http://tandfonline.com/ibij ISSN: 0269-9052 (print), 1362-301X (electronic) Brain Inj, 2015; 29(9): 1082–1093 ! 2015 Taylor & Francis Group, LLC. DOI: 10.3109/02699052.2015.1018323

Caregivers’ support needs and factors promoting resiliency after brain injury Bryony Kitter & Rachael Sharman School of Social Sciences, The University of the Sunshine Coast, Queensland, Australia

Abstract

Keywords

Aim: This article explores the challenges, support needs and coping strategies of caregivers of people with an acquired brain injury (ABI). Method: Semi-structured interviews were conducted with caregivers (n ¼ 20) to explore their support services received, access barriers, utility of services, needed supports, coping strategies and factors promoting life satisfaction. The team recorded, transcribed verbatim and inductively analysed all interviews. Results: Through thematic data analysis, three central themes were revealed: (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. All perspectives from the participants involved are synthesized to provide a rich depiction of caregivers’ support needs and coping strategies. Conclusions: Two specific findings of interest include a negative association between severity of brain injury and caregiver’s desire to direct treatment, as well as a distinct service gap in assistance for caregivers who are caring for someone with violent/offending behaviours. This study recommends short- and long-term changes, given Australia’s upcoming National Disability Insurance Scheme, to increase caregiver quality-of-life, which will ultimately affect the rehabilitation outcomes of persons with ABI.

Acquired brain injury, caregivers, service providers, semi-structured interviews

Introduction In Australia, around one in 45 people have an acquired brain injury (ABI), with some form of active limitation due to disability [1]. Rehabilitation for ABI in Australia typically follows four stages spanning the lifetime [2]: Acute care (neurosurgery), post-acute care, community-based rehabilitation and longer-term community support. The period within the first 6 months after injury is often associated with rapid spontaneous recovery, predominately of physical function, followed by cognitive recovery within 12 months and behavioural recovery up to 2 years post-injury [3]. However, survivors of brain injury often suffer from permanent difficulties in all areas of their lives [2, 4, 5]. This poses a challenge because previously patients have claimed that the majority of their needs were met during the early rehabilitation services; however, once the survivors returned homes, services and support tapered off [6]. This is a growing area of concern for the healthcare system, especially if the current system does not meet the ongoing long-term needs of individuals with ABI. Living arrangements Once released from hospital, the care needs of the individual with ABI often falls informally onto their parents or spouse. Correspondence: Dr. Rachael Sharman, School of Social Sciences, The University of the Sunshine Coast, ML 32 Maroochydore DC, QLD 4558, Australia. E-mail: [email protected]

History Received 23 April 2014 Revised 18 November 2014 Accepted 9 February 2015 Published online 8 May 2015

In Australia, 97% of people under 65 years with an ABI live in households, where 3% live in cared accommodation. Currently, 18.5% of people with an ABI are living in a household with a co-resident primary caregiver [1]. Informal caregivers make a significant economic and social contribution to their community by taking on the bulk of caregiving responsibilities [7], as it is estimated to cost at least AU$30.5 billion per annum if primary care was provided in a formal service setting [8]. This substantial contribution by caregivers comes at a personal cost as the role provides limited opportunity to participate in the workforce and social networks [7]. Caregivers exceed the typical amount of time a person with full time employment spends at their work, by caring for the individual with ABI [9]. Unsurprisingly, this excessive amount of time spent caring impedes employment opportunities, significantly reduces yearly income [10] and impacts the caregiver’s social network [11]. Impact on carers The physical, cognitive, behavioural and emotional changes that occur with a brain injury can all place significant demands on the caregiver [3, 12, 13]. Numerous issues, including depression, distress, anxiety, family strain, social isolation, emotional difficulties, loss of income and adjustment problems have been well-documented in studies of carers of people with an ABI [12, 14–22]. Large numbers of caregivers develop significant emotional distress equivalent to a level consistent with a psychiatric diagnosis [13], which

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often develops into notable increases in substance and medication use [18] and have worse carer burden, qualityof-life and mental health than carers of dementia [23]. The most frequent behavioural disturbances of persons with an ABI such as impulsiveness, mood changes, irritability, forgetfulness, fatigue, anxiety and temper outbursts create high amounts of strain for caregivers [13, 18]. Caregiver strain impacts upon the recovery progress of survivors of brain injury. Survivors of brain injury whose home environment are characterized by unhealthy relationships, unhealthy communication and being unsupportive show less improvement on disability rating, level of functioning and employability scores [24]. Additionally, research has found that distressed caregivers can diminish the effectiveness of post-acute rehabilitation for their loved ones recovery [25]. The results of the study found that improved caregiver emotional functioning is conducive to greater social integration and productivity outcomes after the rehabilitation programme for persons with TBI. However, the negative impact was only found for persons who entered into the programme within 6 months of the TBI. Furthermore, research has found that caregivers who report unhealthy family functioning, increased emotional distress and who report low pre-injury social support place their injured loved ones at risk of poor community integration 1 year postinjury [26]. This underscores the importance of good family functioning, even amidst behavioural disturbances, which can last a lifetime [4, 5]. Support and service needs of caregivers Reports in the literature indicate that highly ranked needs of caregivers include; emotional and financial support, counselling and education, support groups, respite care, day care programmes for physical and psychosociocultural needs and help with transportation [27–29]. Carers emphasize the need for clear, honest medical information and education about the prognosis and treatment of the survivor throughout the rehabilitation process [30], which can be effectively delivered through educational programmes [31]. Several qualitative studies [6, 32–35] have been conducted to document the experiences and perceptions of carers of people with an ABI and whether their support needs are being met. Barriers to accessing healthcare services for caregivers include highly fragmented healthcare systems and a lack of awareness from healthcare providers, other relevant service providers and the general public [6]. Caregivers’ needs change and increase during the spectrum of recovery, predominately changing from medical support to needs of emotional, financial and community support [36]. The transitional stage from hospital to home can become a hotspot for developing high rates of depression and decreased psychosocial functioning in caregivers [37]. Factors contributing to increased depression rates include: uncertainty of the long-term outcome of the survivor, accessibility problems of specialized rehabilitation services, knowing where to go to receive help, relationship breakdown, time management and the magnitude of sudden dependency [37]. These factors reiterate importance of long-term support for caregivers. Particularly within the Australian healthcare context, there are progressive declines in service accessibility and limited

