Educating for supported decision making and shared decision making: a scoping review of educational design and outcomes for education and training interventions.

PURPOSE: To characterise existing knowledge about the design and learning outcomes of education and training programs for supported or shared decision making. MATERIALS AND METHODS: A scoping review was performed to identify academic and grey literature, published between January 2006 and February 2022, that reported on the design and/or learning outcomes of supported or shared decision making education or training programs. Eligible literature was mapped across domains of educational design and Kirkpatrick's hierarchy of learning effectiveness, and then qualitatively synthesised using cross-case analysis. RESULTS: A total of 33 articles were identified (n = 7 for supported decision making and n = 26 for shared decision making) that provided education or training to supporters of persons with mental illness or substance use disorders (n = 14), dementia or neurocognitive disorders (n = 6), cognitive disability (n = 5), mixed populations (n = 1), and those receiving end-of-life care (n = 7). In their design, most programs sought specific changes in practice (behaviour) via experiential learning. Reported educational outcomes also focused on supporter behaviour, with limited evidence for how changes in learner attitudes, skills, or knowledge might be contributing to changes in supporter behaviour. CONCLUSIONS: Future education and training would benefit from a closer engagement with theories of teaching and learning, particularly those oriented towards co-design.

Existing education and training programs for supported and shared decision making have a solid focus on modifying supporter behaviour through information provision, reflective practice, and modelling and coaching desired behaviour.To fully realise supported decision making, education and training programs would benefit from a focus on program co-design and working within a socio-ecological model of supported decision making.Future evaluations of supported decision making education should draw from both quantitative and qualitative approaches, with a focus on identifying the learning processes through which education influences supporter behaviour, organisational practices, and client/patient outcomes.

"It's Opened My Eyes to a Whole New World": Positive Behaviour Support Training for Staff and Family Members Supporting Residents With Dementia in Aged Care Settings.

OBJECTIVES: This study examined the acceptability and usefulness of Positive Behaviour Support (PBS) training in enhancing the capabilities of support staff and family members providing behaviour support to residents with dementia in residential aged care (RAC). METHODS: A mixed-methods pilot study was conducted across 3 RAC organisations, involving pre- and post-training questionnaire assessments for clinical leaders (n = 8), support staff (n = 37) and family members (n = 18). RESULTS: Findings indicated increased confidence among support staff and family members in providing behaviour support, with 96% indicating it would support their practices across settings. Key training benefits included identifying and addressing underlying causes of challenging behaviours. A majority (89%) expressed the need for further behaviour support training. CONCLUSION: Recommendations focus on developing systems to enable effective and collaborative behaviour support practices. Further research is needed to examine application of PBS principles and planning for residents living with dementia.

The Acceptability and Usefulness of Positive Behaviour Support Education for Family Carers of People With Frontotemporal Dementia: A Pilot Study.

AIM: This pilot study investigated the acceptability and usefulness of 4 weekly Positive Behaviour Support (PBS) education sessions (delivered face-to-face and online) for family carers of individuals diagnosed with behavioural-variant frontotemporal dementia (bvFTD). These sessions were adapted from the Family-directed Approach to Brain injury (FAB)-PBS program to the FTD population. METHODS: A pre-test post-test mixed-methods design was utilized. Primary outcome measures included a Carer Confidence questionnaire and post-intervention Feedback Questionnaire. Assessments were conducted prior to the 4-week education program, immediately following the final session and a 3 months follow-up. RESULTS: Ten family carers completed the 4 PBS education sessions and indicated that the program was helpful in providing behaviour support. No significant changes in confidence ratings were found before and following the education sessions. A majority of participants, however, reported positive changes to their approach in providing behaviour support, with key themes including 'recognising the function of behaviour', 'changing their own behaviour' and 'promoting a calmer approach'. CONCLUSIONS: The FAB-PBS education sessions demonstrate to be an acceptable approach to increasing the capability of family carers in providing behaviour support to individuals with FTD, which will need to be confirmed in a larger feasibility study.

Supporting behaviour change in younger-onset dementia: mapping the needs of family carers in the community.

