Australian Occupational Therapy Journal (2014) 61, 446–457

doi: 10.1111/1440-1630.12149

Research Article

Occupational therapists’ use of advocacy in brain injury rehabilitation settings Donna King1 and Michael Curtin2 1 South West Brain Injury Rehabilitation Service, Albury, New South Wales, Australia and 2Occupational Therapy, School of Community Health, Charles Sturt University, Albury, New South Wales, Australia

Background/aim: Occupational therapists working in brain injury rehabilitation are required to use the skill of advocacy to ensure that people with a brain injury have the right to engage in their chosen occupations. However, no studies were found exploring the use of advocacy by occupational therapists working in brain injury rehabilitation. To investigate how occupational therapists working in brain injury rehabilitation defined and implemented the skill of advocacy when working with clients. Method: Interpretative phenomenological analysis was used to guide planning, data collection and analysis. Thirteen occupational therapists from six NSW metropolitan, regional and rural brain injury rehabilitation units participated in semi-structured interviews. All interviews were transcribed and member-checked prior to in-depth idiographic, inductive and interrogative analysis of each transcript. Findings: Participants identified the key elements of advocacy as the representation and education of clients and significant others. They indicated that all brain injury rehabilitation workers used advocacy when working with their clients, but were unable to identify unique ways that occupational therapists used advocacy when compared with other brain injury rehabilitation staff. However, they all felt that occupational therapists were well suited to advocate for clients in brain injury rehabilitation settings. Conclusion: Although participants had difficulty identifying unique ways in which occupational therapists used advocacy in brain injury rehabilitation settings, they all

Donna King MHlthSc, BHlthSc (OT); Occupational Therapist/Case Manager. Michael Curtin EdD, MPhil, BOccThy; A/Prof. Correspondence: Michael Curtin, A/Prof, Occupational Therapy, School of Community Health, Charles Sturt University, PO Box 789, Albury, NSW 2640, Australia. Email: [email protected] Accepted for publication 14 July 2014. © 2014 Occupational Therapy Australia

agreed that advocacy was an important skill for occupational therapists to develop and implement. KEY WORDS advocacy, brain injury, occupational therapy.

Introduction Rose, Cocks and Chenoweth (2010, p. 214) state ‘the concept of advocacy has primarily existed throughout recorded history as a concept in law, and is derived from the Latin advocare, which means to be called to stand beside.’ In their overview, these authors acknowledge that the focus of advocacy has changed over the centuries, moving away from a concept of guardianship to becoming more associated with notions of human rights. To assist with understanding advocacy and the various ways in which it can be defined, Rose et al. (2010) have proposed eight different types ranging from advocacy at an individual level to advocacy for groups and organisations and communities: legal, formal, citizen, self, peer, social, systems and individual. These eight types are briefly described in Table 1. For this paper, advocacy will be explored at the individual level in which a paid service provider advocates on behalf of a client. At an individual level, advocates have been described as people who represent other people, who empower other people to represent their own interests, and who advise other people on ways that they can have their own say (Huber, Nelson, Netting & Border, 2008; Rose et al., 2010). An advocate establishes a collaborative partnership with a person requiring advocacy, and works towards informing a third party of the person’s views, needs and wants, resulting in a clearer view for all parties (Townsend et al., 2007). This relationship can evolve informally or as specified within a formal job description. Within the health arena, advocates work to ensure that individuals with health or disabilities issues do not experience injustices as a result of these issues. The need for health professionals to advocate for their clients has been influenced by the way in which health

447

ADVOCACY IN BRAIN INJURY REHABILITATION

TABLE 1: Different types of advocacy Legal advocacy

Involves representation by legally qualified advocates, usually solicitors or lawyers

Formal advocacy

Sometimes called ‘professional advocacy’, usually refers to schemes run by voluntary groups employing salaried coordinators and paid staff A long-term, one-to-one partnership between user and advocate, usually as part of a coordinate scheme, with paid coordinator and volunteer partners A term used to describe people speaking out for themselves. ‘People first’ organisations are an example Defined as support from advocates who have themselves been service users Speaking, acting and writing with minimal conflict of interest on behalf of the sincerely perceived interests of a disadvantaged person or group to promote, protect and defend their welfare and justice by:

Citizen advocacy Self-advocacy Peer advocacy Social advocacy

● ● ●

Systems advocacy

Individual advocacy

Being on their side and no-one else’s; Being primarily concerned with their fundamental needs; and Remaining loyal and accountable to them in a way that is emphatic and vigorous and which is, or is like to be, costly to the advocate or advocacy group.

Primarily concerned with influencing and changing the system (legislation, policy and practice) in ways that will benefit disadvantaged groups, particularly disabled people as a group within society. Systems advocates will encourage changes to the law, government and service policies and community attitudes. Usually systems advocacy agencies do not engage with individual advocacy. To do so can cause conflicts around the use of resources, focus and purpose. However, individual advocacy will highlight systems failure thus informing system advocates of emerging or existing areas requiring systemic reform Refers to action taken to encourage and assist individuals with an impairment to achieve and maintain their rights as citizens and to achieve equity of access and participation in the community. Strategies may include speaking or standing up for the disabled person, supporting people to represent their own interests and making sure people know about the different ways they can have a say.

Reprinted with permission: Rose et al. (2010).

settings have viewed people with health and disability issues. According to Thibeault (2006), people with health and disability issues have been so thoroughly broken down into working components for the benefit of medicine, education and insurance that it is difficult to view the person as a whole. The focus on people’s medical conditions and deficit orientation has been detrimental to these people being accepted within society, resulting in discrimination and the breaching of their human rights (French & Swain, 2008). As a result, it has been argued that health professionals should take a more human rights approach when working with people with health and disability issues and enforce the human right of individuals to control their own life (French & Swain, 2008). According to Brisenden (1998), independence should not be equated to the number of physical tasks a person can complete, but should relate to a person having control and choice to live in the community, enlisting as many services as required, for a fulfilling life. It is proposed that occupational therapists, utilising the skill of advocacy, are well placed to assist people with health and disability issues to achieve this goal (Townsend et al., 2007).

