In order to perform at top levels, elite athletes have to both protect and risk their health at the same time. Adolescent elite athletes have the additional challenge of coping with substantial physical, psychological and social transformations. The contradictory phenomenon of protecting and risking the adolescent athletes' health in sports challenges the development of health promotion and protection strategies. The GOAL Study (German Young Olympic Athletes' Lifestyle and Health Management Study) analyzes the individual and organizational management of health in adolescent elite sports.
We combine quantitative and qualitative approaches in a mixed-method study. This allows us to gather a broad range of representative information on squad athletes from all Olympic disciplines as well as in-depth information on four selected Olympic disciplines (artistic gymnastics, biathlon, handball and wrestling). Within the quantitative section we attempt to identify the young athletes' health and nutrition behavior, their subjective health state and their lay health representations, health-related social networks, and structures of medical attendance. 1138 national team level athletes born between 1992 and 1995 from 51 Olympic disciplines responded to the questionnaire (response rate: 61,75%). The qualitative section investigates the meaning and relevance of health and nutrition within the athletes' sports specific surroundings, the impact of biographic backgrounds on individual health behavior, and sports specific cultures of health, nutrition and risk. We interviewed 24 athletes and 28 coaching and medical experts, and carried out 14 multi-day participant observations at training sessions and competitions.
The studies' results will serve as the basis for developing tailored health promotion strategies to be in cooperation with German elite sports associations.
Keywords: health management, elite sports, adolescent athletes, health promotion, health behavior, lay health representations, attitude to health, subjective health state, health cultures, risk behavior, risk-taking, eating disorders, self-medication, mixed-method, social networks
Competing at top levels causes athletes to risk their health by pushing their physical and mental limits, both in training and competition. Difficulties may arise in managing potential health risks such as overtraining, malnutrition, drug abuse and playing hurt. In competitive sports, good health is the necessary foundation for developing peak athletic performance. This phenomenon of protecting and risking the athletes' health challenges the development of health promotion and protection strategies, especially for young athletes [1,2].
Adolescents are normally hardly concerned with their health. At the same time they have to cope with substantial physical, psychological and social developments. Considering this sensitive phase of development it is therefore imperative to provide young elite athletes effective structures for promoting a healthy and successful sports career.
Based on constructivist approaches [3-6], we consider individuals' representations of their social world, their behavior and biographical developments as a complex interplay between themselves and their different social systems. Against this background, we assume that subjective health concepts and theories as summarized in the expression 'lay health representations', largely influence individuals' health-related behavior and subjective health state [7-9].
The lay health representations of athletes are generally influenced by their social networks (e.g., general conditions of their sport or their sports associations' medical treatment offers) and shaped by significant life events which may lead them to focus on specific health-related topics like prevention or nutrition. Thus, the athletes' lay health representations and the resulting health-related behavior are subject to ongoing changes over the course of their career .
Most studies concerning the young athletes' health deal with sports specific injuries and illnesses [10-12] and health-related behaviors such as disordered eating , (recreational) drug use  and dietary supplement use [15,16]. Additionally some of these studies examine the athletes' attitudes towards specific behaviors like mouthguard use , doping and drug abuse , or competing in pain  Yet, young elite athletes' individual health management, seen as their overall and sports-specific health-related behavior, is still not thoroughly examined. While there are a lot of representative studies dealing with subjective health state, health complaints and risky behavior in adolescents [20,21], a comparison with values of young elite athletes is not possible until now.
Considering the increasing number of sociological studies address the effects of elite sports specific risk cultures on managing pain and injury [22-26], almost nothing is known about the characteristics and mediation of certain risk cultures in youth elite sports and its impact on health promotion or injury prevention strategies. Explorative approaches on elite athletes' accounts on health  or lay health representations  show the significance of career socialization processes in developing a sports specific understanding of threats, health resources and the meaning of future well-being. Likewise, little is understood about the adolescent athletes' lay health representations, its significance for healthy behavior and its development under the influence of formal and informal support systems and social environments. Therefore, still to be thoroughly examined is the role of peers, parents, coaches, healthcare providers, sports associations, and other significant support systems within adolescent elite sports' health protection and promotion processes. Until now, there is alack of health promotion and protection strategies for adolescent elite sports, which are empirically based and developed under participation of the relevant sports associations.
Research questions and methodological approach
The German Young Olympic Athletes' Lifestyle and Health Management Study (GOAL Study; Figure 1) has two central aims: First, to fill the above-mentioned research gaps and second, to develop sports-specific health protection and promotion strategies. In order to create a holistic picture of managing health in German adolescent elite sports, we carried out a nationwide mixed-method study. Combining quantitative and qualitative approaches allowed us to gather a broad range of representative information on squad athletes of all Olympic disciplines as well as in-depth information on four Olympic disciplines: artistic gymnastics, biathlon, handball and wrestling.
Within the quantitative section of the GOAL Study, we attempt to identify the impact of lay health representations (including subjective concepts about nutrition as well) of adolescent athletes, social networks and socio-demographic variables on athletes' health-related behavior and subjective health state on a representative basis.
We aim to answer the following questions within the quantitative study part:
• What kind of lay representations of health do young German Olympic athletes have, and are there any differences related to discipline, age, sex or social background?
• To what extent is the athletes' health-related behavior and subjective health state influenced by lay health representations?
• What health- and especially nutrition-related conflicts are found between young athletes and significant others of their social networks?
• To what extent do health-related behavior and subjective health state differ between adolescent elite athletes and non-athletes?
The qualitative section of the GOAL Study investigates how young athletes, depending on their biographic backgrounds, construct the meaning and relevance of health and nutrition within their sports-specific surroundings. Furthermore, the qualitative analysis allows us to identify sports-specific health cultures and helps us to reconstruct the influence of organizational structures on managing health-related aspects.
Thus, the following questions are the focus of the qualitative study section:
• How do adolescent athletes deal with health and nutrition, and how is health embodied in their everyday life?
• How do biography and social context influence health and nutrition practices within adolescent elite sports?
• Do sports disciplines differ concerning their health and risk cultures, and if yes, how do these cultures influence the young athletes' health and nutrition behavior?
The studies' results will serve as the basis for tailored health promotion strategies to be developed in cooperation with representatives of German elite sports' associations.
Design and Methods
Design, participants and selection criteria
Within the nationwide quantitative study section, we aimed to conduct a complete survey of all young German adolescent elite athletes. Data collection took place between February 2010 and January 2011.
The inclusion criteria were the following: First, participants had to play one of the Winter Olympics 2010 or the Summer Olympics 2012 sports. Second, participants had to be born between the years 1992 and 1995. Third, participants had to compete at least at the lowest national squad (in Germany D/C squad) or a corresponding team level.