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access to formal support services such as carer’s allowance, travel support or accommodation for carers of people with an ABI when travelling through the rehabilitation process [38]. Australia’s healthcare system is state managed, resulting in different clinical guidelines and service delivery from state to state. Queensland (QLD) has the highest prevalence, with 2.5% (82, 6000) of the QLD population living with an ABI compared with the Australian average of 1.8% of the population [1]. The National Disability Insurance Scheme (NDIS) particularly has been implemented by the National Disability Insurance Agency within most states in Australia, with aims to provide support and a better life for Australians with a significant and ongoing disability and their families and carers. Launched initially in 2013, it is expected that the NDIS will be in effect as of 2016 in Queensland. The NDIS have promised to ensure the provision of information, referral and linkage for families and carers, enabling them to receive the community access and support systems to assist them in their roles. ‘Peace of mind’ for all disabled Australians is promoted and a service commitment that is professional, accessible, fair and timely. It is proposed that, in 2016, changes to the NDIS will occur; it is timely that research is conducted within Queensland prior to the NDIS launch to assess the needs of caregivers and support workers. Positive aspects of caring There is substantial research covering the negative effects of caring for ABI; however, researchers provide very little opportunity to account for any positive experience [39, 40], yet, when an opportunity for positive reporting is provided [41], 60% of caregivers described having positive caring experiences in their roles. The caring role can elicit positive attribution and rewards that help maintain caregivers positive functioning through daily stressors [42]. Moreover, factors such as social support, active participation in life tasks and the degree with which the carers’ needs are met have all been shown to be positively related to life satisfaction [43–45]. Positive emotions have been shown to promote flexibility in thought processes and problem-solving [46], offset the physiological impact of negative emotions [47, 48], promote adaptive coping strategies [49, 50], facilitate social support [46] and continue to enhance wellbeing [51, 52]. Caregivers with low social support often have clinically meaningful levels of life dissatisfaction [53], are less effective during the rehabilitation process and are associated with increased psychological distress [54]. Theoretical framework: The self-determination theory The self-determination theory (SDT) is a theoretical framework that could be applied to allow for better comprehension of the factors involved in influencing caregivers’ qualityof-life after ABI. The SDT posits that, in order for people to achieve healthy functioning, three basic needs have to be met: autonomy, competence and relatedness [55]. Individuals who experience low relatedness in their role who have lack of control over their circumstances and feel incompetent are likely to experience lower psychological well-being. Caregivers often experience isolation and feelings of inadequacy in their caring role. According to the theory, isolation

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as caregivers represents feelings of low relatedness and feelings of inadequacy reflect low levels of competence. It is yet to be determined whether autonomy differs in caregivers.

[57]. To gain an understanding of the support and service accessibility across QLD, participants living throughout the state, including regional areas, were included.

Research aims

Inclusion criteria

Understanding the perspectives and experiences of caregivers needs throughout the recovery process is an important step towards the development of tailored services and interventions which can begin to meet the specific needs of caregivers at each recovery phase [35]. To date, there is a significant gap in the Australian literature regarding whether caregivers needs are being met along the recovery continuum. Research [36–38] has in part investigated caregiver’s experiences and needs in an Australian context. However, it is the current researching teams aim to build on this research and explore the support needs of caregivers through their lived experiences and perspectives of the QLD healthcare system, in order to identify the factors that impede or facilitate service accessibility and the impact these factors have on caregivers’ quality-of-life. In addition, this study will investigate whether the autonomy of caregivers differs, as this is currently an understudied area within the literature. Another aim of the researchers in this report is to create short- and long-term recommendations that will be useful for the proposed changes to the NDIS. The research findings that will be disseminated will hopefully have a strong influence in the changes to the NDIS, especially within QLD. The perspectives of caregivers who provide the primary support for individuals with an ABI in QLD are sought by the researchers in this study.

To be eligible, participants must have been the primary caregivers of a person with ABI, who were currently living with or had lived with a person with ABI in the last 2 years. ABI included any damage to the brain occurring after birth, including traumatic cases (i.e. from collision or assault) to disease or medical conditions (i.e. encephalitis or anoxia). No time restrictions of the brain injury event were applied. Each participant needed to be 18 years or over, fluent in English and able to participate in an individual semi-structured interview.