According to Barbara and Curtin (2008), progression in the understanding of occupation within the profession since the 1980s has placed occupational therapists in a prime position to advocate for their clients’ empowerment and choice when considering participation in meaningful occupation. Townsend et al. (2007) included advocacy as one of the ten enablement skills intrinsic to the Canadian Model of Client-Centred Enablement (CMCE), along with the skills of adapt, coach, collaborate, consult, coordinate, design/build, educate, engage and specialise. According to Townsend et al., and supported by many other authors (Galheigo, 2011; Molineux & Baptiste, 2011; Paluch, Allen, McIntosh & Oke, 2011; Pollard, Kronenberg & Sakellariou, 2009; Rose et al., 2010), the skill of advocacy is essential in any interaction between occupational therapists and clients when working towards engagement in meaningful occupation. Although advocacy has been identified as a skill that occupational therapist use in practice, it is not clear how occupational therapists implement this skill. This was highlighted in a study of 13 Canadian occupational therapists who had indicated that advocacy was part of © 2014 Occupational Therapy Australia

448 their service provision (Dhillon, Wilkins, Law, Stewart & Tremblay, 2010). Although these therapists stated that they used advocacy in practice, they had difficulty identifying the skill set required to be an advocate. In spite of this, these occupational therapists considered advocacy to be an important part of their work role. Other researchers have confirmed that occupational therapists see advocacy as an important part of their work. In their study, investigating the professional values of occupational therapists, Aguilar, Stupans, Scutter and King (2012) noted that their 15 participants identified advocacy as an important aspect of occupational therapy knowledge, skills and practice. The participants indicated ‘that client advocacy could take place within the health system or within a client’s family and friendship circles’ (Aguilar et al., 2012, p. 213). The participants were also appreciative of ‘occupational therapists who advocated on behalf of the profession’ taking ‘action on issues that were of concern to the profession’ (Aguilar et al., 2012, p. 214). A few authors were specific about areas in which occupational therapists should be advocates. Lopez (2006) stated that occupational therapists should advocate for the right of older people to drive and participate in occupations of their choice to enhance quality of life, using the term occupational advocacy to describe the role of the therapist. Winkler and colleagues stressed the importance of occupational therapists, and other health-care workers, advocating for young people with a traumatic brain injury (TBI) who were inappropriately placed in aged care facilities in Australia (Winkler, Farnworth & Sloan, 2006; Winkler, Farnworth, Sloan & Brown, 2010; Winkler, Sloan, Callaway & Truscott, 2008). In spite of stressing the importance of advocacy as part of the work of occupational therapists, the findings from these studies did not provide a clear understanding of the types of advocacy occupational therapists should be involved in, the skill set required for advocacy, or the strategies needed to implement advocacy in practice. As suggested by Winkler and colleagues, a cohort of people who could benefit from occupational therapists being advocates are those who have cognitive impairments following a TBI. As the name suggests, a TBI is damage to the brain caused by an external physical force such as a motor vehicle accident, assault, or a fall (New South Wales Government, 2011). A TBI can occur at any age, and can result in long-term disabilities impacting on a person’s quality of life. The predominant deficits following TBI, in addition to any physical impairment, are the cognitive, behavioural and emotional impairments that may result in personality changes, decreased social awareness, lapses in memory and other socio-behavioural issues (Ponsford, 2013). Within rehabilitation environments, outcomes following a traumatic brain injury can vary depending on a number of related medical and/or social issues (Ponsford, © 2014 Occupational Therapy Australia

D. KING ET AL.

2013). These can include the severity of injury, complications post-injury, environmental influences (such as models of practice within health settings) and societal views on disability. The complexity and heterogeneity of TBI results in significant changes for people with a TBI and their families, and requires an extension beyond clinical interventions used by the team of professionals working with this client group to promote the person’s participation within their own community (Unsworth, 2010). Individual advocacy is one strategy beyond clinical interventions that may contribute to promoting successful community integration. Individual advocacy is required to ensure that a person experiencing a disability due to a TBI experiences the same right to engage in their chosen occupations as their able bodied counterparts. There have been studies conducted investigating outcomes following TBI focusing on community integration (Cornwell et al., 2009), participation and quality of life (Curtin et al., 2008; Duncan-Meyers & Huebner, 2000; Sloan, Winkler & Callaway, 2004; Winkler et al., 2006), and issues related to inappropriate placement of the young traumatically brain injured individual within aged care facilities (Foster, Fleming & Tilse, 2007; Winkler et al., 2006, 2008, 2010). The outcomes of these studies suggest that for many people who have a brain injury, the human right to engage in meaningful occupation have been contravened. Hence, the use of advocacy by occupational therapists (Townsend et al., 2007) would appear to be essential, to ensure that people who have had a TBI are awarded their human rights. A great deal of research has been completed focusing on the clinical management of people who have sustained a TBI. In contrast, very little research has focussed on strategies beyond clinical interventions, such as the advocacy needs of people with TBI and the advocacy role of the health professionals who work with these clients. In particular, in relation to occupational therapists working in the field of TBI, there is only a small number of studies identifying the understanding that occupational therapists have of advocacy and whether they feel advocacy can be included as an everyday practice skill when working with the complexities and challenges associated with brain injury rehabilitation. The aim of this study was to investigate the use of advocacy by experienced occupational therapists working in brain injury rehabilitation with clients who have a TBI.

Method This study received ethics approval from Charles Sturt University Human Research Ethics Committee and the relevant area health service human research ethics committees.

