Department of Neurobiology, Care Sciences and Society

Department of Neurobiology, Care Sciences and Society

Division of Occupational Therapy

Master thesis in Occupational Therapy, 30 credits

Spring term 2009

Holistic group rehabilitation
A shortcut to adaptation to the new life
after mild acquired brain injury
Author: / Lotta Nilsson
Supervisors: / Aniko Bartfai
Monika Löfgren

LIST OF CONTENTS

ABSTRACT.……………………………………………………………………………………4

INTRODUCTION.……………………………………………………………………………..5

The Canadian Model of Occupational Performance (CMOP)...... 6

Brain injury...... 7

Cognitive disability...... 8

Mild acquired cognitive impairment...... .8

Self-awareness of disability...... 9

Cognitive rehabilitation...... 10

Group rehabilitation programme...... 11

Aim...... 13

METHOD...... 13

Design...... 13

Selection of informants...... 13

The group rehabilitation programme...... 14
Data collection...... 15

Data analysis ...... 16

Ethical considerations...... 17

RESULTS...... 18

The core category - The process of change ...... 18

Phase 1: Between injury and group treatment...... 19

Phase 2: During treatment and post treatment...... 20

Category 1 – Overcoming the deficits...... 20

Theoretical knowledge...... 21

Illustrative models...... 21

Compensatory strategies...... 22

Body awareness training...... 22

Fellow group members – Group leaders...... 23

Contributing to shortcut, repeated reunions, discussions...... 23

Category 2 – The disappearance of the capable self...... 24
Self-image, self esteem...... 24

Reduced energy...... 25

Insight, acceptance, motivation...... 25

Category 3- Changes in family /social relations...... … 26

Social network, social defusing, support, misunderstanding....26

Reduced spare-time, planning...... 26

Category 4 - Differences in attitude to work...... 27

Measuring device...... 27

Valuable, work-focus, changes, reduced capacity...... 27

Co-workers’ attitudes...... 27

The model...... 28

DISCUSSION...... 29

Methodological considerations...... 31

Clinical implications...... 32

Conclusion...... 32

Further studies...... 33

REFERENCES ...... 34

ABSTRACT

Introduction: Patients with mild acquired brain injury (mABI) often receive the same interventions as patients with moderate and severe brain injury, which might be ineffective for patients with mABI. Research on the efficacy of occupational interventions for patients with mABI is very limited. In this study the experiences of patients in a holistic group rehabilitationprogramme for patients with mABI was investigated. The aim of the programme was to facilitate performance in daily life. The programme included information concerning brain injury, compensatory strategies for daily life and coping discussions.

Aim:To explore and gain understanding about what individuals with mild acquired brain injury consider are the most effective ingredients in a group rehabilitationprogramme and describe how the programme affects the rehabilitation process.

Methods:Interviews were conducted with10 patients (men/women, 5/5) between 33-59 years of age, with diagnosed acquired mild brain injury. The patients were recruited by purposive sampling after completing the group rehabilitation programme. Data analysis was performed using constant comparative method.

Results: All patients perceived that the programme provided them with awareness of their difficulties in daily life which was a start for being motivated to develop and use compensatory strategies in order to function better in daily life. Holistic group rehabilitation can be considered as a shortcut to change and increased awareness by speeding up adaptation. The core category “process of change” and five sub-categories were defined; “the injury”, the group process”,” the individual”,”family” and “work”. The results are discussed within the framework of the Canadian Model of Occupational Performance (CMOP)

Conclusion:The holistic group rehabilitationprogramme provided an integration of knowledge, strategies and self-image leading to changes in how to cope with problems in daily life.

Keywords:brain injuries; group rehabilitation;awareness, occupational therapy

INTRODUCTION

The aim of this master thesis is to qualitatively evaluate a group intervention, tailored for persons with a mild acquired brain injury (mABI). Despite the term “mild”, a mABI can result in apparently severe problems (Comper et al, 2005). Persisting emotional and cognitive symptoms after mABI can be so disabling for some patients that daily life becomes a challenge and reduces life satisfaction (Tiersky et al, 2005, Stålnacke et al, 2007).The evidence base for management of mABI is limited and relevant data of interventions are scant. Often treatment strategies intended for moderate and severe acquired brain injuries (ABI) patients are used, which might be ineffective for individuals with mABI (Ponsford, 2005, Comper, 2005, Miller & Mittenberg, 1998, Stålnacke et al, 2007).