Method Ethics approval Ethical approval for this article was obtained through the Research Ethics Review Board from a regional University in Australia. Overview This article involved individual semi-structured interviews with primary caregivers of ABI, conducted by the principal researcher, Bryony Kitter. Sem-istructured interviews were chosen because the format is designed to elicit narrative of the caregivers’ own experiences, allowing for an in-depth exploration of attitudes, motives and beliefs [34, 56]. More specifically, the research team sought to gain insight into caregivers’ personal attitudes and beliefs of their caring role and service provision, in order to identify the factors which facilitate and/or impede their quality-of-life. Participants There were 20 participants (M ¼ 54.9 years, SD ¼ 11.05 years) recruited via opportunistic sampling from disability services throughout QLD. Participants were also recruited after the researchers addressed a social support group for caregivers of ABI outlining the research team’s objectives. Further recruitment included using the snowballing method, whereby participants were asked to inform other caregivers of the research. When a population can be difficult to locate and recruit, this method or recruitment is deemed appropriate

Materials Data was collected through semi-structured interviews that contained structured open-ended questions. The interviews that were conducted included face-to-face contact, phone and Skype interviews. Each interview was recorded using two recording devices, a laptop and smartphone. The questions were formulated to cover three broad subject areas; the participant’s perspectives on the challenges faced, whether their support needs were being met and any positive aspects of the caring role, which they deem to enhance their qualityof-life. Additional prompt questions were used to encourage involvement and elaboration of issues discussed. Procedure Invitational flyers were distributed within centres, along with emails sent out inviting caregivers to contact the research team for additional information and to confirm eligibility. Once verbal and written formal consent was given, all participants were again advised that they could withdraw at any stage from the interviews and all personal identifiers would be removed to maintain confidentiality. The participants were instructed that the semi-structured interviews normally run for 30 minutes; however, they could run shorter or longer depending on their responses. Each interview took place in a location convenient for the participant, most of which were in the privacy of their own homes. Interviews ranged from 19–61 mintues, with all data being recorded and transcribed verbatim for further analysis. Analysis Thematic analysis was employed to decipher and extract major themes from the data set. Thematic analysis is a flexible qualitative method used for the identification, analysis and reporting of themes within data [58]. It is used to minimally organize and describe data in rich detail. The essentialist framework was chosen because the field of investigation is an under-researched area; it is, therefore, useful to choose a method that provides a rich description of the whole data set, offering the most dominant or important themes to the reader. Moreover, the identification of themes was at the semantic level to capture the unique experiences, perceptions and meanings of caregivers of people with an ABI,

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allowing for a detailed exploration on whether their needs are being met and the broader consequences associated if they are not [58]. This framework enabled a more representative interpretation of each participant’s experiences, allowing for an accurate reflection of their perceptions. Once all interviews were completed, data analysis began which followed the six phases based on Braun and Clarke’s [58] recommendations. (1) The first stage was familiarization with the data, where the data set was read and re-read carefully so as to allow for familiarization to occur with the breadth and depth of the content. (2) The second stage was the generation of initial codes. Specific features of the semantic content that were re-occurring were identified, so as to generate initial codes. (3) The third stage was searching for themes. The collated data was then organized into potential themes, subthemes and un-needed extracts that could be discarded. The codes were analysed and combined to form an overarching theme. (4) The fourth stage was reviewing those themes. At this stage the set of themes were refined, judging of the themes internal homogeneity and external heterogeneity. Reviewing the theme at the coded extract level and across the whole data set was completed. A thematic map was then generated. (5) The fifth stage was defining and naming themes. This stage involved the research team identifying the ‘essence’ of each theme. Further defining and refining of themes and sub-themes occurred and how it relates back to research questions. The findings are inevitably shaped by the experiences and assumptions of the team who are responsible for coding the data. Therefore, to address the potential bias when interpreting themes in the data set and enhance the rigour of this study, it was at this stage that two researchers conducted consensus coding so as to ensure the coding process was unbiased, accurate and reflective of the major themes that arose from the raw data set. Different researchers are likely to extract and interpret findings which are not identical and which have interpreted and emphasized different components of the data set [59]. After individual coding occurred, any discrepancies in the coding were discussed and triangulation was achieved, further establishing the coherence of the themes. Participants were not given the opportunity to review their transcripts. (6) Lastly, the sixth stage was producing the report. This report included creating an analytic narrative which convincingly demonstrates the story researchers wanted to tell about the data set and provides sufficient evidence of the themes within the data through data extracts to demonstrate their prevalence. That is, each theme was represented using vivid examples so as to capture the true essence of the researching team’s argument.

Results Caregivers were mostly female (n ¼ 16) and over 50 years of age. Participants were mainly caregivers to their spouse or