449

ADVOCACY IN BRAIN INJURY REHABILITATION

Research approach A qualitative research approach was selected as the most appropriate approach to address the research question as this type of research focuses on understanding the subjective experience of individuals (Finlay, 2011; Neuman, 2004). The exploratory nature of qualitative research enables the researcher to investigate the social, cultural, historical, linguistic and personal meanings and interpretations people give to their behaviour (Finlay, 2011; Liamputtong, 2013a). Although there are many qualitative research approaches that could be used to explore the use of advocacy by occupational therapists working in brain injury rehabilitation, a phenomenological approach was selected as this type of approach focuses on the experiences of the people participating in the research (Carpenter, 2010). Phenomenology provides participants with an opportunity to actively witness their experiences and provides the researcher with the personal and shared meaning of the phenomenon (Finlay, 2011). There are many different phenomenological approaches that could be used to address the research question. For the purposes of this study, an interpretative phenomenological analysis (IPA) approach was chosen as this approach is concerned with both the individual and shared nature of human experience, the uncovering of these, and the interpretation of the meaning of what is experienced; this approach focuses on how people make sense of their experiences (Smith, Flowers & Larkin, 2009). According to Smith et al. (2009), IPA allows the researcher to develop views on the topic in question as well as provides the researcher with the opportunity to enter the world of the participants, acknowledging the participants as the experts. The use of IPA is dependent on a ‘double hermeneutic’ or double interpretation, as the researcher makes sense of each participant, who is making sense of his/her own experience. As a result of the double hermeneutic Finlay (2011) states that the process of the IPA approach is iterative, inductive, fluid and emergent.

Participant recruitment All occupational therapists with a minimum of one-year experience working with either adults and/or children with TBI within the 14 NSW brain injury rehabilitation programme (BIRP) units were invited to participate in this study. This purposive sampling method was used to allow the selection of information-rich participants (Liamputtong, 2013b). The recommendation of a minimum of one-year experience ensured that participants had worked with a number of people with a TBI. The 14 BIRP units provide a state-wide specialist network catering for adults and children requiring inpatient, transitional and community-based support following a brain injury (New South Wales Agency for Clinical Innovations (ND)).

Research information packs were forwarded to the senior occupational therapist at each of the 14 BIRP units to distribute to department members. Each pack contained an invitation to participate letter, an information sheet outlining the study aim and background, and an expression of interest to participate form. Those interested in participating in the research were asked to return a completed expression of interest to participate form by a pre-determined date. Each occupational therapist who returned a completed form was contacted by telephone to provide further information about the study and to offer the opportunity for any questions they had to be answered. Occupational therapists who agreed to participate following this telephone conversation were forwarded a consent form with a request to sign and return. Once consent forms had been received, individual or group interview dates and times were arranged. Six of the 14 BIRP units participated in the research. One of the remaining BIRP units had no occupational therapist employed at the time of the study and the occupational therapist employed at one other programme did not meet the eligibility criteria of having worked for one year within the setting. From the six programmes represented, two programmes were classified as metropolitan, one as regional (servicing metropolitan and rural clients), and three as rural. Overall, 13 occupational therapists from the six BIRP units participated in the research.

Data collection tools Reflecting the principles of IPA proposed by Smith et al. (2009), a semi-structured interview format was used to guide the collection of data. Liamputtong (2013b, p. 53) defined a semi-structured interview as, ‘an interview with the purpose of obtaining descriptions of the life world of the interviewee with respect to interpreting the meaning of the described phenomena’. The loosely prepared questions were developed based on the literature and professional experience, and used as an aidememoire, allowing the researcher to focus on the narrative throughout the interview process (Finlay, 2011). The questions used to guide the interviews are listed in Table 2. Both individual interviews and group interviews were used to collect data. Commonly, research using an IPA approach uses individual semi-structured interviews as the data collection method. Individual interviews are ‘well suited to in-depth and personal discussion’ and enable the researcher to work with the participant in a ‘flexible collaboration, to identify and interpret the relevant meanings that are used to make sense of the topic’ (Reid, Flowers & Larkin, 2005, p. 22). Reid et al. (2005, p. 22) suggest that it is also possible to collect data using group interviews as long as there is recognition of the issues ‘involved in applying experiential analyses to more complex social activities’. In their overview of IPA, Larkin, Watts and Clifton (2006) also indicate that group © 2014 Occupational Therapy Australia

450 TABLE 2: Interview guide questions 1. What is your understanding of the term ‘advocacy’ and being an ‘advocate’? If asked to list three keywords that capture the meaning of advocacy, what would they be and why? 2. Is there a role for advocacy for BIRP workers and why? In a BIRP setting, what are some of the key issues that require advocacy by BIRP workers? Looking through the clients’ eyes, do you think they look upon the BIRP workers to advocate for them? Give an example(s) 3. Are there any elements of advocacy that you feel are unique to occupational therapy, in contrast with other professional bodies? 4. What facilitates your ability as an occupational therapist to advocate for your clients within a BIRP setting? What hinders your ability as an occupational therapist to work within an advocacy context within a BIRP setting? 5. Please describe a couple of key examples of how you have worked as an advocate in the BIRP setting? 6. What proportion of your work role within your BIRP setting, would you consider to be advocating for your clients? 7. What extra training/resources do you feel are required to develop your advocacy skills?

D. KING ET AL.

worked with adults. Three of the latter group had past experience working with children or were currently receiving occasional referrals for clients who were children. The years of experience working within a BIRP setting ranged from two years to 21 years, with an average of 7.2 years. All 13 participants were female. Eight of the participants worked in the community rehabilitation, four worked in inpatient rehabilitation, and one worked in both areas of rehabilitation. Each participant was allocated a pseudonym to prevent disclosing identifying information. A summary of the demographic information of the participants is contained in Table 3. A complete transcript and a summary of the transcript were sent to each participant for comment, clarification and confirmation as a form of member checking. Participants in a group interview were sent a full transcript and summary of the group interview in which they participated. Member checking provides an opportunity for the participants to comment on and contribute to the data analysis process, and is a way of confirming whether the data analysis is congruent with the participants’ experiences (Curtin & Fossey, 2007). All participants replied indicating that they agreed that their respective transcript was accurate and that the summary was a good representation of the key issues raised in their interviews.