In two of the 54 Olympic sports, namely, sailing and bobsledding, no athlete met these criteria. Greco-Roman Wrestling did not agree to partake in the study. Therefore, based on the afore-mentioned inclusion criteria, a total of 1843 athletes from 51 sports were eligible for study participation.
When considering the highly diversified demands and training structures of Olympic sports, we chose a multi-case study approach and focused on four of the Olympic disciplines: artistic gymnastics, biathlon, handball and wrestling.
Based on earlier research [2,28,29], we identified the following criteria to guide our sampling strategy within Olympic sport: (1) discipline's profile (team vs. individual sport; indoor vs. outdoor sport), (2) requirement profile (criteria for scouting, promotion, and acceptance on the national team, participation in national competitions, training guidelines, weight classes), (3) general injury and illness profile, and (4) gender profile. We also looked at feasibility and governing associations' approval to participate in the qualitative study as deciding factors in determining which four disciplines to examine. Seeking information-rich cases, we used maximum variation sampling of these criteria.
Within the four disciplines, we opted for an embedded approach, which allowed us to analyze the athletes' thinking and behavior as well as their social environment structures. We included two different actor types: adolescent elite athletes (I) and different experts (II) from athletes' supportive environment. The participating athletes had to fit the same inclusion criteria as the quantitative sample. We selected experts in regard to their functional role within their sports associations. We also conducted participant observation at training sessions and competitions to provide meaningful insights.
We recruited a total number of 24 German elite athletes (12 females and 12 males) for the qualitative study, aged between 15 and 18 at the time of the participation entry. The athletes were equally distributed across disciplines: biathlon (6), gymnastics (6), handball (6), and wrestling (6). In addition to the 24 athletes, we recruited 28 experts from the participants' social environment, assuring that each defined role within our sampling scheme was covered. In biathlon, the total number of experts is half that of the other disciplines since biathletes of the sampled age group are not gender differentiated within the national training structure.
Most of the experts (16) are men, as no female experts held functional roles on male teams. However, this gender proportion corresponds with the general underrepresentation of women within leading positions in the German sports associations .
Research governance and ethics
The GOAL Study is an interdisciplinary cooperative project funded by the Federal Institute of Sport Science (BISp) in Bonn, Germany. The study's project partners are the University of Tübingen's Institute of Sport Science and Department of Psychosomatic Medicine and Psychotherapy, and the Mannheim Institute of Public Health, Social and Preventive Medicine at Heidelberg University. The Medical Faculty of Tübingen ethics committee's approved the research project (222/2009BO1). As required by the ethics committee, we received written informed consent from each participant, allowing his or her data's inclusion in the study.
Central topics and data collection techniques - quantitative study
Development of the questionnaire
The questionnaire topics based on the aforementioned theoretical assumptions and research questions. Wherever possible, we included already existing, validated subscales or items into the questionnaire. Additionally, our research group chose field-tested scales and items developed and successfully used in previous surveys. If no previous work was available, scales and items were custom-developed for the present questionnaire.
The participants filled in a 24-page bound questionnaire consisting of 85 questions. These questions covered the athletes' health state, health-related behavior, lay health representations including subjective concepts toward nutrition as well as their health-related social networks, socio-demographics, and discipline-specific information.
In order to obtain a general view of the athletes' subjective health state, we also included questions about their physical, mental and social health state. The physical health state addressed sports-related physical pain and any current medical treatment. The questions as to if the athletes were currently injured or ill, and whether they suffered injuries and diseases during the last season were intended to check the individual's time off due to health concerns. Since the phenomenon "doctor hopping" seems to be a common practice within elite sports, we asked participants about the number of physicians consulted for the same injury.
Previous research revealed several psychosocial problems among elite athletes. To see if this problem is present among different disciplines of German elite athletes, we included questions pertaining to the athletes' psychosocial health state into the questionnaire. Since the level of social role completion influences an athlete's psychosocial health state we first asked to which extent the young athletes focused on their role as elite athletes. We followed up this question by asking if they have alternative, non-sports-related goals that could be a source of satisfaction in the case of long-term competitive failure or injuries.
We also screened participants for burnout (Athlete Burnout Questionnaire, German version ), depression (Patient Health Questionnarie-2 (PHQ-2) ) and overall perceived stress concerning school, sports, family, and friends. Additionally, our research team screened for eating disorders using the SCOFF instrument .
In order to check for symptoms of Female Athlete Triad, the study survey included questions concerning BMI, menorrhea and contraception. In this context, we asked the athletes about their willingness to follow a healthy diet and about their options to choose their own food. Previous research revealed that the risk for eating disorders is associated with a high degree of perfectionism, so we included a perfectionism scale into the questionnaire (Eating Disorder Inventory-2 (EDI-2) ), and we screened for body dissatisfaction (Frankfurter Körperkonzeptskalen, (FKKS) ). Body image is an integral part of the self-concept and is an especially relevant concept during adolescence because this is often an emotionally vulnerable phase due to the body's constant changes. Body dissatisfaction is also discussed as a risk factor for eating pathology; however, physical exercise might help prevent or fight against this dissatisfaction.
Lastly, we measured sleeping habits both in everyday life and right before a competition as an alternative indicator for overall psychological stress.
To evaluate the athletes' health-related behavior, we examined both common lifestyle attitudes and sports-specific health-related behavior. Using standardized questions we asked about alcohol consumption , binge drinking  and smoking habits , including the age of onset . We examined nutrition habits using in parts the established field-tested food-frequency scale from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS, ). Also included in the survey were the locations where the athletes ate most of their meals, whether they followed an established diet plan, and if dieting behavior existed over the last year. Furthermore, we examined sports-specific health-related behavior such as dietary supplement use, medication, regeneration as well as sports-specific injury and illness prevention. Besides we asked for weight control practices (Strukturiertes Inventar für Anorektische und Bulimische Störungen (SIAB-S) ).
Cognitive conditions: lay health representations of adolescent elite athletes - subjective health concepts and theories
In order to understand the reasons for health-related behavior, we analyzed the athletes' health representations, meaning subjective health concepts including ideas about nutrition, subjective health theories, and the athletes' willingness to take sport-related risks. Against the background of being highly relevant to elite sports, we also focused on the athletes' general concepts about dietary supplements and the perceived barriers of eating a healthy diet.