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child. The aetiology of the injured loved ones consisted of traumatic brain injury (TBI) (7 M, 2 F), stroke (9 M), anoxia (1 F) and cerebellum tumour removal (1 F). Unsurprisingly, the TBI group were all relatively young (below 25 years) and the stroke group all above the age of 35 years. A third of participants had been primary caregiver for up to 4 years and half of the participants had been in the caring role for 10 years or more. Just over half of the participants were from regional QLD, others from central south-east QLD. Semi-structured interviews Having utilized Braun and Clarke’s [58] recommendations with further use of Attride-Stirling’s [60] model of thematic analysis, researchers coded and analysed the data resulting in three global themes; (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. Refer to Figure 1 for the layout of the thematic maps for each global, organizational and basic theme established. Global theme one: Barriers impeding quality-of-life Global theme one, barriers impeding quality-of-life, incorporates the demands that the caregiving role places upon them and the insufficient resources experienced by caregivers. Organizational theme: Demands of role Uncertainty The first basic theme—uncertainty—underpinning organizational theme one was evident in the analysis as the sudden and abrupt nature of the injury, allowing no time for emotional, psychological or financial preparation. For example, With brain injury it happens overnight and it just changes lives, there is so many practical things that a carer has to deal with and organize, dealing with the emotional impact on yourself, is kind of last on the list. (Code 1, pseudo name Bec) Many caregivers explained how the uncertainty and lack of direction of their loved ones present and future circumstances are sources of significant stress for the caregivers. When asked about some of the challenges the carers face, a participant replied, The biggest challenge is the feeling that we are floundering, there is no one that has pulled everything together, we have no idea where to turn. We do not know the questions to ask . . . we are just lost, that’s been the biggest thing and no one can tell us what’s next. (Code 10, pseudo name Susan) Impact on family Caregivers frequently cited that the behavioural disturbances accompanying ABI have a tremendous effect on their dayto-day lives. The behavioural disturbances included; emotional and personality changes of the survivor, violent outbursts, substance abuse and inappropriate sexual behaviours. A carer explained, ‘The sexual behaviours can be

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Support Needed to Improve Quality of Life

Ongoing Support

Demands of Role

Factors Enabling Quality of Life

Maintaining Well-being

Uncertainty

Preparatory Measures

Enriching Experiences

Impact on Family

Specialised Care

Coping Mechanisms

Psychological and Physical Impact

Social Support

Insufficient Resources

Future Planning

Financial Strain Deficiency of Services

Figure 1. Thematic map for each global, organizational and basic theme established.

become very different, like from actually being raped every night, down to saying inappropriate things to other women or children and things like that, so you tend to become very isolated’ (Code 1, pseudo name Bec). Caregivers whose loved ones do have violent outbursts all mentioned how they had little knowledge or resources on how to deal with the situations. When asked how they cope with the violent outbursts, a carer explained, If you go to the police all they want to do is lock them up, there is no help for those women. I mean you do not want to go to a refuge . . . you do not want to cause any more problems, but you just want to know how to deal with the situation, so there is no support around anything like that around those behaviours. (Code 7, pseudo name Robin) Caregivers also expressed how the changes in behaviour and the general lack of time place significant pressure on relationships within the family. A major concern mentioned by all parents was how the injury was going to impact upon the upbringing of their children. For instance, ‘The children find it, particularly the older they are, they find it very very distressing that things have changed and that dad is a different person and they do understand that’ (Code 5, pseudo name Lauren). Psychological and physical impact Many caregivers mentioned how caring for their loved one with severe disabilities places a tremendous psychological burden on themselves. A carer explained, It’s very confronting having a family member that was once healthy who now can no longer communicate with you, tell you when they in pain, tell you if they are hungry, tell you what they would like and what they don’t like. That’s extraordinarily psychologically difficult . . . and it’s gone on for years and years. (Code 5, pseudo name Lauren) Not knowing whether that person would want to be alive or not, you know, starting to talk a little bit about things like voluntary euthanasia. It’s like, would my son want to be

alive? [Turns to son in background] I really don’t know if it would be your choice to live in this state that you are living in now? (Code 6, pseudo name Lisa) Caregivers frequently cited how the demands of their role have negatively impacted on their physical health. A carer commented, ‘I have developed adrenal fatigue and I have had to have medical treatment. I am just at the level of fatigue that I have it all the time. I have no quality-of-life’ (Code 8, pseudo name Roxi). Across all interviews, caregivers explained how they felt this tremendous sense of loss, the loss of a partner or child, as well as the loss of their own identity. Additionally, caregivers frequently expressed feeling ambivalent in their circumstances, with some carers explaining how they are consumed with guilt over considering the possibility of separating with the injured loved one, to even considering how their life would be if their loved one had not survived. For example, ‘I am hanging by a thread. This is the rest of my life, to have this person in your life. It’s so draining’ (Code 3, pseudo name Dale), and ‘To actually think, some days I wished he had died’ (Code 4, pseudo name Darren). Organizational theme: Insufficient resources Financial strain Many caregivers identified the lack of employment opportunities for disabled people, the costs involved with caring for someone with an ABI, the lack of time and the everyday costs of running a household places a significant financial strain on themselves and their families. A carer explained, ‘At a moment I have to drop everything I am doing and be there for him. So you know, you cannot work, it’s impossible to have a 9 to 5 job and then have someone with ABI who needs you’ (Code 5, pseudo name Lauren). Participants frequently cited how indignant they felt regarding the money they believed they are saving the government by choosing to care for their loved one. A carer commented, I can’t imagine how much money we would save them, by doing what we do. If you put her [person with ABI] in