With this starting-point, a group rehabilitationprogramme was developed andestablished 1997, with focus on the needs for patients with a mild acquired brain injuryin the post acute phase (Bartfai et al, 2000).The base of the rehabilitation was gathered from holistic neuropsychological rehabilitation approaches from Ben-Yishai (2000), and Christensen (1998), addressed to the needs of patients with moderate to severe traumatic brain injury (TBI) (Prigatano, 1999).It was considered that the programme should benefit from an integrated knowledge base from both occupational therapy and psychology (Bartfai et al, 2000).A holistic approach consists offive specificinterrelated activities: establishing a therapeutic milieu or community, cognitive rehabilitation or retraining, psychotherapy, the ongoing involvement and education of family members, and a protected work trial. It aims to foster awareness and acceptance of the consequences of one’s brain injury, helps to improve social skills and helps to achieve a higher level of independence and productivity (Ben-Yishai, 2000, Prigatano 1999).

The development of the rehabilitationprogramme in the current study was build withinthe model of the International Classification of Functioning, Disability and health (ICF) in mind(WHO, 2001). ICF provides an international and inter professional scientific-base for understanding and studying health. The concept of participation in the ICF is a central construct in rehabilitation and occupational therapy and for occupational therapy another value is the connection between health and occupation (Hemmingsson & Jonsson, 2005). The components of the ICF classification are illustrated in figure 1. The group rehabilitationprogramme integrates pedagogical components targeting body functions, body structure, activity, participation, environmental factors and personal factors.For example, the theoretical informationin the programme, the discussions connected to the theoretical briefings and the body awareness training relates to body function, practicalexercises connecting to the theory part relate to the activity component and homework, meetings with family relates to the participation component.

Figure 1. Interactions between the components of the international

classification of functioning, disability and health (ICF)

(WHO, 2001 p 26).

The Canadian Model of Occupational Performance (CMOP)

From an occupational therapy perspective, health is more than absence of disease. It has personal dimensions and is strongly influenced by having choice and control in everyday occupations. Occupation is a basic human need and is defined by Canadian Association of Occupational Therapists (CAOT, 2002); everything people do to occupy themselves, including looking after themselves (self-care), enjoying life (leisure), and contributing to the social and economic fabric of their community (productivity) . The primary role of occupational therapyis enabling occupation and doing it with a client-centred focus. Enabling occupation means collaborating with people to choose, organise and perform occupations which people finds useful or meaningful in a given environment. Occupational performance is the result of the dynamic relationship between persons, environment and occupation over a person’s lifespan(CAOT, 2002). The Canadian Model of Occupational Performance (CMOP) provides a framework for enabling occupation for all persons and is illustrated of a dynamic interdependence between person, environment and occupation.In the model the person is an integrated whole who incorporates spirituality, social and cultural experiences and observable occupational performance components. The environment is those contexts and situations which occur outside individuals and elicit responses from them. The environment is the context within which occupational performance takes place. Change in any aspect of the model would affect all other aspects.

Figure 2. The Canadian Model of Occupational Performance, illustrating the dynamic relationship between persons, environment, and occupation over a person’s lifespan (CAOT, 2002, p.32).

Brain injury

Acquired Brain Injury (ABI) is damage to the brain acquired after birth that can result from traumatic brain injury (i.e. accidents, falls, assaults, etc.) and non-traumatic brain injury (i.e. stroke, brain tumors, infection, poisoning, hypoxia, ischemia,metabolic disordersor substance abuse). It can affect cognitive, physical, emotional, social or independent functioning.The severity of problems varies from mild to severe (Turner-Stokes, 2008).After ABI cognitive and emotional symptoms often persists and can significantly affect an individual’s abilities to perform everyday tasks, fulfil former roles and maintain personal-social relationships (Tiersky et al, 2005), Toglia,1998a, Prigatano, 1999).Depending on severity and location of injury this means that a brain injury can affectall aspects of life, from personal ADL to complex roles.

