Abstract
Previous studies have demonstrated that being exposed to challenging behaviour in services of care can have a negative impact on staff. Recently, challenging behaviour has been linked to people with autism spectrum disorders; however, little research has been aimed at exploring staff’s experiences of facing such behaviour in services for autism spectrum disorders in particular. A qualitative study using interpretative phenomenological analysis was conducted. This method involves thorough exploration of experiences revealed by individuals. A purposive sample (N = 10) was used. Participants were involved in semi-structured interviews which were later analysed according to the guidelines by Smith and Osborn. Four themes were discovered: intense mental and physical engagement, importance of adaptive coping, ambiguous experience of failure and achievement and destructive emotional reactions. Being exposed to challenging behaviour in services for autism spectrum disorders is a complex multi-component experience. The present results allow some insight into personal worlds of staff and might be useful for improving their working environment as well as ensuring a higher quality of care for service users.
Keywords
Introduction
Challenging behaviour (CB) might be experienced in both clinical settings and everyday situations. It has been most frequently defined as
culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit the use of, or result in the person being denied access to, ordinary community facilities (Emerson, 1995).
Very often, CB has been conceptualised in terms of its impact on people providing the support. Research on staff who work in services for elderly clients and people with intellectual disabilities (IDs) has revealed high levels of exposure to such behaviours (Astrom et al., 2004; Emerson, 1995). In recent years, CB has also been linked to autism spectrum disorders (ASDs). ASDs are developmental disorders usually characterised by poor social interaction, lack of communication and restrictive/repetitive behaviours (American Psychiatric Association (APA), 2000).
The literature on CB in the autistic population suggests physical aggression and self-injurious behaviour (SIB), with unusual and repetitive behaviours being most common (McClintock et al., 2003; Shattuck et al., 2007); however, some inconsistencies exist. In one of the earliest studies that provide prevalence estimates of CB in children with ASDs, 47% of the sample was shown to be involved in tantrums, followed by aggression towards others (43%) and destruction of property (34%) (Ando and Yoshimura, 1979). Furthermore, a longitudinal study that followed up adolescents and adults with autism for 4½ years has identified unusual or repetitive behaviours being most frequent, followed by inattentive behaviour; socially offensive, uncooperative behaviours; SIB; and destruction of property. While the inconsistencies among the two studies could be accounted for by different methodologies, the age of a sample (Lecavalier et al., 2006), and definitions of both ASD and CB used, the actual prevalence of different types of CBs remains unclear. The research on the overall prevalence of CB in ASDs has reported it to vary between 32% (Kanne and Mazurek, 2011) and 94% (Jang et al., 2011), suggesting that here too, little agreement exists. Also, fewer studies have looked into adult populations, leaving this area rather unexplored. Nevertheless, such research provides evidence to the claims that autism might be a risk factor for CB (McClintock et al., 2003).
Furthermore, the issue might be exaggerated by the current increase in the number of diagnoses of ASD. An article that has compared various studies on incidence and prevalence of ASD since 1999 has demonstrated a steady increase in cases (Campbell et al., 2011). Such increase in the number of ASD diagnoses as well as the end of the deinstitutionalisation process in the United Kingdom means that both family carers and support staff might often be exposed to various types of CB when dealing with people diagnosed with ASDs (Fombonne et al., 2011; Hamlin and Oakes, 2008). According to Campbell et al. (2011), the increase in cases of ASDs could be superficial, resulting from varying definitions of ASDs among different studies, changing diagnostic criteria, the methods that are used to choose a sample, changes in public awareness and policies on service provision. Nevertheless, the increased number of diagnoses means that social care organisations are experiencing higher pressures as a result of real or superficial ‘autism epidemics’.
While caring for a child with ASDs and CB has been previously linked to an increased number of depressive symptoms and higher levels of emotional distress in parents (Barker et al., 2011; Singer, 2006), fewer studies have looked into the experiences of staff supporting people with ASDs and CB. Although the research suggests that around two-thirds of people with ASDs might be living away from home, the literature on staff experiences when exposed to CB have mainly been restricted to services for IDs and elderly care (Krauss et al., 2005). In such services, anger, anxiety and fear have been reported most frequently by staff (Franz et al., 2010; Lambrechts et al., 2009). Additionally, anxiety and fear have been linked to aggressive and destructive behaviours but not other types of CB; this suggests that it is the specific type of CB which might impact a caregiver’s experience (Lambrechts et al., 2009). Other reactions, including helplessness, sadness, powerlessness and insufficiency, have also been reported (Astrom et al., 2004; Franz et al., 2010). Qualitative research has supported these findings (Hastings, 1995); anxiety as well as anticipation and normalisation of violence have been often discussed (Campbell, 2011; Ryan and Poster, 1993). CB might be strongly linked to negative emotional reactions in carers, and the qualitative research is able to reveal a side of the job that might not otherwise be captured by quantitative studies.
