Introduction

Psychiatric and behavioral disorders can be a major concern for families and carers of people with intellectual disabilities (ID). Such difficulties are a common source of stress and negative emotions in carers. Challenging behaviors, which can often be the outward manifestation of mental health problems, present major difficulties for families and carers. People with ID may receive a “diagnosis” of behavioral disorder rather than a psychiatric diagnosis. The present chapter will focus upon the impact of challenging behaviors on carers. Studies have shown that behavioral or psychiatric problems are important sources of stress experienced by caregivers and that stress intensifies with the increasing severity of a carer’s experience (Hayden and Goldman, 1996; Heller et al., 1997a; Lecavalier et al., 2006; Cudré-Maroux, 2011). Psychiatric and behavioral disorders are related to carer burden, coping, and are perceived to have a negative impact on families (McIntyre et al., 2002; Maes et al., 2003; Unwin and Deb, 2011; Hartley et al., 2012). In residential care settings the presence of challenging behavior and interpersonal difficulties are related to lower job satisfaction, increased anxiety, emotional exhaustion, depersonalization/cynicism, and staff burnout (Jenkins et al., 1997; Mitchell and Hastings, 2001; Rose et al., 2004; Mills and Rose, 2011; Vassos and Nankervis, 2012).

Personal and situational variables, stress, and burnout

Whilst studies report a relationship between psychiatric or behavioral disorders and negative outcomes for carers, other studies suggest that a range of factors, such as carer cognitive variables, human and social capital, socioeconomic position, and carer satisfaction, mediate this relationship (e.g., Ben-Zur et al., 2005; Devereux et al., 2009; Hill and Rose, 2009; Hatton et al., 2010). Studies investigating the attribution model (Weiner, 2006; Dagnan et al., 2013) have suggested that internal judgments about the control individuals have over challenging behaviors can predict staff response and subsequent placement breakdown, with carers more likely to help where the behavior is perceived as out of the control of the person (Phillips and Rose, 2010; Cudré-Maroux, 2011). However, the results obtained using this model have been inconsistent with some researchers failing to find a clear relationship between attributions and helping behavior (e.g., Rose and Rose 2005).

Other models are starting to be used to investigate the complex relationship between challenging behavior, psychiatric disorder, and stress in carers (e.g., Hill and Rose, 2010; Rose 2011). This includes a model of stress in parent–child interactions developed by Mash and Johnston (1990). This model has been used to demonstrate the mediation of the relationship between challenging behavior and carer stress and burnout by carer cognitive variables. It consists of four elements, including a client’s characteristics such as challenging behavior, environmental characteristics, and parent characteristics that might include a variety of psychological variables, such as attributions or locus of control, with interactive stressor burnout as an outcome. These links are considered reciprocal, and while they recognize that other factors may be influential, they consider that these variables are likely to be the most important influence on the development of carer–child interactive stress. This model has been used to demonstrate predictive utility in mothers of younger children with ID (Hassall et al., 2005), in adult children living at home with parents (Hill and Rose, 2010), and for care staff (Mills and Rose, 2011; Rose et al., 2013). A review of this model suggests that a number of cognitive variables such as locus of control, fear of assault, and self efficacy mediate the relationship between challenging behavior and stress, and they can also mediate the relationship between environmental variables such as family support and organizational climate and stress.

Another promising area for the exploration of the relationship between challenging behavior/psychiatric disorder and stress is the adaptation of the self-regulation theory of illness behavior (Leventhal et al., 1984, 1992), which has been used to develop a measure, the Challenging Behaviour Perception Questionnaire (Williams and Rose, 2007) that explores the impact of challenging behavior on a range of staff–carer cognitions. This questionnaire has recently been adapted for use with parents (Nelson, 2013) and makes available a number of concepts to explore in the relationship between challenging behavior and stress. These include consequences for the carer and client, changes in the behavior over the course of time, control, and carer emotional reactions. Nelson, (2013) has also shown that parental beliefs about the consequences of the observed challenging behavior on the child itself was a significant mediator of the relationship between challenging behavior and parental stress.

Current research would therefore suggest that there is a relationship between psychiatric disorders, challenging behavior, and stress and burnout in both parents and carers; however, this relationship is complex. There are a range of variables that will influence the relationship, particularly a range of cognitive variables. That is, it is often possible to ameliorate the impact of caring for someone with psychiatric difficulties and corresponding challenging behavior if the carer is supported to see the behavior in a different way. This provides clinicians with an additional means of supporting carers, especially when underlying psychiatric and behavioral problems prove resistant to treatment.