Cognitive disability

Cognition can bedefined as the individual’s capacity to acquire and use information in order to adapt to environmental demands. (Toglia, 1998a) This definition encompasses information processing skills, learning, and generalisation. The capacity to acquire information involves information, processing skills or the ability to take in, organise, assimilate, and integrate new information with previous experience. Cognition is an ongoing product of the dynamic interaction between the individual, the task, and the environment (Toglia, 1998a). Cognitive disability may be seen in a) reduced efficiency, b) pace and c) persistence of functioning, d) decreased effectiveness in the performance of routine activities of daily living, e) failure to adapt to novel or problematic situations (Cicerone et al, 2000). Clinical studies have mainly focused on effects from moderate to severe injuries, which imply that the knowledge of the effects impairments of mild acquired brain injuries is weak.

Mild acquired cognitive impairment

Patients with a mild acquired cognitive impairment (mABI) arean etiologically mixed group, since it includes a broad variety of all diagnoses of brain injury and also a range of severity of injury from mild to a moderate/severe injury with a good recovery (Rice-Oakley & Turner-Stokes, 1999).

The largest etiological group within mild acquired brain injuriesis the group with traumatic brain injuries (TBI). After mild TBI a majority of patients are recovering within days, weeks or at most, months (Paniak et al, 1998, Comper et al 2005). However, there are patients that report prolonged significant problems and disability and are in need for rehabilitation. They often report unspecific symptoms such as headache, tiredness, irritation, anxiety and memory problems (Röding, et al, 2003).The second largest group is patients with stroke. Even a stroke with apparently good recovery may affect activity performance, participation and overall function. Grading stroke severity is usually based on the level of physical impairment and ability in self-care, but even a mild stroke can imply difficulties in cognitive and emotional processing, whereas having no or limited movement disorders and being independent in self-care (Carlsson et al, 2009).Clinical experience has shown that the consequences in everyday life of mental fatigability, irritability, emotional instability and stress sensitivity are often underestimated (Carlsson et al, 2004).

The clinical definition of mild acquired cognitive impairment is in line with the Mild Traumatic Brain Injury Committee of the Head Injury Special Interest Group and American Congress of Rehabilitation Medicine (ACRM ):

• Minor motor dysfunction/no motor dysfunction
• Appear to function well in social situations occasionally requiring support
• May have a number of different cognitive disabilities, mostly within the area of attention, concentration and memory
• May have a number of concomitant emotional problems

(Ruff et al, 2009)

Self-awareness of disability

Self-awarenessthat is also referred to as insight or metacognition is the ability to recognize problems caused by impaired brain function(Crosson et al, 1989, Dirette, 2002).Disorders of self-awareness of disability are a complex phenomenon and manifest a wide variety of forms, from organically based and reflections of psychological coping. In this study the definition of disability of self-awareness lies on a psychologically level since one aim of the group rehabilitation that is evaluated is to enhance insight and motivation for change.

Lack of awareness of disability is common after ABI and like all neurological syndromes it can change over time. Previous studies have shown that decreased awareness has a negative effect on occupational performance and the outcome of rehabilitation (Ekstam et al, 2007, Lucas & Fleming, 2005, Trahan et al, 2006).

In the initial period after injury denial is an expected reaction. Gradually the individual becomes aware of abilities and disabilities through performing everyday occupations. By increasing the awareness, the individual can adapt in the performance of occupations more easily by using compensatory strategies and gradually incorporate conscious strategies as they develop new habits (Ekstam et al, 2007, Prigatano, 1999).

It has been shown that clients with better self-awareness of their impairments have better participation and performance in rehabilitation and their relatives show less strain than clients with less self-awareness of impairment. Clients with accurate self-awareness have also been found to enjoy more successful community and vocational reintegration (Lucas & Fleming, 2005).

Cognitive rehabilitation

Patients with ABI experience a wide range of different deficits, depending on the nature and location of their injury, which means that each individual ha a unique set of needs (Turner-Stokes et al, 2009).

In almost all occupational therapy models, cognition is considered to be one of the major performance components determining occupational performance (Averbuch & Katz, 1998).