Although an extensive literature exists on staff caring for clients with IDs and CB, less attention has been devoted towards understanding the impact on carers who support people with ASDs and CB. Most of such research has been conducted in Sweden, and involved staff who worked with both ASDs and IDs making it problematic to generalise or compare these findings cross-culturally. For example, a Swedish study that interviewed 149 nurses working in an ID service found that together with ASDs, Down’s syndrome diagnosis has been most common (Lundstrom et al., 2007b). The study revealed that 31% of the sample have been exposed to CB; further analysis demonstrated that out of those who reported experiencing CB, 76% reported feeling powerless, 62% reported feeling insufficient, 57% reported feeling angry, 8% have reported feelings of guilt and 5% have reported feelings of shame. In another qualitative study where care workers in a staffed housing service for clients with IDs (most common diagnoses – Down’s syndrome and ASD) were interviewed, two major themes emerged: ‘falling apart’ and ‘keeping it together’ (Lundstrom et al., 2007a). The theme ‘falling apart’ involved feelings of anger, sadness, fear, powerlessness and decreased perceptions of time, while the theme ‘keeping it together’ summarised the positive reactions of pleasure, respect as well as normalisation of violence. It seems that staff who work in services for both ASDs and IDs might share similar reactions to those working with IDs only; however, such reactions might be a product of CB exhibited by clients with IDs, and so, the real impact of caring for people with CB and ASDs remains unclear.
An attempt to understand the impact of CB in services for ASDs in particular has also been made in Sweden, where six nurses working with adults with ASDs and CB were interviewed (Hellzen and Asplund, 2002). The staff worked in a strictly routine environment where support for a highly challenging individual with ASDs was provided. The analysis revealed two themes: ‘being trapped in reality’ and ‘striving to reach an ideal’. In the first theme, participants frequently spoke of the structured daily activities and their importance for a better quality of care; nevertheless, such a care environment also meant that they were feeling lonely and powerless. In the second theme, nurses expressed their desire to be accepted as professionals by their colleagues and society as well as friends and carers by the service user. The findings demonstrated that staff working in services for people with ASDs might experience very different reactions to those working in both ASD and ID care.
From the research reviewed above, it becomes apparent that CB might be experienced differently by the staff work with clients who have either IDs or ASDs as compared to the workers who are only involved with clients diagnosed with ASDs. Very little research has been conducted to explore this observation or the reasons that could possibly account for the different experiences. Most of the articles involved staff who deal with CB in services for both ASDs and IDs. Such study designs could have had an effect on the overall findings, as the experience of different challenges might be blended. Considering that individuals with ASDs and normal levels of intelligence might have very different support needs to those with IDs, their behaviours around staff and in a community are likely to differ. Clients with Asperger’s disorder or high-functioning autism might bear challenges that are more emotionally demanding or more difficult to handle as a result of their higher intellectual capacity. For the same reasons, it might be more difficult to perceive their CB as non-personal to staff and therefore more difficult to cope with. It is possible that the verbally offensive behaviours aimed at staff might be more prevalent in this client group, as a result of their ability to use verbal communication to express aggression. This is rarely present when dealing with highly intellectually impaired individuals. No study so far aimed to explore such reasoning in more detail. Considering the structure of care services in the United Kingdom, it is common to have both clients with ASDs and IDs being supported by the same staff. It seems that there is no research currently available that examines the experiences of staff who are only involved with clients with ASDs. Furthermore, no research attention has been given to those staff who are supporting highly intelligent yet challenging autistic individuals. Therefore, the purpose of this study is to broaden our understanding of the issues faced by staff who are supporting people with ASDs and, in particular, clients with high-functioning autism. Considering that the presence and impact of CB are based on individual perceptions (Emerson, 1995), the aim of this study is to explore the personal accounts of staff.