Social network: significant others, social support and social pressure
Subjective concepts are influenced, to a great deal, by the surrounding circumstances. Thus an adolescent athlete is surrounded by many people belonging to different social systems, thereby representing varied interests. Therefore, the response to the research question of what extent specific people influence the athletes, should be found through examining their social networks. Survey items covered the athletes' social support network, their medical network, and the network used to acquire dietary supplements. Furthermore, we asked the participants about which information sources they consulted regarding health, nutrition, dietary supplements and performance enhancement possibilities. Since the target group is at a vulnerable age of life, we asked the athletes who they contacted in times of distress. In order to assess the athletes' freedom to make decisions, we included questions about who makes competition-related decisions and questions asking the athletes to describe their coach's leadership style and whether anyone controlled their diet. Additionally, we examined if someone expected the athletes to adhere to contractual commitments such as taking specific dietary supplements or abstaining from smoking, following a diet plan, maintaining or gaining a certain amount of weight or attending specific sports medical examinations. Lastly, we asked the athletes for health-related service offers they use while practicing at an Olympic support center ("Olympiastützpunkt").
Socio-demographics and discipline-specific information
In addition to general socio-demographics such as age, sex, school grade, residence, and language spoken at home, we requested discipline-specific socio-demographic information including in which discipline they compete, at what age the athlete first was accepted onto the squad and the main training location. We asked about training and competition load, previous engagement in another competitive sport and if family members are or were involved in high performance sports. Two questions invited the athletes to tell us any perceived opportunities to improve their health management.
We conducted a three-step pretest to improve the questionnaire's quality and to alert our research team to any potential problems that could arise while filling it in. First, we asked twelve female and ten male adolescent athletes to fill in our questionnaire. All were members of competitive swimming or volleyball squads and practiced between three and six times a week, participated regularly in competitions, and had at some point been part of a state-level squad. Second, we asked eight additional athletes to further adjust the questionnaire. A researcher attended each pretest session. To detect any possible misunderstandings, the participants were instructed to ask a researcher to explain anything and everything they did not understand. The researcher noted each question and comment as well as how long it took each athlete to complete the questionnaire. The third step differed from the preceding steps in that we invited the project advisory board, not youth athletes, to comment on the questionnaire. The advisory board consists of German experts from different sports-related fields. After each step, the given comments and identified problems were included in a new version of the questionnaire. We ended the pretest after three steps because no relevant comments or misunderstandings remained.
The quantitative study questionnaires were accompanied by personal letters for the athletes and their parents, a two-sided document explaining the study, a consent form, and a prepaid self-addressed envelope. We distributed the questionnaires via different distribution channels: 35 associations requested direct mailing and provided the athletes' addresses, which allowed follow ups by mail. 17 associations opted for central distribution, either as forwarded postal reshipments or to be distributed at squad's central training sessions by trainers and coaches. The questionnaire distribution took place between February 2010 and January 2011. The large time frame was due to the varying training schedules or squad establishments within the disciplines and some athletes' absence during the season. This tailored distribution design and large time frame allowed for the inclusion of a total sample comprised of German elite athletes from our target Olympic sports born between 1992 and 1995.
The overall response rate was 61,75% (n = 1138), calculated according to the standard definitions set by the American Association for Public Opinion Research . The discipline-specific response rates differed according to the method of distribution (Table 1). We carried out non-responder analysis on the questionnaires delivered via direct distribution (Table 1) and found that an equal proportion of male (37.8%) and female (37.2%) athletes did not respond. However, there was a difference in response by birth year: While the non-response rate for the birth years 1993 to 1995 was between 35.5% and 37.5%, the non-response rate for the birth year 1992 was 45.0%.
Sport-specific response rates of the quantitative study part
Central topics and data collection techniques - qualitative study
Qualitative study tool development
We used a mix of qualitative methods to collect data, combining participant observations with individual interviews with different actors. This methodology allowed us to account for the complexity of the phenomena, to examine different perspectives of health and nutrition within youth elite sports, and to triangulate the data. We used a range of qualitative research tools including in-depth semi-structured interviews, health-related biographical mappings, health-related network mappings, focused interviews, participant observation, and document analysis.
Interview guides and graphic tools
We established project-specific interview guides for athletes and experts using open-ended questions allowing the interviewees to speak about their experience, knowledge and view on health and nutrition. Interview guides for the in-depth, semi-structured interviews with athletes differed only slightly, reflecting the distinctiveness of their discipline (artistic gymnastic, biathlon, handball and wrestling). For example, in the case of wrestling, we added specific questions on making weight. Furthermore, the athlete interview guides integrated two graphic tools: (1) health-related biographical mapping (Figure 2), which we developed based on earlier research projects in German elite sports [41,2,26] and (2) a health-related network mapping (Figure 3). For the biographical mapping, athletes were given a premade matrix on which they plotted points retracing their career and crucial moments for their well-being. At different moments of the interview, athletes were asked to evaluate and retrace their state of health and the relevance of health and nutrition within their biography. Drawing these personalized health-related maps, gave athletes a more playful tool to visually express their health experience. The same applied to the health-related network maps, used to ask the adolescent athletes about their health-related social networks. The ego-centered network maps  were generated using the software tool VennMaker 1.0 . They consisted of three hierarchical circles positioned around a center point representing the athlete (ego). We asked the interviewed athletes to select people of importance to their health and to plot them within the hierarchical circles. Expert interview guides were adjusted for each sport discipline and work function within the sport (trainer, physician, physiotherapist).
Exemplary biographical mapping, created by an interviewed athlete.
Exemplary health-relevant network card, created by an interviewed athlete.
We piloted the interview guides on adolescent elite athletes and experts prior to executing the study. This allowed us to adjust the question wording of and to tailor interview protocols specific to our research.
Participant observation and document analysis
For each discipline, we triangulated individual interviews with short-term observations during training sessions and competitions. On average, the researcher who conducted the qualitative study spent a week per discipline at German youth elite teams' national team training camps and attended one of their major national or international competitions.
Additionally, we conducted document analysis by gathering further information on key actors, our interview partners and the organizational system, both from print and online sources.
Central topics within the qualitative interviews
Health and nutrition practices
Within the in-depth (semi-structured) athletes' interviews, we explored adolescent athletes' health representations and health and nutrition practices. We also investigated the athletes' ailment and injury experiences because previous research shows that the athletes' biography plays an important role in developing constructions about health. Additionally, the interviewer asked athletes about their ideas for optimal health management. At the end of the interview, we gathered demographic data and background information on the participant's current health state, using the corresponding part of the quantitative study questionnaire.
Additionally, we conducted document analysis by gathering further information on key actors, our interview partners and the organizational system, both from print and online sources.
Health relevant bifurcations in the biography and health-related networks
In order to trace biographic developments, to focus crises and to detect health relevant bifurcations in the interviewed athletes' biography, we integrated the aforementioned biographical mapping method (Figure 2) in athletes' interviews. The mapping process helped the interviewees to recall past events and to reconstruct biographic developments.