Cognitive rehabilitation can be defined as a learning experience aimed at either restoring impaired higher cerebral functioning or improving performance in “the real world” using substitution or compensation techniques (Prigatano, 1999).

There are two major approaches of cognitive rehabilitation. They have been classified as restorative/remedial and compensatory/adaptive/functional. Remedialcognitive rehabilitation is based on the theory that repetitative exercises or new training can restore lost function. Compensatory/adaptive cognitive rehabilitation strives to develop internal substitutes and/or external assistance for dysfunction (Carney et al, 1999). In restorative rehabilitation, occupational therapy focus on the training of cognitive components and their generalisation across all activities, and in the compensatory rehabilitation the emphasis of occupational therapy is training functional and practical aspects of every day activities (Toglia, 1998b). In the first stages of a patient’s illness often a more remedial approach is preferred and as rehabilitation proceeds, the emphasis shifts to a more adaptive/compensatory approach. (Katz, 1998, Toglia,1998b). Cognitive retraining is also more frequently used in the rehabilitation of the more severely injured patients (Moore & Stambrook, 1995).

A common treatment in cognitive rehabilitation programmes is instruction in the use of compensatory strategies to improve performance in everyday life (Dirette, 2002). According to definitions used in the literature, strategies are considered as patterns of activities with a long term plan of action designed to achieve a particular goal in order to acquire some designated gain and are developed both consciously and unconsciously.Compensatory strategies are techniques that can be external or internal and are used by individuals with acquired brain injuries to circumvent a deficit caused by impaired brain function and they are related to everyday function(Dirette, 2002). Examples of strategies are diaries, calendars and check-lists. The use of compensatory training requires the client to acknowledge the existence of problems to select and use appropriate strategies to minimise their impact on everyday function. Therefore it is necessary for the client to develop an understanding or self-awareness of the nature of his or her dysfunctions (Fleming, et al, 2005).

For a long-term change to occur in therapy, patients must commit themselves to undertake a course of action for e.g. accomplishing a goal or fulfilling a role or establishing a new habit. The initial stage of change is exploration, which includes investigating new objects, doing things with altered capacity and trying out new ways of doing things. This is to be able to identify and locate new information, alternatives for action, new attitudes and feelings that provide solutions for and give meaning to occupational performance and participation. The process involves insight into something of which the client previously lacked awareness (Kielhofner Forsyth, 2008). Therapy must gear towards helping individuals make their own adjustment to their new reality (Prigatano, 1999). In addition to individual’s goals, it is recognised that metacognitive skills (which include self-awareness of post-injury impairments and strategy behaviours) impact upon rehabilitation outcomes and influence community reintegration and vocational success (Ownsworth et al, 2008).

Grouprehabilitationprogramme

Cognitive rehabilitation principles and strategies can be incorporated within group programmes and be combined with psychosocial or psychoeducational interventions. The group format can be used to target specific cognitive skills, or it can be used to teach compensatory strategies (Toglia et al, 2008).

The term “group” is often poorly defined in studies, but a common definition is that a group is more than one individual (Richard et al, 2008). Groups can provide a huge amount of advantages to the participants. Yalom (1995) identified 11 therapeutic factors, among others instillation of hope, universality, and development of social skills and cohesion with other members, that facilitate change in group members. Studies have shown that groups are effective in treating problems associated with interpersonal and cognitive behavioural impairments (Richard et al, 2008).The group format of cognitive rehabilitation has a number of benefits including improved accuracy of self-perception through reality testing and feedback from others. The ability to generalise skills to a realistic setting increases. Apart from the fact that the group setting provide a more economic staff-client ratio, the interaction with others with similar difficulties is beneficial in normalisation of fear reactions, social relationships and support networks can develop and increased likelihood of using techniques and skills (Thickpenny-Davies & Barker-Collo, 2007).

In groups, patients progressively learn more about their strengths and weaknesses (i.e., improved awareness), which can lead to choices that improve the patient’s mastery of certain skills and thereby give them greater control of their lives. This process is difficult since they then begin to face limitations and endures the suffering associated with brain injury (Prigatano, 1999).