Data analysis interviews are one of the accepted ways of capturing the accounts of participants, along with individual interviews and diaries. When reviewing IPA use in health psychology, Brocki and Wearden (2006) found that as long as the population from which participants were drawn was homogenous, that participants had intimate knowledge of the research topic, and that the group interviews were well moderated to ensure participation by all members, then data gathered from group interviews could be combined with data gathered from individual interviews. They also suggest that group interviews are suitable when the topic being discussed is more neutral, and give the example of the topic of service provision, rather than topics of a more personal nature.

Data collection Eight interviews in total were conducted with the 13 occupational therapists. The interviews lasted between 60 to 90 minutes. Each interview was audio-recorded and then transcribed verbatim. Five of the participants were interviewed individually, two of the interviews were conducted with two participants, and one of the interviews was conducted with four participants. Three interviews were conducted face-to-face, four via teleconference, and one via videoconference. Reflexive field notes were used to assist with processing what the participants were saying and analysing the transcripts (Finlay, 2011). Of the 13 occupational therapists interviewed for this study, three worked solely with children and ten © 2014 Occupational Therapy Australia

The method of analysis used in this study followed the IPA guidelines described by Smith et al. (2009). Once the member checking was completed, each transcript was read and re-read many times, and notes made in the right margin. These notes consisted of descriptive, linguistic and conceptual comments and summaries of the numerous statements made by the participant. These notes enabled a more in-depth understanding of what each participant was saying. Once these notes were completed numerous emerging themes loosely drawing together notes and comments that covered similar issues were noted in the left hand margin. Each transcript was read and analysed without reference to the other transcripts. This allowed for each transcript to be analysed without re-enforcing predetermined themes on latter transcripts. Once all the transcripts were analysed then the emerging themes from each of the transcripts were compared to look for patterns and connections across all the transcripts, facilitating a deeper level of interpretation. This lead to the development of two super-ordinate themes, in which related themes within and between each transcript were drawn together.

Findings Two super-ordinate themes emerged from the analysis of the participants’ interviews: Theme 1: ‘Not an if, it’s a must’: advocacy is a skill used by all BIRP workers focuses

451

ADVOCACY IN BRAIN INJURY REHABILITATION

TABLE 3: Participants’ demographics

Interview no. 1 2 3 4 5 6 7

8

Pseudonym

Client group

Type of rehabilitation

Location of BIRP

Approx. years of practice in BIRP

Louise Debbie Samantha Veronica Esther Grace Sally Elizabeth Lucy Helen Anna Maree Sophie

Children Adult/with past children Adult/with past children Adult/occasional Children Adult Adult Children Children Adult Adult Adult Adult Adult

Community Community Community Community Community Community Community Community Inpatient Inpatient Inpatient Inpatient Inpatient/community

Rural Rural Rural Rural Rural Rural Rural Rural Metropolitan Metropolitan Metropolitan Metropolitan Regional

14 12.5/1.5 6/1 6 21 7.5 4.5 2 5 4.5 6 2 9

on the impact of the culture of the brain injury setting on the use of advocacy by staff; and Theme 2: ‘Going in to bat’: essential characteristics of advocacy in brain injury rehabilitation focuses on essential characteristics of advocacy within the context of a brain injury setting.

eligibility criteria. For example, participants who worked with children reflected on the unclear funding pathways for children following a TBI compared to funding availability for children with physical or intellectual disabilities:

Theme 1: ‘Not an if, it’s a must’: Advocacy is a Skill Used by all BIRP Workers This theme evolved from the participants indicating that the use of advocacy within the BIRP settings was vital, and a skill used by all BIRP workers. Louise stated that she did not, ‘think it’s an if, I think it’s a must. I think that it is inherent in our role, but I don’t know that it’s in my job description.’ Staff working in a BIRP setting naturally became advocates for clients because of the culture of the workplace and the opportunities for developing rapport between staff and clients: I think because we are a rehab team and [clients] spend a lot of time with us, I think they get to know us quite well and feel quite comfortable to ask for help. We do have families that ask for help and some families that just ask to be guided by us. It depends on the patient. Some patients who are with us longer tend to be more comfortable with the team advocating for them. (Sally)

All participants commented on interventions where advocacy was required. With the exception of core occupational therapy interventions such as home modifications, wheelchair prescription, and activities of daily living re-training, the most frequently reported intervention that required advocacy was addressing a client’s eligibility criteria for funding and insurance purposes. Several participants referred to the inequity of funding pathways where clients with a TBI failed to meet the

I think one of the biggest challenges for our kids is they look too good, they are in systems that the eligibility criteria for support don’t capture our kids and so they have needs that need to be fought for but they don’t necessarily have the access or the capability to do it for themselves. (Louise)

It was suggested that the eligibility criteria and costs of insurance companies and funding bodies associated with rehabilitation were limiting and restrictive, and displayed a lack of understanding of the impact of TBI on a person’s lifestyle. As an example, Veronica identified that it was difficult to receive funding to support a client’s participation in leisure activities: I think for the compensable clients you are always looking at what is reasonable and necessary and trying to access services for them and what is the most appropriate service and if I think that they need some more leisure involvement, it can be quite tricky on how to justify it as reasonable and necessary. How am I going to help this person, how am I going to advocate for them and to let [Lifetime Care and Support Authority1] know that

1

Lifetime Care and Support Authority is a NSW government agency that funds and ‘provides treatment, rehabilitation, and care services to people severely injured in motor accidents in NSW, regardless of who was at fault in the accident’ (New South Wales Government, n.d., home page) © 2014 Occupational Therapy Australia

452

D. KING ET AL.

they need more social outings? They need more socially appropriate relationships, which is a big area of need for clients who have sustained a brain injury.

