Family Involvement in Person-Centered Approaches for People with Intellectual Disabilities and Challenging Behaviors: A Scoping Review

Figures & data

Table 1. Search strategy Embase using MeSH Emtree and additional text words

Embase final search strategy
(“intellectual impairment”/mj/de OR “mental deficiency”/mj/exp OR “learning disorder”/mj/de OR “mentally disabled person”/mj/de OR “developmental disorder”/mj/de OR (((intellect* OR learning OR development*) NEXT/1 (defect* OR deficit* OR deficien* OR dysfunction* OR disab* OR impair* OR disorder* OR retard* OR handicap*)) OR ((mental*) NEXT/1 (defect* OR deficit* OR deficien* OR dysfunction* OR disab* OR impair* OR handicap*)) OR retard* OR idiocy OR (down* NEAR/3 syndrome*) OR prader-willi OR fragile-x):ti)
AND (“aggression”/de OR aggressiveness/de OR provocation/de OR threat/de OR “violence”/de OR Assault/de OR “exposure to violence”/de OR “physical violence”/de OR “verbal hostility”/de OR “challenging behavior”/de OR “problem behavior”/exp OR “automutilation”/de OR hostility/de OR “stereotypy”/de OR “agitation”/de OR “agitation assessment”/de OR “disruptive behavior”/exp OR “antisocial behavior”/de OR arson/de OR “sexual misconduct”/de OR (aggressi* OR provoc* OR threat* OR violen* OR Assault* OR hostil* OR crime OR criminal* OR hurtful* OR ((challeng* OR problem* OR defiant* OR difficult* OR trouble* OR unaccept* OR demand* OR abuse OR abuser* OR abusive* OR inappropriat* OR maladapt*) NEAR/3 behav*) OR automutilat* OR auto-mutilat* OR (self NEXT/1 (harm* OR injur* OR mutilat*)) OR misconduct* OR (physical* NEAR/3 restrain*) OR stereotyp* OR stereo-typ* OR agitat* OR ((disrupti* OR conduct* OR problem* OR destruct*) NEAR/3 (behav* OR act OR acts)) OR misbehav* OR (withdraw* NEAR/3 behav*) OR anti-social* OR antisocial* OR arson):ab,ti)
AND (“therapy”/de OR “early intervention”/de OR “psychiatric treatment”/de OR psychotherapy/exp OR “behavior modification”/de OR “behavior therapy”/exp OR “client centered therapy”/exp OR “cognitive behavioral therapy”/exp OR “cognitive rehabilitation”/exp OR “cognitive therapy”/exp OR (support* OR intervention* OR therap* OR psychotherap* OR ((behav* OR client* OR treatment) NEAR/3 approach*) OR (behav* NEAR/3 (treatment* OR management* OR support*)) OR (comprehensive* NEAR/3 (treatment* OR support*)) OR ((multicomponent* OR multicomponent*) NEAR/3 framework)):ab,ti)
AND [2005–2019]/py NOT ([Conference Abstract]/lim) NOT ([animals]/lim NOT [humans]/lim) AND ([english]/lim OR [dutch]/lim OR [german]/lim)