OBJECTIVES: Almost 10% of people with dementia experience a younger-onset of disease (before 65 years). Changes in behaviour are common, as are delays in diagnosis and limited access to appropriate support and services. This study aimed to explore the specific behaviour support needs of families living with younger-onset dementia. METHODS: Seventy-one families of people with younger-onset dementia were surveyed to understand the experience of family carers regarding difficult-to-manage behaviour changes, confidence in identifying and implementing behaviour support strategies, use of specific behaviour support strategies, and use of formal and informal support services regarding behaviour changes. RESULTS: Survey responses were received from family members of people living with behavioural variant frontotemporal dementia (n = 28), semantic dementia (n = 17), and Alzheimer's disease (n = 23). Over 90% of family carers reported difficult-to-manage behaviours which fell into four main domains: (1) aggression, (2) compulsive behaviour, (3) disinhibition and inappropriate social behaviour, and (4) apathy. A range of preventative and responsive strategies, with an emphasis on de-escalation strategies were identified and carers reported variable confidence in managing behaviour changes or in accessing formal support strategies. CONCLUSIONS: Difficult-to-manage behaviour changes in community-dwelling people with younger-onset dementia are common. The existing agency of families should be recognised and built upon with better access to specific behaviour support services to increase competence and confidence in providing behaviour support and ultimately improve quality of life for them and their family member with dementia.

"The bucket of gold at the end of the rainbow": personal experiences of hope after acquired brain injury.

PURPOSE: To investigate personal experiences of, and factors influencing hope following Acquired Brain Injury (ABI). METHODS: A qualitative phenomenological approach was adopted consisting of semi-structured interviews with 15 adults with ABI. Interviews were transcribed and analysed using thematic analysis, and the Social Ecological Model (SEM) applied as a guiding framework to discuss findings and implications for policy and practice. RESULTS: Five themes emerged: the importance of hope, changes in hope over time, the connection between hope and positivity, factors influencing hope and the importance of fostering hope. Participants reported varying experiences, with increased levels of hope influenced by: faith; supportive networks and professionals; goals; experiencing progress; having something to look forward to; and seeing others achieve. Professional attitudes were reported to either foster or negatively impact hope after brain injury. CONCLUSIONS: These findings suggest that hope can play an important and often essential role in the lives of people with ABI. Factors influencing experiences of hope are organised against a SEM framework, identifying intrapersonal, interpersonal, institutional, community, and state and national implications for policy, professional practice and research.Implications for rehabilitationHope plays a critical role in the lives of people following acquired brain injury.Factors which positively influence hope include faith, supportive networks, goals, experiencing progress, and having something to look forward to.Professionals can impact an individual's experience of hope through person-centred and supportive therapeutic relationships.

Family perspectives on the acceptability and usefulness of the FAB Positive Behaviour Support program: A pilot study.

Purpose: This pilot feasibility study aimed to gain preliminary insight into the acceptability and usefulness of the FAB-PBS program for providing behavior support to families following acquired brain injury (ABI) in community settings. The FAB-PBS program is based on a Positive Behavior Support (PBS) framework and principles of Family-Centered Care and Family-Directed Intervention. It consists of an education phase followed by individualized sessions during which the family is supported to develop and implement a PBS plan.Methods: A mixed-methods design was utilized, with feedback obtained from family members via short questionnaires and semi-structured interviews post education phase and individualized sessions, and at three-month follow up.Results: Two family members completed the full FAB-PBS program and reported high satisfaction with the program and increased confidence in providing behavior support. Findings also suggested an increase in desired behaviors and a decrease in challenging behaviors presented by family members with ABI.Conclusions: The FAB-PBS program may be an acceptable and feasible approach to increasing the capability of family caregivers in providing behavior support following ABI. Further pilot testing is required to inform the development of a larger feasibility study.

Positive behaviour support in frontotemporal dementia: A pilot study.

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals' relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants' homes. Measures collected at baseline and post-intervention (M = 3.9 months) assessed: function of behaviours, challenging behaviours, and qualitative outcomes pertaining to the acceptability of the PBS approach. PBS was an acceptable intervention for all four dyads. "Sensory" and "tangible" were the most common functions contributing to the maintenance of behaviour changes, and aspects of apathetic and disinhibited behaviours improved following intervention. This study demonstrates the acceptability and potential benefit of a PBS programme to provide support in FTD. A more rigorous trial will be an important next step in developing improved services tailored to the needs of this unique population.

