Redalyc.Working with Families Following Brain Injury

Revista Chilena de Neuropsicología ISSN: 0718-0551 [email protected] Universidad de La Frontera Chile

Evans-Roberts, Cathryn; Weatherhead, Stephen; Vaughan, Frances Working with families following brain injury Revista Chilena de Neuropsicología, vol. 9, núm. 1, 2014, pp. 21-30 Universidad de La Frontera Temuco, Chile

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Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014 DOI: 10.5839/rcnp.2014.0901E.05 www.neurociencia.cl

Artículo de revisión

Working with families following brain injury

Cathryn Evans-Roberts 1, 2 *, Stephen Weatherhead 2, 3 and Frances Vaughan 2, 4

1 North Wales Brain Injury Service, Colwyn Bay Hospital. Colwyn Bay, Wales, United Kingdom. 2 Neuro Family Matters. Chester, United Kingdom. www.neurofamilymatters.co.uk. 3 Faculty of Health and Medicine, Lancaster University. Lancaster, England, United Kingdom. 4 School of Psychology, Bangor University. Bangor, Wales, United Kingdom.

Abstract

It has been recognised for several decades that a moderate to severe acquired brain injury frequently causes a high level of psychological stress within the immediate family, who often provide long-term care and support. However, although there is an abundance of research evidence for family burden and stress following brain injury, research into the effectiveness of psychological interventions designed to support such families is relatively scarce. This paper will summarise some of the existing research literature and examine the clinical process of working with families following acquired brain injury. After a brief and selective review of the evidence for caregiver stress following brain injury, we will consider some theoretical models and concepts relevant to family work, and the existing research evidence regarding family interventions. We will then focus on our experience of working with families in clinical practice and our approach will be illustrated using a case study.

Keywords: family work, caregiver, psychological intervention, traumatic brain injury, acquired brain injury, systemic

The impact of acquired brain injury on families degree of emotional distress including increased levels of low mood, somatic symptoms, anxiety, anger, fatigue and stress. Recent prospective Improvements in medical technology have resulted in more people surviv- studies have reported clinically significant levels of psychological distress in ing after an acquired brain injury (ABI), although often with permanent and approximately one third of adults caring for a person with a brain injury complex disabilities. On discharge from hospital, it is often the case that the (Ergh et al., 2002; Kreutzer et al., 2009a). person with the brain injury returns home to live with their family, and the There is now a longstanding and substantial evidence base exploring family play a pivotal role in the rehabilitation process (Jacobs, 1988; Oddy the different factors that influence burden and distress in family caregivers & Herbert, 2003; 2009). However, supporting a person with a brain injury (Arango-Lasprilla, Quijano, Aponte, Cuervo, Nicholls, Rogers, & Kreutzer, is a particularly challenging form of caregiving, and one that does not 2010; Hassan, Khaw, Rosna, & Husna, 2011). Many research studies have appear to become easier with time (Koskinen, 1998; Kreutzer, Rapport, found that this type of caregiving does not get easier over time and that Marwitz, Harrison-Felix, Hart, Glenn, & Hammond, 2009a). Furthermore, distress levels remain high, or increase, for years post injury (e.g. Koskinen, it is recognised that the quality of life and psychological well-being of the 1998; Oddy, Coughlan, Tyerman, & Jenkins, 1985; Kreutzer et al., 2009a). injured person often depends on the psychological health and coping skills For example, in a multicentre study, Kreutzer and colleagues (2009a) found of their family caregivers (Oddy & Herbert, 2003; Sander, Caroselli, High, that depression, anxiety and somatic symptoms are common in family Becker, Neese, & Scheibel, 2002; Gan, Campbell, Gemeinhardt, & McFad- members at one, two and five years post injury. den, 2006). Interestingly, severity of brain injury does not appear to be related to Over the past thirty years, the significant strain and burden that may caregiver distress (Brooks & McKinlay, 1983; Gervasio & Kreutzer, 1997; be experienced by families of individuals with acquired brain injury has Gillen, Tennen, Affleck, & Steinpreis, 1998). However, it has been consis- been extensively documented (see Oddy & Herbert, 2009 for review). tently reported that emotional and behavioural changes in the injured Family members often have to provide long term care and support for their relative are a strong predictor of caregiver distress (Ergh et al., 2002; Oddy injured relative. The family commonly experiences further changes in role & Herbert, 2003; Ponsford, Olver, Ponsford, & Nelms, 2003). Family in the household, employment and childcare domains as well as financial members are often more distressed by these changes than by the level of strain, social alienation and isolation (Hall, Karzmark, Stevens, Englander, physical care required by their injured relative (Anderson, Parmenter, & O’Hare, & Wright, 1994; Smith & Smith, 2000; Tyerman & Booth, 2001; Mok, 2002; Douglas & Spellacy, 1996; Knight, Devereux, & Godfrey, Ergh, Rapport, Coleman, & Hanks, 2002). Numerous research studies have 1998). In addition, levels of social support appear to be an important factor documented the psychological distress reported by family members caring in relation to caregiver burden, distress and family functioning (Douglas & for individuals following a brain injury (e.g. Kreutzer, Gervasio, & Spellacy, 2000; Ergh et al., 2002). For example, Ergh and colleagues (2002) Camplair, 1994b; Marsh, Kersel, Havill, & Sleigh, 1998, 2002; Ergh et al., found that, in the absence of adequate levels of social support, higher levels 2002). The literature suggests family caregivers frequently sustain some of caregiver distress were related to increased cognitive and functional

* Correspondencia: [email protected]. North Wales Brain Injury Service. Colwyn Bay Hospital, Hesketh Road, Colwyn Bay, LL29 8AY, UK. Tel: 07 403 886 872. Recibido: 31-05-2013. Revisión desde: 15-08-2013. Aceptado: 24-06-2013.