Additionally, we used a network map to explore and visualize the athletes' health relevant network (Figure 3).
To reduce any potential desirability bias, every athlete filled in his own questionnaire alone at home or elsewhere (e.g. at a training site) and put it pseudonymized into a prepaid self-addressed envelope. We instituted this step to minimize the possibility of trainers or parents seeing the answers.
A possible limitation of our investigation was its length, with the field research lasting from February 2010 until January 2011. Yet, it is this large time span that gave us the unique possibility of obtaining a complete sample of Olympic sports athletes. Another possible problematic issue is that dependent on the sport, the respective periods of competition and training as well as the demands and stress on the individual athlete varied greatly over the year. Therefore, some athletes may have filled in the questionnaire during demanding times of competition and intense training (e.g., when the survey was conducted centrally), while others may have filled in the questionnaire during a regeneration period. It is conceivable that the time that the investigation took place within an athlete's schedule may have effected answering behavior.
When we asked for drug consumption and other behavioral aspects it is possible that respondents did not answer truthfully for reasons of social desirability. Furthermore, the question about the athletes' use of diuretics in and out of competition could prove to be problematic because the World Anti-doping Code declares diuretics as illicit drugs. We tried to compensate for any problems by including the potential answer, "I haven't done it, but I've thought about it," in order to detect the athletes' willingness to take diuretics.
Only one of the study's authors and a research assistant were assigned to conduct the qualitative study, which guaranteed coherence to the established procedures for interviews and participant observations. In-depth interviews varied considerably in length, lasting between 75 and 150 minutes. Focus interviews with diverse experts lasted, on average, 85 minutes. The following table (Table 2) summarizes the total collected qualitative data material, specifying sampling size and methods applied in all disciplines.
Overview qualitative study data collection
The data analyses of the above mentioned research questions take place in three steps. First, we carry out an univariate absolute and relative frequency count in order to obtain descriptive information on study's participants. In the second step we examine sports discipline, gender differences, and differences between athletes and athletes versus non-athletes using bivariate chi-square tests and unpaired t-tests. Besides we apply multivariate analyses in a third step using the statistical instruments of multiple linear and logistic regression analysis. Therefore, the athletes' are compared to data from the representative reference population of non-athletes (e.g., such reference data is available for KiGGS survey or the PHQ-2). In addition to these comparisons, we compare our data with other samples, for example, with a population showing eating disorders. We will carry out all tests as two-tailed tests with significance levels of p < 0.05 using the statistical analysis system, SPSS PASW Version 18.0.0 (SPSS Inc., Chicago, IL, USA).
Interviews were recorded and transcribed verbatim using a simplified Conversation Analytic transcription system (widely used in German-speaking countries as "GAT"). This enables us to display prosodical and interactional features of the interviews within the transcripts as well as to factor this supplementary information into our analysis. Additionally we expanded the participant observation field notes into "extended accounts" . When we process the interview transcripts and extended accounts, we use the text analysis software MAXQDA to process interview transcripts and extended accounts. Hermeneutic reconstructive analysis produces structured data for each athlete and discipline. We then compare the data to identify over-individual patterns and generative mechanisms.
The GOAL Study aims to provide new evidence about the individual health management among adolescent elite athletes. It thereby deals with a research topic, which up until now, has widely been neglected. The GOAL Study's design exhibits several strengths: First, the study consists of a quantitative survey and qualitative case studies and thus, combines multiple complementary methodological approaches. This allows for a comprehensive description and explanation of adolescent athletes' health-related problems. Second, we conducted the quantitative survey to obtain a complete sample of young German elite athletes, which ensures highly valid and representative data. Another of the study's strengths is the response rate. When compared with similar studies, GOAL Study qualified as "high rate" , enhancing our belief that we will indeed be able to draw valid conclusions from the large and representative data basis. Third, these conclusions will serve as a knowledge basis from which concepts can be transferred, which is also an aim of the GOAL Study. This currently developed transfer concept will provide evidence-based guidelines concerning health management for the athletes themselves and other relevant individuals (e.g. trainers). Since it will be difficult to give instructions and make recommendations for every single sport, we will at least be able to provide guidelines for sports' categories.
The authors declare that they have no competing interests.
AT, SZ and SS were the principal investigators. JM coordinated the field work of the Study. All other authors were scientific co-investigators. KD, AS and KEG conducted the quantitative part and AMS the qualitative part of the study, including field work, data management, statistical analyses and reporting. All authors read and approved the final manuscript.
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Acquired Brain Injury, Social Work and the Challenges of Personalisation
Mark Holloway1,* and Rachel Fyson2
1Head First, Grove Mills, Hawkhurst, Kent, TN18 4AS, UK
2School of Sociology and Social Policy, University of Nottingham, Nottingham, NG7 2RD, UK
*Correspondence to Mark Holloway, Head First, Grove Mills, Cranbrook Road, Hawkhurst, Kent, TN18 4AS, UK. E-mail: email@example.com
Author information ►Article notes ►Copyright and License information ►
Accepted 2015 Apr.
Copyright © The Author 2015. Published by Oxford University Press on behalf of The British Association of Social Workers. All rights reserved.
Br J Soc Work. 2016 Jul; 46(5): 1301–1317.
Published online 2015 Apr 23. doi: 10.1093/bjsw/bcv039
Increasing numbers of adults in the UK are living with acquired brain injury (ABI), with those affected requiring immediate medical care and longer-term rehabilitative and social care. Despite their social needs, limited attention has been paid to people with ABI within the social work literature and their needs are also often overlooked in policy and guidance. As a means of highlighting the challenge that ABI presents to statutory social work, this paper will start by outlining the common characteristics of ABI and consider the (limited) relevant policy guidance. The particular difficulties of reconciling the needs of people with ABI with the prevailing orthodoxies of personalisation will then be explored, with a particular focus on the mismatch between systems which rest on presumptions autonomy and the circumstances of individuals with ABI—typified by executive dysfunction and lack of insight into their own condition. Composite case studies, drawn from the first author's experiences as a case manager for individuals with ABI, will be used to illustrate the arguments being made. The paper will conclude by considering the knowledge and skills which social workers need in order to better support people with ABI.
Keywords: Acquired brain injury, social work, personalisation, executive dysfunction, autonomy
Increasing numbers of people in industrialised nations are living with acquired brain injury (ABI), which is the leading cause of disability in people under forty (Fleminger and Ponsford, 2005). Although the immediate response to brain injury is the preserve of medical doctors and clinicians, social work has an important role to play in both rehabilitative and longer-term support of individuals with ABI. Despite this, both within the UK and internationally, there is limited literature on social work and ABI (Mantell et al., 2012). A search of the ASSIA database for articles with ‘social work’ and ‘brain injury’ or ‘head injury’ in the abstract identified just four articles published within the past decade (Alston et al., 2012; Vance et al., 2010; Collings, 2008; Smith, 2007). Social work practitioners may therefore have little knowledge of how best to support individuals with ABI and their families (Simpson et al., 2002). This article aims to rectify this knowledge deficit by providing information about ABI and discussing some of the challenges which social workers may face when working with this service user group, particularly in the context of personalisation.