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institution-based care, it would cost them a god dam fortune. There is no way they could do it for the small budget that we run on. (Code 9, pseudo name Suzi) A few caregivers explained a significant issue is how service accessibility is dependent on their financial situation. Caregivers explained that the type of financial assistance they are receiving for their loved one restricts their use of what services they can access and what they spend the funds on. For example, Has individual funding, so we don’t get any extra services. When we ring them up and say what services are available to him [person with ABI] and you mention that he has his own funding from QLD government, they say I am sorry, you are already funded. We cannot help you. (Code 9, pseudo name Suzi) Several caregivers also expressed that their financial strain is due to not being eligible for assistance from government welfare departments, for instance when they own assets. Additionally, caregivers mentioned how the timely procedure of legal processes for compensation payouts causes significant stress for the injured loved one and the family. Deficiency of services Across all interviews, a significant barrier identified was the insufficiency and inconsistency of services across QLD, especially in regional QLD. These services included respite, specialized equipment, support for the person with an ABI and support for the carer. When asked if they needed help navigating the systems to find the services, a carer replied, There are no services!. . . The services don’t exist in most parts of Australia, so it’s not about navigating services, it’s about creating the services in the first place. (Code 7, pseudo name Robin) Caregivers frequently mentioned the communication incompetence between services creates an increasingly difficult situation for themselves in attempting to research and source the necessary support for their loved one. A carer commented, The only way we got onto that [hospital] was by a friend’s daughter who happened to know someone. We weren’t told that by the neurologist, we were not told that by the doctor . . . anyway she spoke to someone, who spoke to someone, and a few months later we managed to get into there . . . none of this information was volunteered by anyone else. (Code 5, pseudo name Lauren) Another barrier identified across all interviews is the ‘recovery phase window’ that is associated with ABI. This is usually 6 months after the injury, where the brain attempts to repair the anomalies acquired after injury, which can result in spontaneous recovery of the person. Participants explained how this information creates feelings of hope for some form of improvement in their loved one’s condition. However,

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carers explained there is a lack of specific services for the brain injury rehabilitation, leaving them feeling ‘desperate’ due to the diminishing timeframe now imposed on them. Caregivers revealed that accessing services for specialized equipment, especially in regional QLD, is problematic. A carer commented, Between starting the process and finishing it, you are looking between 6–9 months to get a chair . . . I think the lack of availability of any kind of disabled equipment. I mean if that was easier, well then it would make our lives easier. (Code 9, pseudo name Suzi) Lack of respite services was mentioned across the majority of interviews as a major challenge in their lives. A carer explained, ‘But he is excluded from respite services in our region simply because of his disability because he has a severe brain injury. That is discrimination on the basis on disability, one would think that would be illegal’ (Code 5, pseudo name Lauren). Many caregivers mentioned how service availability and delivery in QLD is dreadful compared to the rest of Australia. Carers repeatedly mentioned the lack of specialized care for someone with a severe brain injury throughout QLD. For instance, They wouldn’t even put him under a rehab specialist because they didn’t want him anywhere near their rehab ward because his injury was so severe. I was under enormous pressure to put him [person with ABI] straight into aged care, 3 months after his injury and he was 20! Enormous enormous pressure! They even told me that he was a bed blocker and that they just wanted him out of the hospital because they needed his hospital bed. (Code 12, pseudo name Tessa)

Global theme two: Support needed to improve quality-of-life Global theme two, support needed to improve quality-of-life, involves the collective perspectives of caregivers on what services and support is needed to assist them in their demanding role and includes services to not only improve their day-to-day life, but the future care needs of their loved ones. Organizational theme: Ongoing support Preparatory measures Caregivers frequently cited the need for better direction and knowledge of what services are available and how to go about accessing them during the hospital phase and when they return home. When researchers asked what support would be beneficial to them, a carer explained, Information given to families . . . about what can or what may happen with somebody with a head injury and not just when they leave the hospital . . . who can you ring at 2 am if he is insisting on raping you or hitting you . . . because you do not want to be calling the police. (Code 1, Pseudo name Bec)

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No one helped us with that. We didn’t know which way to jump, that was hard. If there was someone that could actually say, approach this person or approach that person just to find out how to change your car, how to change your house to be suitable for a wheelchair. You do waste a lot of energy floundering. (Code 5, pseudo name Lauren) Not all carers found the hospital phase unsupportive. A few carers explained how they had positive experiences during the initial recovery phase and felt prepared and supported. For instance, ‘I felt really helped, so many professionals in one room, all asking me what I think. I felt really supported’ (Code 2, pseudo name Brad). Carers also explained how there is a need for long-term ongoing support that encompasses all their loved ones care needs. Carers explained how there is a need for services to move beyond just education about ABI. A carer commented, You really need someone who can mentor you, the carer, through that whole process, not just being handed a pamphlet because you really, you do not know which way you are going. You need someone who can virtually hold your hand. (Code 3, pseudo name Dale) Caregivers explained how they are not equipped with the skills to tackle the behavioural disturbances and need assistance in learning how to handle the situations when they arise. Caregivers whose loved ones had severe brain injuries all mentioned how they needed support in decision-making and for someone to take control of their loved ones care needs. For example, ‘I am over being the front of all knowledge! I want someone to tell me and help me get things done for a change’ (Code 9, pseudo name Suzi). Another carer said, As soon I brought him [person with ABI] home . . . suddenly I was expected to be the expert about his care and pass on my expertise to people. No one ever wants to become an expert from the family perspective that’s for sure, that’s the hardest part. (Code 3, pseudo name Dale) Specialized care Caregivers also identified the need for suitable respite and services with specialized care for ABI. Additionally, caregivers expressed the need for a more co-ordinated and accessible service system whereby, instead of services competing with one another, to instead have a streamlined interconnected support system for people with ABI care needs. For example, One of the things we do need is we need a respite facility . . . People have to drive 4 or 5 hours just to get overnight respite unless they have it in their homes and then that’s pointless because the rest of the family have to leave. (Code 11, pseudo name Sam) Several participants mentioned how, due to the nature of ABI and the stage of its onset, the carers are not known to disability services, unlike people who are born with a disability. Caregivers frequently cited that this is a disadvantage to them in trying to access the already limited services.