ISSN 0718-4913 versión en línea Universidad de La Frontera Evans-Roberts e al. Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014 impairment and reduced awareness of deficits in injured relatives. Other Concepts and models relevant to family work factors that have been identified as determinants of caregiver distress include the injured relative having impaired functional status, high supervi- Whilst the stress and burden of caring for a relative with an acquired brain sion needs, poor life satisfaction, and excessive alcohol use (Kreutzer et al., injury has been recognised for several decades, it is only relatively recently 2009a). that interventions designed specifically to meet those needs have been Research has also explored family-related factors that appear to in- developed and documented. The various approaches to family work fluence caregiver distress and burden. For example, a recent study found described in the literature are informed by and reflect a number of different that caregivers’ medical and psychiatric histories predicted higher levels of psychological concepts and frameworks, some of which are considered in global distress (Davis, Sander, Struchen, Sherer, Nakase-Richardson, & this section. Malec, 2009). The importance of the gender of the caregiver in relation to coping with caring for a relative with a brain injury has also been explored with some studies indicating that male care givers may experience greater The systemic model levels of distress than female carers (Sander, High, Hannay, & Sherer, 1997; Gervasio & Kreutzer, 1997). The impact of caring on the distress levels of Recent developments in systemic ‘relational’ approaches to brain injury parents and spouses has also been investigated. The findings in the litera- rehabilitation (e.g. Bowen 2007; Bowen, Yeates, & Palmer, 2010) are cur- ture are inconsistent, with some studies reporting higher levels of distress in rently at the forefront of family intervention development in neuropsy- spouses (Kreutzer et al., 1994a; Kreutzer et al., 1994b; Gervasio & chological rehabilitation. These are founded on the Milan-based develop- Kreutzer, 1997), in parents (Douglas & Spellacy, 2000), and others have ments in systemic family therapy described in the 1980s (e.g. Boscolo, found distress levels are comparable (Ponsford et al., 2003; Kreutzer et al., Cecchin, Hoffman, & Penn, 1987). Whilst relational approaches are influ- 2009a). It has been suggested that focusing on quantitative relationship enced by, and in some cases directly represent the systemic models underly- classifications may be too simplistic (Kreutzer et al., 2009a). ing family therapy, they do not necessarily involve the implementation of Research indicates that that divorce and separation rates are not nec- formal family therapy per se. An example is the emotion focused couples essarily higher after traumatic brain injury than in the general population therapy (EFT) that has been used successfully with couples where one has a (Wood & Yurdakul, 1997; Kreutzer, Marwitz, Hsu, Williams, & Riddick, chronic illness, including couples where one partner had a traumatic brain 2007), although widely varying levels of marital stability have also been injury (Chawla & Kafescioglu, 2012) and where one partner had aphasia reported across the literature (Godwin, Kruetzer, Arango-Lasprilla, & following a cerebral stroke (Stiell, Naaman, & Lee, 2007). Yeates and Lehan, 2011). However, further research into the quality of marriages prior colleagues are also developing this work in the UK with couples following a to, and following brain injury is needed. Greater marriage stability has been brain injury (e.g. Yeates, 2013). linked to longer pre-injury marriage, non-violent injuries, older people and In essence, relational and systemic approaches to brain injury reha- those with less severe injuries (Kreutzer et al., 2007). With regards to bilitation broaden the traditional focus on the person with the brain injury, parenting following brain injury, one study found that parents of children so that the development and maintenance of difficulties can be understood with a brain injury reported more concern for the future and pessimism in the context of relationships and interactions between the injured relative than spouses (Knight et al., 1998). Until recently the needs of children who and other family members, and between the family and its wider context. have a close relative with a brain injury have been largely overlooked in the Traditional neuropsychological approaches tend to view the injured per- literature (Webster & Daisley, 2007). However, it is now understood that son’s difficulties in isolation, as both direct symptoms of the brain injury child relatives experience psychological distress and have particular needs and as the individual’s psychological and behavioural responses to those following a brain injury in the family (Kieffer-Kristensen & Teasdale, 2011). limitations. The circularity inherent in systemic thinking promotes an It is important to highlight that many families demonstrate positive understanding of both the injured relative’s experience, the family’s reac- coping ability and resilience when challenged with a brain injury in the tions to the injury and the interaction of these. family (Godfrey, Knight, & Partridge, 1996; Kosciulek, 1994; Perlesz, Adopting a systemic approach allows practitioners to develop a Kinsella, & Crowe, 1999; 2000; Kreutzer et al., 2009a). Further research is broader contextual understanding of the situation, and an explanation for a needed to investigate the factors that contribute to positive adjustment, larger proportion of the presenting difficulties, including the caregiver coping ability and resilience in families. As brain injury specialists, it can be ‘burden’ and its impact. It also facilitates a non-blaming perspective and a easy to get drawn into a paternalistic approach, which is not necessarily formulation that can be shared with all members of the family or system. A what the family system needs. It is important to place the impact of the systemic approach also allows interventions to be implemented at different event, and the potential for change, within the control of the system. points within the system. For example, interventions primarily intended to A large number of studies have highlighted families’ need for infor- improve the psychological well-being of family members are also likely to mation and education about the impact of brain injury, delivered at an have benefits for the relative with a brain injury, as has been demonstrated appropriate time and in a helpful and memorable format (c.f. Morris, 2001). elsewhere (Singh, Lancioni, Winton, Wahler, Singh, & Sage, 2004). Other Brain injury is often underdiagnosed after head trauma (Deb, 1999), and the authors have also reported that support for families produces benefits and immediate medical focus on orthopaedic injury can result in a failure to greater gains in rehabilitation for the relative with a brain injury (Jackson & appreciate the full impact of neuropsychological sequelae. This can often Haverkamp, 1991). Particularly promising applications of relational ap- mean that survivors and families are deprived of early / timely psychologi- proaches to brain injury rehabilitation include the Brain Injury Family cal support. Instead, referrals for neuropsychological input tend to come at Intervention developed by Kreutzer and colleagues (e.g. Kreutzer et al., the point of relationship breakdown, system overload, or instances of high- 2009b) and the family interventions developed at the Bouvier Centre in risk behaviours. Lack of information and education can often