The participants indicated that all BIRP workers advocated for their clients and that no specific professional group was better trained or suited to be advocates. Participants described frequently working in two and sometimes three clinical roles, such as an occupational therapist in conjunction with being a case manager and/or a rehabilitation coordinator. They also indicated that advocacy was integral to any of their work roles with statements such as, ‘I don’t know where it begins and where it ends,’ (Louise) and ‘Case management is so intertwined with advocacy’ (Veronica). As a result, they had difficulty differentiating when advocacy was occurring in their occupational therapy role as compared to their other work roles. It kind of blurs quite a bit because not only are you rehabilitation coordinating for that client, you don’t only rehab coordinate in isolation. You sometimes do have that therapy role directly for that client as well. (Grace)

When asked if occupational therapists were better placed in a BIRP setting to provide advocacy than their professional counterparts, none of the participants felt they were any better skilled at advocacy than their colleagues. Anna summed this up when she said: I think [occupational therapists] get lumped with a lot more responsibility at times. We tend to be the people who have a wider range of things that we approach and advocate for. But I don’t necessarily think that we are any better than other professions.

The participants did suggest that the holistic and client-centred approach of occupational therapy did enable them to be advocates. As Samantha suggested: Well right from the word go in our training we [occupational therapists] are taught to explore people’s lives holistically, right from the beginning. Some other professionals develop that as they go along. But right from the outset that is our role to look at a person’s situation holistically.

However, they all agreed that they did not feel that they had a solid skills base in relation to working as an advocate. They reported that they had minimal if any specific training in advocacy at an undergraduate level and felt that their skill in advocating was a result of learning on the job. As a result, some of the participants recommended that further training in advocacy should be provided for staff to maximise their skill and effectiveness when implementing this strategy. © 2014 Occupational Therapy Australia

Theme 2: ‘Going in to bat’: Essential characteristics of advocacy in brain injury rehabilitation This theme, ‘Going in to bat’ focuses on the participants’ willingness to ensure the needs and wants of clients with a TBI were met based on their knowledge of brain injury and the services they required to assist with rehabilitation. To go into bat for a client, the participants felt that they had to base their decision on sound professional reasoning skills. As Elizabeth stated: So it’s not just blindly leading them wherever they want to go, but finding that balance of the best place clinically for them but also looking at where they want to be, where they need to be, and trying to match that up.

This theme captures the language used by the participants to define advocacy within a brain injury setting. Despite the study comprising 13 participants, only ten definitions are provided. This is because within two of the group interviews not all participants provided a definition; in one group interview Elizabeth provided a definition on behalf of Sally and herself, and in the other group interview Helen and Lucy provided definitions while Anna and Maree did not. On these occasions, the participant who verbalised the definition is listed against the corresponding definition. These definitions are listed in Table 4. The terms ‘represent’ and ‘educate’, or variations of these words, were consistently used in these definitions and as a result these terms became sub-themes.

Sub-theme 1.1: Represent Represent, and the various derivatives of the term, including representation and representative, were common terms used by participants when discussing advocacy. Participants also referenced the term represent in phrases such as ‘supporting the client’, ‘being a voice’, ‘risk-taking’, ‘seeking best treatment possible’ and ‘influencing some form of change’. When using the term represent participants referred to the client having the right to have their personal needs and aspirations acknowledged within a supportive framework, with the overall intention being to assist a negotiated outcome reflecting clients’ goals. This was illustrated when Sally stated: Even if it is something that I don’t think is in the child’s best interest, as long as it’s not damaging to them, or pulling them back. If it is something that they desperately want to do, I think I would also still be working towards that if it’s not to their detriment.

Participants indicated that as BIRP workers they were best placed to advocate for their clients. Having worked

453

ADVOCACY IN BRAIN INJURY REHABILITATION

TABLE 4: Ten definitions of advocacy Participant

Definition of advocacy

Louise

I think of advocacy as, the words aren’t going to be quite right but anyway, representing someone, standing in for them, being their voice when they need it, representing their needs Well for me one of the first things I think of when I think of advocacy is the element of allowing someone to have a go, to take a risk. I always think of risk taking as something that sometimes people need an advocate for. The ethical consideration of being able to take a risk, to do something that they want to do but everyone else feels is not in their best interests Standing up for the client and supporting them to stand up for themselves, or speaking on their behalf to ensure that they are given a go, or ensure that their voice is heard, ensuring that their best interests are being looked at rather than ‘sorry, we don’t do that or sorry this is not going to work for us’ or whatever I feel that it is helping someone get the best treatment possible; ensuring their access to services is fair and equitable; educating services about different clients and what it means to have a brain injury because sometimes services hear that a person has a brain injury and think oh goodness and they get a bit scared and might not want to help particularly if it is more mainstream services as opposed to specialised services. Speaking out for clients when they need it; and assisting someone with access to those services I guess that it’s having input or putting forward opinions or beliefs to try and change something. Or to help decisions be made. I suppose in a legal setting it is more persuading but I see it as trying to influence some sort of change or outcome Being a voice on behalf of someone else, so maybe someone who can’t for themselves by supporting them on their interests or values or what they want. And, then looking at communicating what their needs are to others. I think overall having a good relationship with somebody. Going in to bat for them I guess To me one of the key things would be representation, so representing someone’s needs or wants. I think there are also very important aspects of clinical reasoning that Sally alluded to before that obviously we wouldn’t be going against what would be deemed in the child’s best interests. So it’s not blindly leading them wherever they want to go, but finding that balance of the best place clinically for them but also looking at where they want to be, where they need to be and trying to match them up I think it’s patient-centred, so it is understanding what the individual wants or needs and helping to advocate for them to (advocate is probably not a very good word), but educating them on how they can go about doing whatever they need to do It’s also our ability to be somewhat of a representative for our clients. It’s really hard not to say advocate, but represent their needs and point that out to the people who will be able to make some change I guess Supporting the client with their needs and views through their therapy by enabling methods for them to advocate for themselves. Strengthening their views and needs that they wish to communicate about with further education and assistance. Communication when required I will speak or write for the person if they are unable to