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A carer commented, ‘The generalist disability services that exist in my area, they are really used to dealing with parents who have a child born with the disability. So they don’t have any understanding of acquired disabilities’ (Code 15, pseudo name Nina). Further, many caregivers expressed the need for any form of brain rehabilitation for their loved one. All caregivers were informed or researched for themselves the possibility of neuroplasticity and all mentioned the need for a service to be provided to their loved one with the hope of further recovery. Additionally, across all interviews, caregivers identified the need for community education on ABI. For instance, ‘Education! There needs to be a hell of a lot of education, but it needs to be grassroots education you know. Not somebody in a wheelchair but somebody who looks very normal, but whose behaviours have changed’ (Code 7, pseudo name Robin). Social support Caregivers frequently identified how beneficial social support is and the need for more support networks for themselves. A carer commented, ‘It’s good for us to talk to somebody who knows, because we all are at different stages of the journey’ (Code 9, pseudo name Suzi), another saying, ‘The support of others who can empathize, who can listen to me . . . someone to understand that this is the reality of it’ (Code 9, pseudo name Suzi). Although a few caregivers explained the government funded ABI support groups were not effective for themselves, many caregivers explained how beneficial they have been with forming contacts and sharing of information. For example, Through [government funded ABI support groups], it’s the first time we are starting to get some sensible things together. We actually felt as if we are out at sea about what is going on. We have learnt a lot from the other people in the group. (Code 11, pseudo name Sam) Additionally, many participants expressed the need for more social events for both themselves and their loved ones. They explained how the events might act as respite and allow for themselves and their loved ones to get out of the house. Future planning Many carers expressed concern about ageing and what that would mean for their loved one. Participants explained how emotionally difficult it is thinking about their loved one’s future without the carer being there to care for them. Caregivers identified the need for appropriate service options for the loved one’s future care needs. For example, It saddens me to think that she has got to go into a shared home and I think that is where she will have to be in a share house (start crying) and who will care for her. They won’t love her. (Code 2, pseudo name Brad) Global Theme three: Factors enabling quality-of-life Global theme three, factors enabling quality-of-life, provides the participant’s viewpoints on what the positive aspects of

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their role are and how each carer copes with the individual nature of brain injury. This theme highlights how, in stressful circumstances, people manage to find positive meaning about their situations which can help them comprehend and cope with the changes and ultimately assist them to regain their quality-of-life. Organizational theme: Maintaining well-being Enriching experiences The researchers’ analysis revealed that, although the stressors and demands of the caring role are having a negative impact on the carers, there are still many positive aspects that the caregivers are experiencing. A carer commented, ‘It’s good to know that you are making someone’s life better, there is that. That they need you and you are helping them and that they would be a lot worse off if you were not in their life’ (Code 3, pseudo name Dale). Many caregivers expressed how their role has generated a new appreciation of life for themselves. Further, it has provided them with valuable life lessons and continues to be a rewarding experience. When asked what they think are the positive aspects of their role, a carer commented, ‘Rather than being depressed and sad and making that journey, it’s like wow, we need to live each day to get the absolute fullest because we just never know what is going to happen to us tomorrow’ (Code 5, pseudo name Lauren). Caregivers mentioned how the injury and their role have subsequently created closer relationships in the family. For instance, I suppose in some ways it has brought us closer together and you know we have become more intuitive of each other. I suppose it is a good thing, we were always close before but I mean like, it’s just brought us that much closer again. (Code 11, pseudo name Sam) Caregivers also identified that positive meaning is generated when they witness some form of independence forming in their loved one and seeing the improvements in their health. Coping mechanisms Carers identified several key aspects of how they have dealt with and continue to deal with the stressors of their role. A significant finding was the caregivers continued to emphasize the importance of keeping one’s own identity throughout their caring role. For example, ‘You have to keep doing what you love and yeah maintain as much of your life as you can. Don’t change your life, otherwise you will just get bogged down. Just continue having our own separate identity’ (Code 15, pseudo name Nina). Across all interviews, caregivers explained how taking time out just for them was important in how they coped. This includes things such as exercise, praying, having a hot bath and using Facebook. Many carers, especially in regional QLD, explained how their situation required them to be more resilient. For instance, ‘Because there was not any services like that available, I can’t tell you, you just toughen it up, get stronger in yourself and keep going’ (Code 3, pseudo name Dale). Another carer commented,

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If my husband is having a bad day and he is having an episode and he is on the floor and it’s time for me to go to work, I step over him and go to work, because that’s how we made a decision that it would not run our lives . . . we live our life how we want to live it, not how conditions around us want us to live it. (Code 11, pseudo name Sam)

