Family involvement in rehabilitation programmes for children and adolescents with acquired brain injury: A scoping literature review.

Paediatric acquired brain injury (ABI) can adversely impact families, and it is widely accepted that families should be involved in the rehabilitation of children/adolescents with ABI. However, there is limited guidance about how to best involve families in paediatric ABI rehabilitation. Several programmes involving the families of children/adolescents with ABI have been developed, but there are no published reviews outlining their characteristics. This scoping literature review aimed to synthesize information about these programmes and develop an understanding of how families are involved in them. Four databases were systematically searched to identify sources of evidence that described programmes in paediatric ABI rehabilitation that involve family members. One hundred and eight sources of evidence describing 42 programmes were included. Programmes were categorized as: service coordination (n = 11), psychosocial (n = 17), support groups (n = 4), training/instruction (n = 9), and education (n = 1). Families' involvement in these programmes varied across programme development, delivery, and evaluation stages. The findings of this scoping literature review outline how families can be involved in paediatric ABI rehabilitation. While this review outlines many approaches to supporting families, it also highlights the need for models of family-centred care to better articulate how clinicians and services can involve families in paediatric ABI rehabilitation.

Engaging children and adolescents with acquired brain injury and their families in goal setting: The family perspective.

This study explored the experiences of goal setting in paediatric rehabilitation from the perspectives of children and adolescents with acquired brain injury (ABI) and their parents in paediatric rehabilitation. Using a qualitative research design, 15 semi-structured interviews were conducted with 13 parents and 8 young people with ABI aged between 9 and 18 years who were engaged in outpatient rehabilitation. Interview transcripts were analysed using constructivist grounded theory methods. Two main themes and several sub-themes emerged: Experiences of goal setting: The role of professionals; The role of the young person; and The role of the parents. Working as a team: Understanding each other and building trust; Communicating, sharing knowledge and different perspectives; and Being flexible. These themes reflect parent's and young people's experience of goal setting during paediatric rehabilitation for ABI and suggest clinicians play an important role in educating young people and their families about goal setting in the outpatient rehabilitation context. Young people and their parents also perceive the focus of outpatient rehabilitation as working collaboratively with clinicians to gain knowledge to manage the consequences of ABI. Our findings emphasize the importance of the therapeutic consumer-clinician relationship and the need to actively engage young people in goal setting.

Rehabilitation models of care for children and youth with traumatic brain and/or spinal cord injuries: A focus on service structure, service organization, and the barriers and facilitators of rehabilitation service provision.

To understand the systems underlying current rehabilitation models of care used with children and youth (0-21years) who sustain traumatic brain and/or spinal cord injuries. This study gathered qualitative data on service structures, service organization, and the barriers and facilitators of service provision in selected medical rehabilitation service(s) (MRS) and community-based rehabilitation service(s) (CBRS). Informants from 11 rehabilitation services were interviewed using a semi-structured interview guide. Interviews were analysed in NVivo using content analysis method. Experiences shared by the service representatives indicated that most services supported children and youth with brain injury, with a limited number also specializing in spinal cord injuries. MRS often delivered care in inpatient or outpatient settings, while CBRS offered home/community-based services. Care planning often started either prior to or shortly after admission from acute care settings, using either multidisciplinary or interdisciplinary teamwork models. Strengths of the services included innovation and provision of family-centred care; while challenges experienced included difficulty translating evidence into practice and poor team communication. Models of care were similar across services, with a focus on providing family-centred care. Several shared challenges were described, and service representatives expressed interest in forming partnerships and collaborations to address these challenges through innovative initiatives.

Engaging children and adolescents with acquired brain injury and their families in goal setting: The clinician perspective.

This paper explored clinicians' experiences of the goal setting process with children and adolescents with acquired brain injuries (ABI) and their families in paediatric neurorehabilitation. Semi-structured interviews were conducted with 13 clinicians, all members of an interdisciplinary paediatric rehabilitation service, who work with children and adolescents with ABI and their families. Interview transcripts and additional data were analysed using constructivist grounded theory methods. Three main themes and sub-themes were developed: (1) Seeing the bigger picture: Goals change over time; Families set bigger picture goals; Need-to-dos: Goals that the child/adolescent needs to achieve; and Want-to-dos: Goals that the child/adolescent wants to achieve; (2) Collaborating as a team: Everyone needs to be on the same page; Hearing the child's/adolescent's voice; and Parents as advocates; and (3) Recognizing and navigating challenges: Child-/adolescent- and family-related challenges and Time as a service-related challenge. Participants perceived the clinician's role during goal setting as that of an active collaborator, enabling children and adolescents with ABI and their families to generate meaningful goals. These findings demonstrate insights into goal setting in paediatric ABI neurorehabilitation from clinicians' perspectives, and highlight the importance of collaboration, flexibility and anticipation of challenges in facilitating children's, adolescents' and families' involvement in this process.

Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: A focus on family-centred care, psychosocial wellbeing, and transitions.

To describe current rehabilitation models of care and programmes, in Australia and internationally, related to family-centred care, psychosocial support, and transitions used for children and youth who have sustained major traumatic brain and/or spinal cord injuries. Fourteen services were interviewed, including eight medical rehabilitation services, three community-based rehabilitation services, two insurance services, and one state-wide education service provider. Semi-structured interviews were transcribed and analysed using qualitative content analysis in NVivo. Compared to the number of services supporting children and youth with traumatic brain injury, a very limited number supported those with spinal cord injury. Although valued and often included in the model of care, family-centred care was rarely systematically evaluated by the services. Most services provided psychosocial and transition support to children and youth, and their families in the short-term post-injury, but not in the long-term. Several challenges also hindered the smooth delivery of these support services, including poor communication between service providers. These findings show that services aimed to provide the best possible care to these children and youth, and their families; guided by rehabilitation models of care. However, challenges persist with regards to delivering family-centred care, coordinating return to school, and providing long-term support for psychosocial problems and transition.