A brief introduction to ABI
Whilst UK government data do not provide exact figures, it is estimated that more than one million adults in the UK are currently living with the long-term consequences of brain injuries (Headway, 2014b). Rates of ABI have increased considerably in recent years, with estimated increases over ten years ranging from 33 per cent (Headway, 2014b) to 95 per cent (HSCIC, 2012). This increase is due to a variety of factors including improved emergency response following injury (Powell, 2004); more cyclists interacting with heavier traffic flow; increased participation in dangerous sports; and larger numbers of very old people in the population. According to NICE (2014), the most common causes of ABI in the UK are falls (22–43 per cent), assaults (30–50 per cent) and road traffic accidents (circa 25 per cent), though the latter category accounts for a disproportionate number of more severe brain injuries; other causes of ABI include sports injuries and domestic violence. Brain injury is more common amongst men than women and shows peaks at ages fifteen to thirty and over eighty (NICE, 2014).
International data show similar patterns. For example, in the USA, the Centre for Disease Control estimates that ABI affects 1.7 million Americans each year; children aged from birth to four, older teenagers and adults aged over sixty-five have the highest rates of ABI, with men more susceptible than women across all age ranges (CDC, undated, Traumatic Brain Injury in the United States: Fact Sheet, available online at www.cdc.gov/traumaticbraininjury/get_the_facts.html, accessed December 2014). There is also increasing awareness and concern in the USA about ABI amongst military personnel (see, e.g. Okie, 2005), with ABI rates reported to exceed one-fifth of combatants (Okie, 2005; Terrio et al., 2009). Whilst this article will focus on current UK policy and practice, the issues which it highlights are relevant to many national contexts.
If the causes of ABI are wide-ranging and unevenly distributed across age and gender, the impacts of ABI are similarly diverse. Some people make a good recovery from their brain injury, whilst others are left with significant ongoing difficulties. Furthermore, as Headway (2014b) cautions, the ‘initial diagnosis of severity of injury is not a reliable indicator of long-term problems’. The potential impacts of ABI are well described both in (non-social work) academic literature (e.g. Fleminger and Ponsford, 2005) and in personal accounts (e.g. Crimmins, 2001; Perry, 1986). However, given the limited attention to ABI in social work literature, it is worth listing some of the common after-effects: physical difficulties, cognitive difficulties, impairment of executive functioning, changes to a person's behaviour and changes to emotional regulation and ‘personality’.
For many people with ABI, there will be no physical indicators of impairment, but some may experience a range of physical difficulties including ‘loss of co-ordination, muscle rigidity, paralysis, epilepsy, difficulty in speaking, loss of sight, smell or taste, fatigue, and sexual problems’ (Headway, 2014b), with fatigue and headaches being particularly common after cognitive activity. ABI may also cause cognitive difficulties such as problems with memory and reduced speed of information processing by the brain. These physical and cognitive aspects of ABI, whilst challenging for the individual concerned, are relatively easy for social workers and others to conceptualise and their functional impact comparatively straightforward to assess. Less easy to comprehend and assess are those common consequences of ABI linked to executive difficulties, behavioural and emotional changes or ‘personality’ issues.
‘Executive functioning’ is the term used to describe a set of mental skills that are controlled by the brain's frontal lobe and which help to connect past experience with present; it is ‘the control or self-regulatory functions that organize and direct all cognitive activity, emotional response and overt behaviour’ (Gioia et al., 2008, pp. 179–80). Impairments of executive functioning are particularly common following injuries caused by blunt force trauma to the head or ‘diffuse axonal injuries’, where the brain is injured by rapid acceleration or deceleration, either of which often occurs during road accidents.
The impacts which impairments of executive function may have on day-to-day functioning are diverse and include, but are not limited to, ‘planning and organisation; flexible thinking; monitoring performance; multi-tasking; solving unusual problems; self-awareness; learning rules; social behaviour; making decisions; motivation; initiating appropriate behaviour; inhibiting inappropriate behaviour; controlling emotions; concentrating and taking in information’ (Headway, 2014b). In practice, this can manifest as the brain-injured person finding it harder (or impossible) to generate ideas, to plan and organise, to carry out plans, to stay on task, to change task, to be able to reason (or be reasoned with), to sequence tasks and activities, to prioritise actions, to be able to notice (in real time) when things are going well or are not going well, and to be able to learn from experience and apply this in the future or in a different setting (to be able to generalise learning) (Barkley, 2012; Oddy and Worthington, 2009). All of these difficulties are invisible, can be very subtle and are not easily assessed by formal neuro-psychometric testing (Manchester et al., 2004).
In addition to these difficulties, people with ABI are often noted to have a ‘changed personality’. Loss of capacity for empathy, increased egocentricity, blunted emotional responses, emotional instability and perseveration (the endless repetition of a particular word or action) can create immense stress for family carers and make relationships difficult to sustain. Family and friends may grieve for the loss of the person as they were prior to brain injury (Collings, 2008; Simpson et al., 2002) and higher rates of divorce are reported following ABI (Webster et al., 1999). Impulsive, disinhibited and aggressive behaviour post ABI also contribute to negative impacts on families, relationships and the wider community: rates of offending and incarceration of people with ABI are high (Shiroma et al., 2012) as are rates of homelessness (Oddy et al., 2012), suicide (Fleminger et al., 2003) and mental ill health (McGuire et al., 1998).
The above difficulties are often further compounded by lack of insight on the part of the person with ABI; that is to say, they remain partially or wholly unaware of their changed abilities and emotional responses. Where the lack of insight is total, the individual may be described medically as suffering from anosognosia, namely having no recognition of the changes brought about by their brain injury. However, total loss of insight is rare: what is more common (and more difficult to assess) is an individual having only an ‘intellectual awareness’ of the impact of their injury (Crosson et al., 1989). This means that the person with ABI may be able to describe their difficulties, sometimes extremely well, but this knowledge does not affect behaviour in real-life settings. In this situation, a brain-injured person may be able to state, for example, that they can never remember what they are supposed to be doing, and even to note that a diary is a useful compensatory strategy when experiencing difficulties with prospective memory, but will still fail to use a diary when required. The intellectual understanding of the impairment and even of the compensation required to ensure success in functional settings plays no part in actual behaviour.