Method
Methodology
The research question is highly dependent on personal experience and can only be appropriately addressed by thorough examination. Interpretative phenomenological analysis (IPA) (Smith, 1996) was chosen as the most suitable framework for data analysis. This method involves thorough exploration and aims to illuminate the process of how individuals perceive and interpret their personal and social worlds (Smith and Osborn, 2008).A smaller sample of participants with the shared characteristics or experiences, which would correspond with a research question, is normally involved (Smith, 1996). Through the use of semi-structured interviews, a rich account of personal experiences is obtained; the method is therefore aimed to understand how a person thinks of and deals with a complex and continuous challenge that they are faced with. As opposed to quantitative methodologies, IPA aims to provide a rich account of subjective experiences of a participant allowing some in-depth understanding of an area in question.
Design and sample
A qualitative study using IPA (Smith, 1996) was conducted. Purposive sampling was used with 10 participants taking part. The sample size was chosen following the guidelines by Smith and Osborn (2008). According to Smith and Osborn (2008), using a smaller number of participants is necessary in order to correspond with the idiographic framework of IPA and allow a thorough case-by-case analysis of individual accounts. Having fewer participants allows to promote the depth of analysis, which would not be possible with a larger number of participants involved. For that reason, 10 participants were involved in this study. The sample comprised 7 males and 3 females (mean age = 39.6) who work in services specifically aimed to support people with ASDs. Their average length of experience in services for ASDs and CB was 4 years and 3 months. Eight participants worked full-time hours and two worked part-time. Three participants were employed as managers of the service implying a higher level of responsibility. The inclusion criterion was present or recent work experience of facing CB when supporting clients with ASDs. The staff in the study were only involved with clients diagnosed with ASDs. The diagnoses of ASDs and the presence of CB were confirmed during the first stage of the recruitment process, that is, when identifying the managers of appropriate services. During each interview, participants were asked to validate the information provided by their managers in order to ensure their involvement with clients with ASDs and CB. This step was necessary as the presence of CB might be dependent on personal perceptions (Emerson, 1995). In the final sample, there were six participants who worked as support workers in an organisation in Wales who were engaged with a support for two physically challenging non-verbal clients with ASDs. Another four participants were recruited from an organisation in Scotland; three of them worked with clients who exhibited both verbal and physical abuse, and one was supporting a client who was physically challenging. Such a sample involved a range of behaviours varying from non-verbal physical challenges to intense verbal abuse, allowing a broad representation of CB that might be exhibited by people with ASDs (Shattuck et al., 2007). Four of the participants were engaged with clients who had a diagnosis of Asperger’s disorder and were high-functioning individuals of average intelligence, as identified by the study participants. The other six participants were engaged with clients diagnosed with autistic disorder and abnormal cognitive functioning, including two clients with no verbal communication, as notified by the participants. The client group primarily comprised adult males with one adult female involved.
Data collection
Ethical approval was granted by the Ethics Committee at the University of Glasgow. The process of recruitment was carried out in two stages: first, two organisations, one in Scotland and one in Wales, were identified as corresponding to the inclusion criterion. The managers were contacted with the information about the study and the invitation to participate. During the second stage, the managers were asked to distribute a plain language statement (PLS) to their staff and arrange suitable interview times for those who wished to participate. A total of 10 semi-structured interviews lasting 40 min on average were conducted (totalling 6 h and 36 min of data). Six interviews took place at the offices of the participating organisations, and four were carried out at the University of Glasgow. Two sets of questions were prepared for the purpose of the data collection. The first set aimed to collect demographic information that involved participants’ age, related work experience and the amount of hours that they work in a service. It also included questions designed to confirm clients’ diagnosis of ASDs and the presence of CB. The second set involved eight broad open-ended questions to facilitate further discussion. The first question established rapport between a participant and a researcher, and the other seven questions explored participants’ experiences. This type of interview was chosen for its ability to provide rich data, as it is highly flexible and allows a person to discuss what they find is most important to their experience (Smith and Osborn, 2008). A funnelling technique was used when moving towards the end of the interviewing process. This technique is useful when some insight into the participants’ experiences is present and a researcher requires further information on certain topics that emerged at the earlier stages of data collection (Smith and Osborn, 2008). The interviews were recorded using two digital voice recorders and were later transcribed using Express Scribe software. Participants were given pseudo-names, and any information that could be used to identify the organisations, participants and service users was removed. In order to reduce researcher bias and to increase scientific rigour, respondent validation and inter-rater reliability were conducted. The questions were piloted by the following means: they were discussed over the phone with one of the participants, and their suitability was also tested during the first interview. No amendments appeared to be necessary at either stages, and the data collected through the pilot interview were included in the data analysis.