result in Australia (e.g. Charles, Butera-Prinzi, & Perlesz, 2007). families misunderstanding their relative’s difficulties, for example, blaming behavioural and emotional change on being deliberately difficult or inten- Stress and coping models tionally lazy. The empirical research described here and elsewhere clearly indicates Models of stress and coping provide a framework for research that aims to that brain injury can result in long term unmet needs for the family. How- identify mediators of resilience and coping in ABI family caregivers, as well ever, we do not know how early psychological intervention (or lack thereof) as principles that can guide clinical practice. The predominant model, mediates these problems. One possibility is that engaging with the family developed almost thirty years ago by Lazarus and Folkman (1984), centres system early in rehabilitation could improve wellbeing and foster realistic on the concepts of cognitive appraisal and coping. Cognitive appraisal appraisals of the future neuropsychological residual effects, recovery poten- refers to the individual’s evaluation of the meaning and significance of on- tial, and deficit management. going events, whilst coping describes their capacity to meet the demands by The literature reviewed here provides unequivocal evidence of the planning and taking action. The model is transactional, involving the rela- significant psychological distress and burden experienced by families fol- tionship between the individual and their environment. The model pro- lowing acquired brain injury. This longstanding evidence indicates that the poses that the severity of stress experienced cannot be understood in terms family, as well as their injured relative, would often benefit from access to of the absolute nature of the events, as it depends upon the relationship psychological support and intervention. This paper will now examine the between the individual’s perception of the demands being made and their process of working with ABI families, by considering the concepts and (perception of) their ability to meet the demands. Appraisal processes models relevant to family work, the available evidence for the effectiveness (which are amenable to change) and coping (which is also amenable to of family interventions and our experience of working with families, which change and include access to external sources of support) both mediate is then illustrated with a case study. stress. Therefore, stress is never a direct response to a given situation. By 22 Evans-Roberts e al. Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014 identifying different forms of coping (problem focused, emotion focused Self-awareness and brain injury and avoidant coping), the model also identifies distinct routes to improved coping capacity, which can be implemented in stress management interven- A further source of isolation for the family after a brain injury is that, in a tions. large proportion of severe traumatic brain injuries and cerebral vascular In support of this type of stress process model, several caregiver accidents, survivors have a significant lack of self-awareness about the studies have demonstrated that psychological well-being is mediated and impact of their injury on aspects of their functioning, including changes in more accurately predicted by coping, appraisal and support variables than their personality and behaviour (e.g. Prigatano, 1997). Whilst poor self- by the severity of the stressors involved per se. For example in a study of awareness may protect survivors themselves from depression and grief caregivers of people with dementia (Mausbach et al., 2012), the relationship (Carroll & Coetzer, 2011), it may heighten a sense of loss for the family. between depression and stressors such as problem behaviour and role Given that injured relatives tend to focus particularly on the loss as- overload was significantly mediated by four distinct coping strategy and sociated with their physical symptoms and limitations, it is often difficult appraisal factors. In a similar study of ABI caregivers, a Perceived Stress for the family to communicate openly with their relative about the loss they Model of Burden, based on the Lazarus and Folkman framework, was experience, or at least, to communicate about the whole picture. As family derived from the empirical relationships between perceived stress, coping, members tend to be more affected and burdened by the non-physical social support and mental health outcomes (Chwalisz, 2006). In this study, consequences of brain injury (Marsh et al., 1998; Wells et al., 2005), there is social support was shown to have significant benefits, whilst different often a striking discrepancy between the survivor’s and their family’s coping strategies were found to have varying relationships with perceived perceptions of the losses incurred and their relative importance (Yeates, stress. Such studies provide strong support for the idea that coping and Henwood, Gracey, & Evans, 2007). However, as these authors have dem- appraisal processes are critical determinants of the psychological impact of onstrated, the means by which their ABI participants (who had reduced the stresses associated with family caregiving. awareness of their executive function and social behaviour difficulties) made sense of change and disability were closely related to their pre-morbid Grief and adjustment to loss identities and abilities, and strongly influenced by family and social relationships. The concept of grief after brain injury provides a further important basis for our clinical practice. Conceptual models of grief, such as the model Denial and avoidance proposed by Kubler-Ross (1969), typically describe the psychological processes that occur after bereavement, and can help clinicians to under- Whilst grief may be an important part of the family’s response to a brain stand responses at different times and to provide appropriate support. The injury, family members may also have reduced awareness of the conse- stages are often interpreted as progressive and linear, leading to an eventual quences of their relative’s brain injury. Whilst this may reflect a lack of resolution and adjustment to the loss. According to the Kubler-Ross model, information provided either at all or at an appropriate stage (e.g. Oddy grieving involves experiencing and working through denial, anger, bargain- Humphrey & Uttley, 1978), poor understanding of the situation may also ing, depression and acceptance, a process that may take many months or sometimes reflect the family’s own denial of the severity, extent or perma- years. ABI family work at the Bouvier Centre in Melbourne, Australia is nence of the injury (Romano, 1974). In our own experience, relatives report guided by an ABI-specific Family Tasks Model based directly on this type in retrospect, that they had persisted at length in the belief that the injury of traditional bereavement model (Charles et al., 2007). It guides families in would get better or that it was less severe in the first place. Denial by family counselling through non-sequential processes of grieving, restructuring members has been documented widely in the brain injury research literature family roles and responsibilities, developing new identities and creating new (c.f. Oddy & Herbert, 2003). Whilst such beliefs and persistence may meaning. promote hope, and be helpful in earlier stages of recovery and adjustment, Grief has become an important concept in the brain injury family lit- relatives can only function as resilient and effective long-term caregivers if erature, and it is accounted for and measured increasingly in attempts to they have a