Brain injury, behaviour support, and family involvement: putting the pieces together and looking forward.

Purpose: (1) to provide insight into the family's experience and support needs following acquired brain injury (ABI) specific to behavioural changes; (2) to provide an overview of empirically-based behaviour support approaches for individuals with ABI; and (3), to examine family involvement in implementing behavioural interventions.Methods: Review of the literature.Results: Family members experience significant distress resulting from neurobehavioural changes in relatives with ABI, and report unmet informational and practical support needs regarding this issue. The importance of utilising family expertise within the rehabilitation process is widely acknowledged, with the increasing involvement of family members being promoted. There is growing evidence supporting the use of positive behaviour support approaches for individuals with ABI in community settings, and evidence supporting the involvement of family within behavioural interventions.Conclusions: This review suggests the need to develop alternative support models that shift the focus towards building competence in everyday support people rather than dependency on the service system. A bottom-up approach is recommended, with the aim of addressing unmet support needs and increasing the competence of family members in supporting behaviour change in individuals with ABI. Recommendations are provided in informing an optimal community-based neurobehavioural support model. Implications for RehabilitationPositive behaviour support is recommended in supporting behavioural changes following brain injury, with family expertise utilised in this process.Evidence suggests that family members can be effectively trained in developing and implementing behaviour support strategies.Family involvement in behavioural interventions may address unmet support needs and increasing the competence of family members in supporting behavioural changes following brain injury.

Family-directed approach to brain injury (FAB) model: a preliminary framework to guide family-directed intervention for individuals with brain injury.

PURPOSE: This article proposes a theoretical framework to help professionals include family as active members in brain injury rehabilitation. A trend towards greater family involvement has lead to the development of family-collaboration models. However, current models appear to focus on information sharing rather than increasing the capability of family members. This article introduces a family-directed approach to brain injury model, which provides a theoretical framework for supporting family as facilitators of change. METHODS: Family-collaboration models and literature regarding family experiences following brain injury and support needs are reviewed to identify the driving forces behind family engagement in rehabilitation, including effective professional-family relationships, and important factors in the delivery of education underpinned by evidence-based practices. RESULTS: The family-directed approach to brain injury model is based on principles of hope, family expertise, education/skill building, and family-directed intervention. CONCLUSIONS: The family-directed approach to brain injury model provides a theoretical framework for educating and training family members as facilitators in the management process: promoting competence rather than dependency on service systems. Guiding recommendations encourage professionals to reflect on the importance of their therapeutic relationships and their capacity to positively impact rehabilitation outcomes beyond the technical aspects of health care and treatment. Implications for Rehabilitation Training family members as facilitators in the rehabilitation process is suggested to reduce dependency on the service system, address families' unmet support needs, and to optimize rehabilitation outcomes for individuals with brain injury. The family-directed approach to brain injury model is proposed to guide the increased involvement of family as active members in the rehabilitation team and to define potential active ingredients in this process.

Family involvement in behaviour management following acquired brain injury (ABI) in community settings: A systematic review.

OBJECTIVES: To examine family involvement in the management of behavioural problems following ABI in the community. RESEARCH DESIGN: Systematic literature review. METHODS: Six electronic databases relevant to the field of brain injury were searched between 1980-2013. Citation indexes were used and references from articles hand searched for further literature. Studies that met the broad inclusion criteria were screened for relevance and articles selected for full-text review independently considered by two reviewers. Those found to be relevant were analysed using PEDro and McMasters critical appraisal tools. RESULTS: Three hundred and three studies were identified after duplicates were removed and 56 were assessed for relevance, yielding 10 studies for review. Although the majority of studies were weak in design, five revealed significant findings supportive of family involvement in the management of behavioural problems following ABI, especially where interventions consisted of both educational components and individualized behavioural plans. Findings revealed no significant changes in family burden following behavioural interventions. CONCLUSIONS: There is limited research and lack of high evidence studies evaluating family involvement in behaviour management following ABI; therefore, no conclusions can be drawn regarding its efficacy. More research is needed, with larger sample sizes and more rigorous design, including proper comparison groups.