Tailoring education of adults with cognitive impairment in the inpatient hospital setting: A scoping review.

INTRODUCTION: Education seeks to empower clients to attain and maintain knowledge and skills, and in the context of occupational therapy, to enable occupational participation. While education is routinely provided in the inpatient hospital setting, little is known about how education is best adapted to meet the needs of clients with cognitive impairment. The purpose of this scoping review was to determine what is currently known about approaches to educating adults with cognitive impairment in the inpatient hospital setting. METHODS: Five databases were systematically searched to find studies that reported on the use of education in the inpatient hospital setting with adults with cognitive impairment. RESULTS: Ten articles were retrieved from the search with duplication of authors across the articles, indicating a small group of research and researchers. Cognitive impairment was not well assessed across all the studies and none included participants with severe cognitive impairment. A number of barriers to education were identified, including time constraints, uncertainty around who should be providing education, a shortage of resources, and client-related barriers such as cognitive deficits. From the retrieved studies it was found that education should occur at multiple time points, be individually tailored, and utilise mixed modal approaches such as verbal and written methods. There was also a preference for less use of jargon, and engagement with carers and clients where possible. CONCLUSION: This scoping review highlights factors impacting the provision of education tailored to the needs of clients with cognitive impairment in the inpatient setting. The findings also call to attention the need for better assessment of cognition to guide provision of tailored education, as well as future studies exploring how to best educate clients with not only mild/moderate cognitive impairment but also more severe impairments.

Narrative storytelling as both an advocacy tool and a therapeutic process: Perspectives of adult storytellers with acquired brain injury.

As part of a larger study exploring narrative storytelling, this paper focuses upon the experiences of eight adults with ABI who had participated in storytelling workshops facilitated by an advocacy organization. Following participation in the storytelling workshops, each storyteller was interviewed twice, with three shorter interviews conducted with one participant with significant communication challenges. In total, 25 interview transcripts (17 interviews plus eight transcripts of produced personal narratives) were analysed using constructivist grounded theory methods. Data analysis produced two main themes and sub-themes; (1) Sharing and helping (feeling heard & releasing emotions) and, (2) Re-visiting my story (reflecting and learning). The themes capture insights into the process of storytelling and reveal the therapeutic potential of narrative storytelling when coupled with an altruistic opportunity to help others through story sharing. This study contributes to an emerging area of research and practice supporting positive identity growth following ABI. The findings present substantial implications for goal setting and meaningful productive engagement in brain injury rehabilitation.

Personal narrative approaches in rehabilitation following traumatic brain injury: A synthesis of qualitative research.

Although narrative storytelling has been found to assist identity construction, there is little direct research regarding its application in rehabilitation following traumatic brain injury (TBI). The aim of this review was to identify published evidence on the use of personal narrative approaches in rehabilitation following TBI and to synthesise the findings across this literature. A systematic search of four databases was conducted in December 2016. No limit was set on the start date of the search. Personal narrative approaches were defined as direct client participation in sharing personal stories using written, spoken or visual methods. The search retrieved 12 qualitative research articles on the use of personal narrative approaches in TBI rehabilitation. Thematic synthesis of the narrative data and authors' reported findings of the 12 articles yielded an overall theme of building a strengths-based identity and four sub-themes: 1) expressing and communicating to others; 2) feeling validated by the act of someone listening; 3) reflecting and learning about oneself; and 4) being productive. The findings of this review support the use of personal narrative approaches in addressing loss of identity following TBI. Healthcare professionals and the community are encouraged to seek opportunities for survivors of TBI to share their stories.

Exploring the barriers and facilitators to community reintegration for adults following traumatic upper limb amputation: a mixed methods systematic review.

PURPOSE: Traumatic upper limb amputation (ULA) is a profound injury impacting participation in activities of daily living, including those within the community setting. The objective of this work was to review literature exploring barriers, facilitators, and experiences of community reintegration in adults following traumatic ULA. METHODS: Databases were searched using terms synonymous with the amputee population and community participation. Study methodology and reporting were evaluated using McMaster Critical Review Forms, with a convergent segregated approach to synthesis and configuration of the evidence. RESULTS: A total of 21 studies met the inclusion criteria, including quantitative, qualitative and mixed-method study designs. Restoring function and cosmesis with prostheses facilitated work participation, driving and socialisation. Positive work participation was predicted by male gender, younger age, medium-high education level and good general health. Work role and environmental modifications were common, as were vehicle modifications. Qualitative findings provided insight into social reintegration from a psychosocial perspective, particularly negotiating social situations, adjusting to ULA and re-establishing identity. The review findings are limited by the absence of valid outcome measures and clinical heterogeneity across the studies. CONCLUSION: There is a dearth of literature on community reintegration following traumatic upper limb amputation, indicating a need for further research with strong methodological rigour.Implications for RehabilitationUpper limb amputation can restrict participation in activities in the community including work, socialisation, driving, leisure, and recreation.Clinicians can support community reintegration by addressing personal and environmental factors that both facilitate or inhibit participation in community activities.Prosthetics can be a facilitator for participation in community activities through the restoration of function and cosmesis.Clinicians can facilitate return to work through work modification recommendations or supported transitions to more suitable roles.

Using the Knowledge to Action framework to improve housing and support for people with Multiple Sclerosis.

Background People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study's findings. Methods Using the Knowledge to Action (KTA) framework, quantitative (n =79) and qualitative (n =6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context. Results High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers. Conclusion People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.