Data analysis
IPA was used as described by Smith and Osborn (2008). The data analysis was done in stages. First, each transcript was read a number of times to acquire familiarity with the data. The left-side margin was used for the initial comments. The right-hand margin was utilised to transform the initial comments into emerging themes. For each transcript, the list of initial themes was generated, and the cluster themes were created. The second stage involved the close comparison between the lists of the cluster themes of each transcript and the common sub-themes have been formulated. At this stage, caution was taken to ensure that the essence of participants’ experiences had been captured in the theme titles. Finally, the sub-themes were clustered again, and the list of super-ordinate themes was generated. The list of super-ordinate themes, sub-themes and examples was then produced. During the whole analysis process, the attention was given to the meaning rather than frequency of the emerging themes.
Results
The carers’ experiences of being exposed to CB in services for clients with ASDs have been examined and analysed. During the process of thorough analysis, four themes have been discovered: intense mental engagement, importance of adaptive coping, ambiguous experience of failure and achievement and destructive emotional reactions. The themes are discussed below.
Intense mental and physical engagement
Although seen as enjoyable, the job of dealing with autistic individuals has often been reported as highly physically and mentally engaging. All of the participants have stressed the importance of being alert and watchful. According to them, the nature of the job involves close interaction between the service user, support worker and their environment. Even though in some cases, certain signs exist, CB can be unexpected, since one cannot guarantee the absence of triggers in their surroundings:
I usually say to the person next to me, really, be alert, you know, watch out because it can come from nowhere.
For that reason, thorough planning is crucial; participants are continuously engaged with an intense examination of any possible outcomes that a situation at present could result in; being prepared to react quickly is essential in order to ensure safety of themselves, service users and members of the public:
You always got to be thinking sort of 10 steps ahead; you are on your toes all the time, being prepared.
Additionally, the state of involuntary physical preparation has been reported to be a frequent experience. In both cases where physical challenges are aimed either at a support worker or others in their environment, participants have reported experiencing the ‘fight or flight’ reaction:
In the past there has been situations where the guys are running into you, throwing objects, trying to kick you and then you know, adrenaline really kicks in, fight or flight sort of thing.
Such a reaction is usually present upon realisation that one will have to contain a potentially dangerous situation and can often be followed by automatic emotional responses such as fear, avoidance or dread. Indeed, participants have revealed both apprehension and dread to be common emotional and mental states when dealing with challenging clients. Continuous feelings of uncertainty and anxiety can often be present, as one is aware of potential challenges that could be presented at any moment during the shift:
I hate the idea of going into work sometimes because I don’t know what’s going to face me.
Therefore, it comes as little surprise that the role is perceived as highly exhausting. Having experienced a long-lasting state of mental and physical agitation, participants report feeling tired and drained, both physically and mentally:
Erm (.) I think it’s very mentally exhausting. I’ve had some days when I felt physically drained <…> you just have to always be alert and always think ahead and think about how he’s gonna interpret things.
It appears clear that intense psychological and physical engagement through staying alert as well as apprehensive might result in physical and mental weariness. Nevertheless, staff seem to accept such an outcome as simply a part of their job and do not put much emotional value on it.
Importance of adaptive coping
Adaptive coping has emerged as the most substantial theme and makes up a significant part of support workers’ experiences of dealing with CB. To some extent, each of the participants has revealed their engagement in various coping techniques that allow dealing with violent and aggressive behaviours of service users in a professional and controlled manner. The coping is adaptive in a way that it requires a person to engage in a certain mental framework which can be defined by one’s ability to create a psychological distance from the role that they are involved with. When a strong emotional value is attached to the role (i.e. when the job comprises a large part of one’s perceived self), the ability to cope decreases leaving a person vulnerable to the negative effects that the experience of violence, and especially verbal abuse, might have on that person.
One of the most often reported experiences has been a support worker’s ability to accept CB as a norm. Here, aggressive behaviours become a usual part of the job and dealing with such behaviours is perceived as a duty:
We get paid in this job to face potentially violent situations and so yes, it is a part of the job.