Discussion Overview We have provided a broad yet detailed account of the support needs and challenges faced by carers of people with an ABI. To the researchers’ knowledge, this is the first article in QLD investigating caregivers’ needs. Consistent with previous literature [28, 32, 36], it appears that caregivers’ quality-oflife is directly dependent on whether their support needs and, most importantly, the support needs of their injured loved one have been met. A striking finding was that the majority of support needs are consistent with previous research, indicating ABI needs are globally consistent. Data analysis revealed three overarching themes within the data, which captures caregivers’ experiences after brain injury in the past and current healthcare system, (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. Summary of findings Barriers impeding quality-of-life This theme encapsulates many of the negative aspects of the caring role and is closely linked to whether caregivers’ support needs are being met along the recovery spectrum. Consistent with previous research [29, 32, 36, 38] the research team found that factors such as the demands of the caring role, the impact on the family, comprehending the injury and adjusting to the changes in their loved one all place significant stress upon the caregiver. An interesting finding is that the majority of the barriers found are preventable if the appropriate support systems were put in place. For instance, barriers such as the lack of understanding about the changes involved with brain injuries and issues coping with the changes could all be minimized or completely eradicated with appropriate education and preparation about the effects of brain injury. Of particular interest was the finding of the fragmented nature of the healthcare system and the deficiency of services applicable to ABI persons and their caregivers. There was a unanimous account of the scarcity and inconsistency of service options available to caregivers once they left the hospital and throughout the recovery spectrum. This was evident in both the individuals with low and high care needs. A reason for this dearth in service delivery could be explained by the vastness of the geography of QLD and the lack of infrastructure and personnel to help develop and run these services specific to ABI across the state, especially in small rural towns. However, the scarcity of services was not only in small rural towns, but were lacking in the larger towns and cities as well. This indicates a broader problem in the development and delivery of ABI service provision in the current QLD healthcare system and highlights how ABI

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affected individuals’ support needs are not being recognized. Additionally, this research suggests the impact of ABI is unique and dependent on injury severity and location, personality variables and environmental circumstances. This could further explain the discrepancy in service provision due to services not being able to provide appropriate support to capture every injured person’s specific needs. Support needed to improve quality-of-life This theme includes the support and service needs that caregivers of ABI deem to be necessary so as to improve the quality-of-life not only for themselves, but also for their injured loved one. In short, a number of services considered to be crucial include; respite, counselling, assistance with equipment access, guidance throughout the recovery phase, appropriate living facilities for their loved one and community education. All of which are consistent with previous research [28, 29, 32]. This qualitative evidence suggests that it is crucial that services be available to caregivers along the spectrum of recovery. These findings suggest that caregiver needs change throughout the spectrum and, thus, the services must be adaptable to suit their individual needs. This may involve better catchment of families during the hospital phase, which provides support that moves beyond just education and continues throughout the recovery journey. It became apparent to the researching team that differences in caregivers’ autonomy existed, as caregivers frequently spoke of how they preferred various levels of control and autonomy regarding their role as a caregiver. These differences occurred depending upon the low or high needs of the person with ABI for whom they provided support. Severity was distinguished by the person’s level of functioning, for example mobile vs. wheelchair bound and non-responsive vs. responsive. Caregivers who have loved ones requiring high care needs did not want to become an ‘expert’ in the care delivery. The caregivers all expressed the need for someone to provide tailored support and take control over their loved one’s care. However, this changed when the care needs of the person with the ABI were less severe. Caregivers desired greater control in providing care for their loved one; however, they expressed the need for specific training on how to tackle various situations (e.g. violent outbursts). These findings add to the literature by providing insight into the different care needs along the spectrum of brain injury. Differences between severity levels produce different behaviours in individuals with an ABI. For example, high severity means mostly diminished behaviour, which often leaves the person exceptionally vulnerable. Caregivers’ support needs include; specialized respite care, equipment access, assistance with incontinence, assistance with basic hygiene and in-home assistance, ongoing support, adaptation of living arrangements, social support and medical care. Conversely, low care needs result in the individual being more mobile, often resulting in behavioural problems. Caregivers require support with: skills to cope with the behavioural disturbances (violent and sexual behaviours, substance abuse); skills to cope with the emotional changes; education for themselves and their social network; employment opportunities; and social support.

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Another interesting feature, which could be due to the older age range of the participants, was the concern over the future care needs of their loved ones. Other than aged care, there is a dearth of suitable long-term facilities for people affected by ABI in QLD. Research suggests that there are over 7500 young people with a disability (aged less than 65years) who are currently living in aged care in Australia [61] due to the lack of alternative living options. Financial constraints within the healthcare sector may be an influencing factor in explaining the lack of alternative facilities for younger individuals. Clearly, having adequate accommodation which can meet the range of care needs of people affected by ABI is particularly important for caregivers and is currently the source of significant stress for ageing families. Factors enabling quality-of-life This theme focused on the positive aspects of the caring role, uncovering factors that promote well-being for caregivers of ABI. Consistent with previous research [41, 42, 62], caregivers manage to find positive meaning and have enriching experiences during distressing circumstances. It was interesting that those caregivers who lived in the most isolated areas and with the least amount of services showed the greatest amount of resiliency. Grant et al. [42] suggest that the production of resilience is dependent on the complex interaction between environmental and individual factors. Grant et al. continue to explain that constant exposure to adversities contributes to the production of resilience in individuals. The caregivers who are located in rural areas would face situations that require constant adaptation due to the limited resources available, a possible explanation for their increase in resilience. Unsurprisingly, the caregivers who displayed the greatest level of resiliency utilized coping mechanisms in dealing with the day-to-day stressors, which focused mainly on establishing control over their situation. These participants explained the importance of not labelling yourself a ‘carer’ and to keep as much of your identity as possible. These differences may be explained by the extraordinary circumstances these participants found themselves in. The vastness of the QLD state, the dearth of services and the general ‘toughen up’ attitude that is a part of rural Australia’s culture may all in part explain how these participants have coped in their role. Theoretical framework The research findings suggest that caregivers experience isolation, issues with the autonomy of care and feelings of inadequacy in their caring role. In accordance with the SDT, caregivers’ diminished autonomy, competence and relatedness could explain why caregivers spoke of their low psychological well-being throughout the interviews [55]. Interestingly, caregivers of high care needs experience too much control in their role; however, they too experience low competence and relatedness, resulting in poor psychological functioning. Future interventions could include this theory as a framework so as to increase caregivers’ quality-of-life by aiming to increase social support, feelings of adequacy in their caring role through support and guidance and addressing