Samantha

Debbie

Veronica

Esther

Grace

Elizabeth

Helen

Lucy Sophie

in the brain injury field for a period of time participants felt that they held specialist knowledge and were able to provide an understanding of brain injury and the future needs of clients. This perceived expertise coupled with the ability to separate themselves from the complexity of the situation were seen as vital for advocating on behalf of their clients.

Sub-theme 1.2: Education The provision of education was generally aimed at pursuing positive change, and was made up of two elements. The first was the necessity to provide support and information directly to the client, with an overall goal of teaching the client skills required to be able to self-advo-

cate. The second element reflected a need to impart knowledge to other people involved with the client. Element 1.2.1: Strategies to enhance self-advocacy. The participants identified instances where they implemented and taught strategies that contributed to clients becoming more independent in advocating for themselves. Debbie acknowledged the role that she played in working towards a client being able to self-advocate: So rather than me talking for her I tried to structure it so that she was clear in thoughts so she was able to advocate for herself. So did I advocate for her to advocate for herself? Maybe that’s what I did.

© 2014 Occupational Therapy Australia

454

D. KING ET AL.

The occasions when clients start to self-advocate was described by Louise as ‘the epitome, when you can start to see them talking for themselves and you don’t have to.’ Participants talked of using scripts as a common form of education as a means of enhancing confidence and empowering their clients, both adult and children. Louise provided the example of a written script that a child could use to provide relevant information to a teacher. Framed as a ‘What does my new teacher need to know about me?’ script, the child and therapist worked together to document relevant information that would assist ongoing needs, with the child as the main driver. Another example of strategies to enhance self-advocacy skills was the use of visual recordings of an individual discussing his or her personal needs, which could then be used to inform others of these needs. Element 1.2.2: Educating other people. Participants also saw provision of information to a range of audiences including family, carers, service providers and the community in general of the needs and abilities of their clients, to promote social inclusion, as part of their advocacy role. This type of education was considered to be ‘part of the BIRP’s mantra [to] educate other services about brain injury; we educate what the expectations are that they can have of a person who has sustained a brain injury’ (Veronica). When explaining the role of education of other people, terms such as ‘justification’ and ‘knowledge’ were used. For example, participants often found themselves supporting their clients by providing justification to insurers and other funders as to why their clients should be eligible for various services and support: Justifying why we are requiring further services I suppose as well. Providing further education to the third parties, that can give them examples of why this client needs this extra service or things like that. Lifetime Care and Support Authority is quite difficult to advocate to. They are quite resistant at times, so giving them as much information as possible for the new setting. (Anna)

Participants also found that they had to advocate for clients to explain to others why the clients behaved in particular ways. Debbie stated that she did this to explain to others that clients were doing something the way they were doing it because of the impact of the brain injury. The occupational therapists considered advocacy to mean that they had to represent a client, and educate the client and other people about life with a brain injury. The phrase ‘Going in to bat’ implied that therapists, with sound professional reasoning skills that reflected their knowledge of brain injury and its sequelae, would be well placed to assist clients to strive towards achieving their goals.

© 2014 Occupational Therapy Australia

Discussion In relation to the use of the advocacy by occupational therapists working in BIRP units, the findings from this study suggest three outcomes: 1. All BIRP workers are individual advocates when working with their clients and no one discipline is necessarily better placed to be an advocate; however, occupational therapists are well placed to be advocates due to the holistic and client-centred nature of the profession; 2. More training is required to enable occupational therapists working in BIRP units to be more confident in advocating for their clients; and 3. The essential characteristics of advocacy within the brain injury rehabilitation setting were representation of their clients, and educating their clients and significant others.

All BIRP workers are advocates The occupational therapists participating in this study indicated that individual advocacy was an important skill that all BIRP workers must develop because the cognitive, behavioural and social impairments following a TBI meant that the client group they worked with required all workers to be their advocates. A brain injury results in significant changes for people with a TBI and their families (Ponsford, 2013) that requires more than clinical interventions to enable people with a TBI to re-integrate back into their community (Unsworth et al., 2010). Advocacy is considered one strategy in addition to clinical interventions that enables successful community re-integration. Furthermore, it is common in BIRP units for the role of staff to be blurred and/or for staff to take on multiple roles. Mitsch (2011) indicated that workers in BIRP units often take on many roles due to the community rehabilitation and case management foci of these settings. This was confirmed in this study as the participants indicated that they assumed multiple roles in their work. They felt that their roles were blurred, and as a result were unable to distinguish which role specifically related to being an advocate. This is perhaps another reason why participants felt that all BIRP workers were advocates, as they felt that advocacy was part of each role they engaged in. The multiple and blurred roles would also make it difficult to identify what is unique about advocacy delivered by occupational therapists. It would seem, at least in a BIRP setting, that occupational therapists did not offer a unique perspective on advocacy, as advocacy is an important aspect of the role of all BIRP workers. It is suggested that all BIRP workers are able to represent clients, and educate clients and significant others, due to their brain injury knowledge, their sound clinical reasoning skills and their ability to maintain a professional distance from the client.