Social work and ABI
The after-effects of ABI have significant implications for all social work tasks, including assessing need, assessing mental capacity, assessing risk and safeguarding (Mantell, 2010). Despite this, specialist teams to support people with ABI are virtually unheard of in the statutory sector, and many individuals struggle to get the services they need (Headway, 2014a). Accessing support may be difficult because the heterogeneous needs of people with ABI do not fit easily into the social work specialisms which are commonly used to structure UK service provision (Higham, 2001).
There is a similar absence of recognition at government level: the ABI report aptly entitled A Hidden Disability was published almost twenty years ago (Department of Health and SSI, 1996). It reported on the use of case management to support the rehabilitation of people with ABI, noting that lack of knowledge about brain injury amongst professionals coupled with a lack of recognition of where such individuals ‘sat’ within social services was highly problematic, as brain-injured people often did not meet the eligibility criteria established for other service users. Five years later, a Health Select Committee report commented that ‘The lack of community support and care networks to provide ongoing rehabilitative care is the problem area that has emerged most strongly in the written evidence’ (Health Select Committee, 2000–01, para. 30) and made a number of recommendations for improved multidisciplinary provision. Notwithstanding these exhortations, in 2014, NICE noted that ‘neurorehabilitation services in England and Wales do not have the capacity to provide the volume of services currently required’ (NICE, 2014, p. 23).
In the absence of either coherent policy or adequate specialist provision for people with ABI, the most likely point of contact between social workers and brain-injured people is via what is varyingly known as the ‘physical disability team’; this is despite the fact that physical impairment post ABI is often not the main difficulty. The support an individual with ABI receives is governed by the same eligibility criteria and the same assessment protocols as other recipients of adult social care, which at present means the application of the principles and bureaucratic practices of ‘personalisation’. As the Adult Social Care Outcomes Framework 2013/2014 clearly states:
The Department remains committed to the 2013 objective for personal budgets, meaning everyone eligible for long term community based care should be provided with a personal budget, preferably as a Direct Payment, by April 2013 (Department of Health, 2013, emphasis added).
However, it appears that the particular needs of adults with ABI have not been considered: the Adult Social Care Outcomes Framework 2013/2014 contains no references to either ‘brain injury’ or ‘head injury’, though it does name other groups of adult social care service users. Issues relating to ABI in a social care context remain, accordingly, overlooked and under-resourced. The unspoken assumption would appear to be that this minority group is simply too small to warrant attention and that, as social care is now ‘personalised’, the needs of people with ABI will necessarily be met. However, as has been argued elsewhere (Fyson and Cromby, 2013), ‘personalisation’ rests on a particular notion of personhood—that of the autonomous, independent decision-making individual—which may be far from typical of people with ABI or, indeed, many other social care service users.
Guidance which has accompanied the 2014 Care Act (Department of Health, 2014) mentions brain injury, alongside other cognitive impairments, in relation to mental capacity. The guidance notes that people with ABI may have difficulties in communicating their ‘views, wishes and feelings’ (Department of Health, 2014, p. 95) and reminds professionals that:
Both the Care Act and the Mental Capacity Act recognise the same areas of difficulty, and both require a person with these difficulties to be supported and represented, either by family or friends, or by an advocate in order to communicate their views, wishes and feelings (Department of Health, 2014, p. 94).
However, whilst this recognition (however limited and partial) of the existence of people with ABI is welcome, neither the Care Act nor its guidance provides adequate consideration of the particular needs of people with ABI.
In the lingua franca of health and social care, and despite their frequent administrative categorisation as a ‘physical disability’, people with ABI fit most readily under the broad umbrella of ‘adults with cognitive impairments’. However, their particular needs and circumstances set them apart from people with other types of cognitive impairment: unlike learning disabilities, ABI does not necessarily affect intellectual ability; unlike mental health difficulties, ABI is permanent; unlike dementia, ABI is—or becomes in time—a stable condition; unlike any of these other forms of cognitive impairment, ABI can occur instantaneously, after a single traumatic event.
However, what people with ABI may share with other cognitively impaired people are difficulties with decision making (Johns, 2007), including problems with everyday applications of judgement (Stanley and Manthorpe, 2009), and vulnerability to abuses of power by those around them (Mantell, 2010). It is these aspects of ABI which may be a poor fit with the independent decision-making individual envisioned by proponents of ‘personalisation’ in the form of individual budgets and self-directed support. As various authors have noted (e.g. Fyson and Cromby, 2013; Barnes, 2011; Lloyd, 2010; Ferguson, 2007), a model of support that may work well for cognitively able people with physical impairments is being applied to people for whom it is unlikely to work in the same way. For people with ABI, particularly those who lack insight into their own difficulties, the problems created by personalisation are compounded by the involvement of social work professionals who typically have little or no knowledge of complex impacts of executive impairment.
ABI and personalisation
There is little doubt that adult social care is currently under extreme financial pressure, with increasing demand and real-term cuts in budgets (LGA, 2014). At the same time, the personalisation agenda is changing the mechanisms of care delivery in ways which may present particular difficulties for people with ABI. Personalisation has spread rapidly across English social care services, with support from sector-wide organisations and governments of all political persuasion (HM Government, 2007; TLAP, 2011). The idea is simple: that service users and those who know them well are best able to understand individual needs; that services should be fitted to the needs of each individual; and that each service user should control their own personal budget and, through this, control the support they receive. However, given the reality of reduced local authority budgets and increasing numbers of people needing social care (CfWI, 2012), the outcomes hoped for by advocates of personalisation (Duffy, 2006, 2007; Glasby and Littlechild, 2009) are not always achieved. Research evidence suggested that this way of delivering services has mixed results, with working-aged people with physical impairments likely to benefit most (IBSEN, 2008; Hatton and Waters, 2013). Notably, none of the major evaluations of personalisation has included people with ABI and so there is no evidence to support the effectiveness of self-directed support and individual budgets with this group.
Critiques of personalisation abound, arguing variously that personalisation shifts risk and responsibility for welfare away from the state and onto individuals (Ferguson, 2007); that its enthusiastic embrace by neo-liberal policy makers threatens the collectivism necessary for effective disability activism (Roulstone and Morgan, 2009); and that it has betrayed the service user movement, shifting from being ‘the solution’ to being ‘the problem’ (Beresford, 2014). Whilst these perspectives on personalisation are useful in understanding the broader socio-political context of social care, they have little to say about the specifics of how this policy is affecting people with ABI. In order to begin to address this oversight, Table 1 reproduces some of the claims made by advocates of individual budgets and self-directed support (Duffy, 2005, as cited in Glasby and Littlechild, 2009, p. 89), but adds to the original by offering an alternative to the dualisms suggested by Duffy and highlights some of the confounding factors relevant to people with ABI.