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the control of care by establishing the individual caregivers’ needs. Recommendations Due to the researchers’ findings, recommendations will include short-term and long-term suggestions. This is thought to be useful due to the upcoming changes involving the NDIS with the potential for immediate change to begin addressing caregivers’ needs. All short-term goals are achievable, feasible and most necessary, whereas the long-term goals have logistic features making them potentially unfeasible with the current healthcare system. Short-term (1) Developing a register system in all hospitals, which captures all family members and their injured loved ones. This system could include preparatory measures which will provide honest and comprehensive education on what to expect, the services that will be available to them in their area of residence when they leave the hospital and contact numbers for ongoing support (e.g. counsellors, social workers, occupational therapists). (2) The assignment of a case manager within the hospital phase for future caregivers. The case manager could be with them from the hospital phase and continue with the family throughout the recovery phase. This person could be a point of call for the family members and will assist with equipment access, specialist care, respite access, counselling services, social support and future planning. The service will cease when the family deems it necessary. There is also need for the assignment of a case manager for current caregivers who are already living in the community. (3) Skills workshops, literature and coping strategies need to be developed, made accessible and administered to family members who want to learn how to deal with the behavioural disturbances and the general changes which occur in their loved one. (4) The development of an online resource specifically for caregivers of ABI that includes all necessary information in one place. This resource could include service options, chat room forums and could contain details of ABI specialized counselling services which could be reachable to isolated areas in QLD via Skype or phone. (5) Further social support networks for the family members and their injured loved ones. Social media may be a potentially viable option in creating support networks across the State to allow family members to have a secure forum where they can feel connected and supported. (6) For services to be made known to all family members and to be available to the family regardless of an individual’s financial/funding circumstances.

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(2) For existing services to become more streamlined. This includes better interconnectedness and communication between services about their client’s needs. There is a need to learn from the services that have been deemed successful so as to replicate these so all individuals can receive the same treatment. (3) The development of suitable long-term care facilities, other than aged care, for the injured loved ones when their family members can no longer care for them. For instance, initiatives such as Young Care (www.youngcare.com.au) to gain more awareness and backing from government agencies. (4) The introduction of brain rehabilitation programmes, which are ongoing and can be accessed across QLD. These programmes may be conducted via the internet and involve, for example, potential speech/memory/attention strategies to help improve functioning. (5) A recognition that some people with ABI may develop violent and/or offending behaviours, and facilities/professional assistance outside of the punitive justice system or medical model to address caregiver safety and appropriate responses to the individual with an ABI. Limitations There are several limitations that should be noted. First, this study only included primary caregivers. Exploration of support needs across the entire family may give greater insight into what services are missing and how to further improve their quality-of-life. Further, the sample is of an older age range and, thus, the support needs may not be representative across the younger generations who are caring for a loved one with an ABI. Additionally, by incorporating additional quantitative measures into the qualitative design, this may provide further insight into the severity of the caregivers’ issues and could establish relationships between influencing variables, which affect their quality-of-life. Last, although the researchers attempted to control for bias, as with all qualitative research, there is the potential of a biased interpretation of the data. Further, the participants were selfselected, resulting in potentially biased opinions of the healthcare system. Strengths Despite these limitations, the research conducted has much strength. First, the sample pool consisted of participants from across QLD, providing greater understanding in service delivery and support needs in a variety of locations. Second, the researchers in the current report not only focused on the negative aspects of the caregivers’ role, but also on the positive factors. This means that the researchers knew that caregivers are finding positive meaning in times of hardship and stress, which can be used to help create interventions to build interpersonal resources within caregivers in the future.

Long-term (1) The development of more disability services across QLD, including respite and in-home assistance that are tailored specifically to ABI needs (this should be a feature of the upcoming NDIS).

Conclusion Given the long lasting and profound impact acquired brain injury has on not only the injured individual, but also the family involved, it is necessary to investigate and explore

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ways in which to address any support needs they may have to increase their quality-of-life and, thus, the quality-of-life to their injured loved one. In 2013, the Australian Government announced the initiative of the NDIS, which is expected to come into effect by 2016 in QLD. Detailed accounts of the support that is needed to assist caregivers in their day-to-day lives has been given in this research and has provided shortterm and long-term recommendations, which could perhaps be trialled by the NDIS when it is launched in QLD. Given the scarcity of support and service options across QLD, this should be of benefit to the caregivers and their family.

Acknowledgments The authors would like to acknowledge Mr. Christian Inglis for his assistance in the preparation of this manuscript.

Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper

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