genuinely realistic appraisal of the nature of the injury and its understand how families cope and function after brain injury (e.g. Zinner et prognosis. Family caregivers may need considerable support and encour- al., 1997; Marwit & Kaye, 2006; Calvete & Arroyabe, 2012). The concepts agement to achieve this awareness, and facilitating this process can be an of loss and grief are also central to at least one psychotherapeutic approach important part of our psychotherapeutic role. adopted with brain injury survivors themselves (Coetzer, 2006, 2013) and Denial is a conceptual component of a range of psychological mod- there are clear parallels between bereavement and survivors’ grief about els, including psychoanalytic theory, and models of coping and stress their personal losses following brain injury. (Lazarus & Folkman, 1984, 1991). Denial is typically described as a psycho- There are, however, at least two important ways in which family grief logical defence mechanism, which protects against overwhelming pain and following brain injury differs from grief following bereavement. The first is anxiety under adverse and uncontrollable circumstances, such as serious the ambiguity of the loss following brain injury. The injured relative is not illness and chronic disability (Lindsay, 2011). However, as outlined above, dead but changed. The person known before may be present to some relatives’ denial of the degree or permanence of their relative’s disability can degree, or at some times, perhaps fleetingly. Their physical existence may also be a significant obstacle to communication and progress for all in- act as a saddening reminder of the past, when relationships were more volved in the rehabilitation process. mutual and shared. There is often a loss of interpersonal connection, Emotionally avoidant coping strategies (such as thought suppression attunement and intimacy between partners after a brain injury, the injured and wishful thinking) have been identified as prevalent in family caregivers partner may feel like a stranger or there may be a sense that their personal- of people with neurological conditions, including dementia and acquired ity has died (e.g. Feigelson, 1993; Gosling & Oddy, 1999; Bowen, Yeates, & brain injury. There is also considerable evidence that avoidant coping Palmer, 2010). In some cases, relatives who have experienced initial elation strategies have a negative impact on ABI caregiver psychological adjust- and relief about the survival of their loved one, now face a situation in ment, well-being and quality of life (e.g. Tarter, 1990; Sander et al., 1997; which it is impossible to grieve the partial loss of their relative effectively Koscuilek, 1994; Blankfield & Holahan, 1999). Conversely, positive rela- (Lezak, 1988; Perlesz et al., 1999). Families not only grieve for the loss of tionships between active and approach coping strategies and psychological the person they knew before the brain injury, who may now be significantly well-being in ABI family caregivers have also been identified. Several more different, but must also attempt to adjust to their new role as caregiver, and recent studies have examined the potential mediating and indirect effects of to the increased needs of the injured person. In contrast to bereavement, avoidant coping. For example, Chronister and Chan (2006) reported an they are unable to ‘move on’ in the same way, to create a new life in the indirect effect of avoidant coping on caregiver quality of life via its influ- space left by the deceased. ence on perceived burden and mastery. John, Vaughan and Hastings (in Another difference is that the brain-injured family often grieves prep) found that ABI family caregiver self-ratings of emotional avoidance alone, isolated from both the outside world and their injured relative. There significantly predicted caregiver depression, and also mediated the impact are no conventional rituals to follow, to bring external recognition of the of the severity of their relative’s difficulties on caregiver anxiety. Similar loss. People outside the immediate family may not see or understand the mediating effects of avoidant coping have been found for caregivers of relative subtleties of the emotional and behavioural changes that close people with dementia (e.g. Mausbach et al., 2006, Mausbach et al., 2012). family members find most burdensome (Ponsford et al., 2003). Outsiders One possible determinant of avoidant coping in family caregivers is may therefore be unable to understand the severity of the loss sustained by the use of avoidant coping on the part of the injured relative. Krpan, Stuss the family, and, as a consequence of not being understood and not under- and Anderson (2011), for example, identified distinct groups of TBI par- standing, the family and their social network may withdraw from each ticipants who exhibited either ‘planful’ or avoidant behaviours and strate- other, creating further isolation and progressively reducing support. 23 Evans-Roberts e al. Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014 gies when facing challenges. There may well be negative relational interac- givers were initially unaware of the severity of their stress and increasing tions between the avoidance of situations that the injured relative cannot their awareness was reported to be difficult and painful. Participants were master and the avoidant coping strategies often adopted by caregivers. encouraged to develop an acceptance of their emotional state and to con- If the severity or the permanence of the injury is not recognised, rela- sider changes that would improve their quality of life, with varying degrees tives are likely to persist with avoidant coping strategies that lead to greater of success. Although caregivers became less avoidant and more open to frustration and difficulty in the long term, rather than to the adjustment experiencing difficult emotions themselves, some felt unable to impose the that can be achieved once the reality of the situation has been recognised consequences on their injured partners. Identified benefits were the support and accepted. Inevitably, however, acceptance often occurs at the end of a provided (including opportunities for long-term mutual support) and the long process, and is rarely a goal achieved in the short term. opportunity to review their roles and coping strategies. Although important, single and multi-component interventions fo- Evidence for the effectiveness cusing on education, support and development of skills may not meet the significant complex and diverse needs of some families following brain of family interventions injury. Interventions may need to take account of historical family dynamics, current relationship issues, and family strengths and weaknesses (Ram- As described above, there is substantial and longstanding evidence that kumar & Elliott, 2010). In addition, it may be useful at times for interven- highlights the psychological distress and burden experienced by families tions to include the entire family system, rather than to focus on the following acquired brain injury. Despite the recognition that many families relatives alone (Maitz & Sachs, 1995; Laori, 2000; 2003; Bowen, 2007). It have significant needs, there is only a relatively small amount of theoreti- has been proposed that professionals working in the brain injury field cally motivated research evaluating family interventions (Oddy & Herbert, would ideally have knowledge of both neurorehabilitation and systemic 2003; 2009). Concerns about the methodological rigour of the majority of approaches (Bowen, 2007). existing studies and generalizability of findings have been highlighted in the The Brain