455

ADVOCACY IN BRAIN INJURY REHABILITATION

More training required The participants appeared to be comfortable with the fact that all workers should be individual advocates, and the different workers may advocate about different things depending on their experience. The participants indicated that as occupational therapists they tended to advocate on things such as home modifications, equipment prescription, and activities of daily living retraining. They also indicated that they focussed a lot on advocating for clients to ensure that they received appropriate funding from Lifetime Care and Support and/or insurance agencies to enable clients to participate in the preferred activities. Although the participants stated that all BIRP workers were advocates, they did indicate that their holistic and client-centred practice as occupational therapists made them well placed to be advocates. They saw advocacy as a key part of their role. This sits well with previous research by Aguilar et al. (2012), Dhillon et al. (2010), Lopez (2006), and Winkler et al. (2006, 2008, 2010) who stressed the importance of occupational therapists being advocates but did not identify how to be advocates or what was unique about advocacy provided by occupational therapists. However, the participants felt that they required more training to enhance their ability to be advocates. They appeared to be asking for more general training on advocacy rather than occupational therapy specific training. Perhaps this is because the skills of advocacy are general, and these can be delivered in a way that is relevant to each discipline.

Characteristics of advocacy The participants identified two key elements of advocacy in their work: representation and education. Being an advocate required representing the client and educating the client and other people about TBI. This finding supports the identification by Rose et al. (2010) that representation, empowerment, and information are key elements of advocacy. These elements are considered essential to being an advocate, as implementing these elements can assist people with TBI to develop selfadvocacy skills, and provide a greater awareness and understanding of the needs and wants of people with TBI by other people and organisations involved in their lives. Referring back to the expressed need for more training, perhaps training focussed on how to effectively implement these elements of advocacy would be a key place to start as a way of enhancing the advocacy skills of occupational therapists.

Limitations and recommendations Although all of the 14 NSW BIRP units were invited to participate in this study, only six services were represented. Even though there was representation from occupational therapists who worked with children and adults,

and who worked in rural, regional, and metropolitan locations, fewer than half of the units across the state were represented. It is possible that occupational therapists at the other BIRP units may have different views about advocacy based on their experiences, and may offer different insights into this skill. The fact that most of the participants worked in community rehabilitation and in regional areas may also be a limitation. It is likely that there are factors that would impact on the implementation of advocacy strategies depending on the work place and the type of rehabilitation service provided. However, these were factors were not identified in this study. Further research would be beneficial to include the other BIRP units to ensure that views from all settings are taken into account, and to investigate in more detail the workplace factors that impact on implementing advocacy strategies. Given the finding that advocacy was a skill that all BIRP workers use it is recommended that further research be conducted to investigate the use of advocacy in BIRP settings from the point of view of workers from different disciplines. This would provide a greater depth of understanding of the use of advocacy in these settings, and may even identify potential differences between professional groups. In addition, investigating the importance of BIRP worker advocacy from the perspective of clients and their families would add to understanding the relevance of this skill for people who have had a TBI.

Conclusion When working with clients who have a TBI in a BIRP setting, advocacy was noted to be a core skill of all BIRP workers due to the complex needs of the clients, the inter-disciplinary nature of the work, and the multiple work roles of the staff. In advocating for clients, workers were representing the clients to ensure their needs and wants were met, educating clients to develop self-advocacy skills, and educating others about the needs of clients. The use of a team approach, with all members being involved in advocacy, was reported to result in appropriate outcomes. Although the focus of this research was on occupational therapists’ perceptions about their use of advocacy in a brain injury setting, no unique occupational therapy skills in relation to advocacy were identified. As advocacy is listed as a key enablement skill of the profession, more research needs to be conducted to identify if there is a unique contribution occupational therapists can offer when advocating for their clients, or perhaps more importantly, more education and training is required to ensure that occupational therapists develop competent skills in advocacy.

References Aguilar, A., Stupans, I., Scutter, S. & King, S. (2012). Exploring professionalism: The professional values of © 2014 Occupational Therapy Australia

456 Australian occupational therapists. Australian Occupational Therapy Journal, 59, 209–217. Barbara, A. & Curtin, M. (2008). Gatekeepers or advocates? Occupational therapists and equipment funding schemes. Australian Occupational Therapy Journal, 55, 57–60. Brisenden, S. (1998). Independent living and the medical model of disability. In: T. Shakespeare (Ed.), The disability reader: Social science perspective (pp. 20–27). London: Cassell. Brocki, J. & Wearden, A. (2006). A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychology and Health, 21, 87–108. Carpenter, C. (2010). Phenomenology and rehabilitation research. In: P. Liamputtong (Ed.), Research methods in health: Foundations for evidence-based practice. Australia: Oxford University Press. Cornwell, P., Fleming, J., Fisher, A., Kendall, M., Ownsworth, T. & Turner, B. (2009). Supporting the needs of young adults with acquired brain injury during transition from hospital to home: The Queensland service provider perspective. Brain Impairment, 10, 325–340. Curtin, M. & Fossey, E. (2007). Appraising the trustworthiness of qualitative studies: Guidelines for occupational therapists. Australian Occupational Therapy Journal, 54, 88– 94. Curtin, M., Jones, J., Mitsch, V., Alston, M., McAllister, L., Ginnivan, D., Salman, L., Winkworth, A., Neumayer, B. & Trevethan, R. (2008). Participation following traumatic brain injury for people residing in rural and regional areas NSW. Unpublished report. Albury: Charles Sturt University. Dhillon, S., Wilkins, S., Law, M., Stewart, D. & Tremblay, M. (2010). Advocacy in occupational therapy: Exploring clinicians’ reasons and experiences of advocacy. Canadian Journal of Occupational Therapy, 77, 241–248. Duncan-Meyers, A. & Huebner, R. (2000). Relationship between choice and quality of life among residents in long-term-care facilities. The American Journal of Occupational Therapy, 54, 504–508. Finlay, L. (2011). Phenomenology for therapists: Researching the lived world. Oxford: Wiley-Blackwell. Foster, M., Fleming, J. & Tilse, C. (2007). Council of Australian Governments’ (COAG) initiative for young people with disability in residential aged care: What are the issues for acquired brain injury? Brain Impairment, 8, 312–322. French, S. & Swain, J. (2008). Understanding disability: A guide for health professionals. Philadelphia, PA: Churchill Livingstone. Galheigo, S. (2011). What needs to be done? Occupational therapy responsibilities and challenges regarding human rights. Australian Occupational Therapy Journal, 58, 60–66. Huber, R., Nelson, H., Netting, F. & Border, K. (2008). Elder advocacy: Essential knowledge and skills. Belmont, CA: Thompson, Brooks/Cole. Larkin, M., Watts, S. & Clifton, E. (2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3, 102–120. Liamputtong, P. (2013a). The science of words and the science of numbers: Research methods as foundations for