Table 2. Study characteristics

Author(s), year, country and quality	Study design	Study population	Person-centered approach	Family involvement	Outcome on family contact	Outcome on challenging behaviors
Beadle‐Brown et al., (2012) UK	12 month trial	29 people, level of ID not reported Sex: NR Age: 44 (range 20–61) Challenging behavior present at baseline: for some participants Type of living situation: community-based housing with 24/7 care from staff and 2–8 residents	Approach Person-centered Active Support Training staff Staff received 1-day workshop on principles of person-centered active support and 1.5–2 days hands-on training involving the manager Personal plan Not reported	Relatives received information on active support	No	Aberrant Behavior Checklist and observed challenging behaviors, no significant decrease in challenging behaviors
Chou et al. (2011) Taiwan	14 month trial	49 people with mild, moderate, severe or profound ID Sex: 31 males, 18 females Age: 32 (range 19–54) Challenging behavior present at baseline: not reported Type of living situation: community living homes (2–6 residents) with 24/7 care from staff	Approach Active Support Training staff Two-day classroom training workshop on general principles of active support, 1–2 day classroom training including on activity and support plans, individual interactive training in the residence. Personal plan Not reported	Not reported	Social Network Index, no increase in contact with family	ICAP General Maladaptive Index, no decrease in challenging behaviors
De Wein and Miller (2009) USA	33 month multiple baseline case study	2 people with moderate or severe ID Sex: 2 males Age: 28–37 years Challenging behavior present at baseline: all displayed physical and verbal aggression Type of living situation: community-based independent living	Approach Teaching Family Model. Information such as the individual’s goals, hopes, and dreams (identified by individual with intellectual disability) as well as the individual’s strengths (by staff) were identified. Information obtained from the QLP was used to target skills that would help the men to achieve their goals and that might serve as alternatives to aggression. Rewards could be earned as a motivation system. The staff member had a meeting with the individual with intellectual disability every day to discuss progress. Training staff Not reported Personal plan A quality of life plan was established	Family (i.e. parents and/or guardians) met with the teaching team and administration (and often the individual with intellectual disability) to discuss and review progress. Family was questioned on quality of life of individual with intellectual disability	One individual with intellectual disability reported increased contact with parents, resumed home visits and weekend visits with parents	Frequency of physical and verbal aggression was counted, during the TFM the challenging behaviors decreased.
Galli Carminati et al. (2007) Switzerland	21 month trial	10 people with profound ID, all diagnosed with a pervasive developmental disorder Sex: 8 males, 2 females Age: 39 (range 33–54) Challenging behavior present at baseline: not reported Type of living situation: Programme Autisme Méthode Structurée appartments with 6 residents	Approach Programme Autisme Méthode Structurée (PAMS) develop autonomous abilities for domestic activities. Using repetition and predictability. Limited verbal communication but increased alternative communication. Leisure and training workshops. Training staff Not reported Personal plan Not reported	Not reported	No	Aberrant Behavior Checklist, challenging behavior decreased
Grey et al. (2018) UK	24 month multiple baseline case study	7 people with mild, moderate or severe ID Sex: 5 males, 2 females Age: 14 (range 8–17) Challenging behavior present at baseline: all displayed physical aggression Type of living situation: community group home with 24/7 care from staff (1–4 residents)	Approach Positive Behavioral Support. Including a functional assessment and personal behavioral support plan Training staff Not reported Personal plan A behavioral support plan including environmental accommodations, direct interventions, functional skills teaching and reactive strategies.	Family was interviewed by a board-certified behavior analyst to develop interim behavioral recommendations prior to a formal behavioral support plan.	No	Frequency of physical aggression was counted and monthly reported, challenging behaviors decreased when Positive behavioral Support was applied
Jones et al. (2013) UK	22 month trial	3 people with severe ID Sex: 2 males, 1 female Age: 48 (range 46–51) Challenging behavior present at baseline: all presented with aggression and/or self-injury Type of living situation: group home in the community with 24/7 care from staff	Approach Active Support (and positive interaction as secondary approach). Training staff All received training in the approaches, as well as in British Institute for Learning Disabilities accredited physical intervention techniques and an in-service ‘understanding challenging behavior’ training’. Personal plan An individual Behavior Support Plan was created by a specialist behavior team, focusing on secondary prevention and reactive strategies.	Not reported	No	Frequency of challenging behaviors was counted, challenging behaviors decreased
		1 person with severe ID Sex: 1 female Age: mid-40s Challenging behavior present at baseline: aggression and/or self-injury and territorial behavior Type of living situation: single flat on a campus-based residential service	Approach Active Support (and TEACHH as secondary approach). Training staff All received training in the approaches, as well as in British Institute for Learning Disabilities accredited physical intervention techniques and an in-service “understanding challenging behavior” training’. Personal plan Not reported	Not reported	No	Frequency of challenging behavior was counted, challenging behaviors decreased
Koritsas et al. (2008) Australia	9 month trial	12 people with moderate or severe ID Sex: 9 males, 3 females Age: 37 (range 27–57) Challenging behavior present at baseline: not reported Type of living situation: group home	Approach Active Support Training staff AS training program for (casual) support workers. 3 days of classroom-style training and 2 days of 1-on-1 interactive training. Personal plan Not reported	Not reported	No	Developmental Behavior Checklist for Adults, challenging behaviors decreased significantly
MacDonald et al. (2010) UK	22 month single case report	1 person with a severe ID Sex: 1 male Age: not reported Challenging behavior present at baseline: self-injury, aggression and property destruction Type of living situation: own apartment with care of 2 support workers 24 h a day	Approach Positive Behavioral Support; a functional assessment to determine causes of the challenging behavior and execution of the multi-element Behavioral Support Plan. Training staff Systematic staff training and 1-on-1 training by the specialist PBS team for all staff members (verbal, role-play and real-life competence training). Personal plan A multi-element behavioral support plan that includes proactive strategies (ecological changes, positive programming, focused support and reactive strategies)	Not reported	No	Frequency, severity and duration of self-injurious, aggressive, and destructive behaviors were counted, all types of challenging behavior decreased
