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Bradley, E. Korossy, M

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Bradley, E. Korossy, M HELP with Behaviours That Challenge Abstract When individuals with intellectual and developmental dis- abilities engage in behaviours that challenge, their poten- Volume 22, Number 2, 2016 tial for full community participation, integration and qual- ity of life is greatly compromised. Embedded in the acronym HELP (Health, Environment & Supports, Lived Experience, Psychiatric Disorder), this article describes a biopsychosocial Authors multi-perspective understanding of these behaviours. HELP is an approach that can be embraced comfortably by all stakehold- Elspeth Bradley,1 ers (including individuals with intellectual and developmental Marika Korossy2 disabilities and their families), empowers problem solving and has implications for effective intervention. 1 Department of Psychiatry, University of Toronto, Behaviours that challenge (BTC), otherwise known as “chal- Toronto ON lenging behaviours,” (National Collaborating Centre for 2 Surrey Place Centre Mental Health [NCCMH], 2015) are observed in people with (retired), intellectual and developmental disabilities (IDD) (DSM-5; Toronto ON American Psychiatric Association, 2013). Epidemiological studies estimate that BTC are present in 5–15% of the popu- lation with IDD (NCCMH, 2015) and occur more frequently in those with greater severity of disability (Cooper, Smiley, Allan et al., 2009a; Cooper, Smiley, Jackson et al., 2009b). These behaviours may start early, have a relapsing and remitting course and can challenge services and care provid- ers. As a consequence, individuals engaging in these behav- iours are frequently the recipients of intrusive interventions including the over prescription of psychotropic medication, particularly antipsychotic medication, giving rise to ser- ious side effects, increased medical morbidity and mortal- ity (Alexander, Branford, & Devapriam, 2016; Sheehan et al., 2015). BTC lead to reduced quality of life both for individuals Correspondence so engaged, and their care providers as well as frequently preventing full community integration. e.bradley@utoronto.ca Some BTC, while being a concern to care providers, are not apparently distressing to the individual (e.g., some repetitive behaviours, hoarding) and do not result in any harm to self, Keywords others or property destruction. These behaviours might more appropriately be referred to as antisocial (i.e., annoying, irri- challenging behaviours, tating and outside of the social norm; Bradley & Korossy, 2015). assessment, Whether to intervene in these antisocial behaviours should be formulation, given careful consideration because intervention may obstruct treatment, a vulnerable individual’s right to self-expression. interprofessional, multiperspective BTC that result in harm to self, others, or destruction of the environment, can best be considered as communications of distress by individuals unable to communicate their distress in more conventional ways. This distress may arise as the consequence of body discomfort (e.g., medical condition), from situations in their environment (e.g., over-stimulating © Ontario Association on Developmental Disabilities BRADLEY & KOROSSY 102 surroundings giving rise to hyperarousal and and needs of people with IDD (their “lived meltdowns), from the interaction between per- experience”) and the contribution of unmet sonal, emotional and environmental circum- emotional needs to BTC (Bradley, Hollins, stances (e.g., a task is too difficult or sadness Korossy & Levitas, in press). about loss of a care provider), or it may signal psychiatric disorder. There may be multiple fac- Tools associated with this HELP approach are tors compounding the distress and confound- also available online through the Developmental ing simplistic approaches to these behaviours. Disabilities Primary Care Initiative at Surrey Attempts to treat without appreciating under- Place Centre (2011). A recently published chapter lying cause can escalate the distress and exacer- provides more details, clinical tips and references bate the situation to crisis proportions. to online resources (Bradley & Korossy, 2015) such as a booklet for care providers (Bradley Systematic consideration of the personal and bio- & Caldwell, 2016). The Curriculum of Caring psychosocial complexities that give rise to expres- Agenda (http://machealth.ca/programs/curricu- sions of underlying distress is paramount (Banks lum_of_caring) embraces the HELP approach et al., 2007; Banks, Bush, & Other Contributors, and self-advocates with IDD have given their 2016; Koritsas & Iacono, 2015). A robust diag- voice to HELP through a musical adaption nostic formulation embracing multidimensional (https://vimeo.com/125914430) (Boyd, 2016). circumstances, creates