While being exposed to CB might still evoke some negative reactions, treating such behaviour as a part of the job takes off a mental responsibility that one might hold towards oneself in terms of their sense of safety. Seeing CB as a part of the role allows one a mental distance between such behaviour and oneself. Additionally, the participants devote some of their mental recourses to understanding and de-personalising CB that they are exposed to:
Ugh I’ve been
They engage in an active sense-making of the reasons beyond such behaviours and look for the possible ways to justify them, so that the personal meaning can be detached. The ability to perceive such behaviours as non-personal allows one to deal with them in a more constructive way.
Emotional detachment is an essential part of adaptive coping. In cases when the participants are able to perceive their role simply as a job without attaching much personal importance, it becomes a lot easier to be exposed and to deal with abusive behaviours that they have to face. The ability to distance emotions is a crucial skill for one to be able to deal with CB in a professional manner:
Ok. How do you cope with your emotions when you’re in a challenging situation?
<…> I try not to have it at work; it’s usually when I get home. I’ll keep my game face on most of the time at work.
While it appears that adaptive coping involves one’s ability for emotional detachment, the need to release suppressed emotions is an important part of successful coping. Participants explain that the release can involve various methods such as mental or physical distance through engagement with leisure activities; however, peer and family support has been stressed as the most valuable:
(.) After the crisis, we always talk about what happened, as I said, we have a laugh about it, just let it go. If it’s something upsetting I tell it to my wife; I tell her how I feel and have a little chat about it.
Since the ability to separate the emotional meaning from both CB and one’s experience with it might allow a more successful adaptation to a working environment; inability to do so has a potential to result in substantial distress, depressive moods and feeling helpless, undervalued and unmotivated. In the case of Will, the strong emotional and moral attachment to the job results in feelings of doubt and distress:
Here it is somebody’s life you are dealing with and also I am aware of detrimental effects that it has on me at times where it can get you down for days and days.
Like the racism stuff, that’s really hard, it’s like he really really hates you, and that’s kind of tough because you think, why am I doing this?
Will’s inability to dissociate emotional meaning from the CB leaves him doubting himself and results in loss of interest in the job and his hobbies, as well as leads to dysfunctional coping, such as resorting to alcohol. While he is aware of the effects that his inability to manage his perceptions of the experiences at work might have, it becomes apparent that the lack of coping can become detrimental to his well-being. Similar experiences have also been reported by other participants where inability to distance oneself from the role is marked by their struggle to relax as the job might take over their personal life:
So it can be really really tough. Because it does, it encroaches in you, it encroaches in your personal life.
Therefore, adaptive coping becomes an important part of the job, as it allows for support workers to deal with CB in a way that is effective in terms of their own and clients’ well-being.
Ambiguous experience of failure and achievement
As discovered from data analysis, participants are continuously engaging in a process of self-reflection. They evaluate their experiences at work and are able to indicate how these experiences might affect them as individuals. It also appears that their perceptions are largely responsive to either failure or success at a work place. In case of the former, inability to deal with the CB effectively often leads the staff to encounter the feelings of guilt and self-blame:
if something fails terribly you can feel like you’ve failed yourself, ‘I could have done that better, I should have done that’ <…> you go through the process of self blame.
The process of self-reflection is often marked by the attempt to understand why their support efforts failed and what that means to them as care workers. The feelings of doubt towards one’s ability to do the job as well as suitability to the role might emerge:
I really started doubting myself, maybe I can’t do this job, you know, I wasn’t sure about myself.
On the other hand, the moments of success are followed by the sense of achievement. While the feelings of guilt, self-blame and doubt might be present at times, the positive experiences appear to have a stronger emotional value. Participants enjoy the sense of fulfilment and feel satisfied with themselves in cases when a desirable outcome is achieved; the very nature of the job appears to be rewarding:
Sometimes I feel really good about myself because you do something rewarding and you make a difference in someone’s life.
Furthermore, the very nature of the job appears to be rewarding; participants undergo the feelings of achievement and feel fulfilled when being able to help somebody else:
Sometimes I feel really good about myself because you do something rewarding and you make a difference in someone’s life.
The job seems to serve participants’ vocational needs and provides a sense of progress and self-actualisation. Being a support worker therefore involves a personal challenge as well as permits a continuous learning experience. The skills that are acquired through the role are transferred towards personal life and help to redefine whom one is. The job provides insight into the disability world and allows one new perceptions towards life and selves:
Working with these guys I’ve realised that despite
I’ve learned a lot from people with disabilities. So I would say my life is far better now, it’s a lot more rich.