Positive aspects of caring

Positive aspects of caring have received less recognition than stress and burnout. Hastings and Taunt (2002) suggested a model based on the idea that positive perceptions can be used by families as strategies to help them cope with the experience of raising children with disabilities. Specific research has been slowly developing. High levels of satisfaction and uplift as a result of caring and quality of life have been reported by family carers (Jokinen and Brown, 2005; Unwin and Deb, 2011). Furthermore, relationships may not always be unidirectional, with the person with ID perceived to be a source of support to the family (Heller et al., 1997b; Jokinen and Brown, 2005). Hastings et al. (2005) have developed the Positive Contributions Scale (PCS) in an attempt to quantify the contributions of children with ID to their families. They suggest that the measure has reasonable reliability and construct validity. Mothers generally reported more positive contributions to the family than fathers; however, there was clear evidence that their children were making a positive contribution to their families. Todd and Jones (2003) suggest that whilst parent caregivers may be potent advocates for their offspring, they may be more reserved and hesitant about expressing their own needs. Therefore, research needs to focus on further elucidating the experience of caring in this context, to ensure that caregivers are appropriately supported by services.

There has been less research on the positive aspects of caring for employed staff; however, Hastings and Horne (2004) have developed a measure, the Staff Positive Contributions Questionnaire (SPCQ), which could be used to further measure the positive contributions that people with ID make to staff. Indeed, other research has asked staff to evaluate their relationships with their clients, other staff, and the organization they worked for. Thomas and Rose (2010) based their research on equity theory, which asks staff to compare how much they put into their work compared to what they get back. Staff perceived that they contributed more to all of their relationships than they received, but it was the imbalance in their relationships with their colleagues and the organization that had a greater impact on their levels of burnout.

Direct carer’s perceptions of the causes for aggressive challenging behavior

A recent study investigated the motivations and antecedents that trigger aggressive challenging behavior amongst adults with ID by interviewing their carers, including both paid and family carers (Unwin, 2013). The aim was to explore the knowledge and understandings of paid and family carers, to contrast these with existing models of challenging behavior, and to identify potential gaps in knowledge that could be targets for intervention with carers. Few studies have explored the perspectives of carers in this way and have instead concentrated on the psychological consequences of providing care.Unwin (2013) conducted structured interviews with 100 carers (56 paid care workers and 44 family carers) of adults with ID who were in contact with specialist health services for the management of aggressive behavior. Carers were asked to generate a list of what they perceived as contextual factors or motivations for aggressive behavior. The term “triggers” was used for carers as it was felt to be more understandable, less technical, and broader than other terms used in the literature such as “contextual variable” or “setting event.” Similarly, the term “motivates” was used instead of “functions” for the same reasons. Triggers were described as referring to predisposing events as well as situations or circumstances which precipitate and sometimes perpetuate aggressive behavior.

Six main themes were extracted from the thematic analysis, namely, external environment, internal environment, expression of volition, specific activities/events, characteristics of ID, and predictability of behavior (Unwin, 2013). The carers interviewed identified a wide range of triggers, demonstrating some knowledge of the determinants of behavior. However, knowledge varied, with 41% of carers describing the aggressive behavior as unpredictable. The carers in the study cared for individuals who were in contact with specialist services; therefore, they may have received some psychosocial education from health professionals and may not be representative of the wider population of carers. The study also included both family and paid carers; it is not known whether family carers were less likely to identify triggers and more likely to perceive the behavior as unpredictable.

The results demonstrate convergence with existing literature on contextual variables (McAtee et al., 2004; McGill et al., 2005; Embregts et al., 2009b); however, some differences were evident when compared to the functional analysis literature. Unwin (2013) describes an external environment theme, related to features of the person’s immediate physical environment and the social environment. Carers perceived the social environment to be the most common trigger, which included interactions with others, how others interact with individuals, and interactions observed by individuals. The carers interviewed often cited attention as a motivator and suggested that much behavior was “attention seeking”: to initiate interaction or “get a reaction,” whether this was negative or positive. Other carers did not identify attention as a function but rather identified a lack of attention or others getting attention as a trigger. Carers also identified features of the social context, such as the presence of certain staff members, other service users, or conflicts with others.

Attention has been reported to be a common function for challenging behavior (e.g., Embregts et al., 2009a; Matson et al., 2011; McClean and Grey, 2012); however, carers in the study by Unwin (2013) did not always describe attention-controlled motivation. Studies have also suggested that aggressive behavior is most commonly maintained by the need to escape external stimuli (e.g., Matson et al., 2011; Rojahn et al., 2012). The presence of certain individuals or witnessing conflict may relate to escape functions, but carers did not perceive behaviors in these terms and instead focused on observable features of the social environment. The physical environment also encompassed observable visual, auditory, and spatial triggers, such as loud, unexpected noises, busy environments, the proximity of others, and specific stimuli such as ambulances (Unwin, 2013). Such ecological variables have often been cited but rarely studied. It could be asserted that the escape function was also activated in response to many of these triggers; however, this understanding was not evident from the carers’ accounts.