Injury Family Intervention (BIFI) (Kreutzer et al., 2002; literature (Boschen et al., 2007; Ramkumar & Elliott, 2010). Kreutzer et al., 2009b; Kreutzer, Stejskala, Goodwin, Powell, & Arango- Studies exploring interventions for families following brain injury Lasprilla, 2010) is an example of a multi-component intervention guided by tend to focus on a combination of education, psychological support and principles of family systems theory and cognitive behaviour therapy. It is a skill development such as problem-solving, stress management or behav- manualised five session intervention for individual families that includes the iour management. Two studies have focused on the provision of education person with a brain injury. It focuses on the family unit and uses family to family caregivers through an information booklet (Morris, 2001) and a therapy techniques to strengthen family systems and integrates education, community-based educational group programme (Sinnakaruppan et al., skills training and psychological support. Studies investigating the BIFI 2005). These studies did not report any statistically significant change in have found that participants report a greater number of met needs and psychological distress in caregivers. Three studies have focused on educa- perceive fewer obstacles to receiving services post-treatment (Kreutzer et tion and psychological support through a family support programme al., 2009b). In addition, caregivers and patients viewed the BIFI as helpful (Acorn, 1995), a social work liaison service offering telephone contact to and reported that the intervention facilitated the achievement of goals carers (Albert, Im, Brenner, Smith, & Waxman, 2002), and tele- (Kreutzer et al., 2010). The investigators highlighted the importance of conferencing and face-to-face caregiver support groups (Brown, Pain, using qualitative, as well as quantitative methodology, so that participants’ Berwald, Hirschi, Delehanty, & Miller, 1999). The family support pro- experiences and perceptions can be included as part of the evaluation of gramme (Acorn, 1995) reported no significant changes in coping skills, interventions. general well-being, and self-esteem. However, caregivers evaluated the A further two studies have investigated the use of family therapy fol- programme as helpful and continued to meet as a group following the lowing brain injury. Perlesz and O’Loughlan (1998) described a preliminary conclusion of the study suggesting they found some benefit. The latter two family therapy study in which fifteen families following brain injury were studies reported significant improvements in distress levels (Brown et al., followed over a two year period, including 12 months prior and 24 months 1999), burden, satisfaction and mastery (Albert, 1995). Other studies have post family counselling. A significant decrease in distress was reported for explored the effectiveness of skill development. For example, Carnevale both individuals with brain injury and their carers, and a reduction in and colleagues (2002) explored a community based education and behav- relatives’ burden and strain. In addition, family conflict reduced and family iour management programme for individuals with a brain injury and their cohesion and adjustment increased. However, self-reported levels of anger caregivers. However, no significant improvement in burden or stress was and marital adjustment returned to original levels at 24 month follow up. reported. An earlier study had investigated the benefits of a psychoeduca- The authors recommended that marital couples may have specific needs tional stress management programme for parents of children with brain that require longer term counselling and that the issue of anger be further injury, and reported significant reductions in depressive and anxiety symp- investigated (Perlesz & O’Loughlan, 1998). toms (Singer, Glang, Nixon, Cooley, Kerns, Williams, & Powers, 1994). In addition, Charles and colleagues (2007) described a pilot project Two randomised control trials have explored problem-solving inter- exploring multi-family group intervention for families where a parent had ventions for families following brain injury (Rivera, Elliott, Berry, & Grant, an acquired brain injury. Six families comprising 11 adults and nine children 2008; Wade, Carey, & Wolfe, 2006a; Wade, Carey, & Wolfe, 2006b). Rivera attended twelve sessions over six months. Each session consisted of parallel and colleagues evaluated a face-to-face and telephone problem-solving groups including parent/child, partner/person with brain injury and family training intervention for caregivers of adults with brain injury. They re- time. Themes for sessions were derived from the Bouviere Family Tasks ported significant reductions in depression, health complaints and in dys- Model (Perlesz, Furlong, & McLachlan, 1992). Following the intervention, functional problem solving styles. However, no statistical changes were parents reported reduced levels of personal distress although high levels of observed in caregiver well-being, burden or constructive problem-solving marital and family dysfunction did not change over time. Families evaluated style (Rivera et al., 2008). Wade and colleagues designed a family problem the group as useful and reported a range of positive changes including solving intervention for families with a child with a brain injury (Wade et reduced feelings of shame and isolation, provision of mutual support, al., 2004). The intervention involved an initial face-to-face visit with the increased understanding of brain injury, sharing of difficult experiences and whole family (including the child with a brain injury) and a therapist. The moving from blame to compassion. whole family then participated in a weekly online self-guided family prob- It is recognised that UK brain injury services are often aware of the lem solving session and a video conferencing session with the therapist. significant needs of families following brain injury and often provide Following the intervention, parents reported reduced symptoms of depres- services to meet this need (Bowen, 2007). However, this may not be as sion, anxiety and global psychological distress (Wade et al., 2006a) and widely reported in the literature as it is included in clinical practice, and improved child self-management and compliance at follow up (Wade et al., further documentation and research into this type of service related family 2006b). These studies indicate overall positive evidence of psychological work is needed (Oddy & Herbert, 2003). A number of UK service exam- benefit for caregivers undertaking family support and education pro- ples include the Community Head Injury Service in Aylesbury, which grammes, perhaps particularly where the intervention contains a direct provides long term specialist services for families and employ a specialist support component and/or training in problem solving. family worker (Tyerman & Booth, 2001; Tyerman & Barton, 2007). In A qualitative evaluation of a stress management group for family Oxford, Webster and Daisley (2007) have developed interventions that caregivers following brain injury based on Acceptance and Commitment include child relatives following a brain injury in the family. Weatherhead therapy (Hayes et al., 2003; Noone & Hastings, 2009; 2011) found the and Newby (2008) have described and evaluated a parenting programme approach was helpful, although challenging, for spouses in long-term ABI for fathers with an ABI in Cheshire, UK. The North Wales Brain Injury caregiving roles (Williams, Vaughan, Huws, & Hastings, submitted). Care- Service provides information, individual and group support for families

