed with MS…I couldn’t peel a potato, and I broke my heart. And then, it sounds silly not being able to peel a potato, I…(laugh) I sat and I cried myself silly that I couldn’t peel a potato.

(Preston, 2009)

However when the occupational therapist suggested that Maureen could use ready-prepared vegetables from the supermarket, it became apparent that Maureen’s distress was due to her perception of being unable to fulfil her role as a mother, who, according to her own beliefs, had a duty to provide wholesome food for her family. By focussing on the practical aspects of food preparation alone the occupational therapist was unable to capture the subsequent meanings associated with this task for Maureen.

An important aspect of being, particularly for people living with degenerative neurological disease is the sense of ‘being as existing’ and the need for time and space as a means of self-discovery, thinking and reflection, or time to just ‘be’ (Hitch et al., 2014). People living with long-term neurological conditions need time to sit with their emotions, and take a break from life to reconfigure their individual sense of being as a pre-requisite for further active engagement (Hitch et al., 2014). Maureen offers an example of her personal reflections:

Maureen:

I think, I think, eh, I’m not quite as ‘me’.

Researcher:

Tell me more about that.

Maureen:

Me, being the self-conscious, of what is going on, or me being um…as judging myself, I judge myself an awful lot, I know that, you know, um, but…I’m getting better at saying ‘it doesn’t matter’.

(Preston, 2009)

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