The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme.

INTRODUCTION: In Australia, children with cerebral palsy and complex disability receive funded supports through the National Disability Insurance Scheme (NDIS). This individualised funding scheme requires parents to navigate and advocate on behalf of their child, supported by expert reports, recommendations, and allied health services. Supports aim to enable participation in all areas of daily life, which may be otherwise largely inaccessible to children with complex disability and their families. This study aimed to explore the experiences of families of children with complex disability after 3 years accessing the NDIS. METHODS: A qualitative research design with a demographic questionnaire and in-depth interview was undertaken. Purposive sampling was used to recruit participants from one organisation providing occupational therapy and other allied health services. Data analysis implemented Braun and Clarke's thematic approach to examine the experiences of participants. CONSUMER AND COMMUNITY INVOLVEMENT: This research was conducted with a registered National Disability Insurance Scheme provider to give voice to parent consumers who raise children with complex disability. FINDINGS: Seven mothers and one father (N = 8) of children with complex disability were interviewed. Most parents reported increased success and satisfaction navigating the scheme. Five overall themes were generated from the data: pivotal roles of families, parental empowerment, life-changing equipment, the fallibility of the scheme, and a critical scheme. CONCLUSION: Parents reported reliance on the scheme for their child's basic daily care and a more enriched life for their child and family. Parents were grateful for the scheme but experienced inconsistencies, navigation difficulties, and variable choice and control. Most parents had fears about the sustainability of the scheme, translating into uncertainty about their child's future. Allied health professionals, including occupational therapists, are key advocates for children with complex disability and their families. Collaboration through sharing knowledge and skills to support children, their families, and carers is key to empowering parents to navigate the NDIS. PLAIN LANGUAGE SUMMARY: The National Disability Insurance Scheme (NDIS) provides funding for people with permanent and significant disability. Children with cerebral palsy (and other complex disability) are lifetime users of the NDIS. For children with complex disability, their families are crucial to ensuring that their daily needs are being met, including providing medication. Previous research indicated that parents rely on the NDIS to support their children; however, there have been various challenges such as long wait times for equipment and difficulty understanding how to use the scheme. This study explored the experiences of families of children with complex disability, after more than 3 years of being an NDIS participant. Eight parents from one therapy service provider completed a short questionnaire about themselves, their child, and their family, followed by an interview with the first author. Four authors (occupational therapists) worked together to design and implement this study. The findings highlighted several key points: the important role of parents as caregivers; parents became more knowledgeable and confident to navigate the NDIS with time; equipment funded by the NDIS was life-changing; the NDIS has ongoing issues; and the crucial nature of the NDIS. Occupational therapists can be extremely important to families, including with supporting families to navigate the NDIS and advocating for them. Occupational therapists must stay current with their knowledge of the NDIS as they provide lifetime support, including prescribing equipment, technology, and home modifications.

Exploring long-term outcomes of a peer support programme for parents* of children with disability in Australia.

Peer support groups can offer parents of children with disability, positive well-being outcomes. Peer support groups not only provide opportunities for connections with others with similar experiences but also provide resources and information, emotional support, a sense of belonging and may help reduce stress and isolation. Peer support groups are an established form of support existing within family centred practice. However, it is unclear whether peer support groups achieve the outcomes that they aim to deliver. Further, little is known about the longer-term outcomes for parents attending such groups. This study aimed to explore the medium- and long-term outcomes and experiences of parents who participated in a peer support programme (the Now and Next programme) for parents of children with disability. Well-being data were collected at three timepoints (Ts): prior to commencing the programme (T1), immediately after completion of the programme (T2) and 6-30 months after completion of the programme (T3). Results of the study showed empowerment and well-being improved from T1 to T2, with gains maintained at T3. Hope scores did not significantly change over time. Participants continued to set and achieve goals over time using resources from the programme. Improvements in parents' well-being and empowerment scores were maintained in the longer-term. Our study contributes to evidence confirming sustained long-term outcomes of peer support programmes and demonstrates that building parent capacity, empowerment and well-being has a lasting effect on the parents of children with disability.

Development and content validation of the Upper Limb-Motor Learning Strategy Tool for cerebral palsy.