MacDonald et al. (2018) UK	12 month controlled trial	50 people, level of ID not reported Sex: 35 males, 15 females Age: 41 (range 18–63) Challenging behavior present at baseline: present in some, but not all participants Type of living situation: community group homes	Approach Positive Behavior Support; Training for managers for 1 year (2 days introduction, 8 1-day workshops). Formulation of individual plans. Training staff No, managers received training. Personal plan Yes, including at least 4 proactive strategies (ecological interpersonal; ecological activity; positive programming, either functionally equivalent or coping and tolerance; focused support, either reinforcement protocol or antecedent control strategy) and a reactive strategy.	Not reported	No	Aberrant Behavior Checklist, challenging behaviors decreased significantly
McClean et al. (2007) Ireland	24 month multiple baseline case study	4 people with a mild, moderate or severe ID Sex: 3 males, 1 female Age: 26 (range 21–37) Challenging behavior present at baseline: all presented with either aggression or self-injury Type of living situation: 1 participant in a group home, 4 participants in fulltime residential care in the community	Approach Positive Behavioral Support; functional assessments (informant assessments, descriptive assessments, behavioral observation, historical analysis, antecedent analysis and consequence analysis, hypothesis development and systematic observation to test hypotheses), interventions following a plan Training staff For one individual with intellectual disability, staff were trained in nonviolent crisis intervention, for another individual with intellectual disability staff was trained to lower the arousal level of their response to self-injury Personal plan Multi-element behavioral support plan (environmental accommodations, skills teaching, direct interventions, reactive strategies)	In some cases, family was interviewed as part of the functional assessments. Family participated in multidisciplinary mental health reviews if these were required for their relative. One individual with intellectual disability was given more frequent opportunities to listen to mother on the phone as part of the support plan. One individual with intellectual disability was desensitized to family contact as part of the support plan.	For one individual with intellectual disability increased contact with family was reported	Frequency of challenging behavior was counted, challenging behaviors decreased
McGill et al. (2018) UK	11 month cluster randomized controlled trial	38 people, ID Sex: 13 males, 24 females Age: 48 (range 19–84) Challenging behavior present at baseline: 24 presented with challenging behavior Type of living situation: residential setting (1–8 residents)	Approach Setting-wide Positive Behavioral Support; researchers formulated goals for each setting to work on, in the areas of social care (activities and skill development, health, service staff, management, relationships with families and others, communication and social Interaction, wider organization, and physical environment). Regular meetings with managers to check progress, train staff and managers where needed. Training staff Staff was trained where deemed necessary by researchers. Personal plan Not reported. Goals were set for the service, not for a single person.	All participating settings formulated standards on maintaining regular, positive contact with family members for the individuals with intellectual disability. Some settings formulated standards on establishing family contact for people with intellectual disability, and for the setting to have and safeguard contact with family Family was asked to evaluate the intervention after completion of the intervention.	No	Aberrant Behavior Checklist-Community, challenging behavior decreased significantly
Sandjojo et al. (2018) The Netherlands	6 month controlled trial	15 people with a borderline, mild, moderate or severe ID Sex: 8 males, 7 females Age: 31 (range) Challenging behavior present at baseline: present in some individuals with intellectual disability, unknown in how many. Type of living situation: group homes	Approach On Your Own Two Feet; supporting self-management of people with intellectual disability through coaching and focusing on positive aspects. Training staff 2 day classroom training for staff to explain and practice the methodology. Personal plan Not reported.	Not reported	No	Developmental Behavior Checklist, no decrease in challenging behaviors
Stancliffe et al. (2010) Australia	8 month trial	41 people, level of ID not reported Sex: 27 males, 14 females Age: 44 (range 25–63) Challenging behavior present at baseline: some participants presented with challenging behavior Type of living situation: group homes (3–6 residents)	Approach Active Support; staff engaged with individual with intellectual disability in meaningful tasks. Training staff 3-day group classroom training and 2-hour individual interactive training Personal plan An activity and support plan including opportunity goals and protocols on how to complete any activity.	Not reported	No	ICAP general maladaptive index, challenging behavior decreased significantly
Totsika et al. (2010) UK	6 month trial	21 people with moderate or severe ID Sex: 12 males, 9 females Age: 46 (range 28–75) Challenging behavior present at baseline: not reported Type of living situation: community homes	Approach Interactive training component of Active Support; staff engaged participants with intellectual disability in meaningful tasks under supervision of trainers. Training staff Several months prior to the study, staff received classroom training on active support. Staff received 15 sessions of 1,5 hours of the interactive training component individually from a lead and a support trainer. Personal plan Plans were in place for most individual with intellectual disability prior to the study and not adapted specifically for the study.	Not reported	No	Behavior Problems Inventory-01, no decrease in challenging behaviors
Tyrer et al. (2017) UK	15 month cluster randomized controlled trial	85 people, level of ID not reported Sex: not reported Age: not reported Challenging behavior present at baseline: at least 1 participant of each home presented with challenging behavior Type of living situation: care homes	Approach Nidotherapy; consists of person-environment understanding, environmental analysis, creation of a new environmental pathway (nidopathway) and monitoring of the pathway. Training staff Written introduction on Nidotherapy, explanation of the 4 components over 6 months time Personal plan Not reported	Not reported	No	Modified Overt Aggression Scale, Problem Behavior Check List, Quantification of Aggression Scale, no decrease in challenging behaviors