24 Evans-Roberts e al. Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014

(Coetzer, Vaughan, Roberts, & Rafal, 2003). Neuropsychologists at the

Oliver Zangwill Centre in Ely provide a comprehensive rehabilitation Caregiver programme that includes families and caregivers (Yeates, 2009). Their care Burden pathway promotes relatives’ involvement in the rehabilitation provided and provides support, family therapy, sense making and education opportunities to families via individual and family group contact. Multi-family group interventions are also being implemented at the Royal Hospital for Neuro- Disability (Bowen, 2007). Descriptions of the relationship between families Dis- Stress, Anger, and brain injuries services (e.g. Salas & Wilson, this issue) highlight the bi- engagement Frustration, directional involvement of relatives in rehabilitation. Although families with Fatigue need services to provide education and various forms of support for them- Rehabilitation selves, they also represent a critically important resource, providing rehabilitation, supervision and care for their injured relative. The importance of addressing the needs of families in order that they can continue in this role cannot be overemphasized. Whilst there is an urgent need for more research evaluating the im- Relationship Distress & pact of interventions for family caregivers following brain injury, we would Problems / Stress for guard against the recommendation that this evidence should be based Relationship Injured exclusively on randomised control trials and similar quantitative method- Breakdown Relative ologies. A requirement to acquire evidence via this ‘gold standard’ approach is likely to discourage clinicians who might otherwise participate in the research process, render the research less feasible, and confer a number of disadvantages over other naturalistic or less highly controlled approaches. The UK’s National Service Framework for Long Term Conditions (2005) includes the statement that ‘RCTs and other quantitative methodologies are not necessarily best suited to research questions about quality of life’. In our Figure 1. Cycle of caregiver stress. This represents the circular / bi- view, this statement is directly applicable to caregiver intervention research, directional relationships between the distress and stress experienced by and reflects outcome measurement issues, as well as ethical issues and injured clients and their caregivers. concerns about clinical generalization. RCTs typically impose restrictive inclusion and exclusion criteria on participant selection, which means that samples may be highly unrepresentative of the population, and that the question about effectiveness in clinical practice may remain unanswered. The random assignment of participants to the intervention conditions may also cause difficulties as participants can be assigned to conditions that Support for would be considered unsuitable for them in a clinical (non-research) con- Caregiver text. It may be that in order to achieve evidence-based practice, the evidence needs to be more practice-based (Mehl-Madrona, Leung, Kennedy, Paul, & Kaplan, 2010). For example, case studies based on heterogeneous samples selected from clinical practice can provide at least preliminary evidence of effectiveness. Critically important information about the ac- Improved ceptability and experience of interventions can also be achieved via qualita- Wellbeing of tive and mixed methodology studies. Caregiver

Our experience of working with families

The overarching aim of our approach is to engage families following brain injury in therapeutic interventions that will improve and to help maintain the psychological health and wellbeing of the injured relative and the whole Improved More Able to Better family. Interventions involving the family, as well as their injured relative, wellbeing of Cope with Support for can break negative cycles of stress and distress, and improve quality of life Person with a Demands of Person with a for all involved. We assume, on the basis of our clinical experience and the Brain Injury Caregiving Brain Injury small amount of existing evidence, that working with the family is, in some cases, the most cost-effective way of supporting the recovery and rehabilitation of the injured relative, as well as helping the family members who provide care. Case managers are often closely involved with the families of their Strong head injured clients and typically come to know their client and the family Relationships very well. However, as the case management role is typically complex, Formed With multi-faceted and often closely linked to an ongoing litigation process, it is All Involved difficult for them to address the family’s psychological distress and the interactions occurring within the family without creating a compromising dual role. Case managers may not feel sufficiently trained in systemic family work or neuropsychological approaches to deal with the complexity of the dynamics involved and the role played by the brain injury. Additional Successful & support from clinical psychologists with specialist training in neuropsychol- Sustained ogy and family work can often be helpful. A psychologist’s input will also Rehabilitation be less closely linked to the litigation process.

As we have illustrated, difficulties that arise following a brain injury are experienced by the whole family. Our work with families is based on a Figure 2. Systemic impact of support for caregiver. This represents the systemic understanding of those difficulties and on the premise that family multiple positive consequences of improved caregiver support and well- caregivers can be part of the solution, as well as part of the problem. Prob- being, all of which benefit the injured family member. lems and issues are understood in terms of positive and negative feedback processes that underlie their development and maintenance, and their ap-