Social care and self-directed support: rhetoric, nuance and ABI
ABI: case study analyses
Abstract conceptualisations of social care support, as in Table 1, can at best provide only limited insights. In order to demonstrate more clearly the how the confounding factors identified in column 4 shape everyday social work practices with people with ABI, a series of ‘constructed case studies’ are now presented. These case studies have each been created by combining typical scenarios which the first author has experienced in his practice. None of the stories is that of a particular individual, but each reflects elements of the experiences of real people living with ABI.
Case study one: Tony—assessment of need
Now in his early twenties, Tony acquired a severe brain injury at the age of sixteen when he was hit by a car. After six weeks in hospital, he was discharged home with outpatient neurology follow-up. Since the accident, Tony has had significant problems with idea generation, problem solving and planning. He is able to get himself up, washed and dressed, but does not initiate any other activities, including making food or drinks for himself. He is very passive and is not engaged in any regular activities. Tony has no physical impairment, no obvious loss of IQ and no insight into his ongoing difficulties.
As he entered adulthood, Tony's family were aware that he had not developed as they would have expected. They have met all his care needs, provided his meals, managed his finances, etc., but have found this an increasing strain. Following a chance conversation with a neighbour, they contacted their local Headway and were advised to request a care needs assessment from their local authority. There was initially difficulty getting Tony assessed, as staff on the telephone helpline stated that Tony was not entitled to an assessment because he had no physical impairment. However, with persistence, an assessment was made by a social worker from the physical disabilities team. The assessment concluded that, as all Tony's needs were being met by his family and Tony himself did not see the need for any input, he did not meet the eligibility criteria for social care. Tony was advised that he would benefit from going to college or finding employment and was given leaflets about local colleges.
Tony's family challenged the assessment, stating they could not continue to meet all of his needs. The social worker responded that until there was evidence of risk, social services would not act, but that, if Tony were living alone, then he might meet eligibility criteria, in which case Tony could manage his own support via a personal budget. Tony's family would like him to move out and begin a more adult, independent life but are adamant that support must be in place before any such move takes place because Tony is unable to manage his own support. They are unwilling to make him move into his own accommodation and leave him to fail to eat, take medication or manage his finances in order to generate the evidence of risk required for support to be forthcoming. As a result of this impasse, Tony continues to live at home and his family continue to struggle to care for him.
From Tony's perspective, a number of problems with the existing system are clearly evident. His difficulties start from the lack of services after discharge from hospital, but are compounded by the gate-keeping function of the call centre and the lack of skills and knowledge of the social worker. Because Tony does not show outward signs of disability, both the call centre worker and the social worker struggle to understand that he needs support. The person-centred approach of relying on the service user to identify his own needs is unsatisfactory because Tony lacks insight into his condition.
This problem with non-specialist social work assessments of ABI has been highlighted previously by Mantell, who writes that:
Often the person may have no physical impairment, but lack insight into their needs. Consequently, they do not look like they need any help and do not think that they need any help, so not surprisingly they often do not get any help (Mantell, 2010, p. 32).
The needs of people like Tony, who have impairments to their executive functioning, are best assessed over time, taking information from observation in real-life settings and incorporating evidence gained from family members and others as to the functional impact of the brain injury. By resting on a single assessment, the social worker in this case is unable to gain an adequate understanding of Tony's needs because, as Dustin (2006) evidences, such approaches devalue the relational aspects of social work practice.
Case study two: John—assessment of mental capacity
John already had a history of substance use when, aged thirty-five, he suffered a severe brain injury in a road traffic accident. John spent eighteen months in hospital and an NHS rehabilitation unit before being discharged to a nursing home near his family. John has no visible physical impairments but does have lung and heart conditions that require regular monitoring and careful management. John does not believe himself to have any difficulties, but shows signs of substantial executive difficulties: he is often irritable, can be very aggressive and does not eat or drink unless sustenance is provided for him.
One day, following a visit to his family, John refused to return to the nursing home. This resulted in John living with his elderly father for several years. During this time, John began drinking very heavily and his drunken aggression led to frequent calls to the police. John received no social care services as he rejected them, sometimes violently. Statutory services stated that they could not be involved, as John did not wish them to be—though they had offered a personal budget. Concurrently, John's lack of self-care led to frequent visits to A&E where his decision not to follow medical advice, not to take his prescribed medication and to refuse all offers of assistance were repeatedly assessed by non-brain-injury specialists to be acceptable, as he was defined as having capacity.
Eventually, after an act of serious violence against his father, a police officer called the mental health team and John was detained under the Mental Health Act. Staff on the inpatient mental health ward referred John for assessment by brain-injury specialists who identified that John lacked capacity with decisions relating to his health, welfare and finances. The Court of Protection agreed and, under a Declaration of Best Interests, John was taken to a specialist brain-injury unit. Three years on, John lives in the community with support (funded independently via litigation and managed by a team of brain-injury specialist professionals), he is very engaged with his family, his health and well-being are well managed, and he leads an active and structured life.
John's story highlights the problematic nature of mental capacity assessments. John was able, on repeated occasions, to convince non-specialists that he had capacity and that his expressed wishes should therefore be upheld. This is in accordance with personalised approaches to social care. Whilst assessments of mental capacity are seldom straightforward, in a case such as John's, they are particularly problematic if undertaken by individuals without knowledge of ABI.
The difficulties with mental capacity assessments for people with ABI arise in part because IQ is often not affected or not greatly affected. This means that, in practice, a structured and guided conversation led by a well-intentioned and intelligent other, such as a social worker, is likely to enable a brain-injured person with intellectual awareness and reasonably intact cognitive abilities to demonstrate adequate understanding: they can frequently retain information for the period of the conversation, can be supported to weigh up the pros and cons, and can communicate their decision. The test for the assessment of capacity, according to the Mental Capacity Act and guidance, would therefore be met. However, for people with ABI who lack insight into their condition, such an assessment is likely to be unreliable.
There is a very real risk that, if the capacity of someone with ABI is measured in the abstract and extrinsically governed environment of a capacity assessment, it will be incorrectly assessed. In such situations, it is frequently the stated intention that is assessed, rather than the actual functioning which occurs outside the assessment setting. Furthermore, and paradoxically, if the brain-injured person identifies that they require support with a decision, then this may be viewed—in the context of a capacity assessment—as a good example of recognising a deficit and therefore of insight. However, this recognition is, again, potentially an abstract that has been supported by the process of assessment (Crosson et al., 1989) and may not be evident under the more intensive demands of real life.