It becomes clear that the process of self-reflection is an important and meaningful part of the job and can result in both positive and negative emotions. The role serves as a way towards individual progression and can also be seen as a tool to fulfil one’s vocational needs.
Destructive emotional reactions
While some positive accounts have been mentioned throughout the transcripts, the negative reactions in response to CB seem to have a strong emotional value. These are destructive as they often jeopardise one’s trust with self, diminish quality of support and might lead to the feelings of doubt and guilt, discussed in the previous section. Although such reactions mainly stem from being exposed to CB and therefore can be managed through mental reasoning and one’s ability to cope; psychological value attached to it can lead towards feeling the lack of support. One of the most common reactions revealed by participants was fear. Most often fear stems from having to deal with challenges that can be physically dangerous or mentally devastating:
When you are first faced with it, there is fear because you are dealing with someone who is very angry and
I didn’t feel like going to work and I felt really down like I’d rather be anywhere than here just because of the fear of getting verbally abused.
Even though CB might be the main source of fear, sense of responsibility for a service user might also cause similar reactions:
We went into the petrol station and he’s reacted and he’s gonna get killed and I’m gonna get blamed, I’m gonna be in a manslaughter charge. You know it’s really quite scary at times.
Additionally, the fear of social judgement has been discussed by participants. To some, it represents the fear of being perceived as inadequate by their colleagues, while others have reported being afraid of social opinions when dealing with CB in public.
Finally, frustration emerged as a common emotional reaction among the participants:
Ok. What kind of emotions do you experience during these challenging moments?
Frustration,
Similar to fear, it might stem from having to deal with CB; however, the underlying reasons appear to be different. Participants revealed experiencing frustration in cases when they realised they were unable to help eliminate CB in clients. At these times, they become aware of the unchanging nature of CB and their inability to help a service user improve; such realisation might also result in feeling helpless:
You still walk into his house, items that were put down four years ago are still not moved. It’s like, what’s the point, it really is quite frustrating.
While fear and frustration most often appear to stem from dealing with CB, its link to other thematic components within support workers’ experiences is apparent. It is no surprise that such reactions might follow self-reflection or adaptive coping as well; being exposed to CB in people with ASDs is a complex, multi-component experience.
Discussion
This study contributes towards the existing body of literature on the support workers’ experiences of CB. The study demonstrates the accounts of staff who support clients with ASDs and CB to be similar yet very distinctive to those of workers in other care settings. The results reveal that intense physical and mental engagement is common among all the study participants. The nature of CB requires support staff to engage in the adaptive coping techniques that often means normalisation and depersonalisation of abusive behaviours, emotional detachment and the need for release. Furthermore, the presence of ambiguous experiences of failure and achievement has been discovered through data analysis. The role might involve a sense of guilt, self-blame and self-doubt as well as the more positive experiences of self-actualisation, self-fulfilment, personal development and learning. Finally, the detrimental reactions such as fear and frustration were discussed as a core experience of facing CB. Such results reveal that facing CB in services for ASDs might be a complex experience which plays a substantial role in a support worker’s emotional world.
This study extends current literature in several ways. First, it demonstrates that the experiences of staff supporting adults with ASDs and CB might share some similarities with the experiences of other carers. For example, as reported by Myers et al. (2009), caring for children with ASDs enriched parents’ spiritual life, taught them patience and increased their understanding of the disability world. Similar findings were also supported by the current research. In studies where staff reactions to CB have been explored, feelings of fear, helplessness, guilt and anticipation and normalisation of violence have been reported (Campbell, 2011; Franz et al., 2010; Hellzen et al., 2004; Lundstrom et al., 2007b). The current research supports these findings, suggesting that some experiences of dealing with CB might be shared by professionals in various environments. In addition, the nature of the analytical method used allowed some insight into the personal meaning of the reactions expressed by staff. The study reveals that feelings of fear, helplessness and guilt might be related to carers’ sense-making, perception of selves and their role in society. It supports the idea that the experience of CB might be context related and could depend on how one interprets the world that surrounds them (Emerson, 1995). Furthermore, the current findings illustrate that certain reactions such as normalisation of violence might be present to serve a function of coping. Therefore, the results are important in a way that they allow a more in-depth exploration and insight into understanding the function of carers’ reactions to CB.