In the same study, carers identified triggers relating to the expression of volition, which included both goal-directed behavior and limits to volition imposed by others, often in response to the person being encouraged to do something, or the person wanting to do something. Much of the “expression of volition” described by Unwin (2013) could relate to a tangible function, as people exhibited aggressive behavior when they were not able to fulfill their desires; their behavior may have the aim of achieving that desire; however, few carers described this process. Few carers identified goal-directed behavior in relation to trying to achieve something (tangible) or avoid something (escape); rather, they identified “demands not being met” or “requests being denied.” Unwin (2013) also describes a “specific activities and events” theme, which includes various activities of daily living, medical appointments, vacations, and special events. The author highlights that such triggers may provoke an escape function; however, carers did not provide any qualification as to how such activities and events trigger behavior. The emergence of these themes highlights the reduced autonomy of people with ID and the reliance on carers for access to activities and items. Carers understood this to be a source of tension, and further research should explore different approaches to managing these issues that would be acceptable to people with ID and avoid reinforcing the behavior.

Carers can most reliably identify physical functions for behavior such as pain, discomfort, and hunger (Matson and Wilkins, 2009), but physical functions are rarely considered in the literature (Matson et al., 2011). Unwin (2013) describes an “internal environment” theme from carers’ accounts, which includes similar aversive physical states and medical conditions as well as emotional states that were identified by 58% of carers. McGill et al. (2005) reported on the tendency for functional analysis to neglect personal-setting events, especially emotional states. Carers in the study by Unwin (2013) often implicated underlying anxiety, agitation, and stress as triggering aggressive behavior, which indicates empathy amongst carers. However, without understanding the function of the behavior, carers may inadvertently reinforce behavior by providing or withdrawing attention/activities when aggressive behavior is expressed contingent on an underlying emotional state.

Carers are often relied upon to inform functional analysis (Rojahn et al., 2012). The study by Unwin (2013) indicates that carers can identify a range of contextual variables; however, some may struggle to identify triggers without prompting, and carers may not consider functional determinants of behavior, other than in relation to seeking attention. Authors have commented on the complexities of locating functions for behavior and suggested that a contextual approach may be useful in practice (McGill et al., 2005; Unwin, 2013). Commonly, carers are responsible for implementing behavioral plans on a day-to-day basis, but the lack of behavioral knowledge may present barriers to their successful implementation (McClean and Grey, 2012; Hutchinson et al., 2014; Willems et al., 2014). The acceptability of support plans to carers has been found to be the most salient factor relating to effectiveness (McClean and Grey, 2012).

Training and support for carers

Current evidence suggests low levels of behavioral and mental health knowledge and training amongst paid carers (Quigley et al., 2001; Allen et al., 2005; Stenfert Kroese et al., 2013); it can be asserted that informal carers have less knowledge and training. Training could help carers start to link contextual variables with functions for behavior; however, this is a complex task and may require psychological input. Carers may also benefit from training and information about potential contextual triggers to help them think more about personal and environmental conditions and their own role in the environment. Training could work on two levels: an educative/knowledge level and an attitudinal/attributional level.

Behavioral training packages for paid carers have been developed and have been shown to improve knowledge, attitudes, attributions, and understanding (Costello et al., 2007; Kalsy et al., 2007; Lowe et al., 2007b; Rose, 2014), improve the sense of empowerment, self-efficacy, and empathy (Hutchinson et al., 2014), and have resulted in improved behavioral support plans and reduced levels of challenging behavior (Lowe et al., 2007b; McClean and Grey, 2012). However, access to such training remains limited, can be resource-intensive, can be costly to services, and it is unlikely that family carers have access to such training. Little research has evaluated training for family carers, but research suggests that training can be effective in changing parental attitudes (Rose, 1990). Training is also likely to support carers so that they are more confident in their approach and are able to cope more effectively in conceptualizing challenging behavior. As a result, carers are much less likely to experience higher levels of stress and burnout.

Supporting carers to identify and understand the role of contextual variables in precipitating behavior may represent a sustainable, widely implementable approach. Improving such knowledge may help to bridge the gap between highly trained health professionals and direct caregivers by developing a common language and shared understanding. Improving understanding of behavior may also improve carer’s sense of self-efficacy, and shift their locus of control. Carers may become more involved in the development of behavioral support plans, which may improve investment and subsequent fidelity to the behavioral plan (Hieneman and Dunlap, 2000; Holt et al., 2005). Such plans, developed by direct carers rather than other professionals, may have a better “contextual fit,” being developed in the environments in which they are to be implemented (McClean et al., 2005).