opportunities for collab- orative problem solving, accurate diagnoses and person centred solutions (Holland, 2015; Jahoda, HELP Framework and Approach Willner, Pert, & MacMahon, 2013). for Understanding BTC BTC have historically been referred to as “chal- The HELP framework considers the aetiologies lenging” or “problem” behaviours or “behav- of BTC within four main conceptual themes: iour problems,” the latter sometimes even (1) H ealth; (2) E nvironments, supports and morphing into “behaviour disorders.” All four expectations; (3) L ived experience and emo- descriptors create the impression that these tional well-being; and (4) P sychiatric disorder behaviours are primarily a characteristic of the (Figure 1). In the HELP approach these four areas individual and consequently the focus of inter- are explored in sequential order so that those cir- vention is on trying to change the individual. cumstances most frequently contributing to BTC “BTC” on the other hand implies an interaction are identified and addressed before assuming between the individual and his/her environ- that any unusual or problematic behaviour must ment and begs the question who is challenging be of psychiatric origin. whom (NCCMH, 2015). BTC is favoured by the present authors because (a) these behav- These four themes are considered separately iours arise in the context of an individual with below. Suggestions for clinical practice ( ), and unique needs in an environment that may not clinical vignettes ( ) are inserted at the end be optimally understanding or supportive of of each theme. these needs (Banks et al., 2007; Banks et al., 2016) and (b) evaluations of both the individ- Case vignettes are in Appendix 3. ual, their physical-social environment and sup- ports, are required for effective intervention and successful outcomes. H ealth This article describes an effective, efficient Medical conditions can give rise to BTC (Goh, 2013) and sequential approach for under- (Appendix 1). In this context, the BTC are sig- standing BTC. The HELP framework described nals, or put another way, communications from here (Figure 1), provides a meaningful, intuitive the individual of physical discomfort or pain and straightforward way to organize assess- they are experiencing (Appendix 2). Individuals ment, formulation and interventions across with IDD vary in their capacity to communicate multiple domains of complexity. Essentially a to others that they are experiencing physical biopsychosocial approach, HELP is unique in discomfort or are in pain (Boardman, Bernal, & paying special attention to the emotional lives Hollins, 2014). Even those who use words may JODD H.E.L.P. 103 not spontaneously share their suffering with Health – Helpful tips: others unless specifically asked or prompted. However, care providers using effective com- (1) Consider “head to toe” health when munication strategies such as simple language, reviewing physical status (so as to cover all gestures and visuals (e.g., Books Beyond Words: aspects of the body); Bradley & Hollins, 2013), enhance opportunities for individuals with IDD to alert care providers (2) identify the cause (aetiology) of the IDD to their physical suffering; such detection paves (e.g., a syndrome) as different IDD aetiolo- the way for early intervention before pain-relat- gies have increased prevalences of different ed behaviours escalate. For those individuals health issues that need attention throughout with limited or no language, care providers the lifespan (e.g., thyroid and celiac disease need to be attuned to small changes in facial in Down syndrome); expression or other body language that may (3) screen for these syndromes/aetiological signal that something is wrong (Caldwell, 2013; associated medical conditions; Leicestershire Partnership NHS Trust, 2013). Best practice guidelines in IDD recommend rou- (4) identify and document each individual’s tine health screening (e.g., annual health checks) unique response to pain (e.g., such as may (Robertson, Hatton, Emerson, & Baines, 2014), occur when exposed to a circumstance gen- and when BTC arise, review of physical status erally considered to be painful) and docu- and examination (Sullivan et al., 2011). ment in case notes for future reference. Patient brought to family physician/psychiatrist because of mental distress or behavioural concerns Individual communicating concerns verbally? Yes Individual vulnerability NO Yes Precipitating Carers expressing concerns? events NO Yes Maintaining Should there be concerns? (Is anyone at risk?) circumstances NO Yes: H ealth: medical condition? Treat condition NO Yes: E nvironment: problem with Adjust supports supports or expectations? or expectations NO L ived experience: e.g., life events, Yes: trauma, emotional issues? Address issues NO Yes: P sychiatric disorder? Treat
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