In addition, the study expands our knowledge of the experiences of staff working in services for ASDs and CB. The themes ‘intense physical and mental engagement’, ‘adaptive coping’ and ‘ambiguous experiences of failure and success’ are novel in this field of research; nevertheless, they make up a substantial part of carers’ experiences. The study therefore reveals that our understanding of the area might be limited. As previously assumed, working in services for ASDs specifically appears to involve very different reactions to those of staff based in other services. While staff who work in services for IDs and CB have reported experiencing anger, anxiety and fear most frequently (Franz et al., 2010; Lambrechts et al., 2009), the carers who work in services for ASDs seem to go beyond these reactions and aim to understand the meaning of CB. There might be several reasons for such behaviour. First, the nature of CB in people with ASDs might be different (Shattuck et al., 2007). In services for IDs, CB might be easier to perceive as non-personal due to the nature of disabilities that service users possess. Since ASD does not necessarily mean intellectual impairment, staff who deal with such individuals might require more mental resources to acknowledge CB as part of their clients’ condition. With regard to other developmental disabilities, a challenging person might be unable to understand the impact or the meaning of their behaviour, making it easier to justify it as a part of person’s disability. On the other hand, clients with ASDs might be seen as more able to understand the significance of such behaviour. The staff who work with clients with ASDs and normal intellectual functioning are aware of their clients’ intellectual capacity and therefore might see them as more accountable for their CB. As a result, CB presented by people with ASDs might be perceived as more personal, intentional and psychologically abusive, as opposed to CB exhibited by those with IDs. In cases where clients’ IQ is within the average range or higher, the challenges that such clients present might be more intellectually and psychologically demanding to staff. When service users are highly intellectually capable, support worker’s involvement might be more intense, as they might believe they have a higher chance to improve the well-being of such individuals.
Furthermore, the findings of this study differ to what has been reported by Hellzen and Asplund (2002). In their study, the experiences of six Swedish nurses caring for a client with ASDs and CB have been examined and two themes have been discovered: ‘being trapped in reality’ and ‘striving to reach an ideal’. These meant feeling lonely and powerless as well as hoping to be accepted by the service user, their colleagues and members of the public. The discrepancies in the results could be explained in the following ways. First, the differences in the study designs could result in a different approach toward the data. While this study employed IPA (Smith, 1996), the research by Hellzen and Asplund used a phenomenological approach designed by Ricoeur (1976) (as cited in Hellzen and Asplund, 2002). The differences in the analysis could then account for the different levels of interpretation, and so result in the different formulation of results. Second, the differences between the services could change the way staff experience CB. In the study by Hellzen and Asplund (2002), participants were asked to discuss their role of supporting somebody with ASDs in a strictly routine isolated environment. Since services in the United Kingdom seek to promote personal independence and aid with successful integration into the community, the exposure to CB might have a different meaning in terms of how one has to deal with it (Harker and King, 2004). Therefore, the present findings suggest that the differences in service provision might have an impact on staff on a cross-cultural basis.
The study has several practical and academic implications. Essentially, the results highlight the core of the carers’ experiences of CB in services for ASDs. Understanding what facing CB means to the care staff has a potential to ensure that their training and support needs are met. In cases where staff might be unwilling to share some of their feelings with other colleagues, the present research allows a management team to gain some closer insight into what their staff might experience, and establish the policies that would ensure minimising their negative experiences. Results reveal that being able to depersonalise and normalise CB might decrease the negative impact of the role; such insight could be applied when developing training strategies. This study highlights some reasons why staff might be unable to cope and therefore has the potential to increase the quality of care for service users.
Limitations
While the study provides a useful insight into this area, some limitations and future research suggestions are merited. There is a possibility that the study suffered from selection bias. Since the managers of each service were contacted first to invite their staff to participate in the study, it is possible that the managers might have been selective in terms of involving only certain staff members who they believed had the best experience and were most capable of dealing with CB. Future research should perhaps use more direct methods of recruitment thus eliminating such a possibility. In addition, previous research has emphasised the importance of formal supervision for staff well-being in the related areas of care (Malin, 2000); nevertheless, such a form of support has not emerged as a substantial experience in this study. It is unclear whether such an outcome is context specific to this study, and so, future research should explore this further.
Conclusion
The study demonstrates that experiences of workers in services for ASDs might be poorly explored, and further research should be carried out to improve our understanding of the area. Dealing with CB appears to be a complex experience, and so, the insight into the personal worlds of support workers provided by the study might help improve their working environments and the nature of support that they receive and provide.
Footnotes
Funding
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.