25 Evans-Roberts e al. Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014 praisal by others. Furthermore, such difficulties can only be understood reduce their own stress. This type of intervention may include psychoedu- within these interactive social contexts (e.g. Yeates, 2009) and there is cation about stress and its effects; recognizing stress, and practice with considerable evidence for circular and bidirectional relationships between stress reduction techniques. Stress management approaches can also be influences within families with a brain injury (e.g. Moore, Stambrook, & included in individual work with relatives. Peters, 1993; Sander, Caroselli, High, Becker, Neese, & Scheibel, 2002). The An important guiding principle in this area is that family caregivers cycle of stress and systemic model of the impact of caregiver support (see can only provide effective long-term support for their injured relative if Figures 1 and 2) provide an illustration of this type of approach. they are also able to look after themselves. However, as described earlier, Recent social changes and changes in family structure have made helping caregivers to recognize and then attempt to reduce their own stress families more difficult to define. Families are often a blend of more than can be challenging, as they have often developed avoidant coping strategies one previous household resulting from separation and divorce, and the by the time they obtain professional help. Frequently, the lives of family formation of new partnerships. Family relationships involving step-parents, caregivers are so bound up with their injured relative’s difficulties and step-siblings and half-siblings can be complex and challenging under opti- restrictions, they have often almost forgotten what it was like to consider mal conditions and these challenges are often highlighted by the effects of a their own well-being or happiness. When asked to think about themselves, brain injury in the family. Furthermore, people, who would not normally be the prospect of recognizing the extent to which their own needs are now defined as family members (e.g. close friends), may be involved in provid- unmet is very distressing and potentially threatening in relation to their own ing brain injury care at home, and there may be support workers and other identity. On the basis of our own experience of running stress management paid caregivers with a high level of involvement. For the purposes of our groups for ABI family caregivers, caregivers find it difficult to acknowledge work with families, the ‘family’ of the injured person may be defined as their stress and distress and so the first steps in stress management are anyone who is closely involved with the injured person and continues to be often about recognizing and acknowledging their current unhappiness affected by the brain injury. (Williams et al., submitted). Although the number of family intervention studies reported to date Our approach assumes that working with family members is a fun- is small, and the result is a scarcity of evidence for the effectiveness of damental part of enabling and empowering a person with a brain injury to family interventions in brain injury rehabilitation, our approach is in line live as independent and meaningful a life as possible. Information and open with interventions that have been found to benefit families (e.g. Kreutzer et discussion about the effects of brain injury can help families to understand al., 2009; 2010). It is also consistent with published guidelines for clinical their relative’s difficulties more clearly, change blame to compassion and practice, namely the Department of Health National Service Framework for empathy, and improve family functioning and quality of life for all con- Long-term Conditions (2005) and the Department of Health National cerned. Improving the emotional well-being of caregivers can have a sig- Stroke Strategy (2007). nificant positive effect on the well-being of the injured person as well as on Ideally, our work with families in rehabilitation is proactive and pre- the family. The family can be assisted to become more proactive in behav- ventative, and we aim to apply early intervention before severe problems iour management and to facilitate positive cycles of behaviour that will be develop. However, we more frequently find ourselves helping families who helpful for all concerned. Finally, stress management benefits caregivers are already experiencing difficulties. The interventions we provide can be directly and has indirect positive outcomes for individuals being cared for. described under three main categories; psychoeducation regarding brain One final component of our work is to offer supervision and training injury and its consequences, emotional support and psychological therapy, to other psychologists and multi-disciplinary colleagues working in brain and behavioural management advice and support. These may not be pre- injury rehabilitation. Working with complex and severely injured clients and sented as separate interventions or intervention stages, but as interwoven their families can often feel overwhelming and de-skilling. As Oddy and components of an integrated approach. Herbert (2009) have pointed out, professionals often experience difficulties Psychoeducation and information for family members about the ef- when working with families and there can be conflict between them. This fects of the brain injury on their relative can cover a wide range of topics, may be based partly on families being misinformed and developing unreal- often beginning with more factual information and moving towards a istic expectations of professional input. The family is also relatively power- discussion of the impact on the family and management of difficulties. less and may struggle to contain their unaddressed, unresolved grief, dis- Topics include, for example, the physical and mechanical basis of traumatic tress and uncertainty. Anger, frustration and hostility may then be directed brain injury, and why specific forms of injury result in specific changes in at the rehabilitation staff. Conversely, professionals, who may also be physical, cognitive and emotional function, personality and motivation etc. frustrated by slow progress may feel criticized by families and in turn may Similarly, the areas of the brain affected by a relative’s stroke can be de- feel critical of the family’s behaviour, which may be seen by professionals as scribed, with a view to understanding why some abilities are impaired unhelpful. Developing collaborative systemic and psychological formula- specifically. It is often helpful to discuss the process of recovery and reha- tions of these difficult, sometimes ‘stuck’ situations can help other profes- bilitation and to address the family’s expectations for future progress. It is sionals as well as families to understand how alternative approaches and also important to help the family to consider the emotional impact of the strategies might be useful. It is also possible to help other professionals to brain injury on the injured relative, possible changes in his or her sense of manage their own work-related stress more effectively and facilitate their self and identity, and their adjustment to this. Encouraging the family to emotional well-being. consider how the injury is affecting them, and how their responses, which The following case study, based on our own experience, illustrates are entirely normal and understandable, may be affecting their relative. some of the cycles of stress commonly encountered in work with ABI Emotional support often forms an important part of our work with families. We will describe our attempts to intervene at different points in families and overlaps to some extent with brain injury psychoeducation. It the system, to help family members to negotiate with each other and to may involve psychotherapy for individual family members or meetings with come to terms with the brain injury and its effect on the family. the whole family. Commonly discussed topics include the emotional impact of the brain injury on relatives, their acceptance of and adjustment to the Case study brain injury, and the family’s emotional reactions such as grief and anger. This work can be carried out with couples, partners, parents, siblings and children, or the wider family of a person with a brain injury. At the time of our involvement, Kate was in her late 20’s. She sustained a very severe traumatic brain injury at the age of 13, when she was an unre- Work with families often includes a behavioural approach to neuropsychological rehabilitation, which has a strong theoretical foundation and strained rear seat passenger in a serious road traffic accident. Kate also suffered multiple orthopaedic and internal injuries, and a depressed right a robust evidence base (Wilson, Herbert, & Shiel, 2003). This work might include a psychological assessment of problematic behaviour (for example, parietal skull fracture. Neuroimaging showed bilateral temporal and frontal lobe contusions with a right intra-cerebral haemorrhage. what the behaviour may communicate and the interactional effect of the family’s responses with the target behaviour), helping families to respond Kate developed significant cognitive, emotional and behavioural difficulties following the accident. In particular, she had very severe memory positively and consistently and providing strategies for the long-term maintenance of change (Ylvisaker et al., 2003). problems and severe executive function impairments. As a consequence, Kate was unable to function independently in daily life and required fre- Another important component of working with families is the recognition of caregiver stress and the implementation of interventions de- quent prompting and external monitoring. She had poor reasoning ability, and was inflexible and concrete. Kate’s behaviour was frequently disinhib- signed to reduce it. Stress management interventions tailored for ABI family caregivers, especially when delivered to groups, can incorporate ited and inappropriate, and her social judgment was poor. She had a history of mood swings, verbal aggression and obsessive / compulsive behaviour. most, if not all, of the education, support and behaviour management components described above, as well as help relatives understand and In addition, Kate developed epilepsy that had worsened progressively. Her