Case study three: Yasmina—assessment of risk and need for safeguarding
Yasmina suffered a severe brain injury following a fall from height aged thirteen. After eighteen months in hospital and specialist rehabilitation, she was discharged home despite the fact that her family were known to children's social services for alleged neglect. Following the accident, Yasmina became a wheelchair user; she is very impulsive and disinhibited, has a severe impairment to attention, is dysexecutive and suffers periods of depression. As an adult, she has a history of not maintaining engagement with services: she repeatedly rejects input and then, within weeks, asks for support. Yasmina can describe, fairly clearly, all of her difficulties, though lacks insight and so cannot use this knowledge to change her behaviours or increase her functional independence.
In her late twenties, Yasmina met a long-term mental health service user, married him and became pregnant. Yasmina was very child-focused and, as the pregnancy progressed, maintained regular contact with health professionals. Despite being aware of the histories of both parents, the pre-birth midwifery team did not contact children's services, later stating this was because they did not wish to be prejudiced against disabled parents. However, Yasmina's GP alerted children's services to the potential problems and a pre-birth initial child-safeguarding meeting was convened, focusing on the possibility of removing the child at birth. However, upon face-to-face assessment, the social worker was reassured that Yasmina had insight into her challenges, as she was able to describe what she would do to limit the risks created by her brain-injury-related difficulties. No further action was recommended.
The hospital midwifery team were so alarmed by Yasmina and her husband's presentation during the birth that they again alerted social services. They were told that an assessment had been undertaken and no intervention was required. Despite being able to agree that she could not carry her baby and walk at the same time, Yasmina repeatedly attempted to do so. Within the first forty-eight hours of her much-loved child's life, Yasmina fell twice—injuring both her child and herself. The injuries to the child were so serious that a second child-safeguarding meeting was convened and the child was removed into care. The local authority plans to apply for an adoption order. Yasmina has been referred for specialist support from a head-injury service, but has lost her child.
In Yasmina's case, her lack of insight has combined with professional lack of knowledge to create situations of risk for both herself and her child. Opportunities for effective specialist assessment which might have led to reduced risk for Yasmina were repeatedly missed. This occurred when she was returned as a vulnerable brain-injured child to a potentially neglectful home, again when engagement with services was not actively supported, again when the pre-birth midwifery team placed too strong an emphasis on abstract notions of disabled parents' rights, and yet again when the child protection social worker did not appreciate the distinction between Yasmina's intellectual ability to describe potential risk and her functional ability to avoid such risks.
Loss of insight will, by its very nature, prevent accurate self-identification of impairments and difficulties; or, where difficulties are correctly identified, loss of insight will preclude accurate attribution of the cause of the difficulty. These problems are an established function of loss of insight (Prigatano, 2005), yet, if professionals are unaware of the insight problems which may be created by ABI, they will be unable, as in Yasmina's case, to accurately assess the service user's understanding of risk. Furthermore, there may be little connection between how an individual is able to talk about risk and how they will actually behave.
Impairment to executive skills such as reasoning, idea generation and problem solving, often in the context of poor insight into these impairments, means that accurate self-identification of risk amongst people with ABI may be considered extremely unlikely: underestimating both needs and risks is common (Prigatano, 1996). This problem may be acute for many people with ABI, but is not limited to this group: one of the difficulties of reconciling the personalisation agenda with effective safeguarding is that self-assessment would ‘seem unlikely to facilitate accurate identification of levels of risk’ (Lymbery and Postle, 2010, p. 2515).
Discussion and conclusion
ABI is a complex, heterogeneous condition that can impact, albeit subtly, on many of the skills, abilities and attributes used to negotiate one's way through life, work and relationships. Brain-injured people do not leave hospital and return to their communities with a full, clear and rounded picture of how the changes caused by their injury will affect them. It is only by endeavouring to return to pre-accident functioning that the impacts of ABI can be identified. Difficulties with cognitive and executive impairments, particularly reduced insight, may preclude people with ABI from easily developing and communicating knowledge of their own situation and needs. These impacts and resultant needs can be seen in all international contexts and negative impacts are likely to be exacerbated when people with ABI receive limited or non-specialist support.
Whilst the highly individual nature of ABI might at first glance appear to suggest a good fit with the English policy of personalisation, in reality, there are substantial barriers to achieving good outcomes using this approach. These difficulties stem from the unhappy confluence of social workers being largely ignorant of the impacts of loss of executive functioning (Holloway, 2014) and being under instruction to progress on the basis that service users are best placed to know their own needs. Effective and accurate assessments of need following brain injury are a skilled and complex task requiring specialist knowledge. Explaining the difference between intellectual awareness and insight is stock-in-trade for brain-injury case managers working with non-brain-injury specialists. An effective assessment needs to incorporate what is said by the brain-injured person, take account of third-party information and take place over time. Only when these conditions are met can the impacts of an injury be meaningfully identified, by generating knowledge regarding the gaps between what is said and what is done. One-off assessments of need by non-specialist social workers followed by an expectation to self-direct one's own services are unlikely to deliver good outcomes for people with ABI. And yet personalised practice is essential.
ABI highlights some of the inherent tensions and contradictions between personalisation as practice and personalisation as a bureaucratic process. Personalised practice remains essential to good outcomes: it ensures that the unique situation of each person with ABI is considered and that they are actively involved in deciding how any necessary support can most usefully be integrated into their lives. By contrast, personalisation as a bureaucratic process may be highly problematic: privileging notions of autonomy and self-determination, at least in the early stages of post-injury rehabilitation, is likely to be at best unrealistic and at worst dangerous. Other authors have noted how personal budgets and self-directed services ‘should not be a “one-size fits all” approach’ (Netten et al., 2012, p. 1557, emphasis added), but current social work practice nevertheless appears bound by these bureaucratic processes. This rigid and bureaucratised interpretation of ‘personalisation’ affords limited opportunity for the long-term relationships which are needed to develop truly personalised practice with and for people with ABI.
A diagnosis of ABI should automatically trigger a specialist assessment of social care needs, which takes place over time rather than as a one-off event, and involves sufficient face-to-face contact to enable a relationship of trust to develop between the specialist social worker, the person with ABI and their social networks. Social workers in non-specialist teams may not be able to challenge the prevailing hegemony of ‘personalisation as self-directed support’, but their practice with individuals with ABI can be improved by gaining a better understanding of some of the complex outcomes which may follow brain injury and how these impact on day-to-day functioning, emotion, decision making and (lack of) insight—all of which challenge the application of simplistic notions of autonomy. An absence of knowledge of their absence of knowledge of ABI places social workers in the invidious position of both not knowing what they do not know and not knowing that they do not know it. It is hoped that this article may go some small way towards increasing social workers' awareness and understanding of ABI—and to achieving better outcomes for this often invisible group of service users.
With thanks to Jo Clark Wilson.
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