Figure 1. Selection of included publications

Beadle‐Brown, J., Hutchinson, A., & Whelton, B. (2012). Person‐centred active support– Increasing choice, promoting independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities, 25(4), 291–307. http://dx.doi.org/10.1111/j.1468-3148.2011.00666.x

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Chou, Y. C., Harman, A. D., Lin, C. J., Lee, W. P., Chang, S. C., & Lin, M. L. (2011). Outcome evaluation of active support training in Taiwan. Research in Developmental Disabilities, 32(3), 1130–1136. http://dx.doi.org/10.1016/j.ridd.2011.01.011

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De Wein, M., & Miller, L. K. (2009). The teaching-family model: A program description and its effects on the aggressive behaviors and quality of life of two adults with intellectual disabilities. Journal of Positive Behavior Interventions, 11(4), 235–251. https://doi.org/10.1177/1098300709332344

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Galli Carminati, G., Gerber, F., Kempf-Constantin, N., & Baud, O. (2007). Evolution of adults with autism and profound intellectual disabilities living within a structured residential programme: A 21-month longitudinal study. Schweizer Archiv für Neurologie und Psychiatrie, 158(5), 233–241.

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Grey, I., Mesbur, M., Lydon, H., Healy, O., & Thomas, J. (2018). An evaluation of positive behavioural support for children with challenging behaviour in community settings. Journal of Intellectual Disabilities, 22(4), 394–411. https://doi.org/10.1177/1744629517716545

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Jones, E., Lowe, K., Brown, S., Albert, L., Saunders, C., Haake, N., & Leigh, H. (2013). Active support as a primary prevention strategy for challenging behaviour. International Journal of Positive Behavioural Support, 3(1), 16–30.

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Koritsas, S., Iacono, T., Hamilton, D., & Leighton, D. (2008). The effect of active support training on engagement, opportunities for choice, challenging behaviour and support needs. Journal of Intellectual & Developmental Disability, 33(3), 247–256. https://doi.org/10.1080/13668250802282944

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MacDonald, A., Hume, L., & McGill, P. (2010). The use of multi‐element behaviour support planning with a man with severe learning disabilities and challenging behaviour. British Journal of Learning Disabilities, 38(4), 280–285. http://dx.doi.org/10.1111/j.1468-3156.2009.00602.x

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MacDonald, A., McGill, P., & Murphy, G. (2018). An evaluation of staff training in positive behavioural support. Journal of Applied Research in Intellectual Disabilities, 31(6), 1046–1061. http://dx.doi.org/10.1111/jar.12460

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McClean, B., Grey, I. M., & McCracken, M. (2007). An evaluation of positive behavioural support for people with very severe challenging behaviours in community-based settings. Journal of Intellectual Disabilities, 11(3), 281–301. https://doi.org/10.1177/1744629507080791

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McGill, P., Vanono, L., Clover, W., Smyth, E., Cooper, V., Hopkins, L., Joyce, C., Henderson, K., Sekasi, S., Davis, S., Deveau, R., & Barratt, N. (2018). Reducing challenging behaviour of adults with intellectual disabilities in supported accommodation: A cluster randomized controlled trial of setting-wide positive behaviour support. Research in Developmental Disabilities, 81, 143–154. http://dx.doi.org/10.1016/j.ridd.2018.04.020

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Sandjojo, J., Zedlitz, A. M., Gebhardt, W. A., Hoekman, J., Dusseldorp, E., Den Haan, J. A., & Evers, A. W. (2018). Training staff to promote self‐management in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 31(5), 840–850. http://dx.doi.org/10.1111/jar.12440

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Stancliffe, R. J., McVilly, K. R., Radler, G., Mountford, L., & Tomaszewski, P. (2010). Active support, participation and depression. Journal of Applied Research in Intellectual Disabilities,23(4), 312–321. http://dx.doi.org/10.1111/j.1468-3148.2009.00535.x

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Totsika, V., Toogood, S., Hastings, R. P., & McCarthy, J. (2010). The effect of active support interactive training on the daily lives of adults with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 23(2), 112–121. http://dx.doi.org/10.1111/j.1468-3148.2009.00510.x

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Tyrer, P., Tarabi, S. A., Bassett, P., Liedtka, N., Hall, R., Nagar, J., Tyrer, P., Imrie, A., & Tyrer, H. (2017). Nidotherapy compared with enhanced care programme approach training for adults with aggressive challenging behaviour and intellectual disability (NIDABID): Cluster-randomised controlled trial. Journal of Intellectual Disability Research, 61(6), 521–531. http://dx.doi.org/10.1111/jir.12360

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