26 Evans-Roberts e al. Rev. Chil. Neuropsicol. 9(1E): 21-30, 2014 education and social development were disrupted, and she had never Intervention worked in paid employment after leaving school. Kate was referred to neuropsychology because of concern about de- Two clinical psychologists were involved in work with Kate and her family. terioration in her behaviour and family relationships. At the time of the Both psychologists knew the whole family, but one developed a more direct initial assessment, Kate was living at home with her parents, Sarah and Phil. relationship with Kate, whilst the other worked with Sarah. The joint The frequency of Kate’s seizures had increased significantly over the past appointments typically began with parallel individual sessions for Kate and year, and this was having a negative impact on her functioning and inde- Sarah, followed by a joint session. Occasionally, Sarah was joined by her pendence. Sarah had recently resigned from her work in order to spend husband, Phil. The individual work with Sarah included an in-depth explo- more time looking after Kate. However, Sarah described their relationship ration of Kate’s injury and its effect on the whole family, helping Sarah to as volatile and was noticeably low in mood in the initial assessment. Phil develop a clearer understanding of its consequences and their emotional worked away from home during the week. He had a positive relationship impact. Reflecting on the losses incurred, and their meaning for Kate and with Kate but was frustrated and upset by the conflict between his wife and Sarah, moved Sarah towards a greater acceptance of the situation and its daughter. limitations. It was then also possible to address Sarah’s considerable anxiety Kate was warm and personable, and it was easy to develop rapport about Kate and her safety and to begin to consider options that were less and a relationship with her. She enjoyed cleaning, helping to prepare meals, restrictive for Kate. Sarah was also encouraged to continue her antidepres- watching television soap opera, listening to music and playing with her sant treatment when her mood improved. The content of these sessions nieces and nephews. Kate wanted to be seen as a grown-up within the reflected a blend of psycho-education and therapeutic emotional support, family and was clearly very sensitive to her younger sisters’ success. She with some discussion of behavioural management strategies as described resented her mother for restricting her independence, but at the same time above. wanted to be with her mother because she felt safe. She had been success- Sessions with Kate were primarily about gaining a clearer under- fully participating in a voluntary work placement, but in recent weeks had standing of her perspective and the changes she wanted to make. This stopped attending because of increased seizure frequency, and was at home included her aspirations for independence, her frustration with her disabili- with her mother most of the time. ties and the limitations on her life, and her distress and confusion about Kate had been in a relationship with Neil for five years. Neil was in being different to others. As Kate had limited self-awareness of her cogni- his late 40’s and a similar age to Phil. Neil also had a severe brain injury, tive, behavioural and emotional difficulties, some of the work with Kate from a road accident in his late twenties. His sister had epilepsy, and whilst was intended to help her to make more sense of her self. Although, as a Kate and Neil both believed that he could manage and cope with her result of Kate’s very severe memory problems, she was unable to recall seizures, Sarah and Phil disagreed. They disapproved of Neil and did not information from her sessions, she valued these discussions and developed understand why Kate was happy with him. a strong therapeutic relationship with the psychologist. The work appeared to help Kate to feel better understood and to see herself as more adult-like Formulation than before. The joint sessions provided Kate and Sarah with an opportunity to The relationship between Kate and Sarah was markedly variable; it was feed back limited aspects of their individual sessions to each other and to frequently tense, with high levels of expressed emotion, but was also warm discuss issues more openly and safely. The psychological formulation was and loving at other times. An important early observation was that conflict shared with them, and with Phil, with an emphasis on the circular relation- between Kate and Sarah tended to reflect the quality of Sarah’s mood, and ship between their responses and understanding the situation without the that this often created a negative cycle. Kate had a strong tendency to need to blame. Although Kate was unable to understand the formulation mirror the moods and behaviour of people around her, and this was par- fully, she appeared to benefit from the discussion. Sarah was able to accept ticularly evident with Sarah. Sarah was frequently low in mood, particularly the formulation gradually and to work more collaboratively with the psy- following the loss of her work and reduced social contact. An additional chologists as a result. The joint sessions also allowed Kate and her parents contributor was that Sarah stopped taking antidepressant medication as to begin to negotiate with each other and to plan some possible change. soon as she felt better and so was caught in a cycle of relapse and recovery With support, Kate was able to ask her parents for more independ- from depression. It was also evident that spending five weekdays alone ence, for their help in finding her accommodation, and for more time with together at home added to Sarah and Kate’s difficulties. Neil. Sarah and Phil were reluctant but eventually agreed that Kate could Sarah found it difficult to act upon professional advice regarding be- gradually move towards independent living. Sheltered accommodation close havioural management (e.g. ignoring unwanted behaviour), and often to her parents’ home was provided quickly by a local housing association, actively engaged in arguments with Kate, which might have been avoided. and Kate began a gradual transition to living there with Neil. This was a Part of the difficulty for Sarah was that she did not fully understand Kate’s difficult time for Sarah and Phil, reflecting their anxiety about Kate’s safety. cognitive and emotional limitations and often misinterpreted Kate’s prob- However, further psychological involvement allowed some compromises to lematic behaviour as intentional and provocative. This led to further blame be negotiated. For example, Kate began to spend every weekday morning at on Sarah’s part and on-going conflict. Furthermore, in response to advice her mother’s and helped to clean the house. She then rested at her mother’s given about Kate’s behaviour, Sarah invariably reported that Phil, her in the afternoon and joined Neil in town before spending the evening at husband, had already suggested the same idea. Sarah felt that she did not home with him. Neil did their shopping, cooking and laundry, and Kate have the personal resources to follow the advice, whereas Phil could man- cleaned their house. age Kate’s behaviour more positively and they had fewer arguments. This There was less conflict between Kate and Sarah, and when it arose, became a further source of frustration and resentment for Sarah. Kate could go home. She felt better for having a more adult lifestyle and Kate’s verbal aggression and argumentative behaviour often reflected identity. Sarah and Phil recognised that Kate’s dependence has been trans- her frustration with the limitations imposed on her independence by Sarah. ferred to Neil, and found it very hard to let go of their role. Despite her Although Kate usually spent weekends with her partner, the number of parents’ misgivings, there were no serious incidents and the situation other nights she was allowed to stay with him was limited. Sarah believed appeared to be sustainable. that Kate needed to be at home to recover from having less sleep at the The achievement of some distance between Kate and Sarah was weekend and to reduce the risk of seizures triggered by fatigue. Kate critical in breaking the behavioural and emotional cycles they were trapped wanted to live full-time with her partner and to manage a household with in, and that bound them together. This was followed by a renewal of him, but her mother believed that this would have disastrous consequences contact between them that was more positive, and included an escape for her epilepsy. Sarah also believed that Kate was too disabled and too route. Kate and Sarah both reported a gradual increase in self-confidence vulnerable in other domains to live independently. and well-being. Kate felt more independent; Sarah felt she was supporting Long discussions with Sarah about Kate’s accident and the changes it Kate but not at the expense of her own health & happiness. caused revealed that Sarah had not accepted or fully understood the losses incurred. Kate was an intelligent and well-adjusted adolescent pre-injury, and as she and her siblings grew older, the gap between them widened Conclusion progressively. Sarah had not yet allowed herself to grieve for these losses and Kate’s disrupted development, and found it difficult to acknowledge This paper has considered some of the evidence for the psychological stress that Kate would not recover further. endured by the close relatives of people who survive a significant brain injury. A number of recently developed psychological interventions de-

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