© 2014 Occupational Therapy Australia

D. KING ET AL.

evidence-based practice in health. In: P. Liamputtong (Ed.), Research methods in health: Foundations for evidencebased practice (2nd ed., pp. 1–22). Australia: Oxford University Press. Liamputtong, P. (2013b). Qualitative research methods (4th ed.). Melbourne: Oxford University Press. Lopez, A. (2006). Occupational advocacy and therapeutic justice for the older driver. [Electronic version]. OT Practice, 11, CE1–CE7. Mitsch, V. (2011). Acquired brain injury rehabilitation service delivery project: Developing a model of care for rural and remote NSW. Chatswood: Agency for Clinical Innovations. Molineux, M. & Baptiste, S. (2011). Emerging occupational therapy practice: Building on the foundations and seizing the opportunities. In: M. Thew, M. M. Edwards, S. Baptiste & M. Molineux (Eds.), Role emerging occupational therapy: Maximising occupation focussed practice (pp. 3–14). West Sussex, UK: Blackwell Publishing Ltd. Neuman, W. L. (2004). Basics of social research: Qualitative and quantitative approaches. Boston, MA: Pearson Education Inc. New South Wales Agency for Clinical Innovations (ND). NSW brain injury rehabilitation program. Retrieved 14 August, 2014, from http://www.aci.health.nsw.gov.au/ networks/brain-injury-rehabilitation#People New South Wales Government. (2011). Care and Support Pathways for People with an Acquired Brain Injury: Referral and Service Options in NSW. Retrieved 23 October, 2013, from http://www.adhc.nsw.gov.au/data/ assets/file/0007/237751/ADHC-ABIPathways-R10.pdf New South Wales Government (n.d.). Lifetime care and support authority. Retrieved 23 October, 2013, from http://www.lifetimecare.nsw.gov.au Paluch, T., Allen, R., McIntosh, K. & Oke, L. (2011). Koori occupational therapy scheme: Contributing to first Australian health through professional reflection, advocacy and action. Australian Occupational Therapy Journal, 58, 50–53. Pollard, N., Kronenberg, F. & Sakellariou, D. (2009). A political practice of occupational therapy. In: N. Pollard, D. Sakellariou, F. Kronenberg & H. van Bruggen (Eds.), A political practice of occupational therapy (pp. 3–19). Edinburgh: Churchill Livingstone. Ponsford, J. (2013). Working with families. In: J. Ponsford, S. Sloan & P. Snow (Eds.), Traumatic brain injury: Rehabilitation for everyday adaptive living (2nd ed., pp. 263–291). London: Psychology Press. Reid, K., Flowers, P. & Larkin, M. (2005). Exploring lived experience. Psychologist, 18, 20–23. Rose, V., Cocks, K. & Chenoweth, L. (2010). Advocating and lobbying. In: M. Curtin, M. Molineux & J. Supyk-Mellson (Eds.), Occupational therapy and physical dysfunction: Enabling occupation (6th ed., pp. 211–220). London: Churchill Livingstone. Sloan, S., Winkler, D. & Callaway, L. (2004). Community integration following severe traumatic brain injury: Outcomes and best practice. Brain Injury, 5, 12–29. Smith, J., Flowers, P. & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. Los Angeles, CA: Sage.

ADVOCACY IN BRAIN INJURY REHABILITATION

Thibeault, R. (2006). Globalisation, universities and the future of occupational therapy: Dispatches for the majority world. Australian Occupational Therapy Journal, 53, 159–165. Townsend, E., Beagan, B., Kumas-Tan, Z., Versnel, J., Iwama, M., Landry, J. et al. (2007). Enabling: Occupational therapy’s core competency. In: E. Townsend & H. Polatajko (Eds.), Enabling occupation II: Advancing occupational therapy vision for health, well- being, & justice through occupation (pp. 87–133). Ottawa: Canadian Association of Occupational Therapists. Unsworth (2010). Cognitive and perceptual strategies. In: M. Curtin, M. Molineux & J. Supyk-Mellson (Eds.), Occupational therapy and physical dysfunction: Enabling occupa-

457 tion (6th ed., pp. 607–636). London: Churchill Livingstone. Winkler, D., Farnworth, L. & Sloan, S. (2006). People under 60 living in aged care facilities in Victoria. Australian Health Review, 30, 100–108. Winkler, D., Sloan, S., Callaway, L. & Truscott, C. (2008). Younger people in residential aged care in Tasmania: Characteristics, support needs and preferences.Blackburn: Tasmanian Government Department of Health and Human Services, Summer Foundation Ltd. Winkler, D., Farnworth, L., Sloan, S. & Brown, B. (2010). Getting out: Mid-term evaluation of the National Younger People in Residential Aged Care Program. Melbourne: Summer Foundation Ltd.

© 2014 Occupational Therapy Australia

Copyright of Australian Occupational Therapy Journal is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.