PURPOSE: To describe the development and content validation of the Upper Limb-Motor Learning Strategy Tool (UL-MLST) that aims to guide clinicians on how to implement and document the motor learning strategies used in the upper limb therapy approaches for children with cerebral palsy. METHODS: The study consists of two main stages (1) item generation and development and (2) content validation and refinement. The UL-MLST Online Training Program, Manual and Checklist were developed by the authorship group in stage one. In stage 2, two experts evaluated the UL-MLST regarding the Relevance, Coherence, and Significance of the individual strategies and whether the tool is Relevant, Comprehensive, and Clinically useful. RESULTS: Of sixty-two strategies included in the UL-MLST, 52 strategies were rated as being either "Moderately" or "Highly" Relevant, Coherent, and Significant. Ten strategies did not achieve mutual agreement; however, they did not meet the criteria for deletion and were revised according to expert feedback. Overall, the UL-MST was judged to be Relevant, Comprehensive, and Clinically useful. CONCLUSIONS: The UL-MLST provides a valid tool to support clinicians in the implementation of the motor learning strategies for children with cerebral palsy.IMPLICATIONS FOR REHABILITATIONThe Upper Limb- Motor Learning Strategy Tool (UL-MLST) Online Training Program, Manual, and Checklist provide a comprehensive package of resources to support the application of motor learning strategies in upper limb therapy for children with cerebral palsy.The UL-MLST provides clinicians with a valid tool for self-appraising the implementation of motor learning-based therapies.The tool has the potential to improve fidelity, enhance the quality, and ensure consistency of evidence-based, task-focused approaches of therapy.

Global Citizenship: Cultural, Religious and Spiritual-An Exploratory Scoping Review.

This paper seeks to provide an exploration of the interplay between global citizenship, culture, religion and spirituality. Arksey and O'Malley's (Int J Soc Res Methodol 8(1):19-32, 2005) scoping literature review framework was utilised to qualify the research question, develop inclusion and exclusion criteria, select relevant studies, chart data and collate information. From the available peer-reviewed literature, a total of 44 articles were initially identified using the selection criteria, 19 of which were subsequently analysed. Eight main themes were identified within the literature; (1) development of global citizenship identity, (2) prosocial values and perspectives, (3) cultural competence and influence, (4) religion and religious teachings, (5) immersion experiences, (6) normative influence, (7) political compass and (8) spirituality. The literature suggests a clear link between global citizenship and spirituality. There were, however, some inconsistencies in the relationship between formalised religion and global citizenship across the studies, with evidence of religion both contributing to and detracting from prosocial values related to global citizenship. Additionally, cultural experiences, including immersion experiences, volunteering and study aboard were all positively linked to prosocial values related to global citizenship. Global citizenship provides individuals with an opportunity to develop intercultural skills, respect, sensitivity, empathy and concern for all of humanity. It is recommended that future global citizenship research should ensure adequate definitions of religion and spirituality, with caution to not generalise the two terms into one concept. Additional research into the relationship between spiritualty and global citizenship could provide a strong basis to increase understanding of the contributing factors to global citizenship identity.

Self-reported engagement in everyday activities following bilateral lung transplantation in paediatric cystic fibrosis: a single centre study.

INTRODUCTION: Following lung transplantation, it is unknown how children/adolescents self-assess their performance in everyday activities, importance of these activities, and whether resumption of everyday activities influences self-reported quality of life. The aim was to examine the effect of bilateral lung transplantation on children's/adolescent's perception of engagement in everyday activities over the first 18 months post-transplant. METHODS: A multiple-single-case-study pre-post test design was conducted at a National Paediatric Lung Transplant Service. Participants were aged under 18 years and were 3 months post first bilateral lung transplant at the time of recruitment. Outcomes were self-reported quality of life (Paediatric Quality of Life Inventory (PedsQL), Transplant Module and engagement in meaningful life roles (Child Occupational Self-Assessment (COSA) Scale) measured at 3 months and 18 months post-transplant from participants, and their parent(s) (PedsQL). Analysis included paired between-time differences and descriptive analysis. RESULTS: Seven participants were recruited to the trial with a mean age of 13 (SD 4) years and a diagnosis of cystic fibrosis. The total mean scores on PedsQL remained stable between 3 months and 18 months for both participants and parents. The PedsQL transplant module total mean scores of participants significantly increased from 3 months (M=66.58, SD=11.83) to 18 months (M=80.25, SD=11.56), t(5) = 2.91, p=0.03 whereas parents' scores remained stable. COSA responses reported 'big problems' with self-care tasks, family engagement and coping with worries at 3 months. At 18 months, the 'big problem' activities shifted to community engagement and independence. CONCLUSION: Time influences self-reported quality of life and engagement in meaningful life roles for children/adolescents and their parents 3 months to 18 months post-lung transplant. Our findings highlight the importance of focusing on occupational roles and occupational performance of children and adolescents when designing post-transplant interventions, suggesting a key role for occupational therapy after transplantation.

The Sensory Processing Measure - Second Edition: A Critical Review and Appraisal.

This paper aims to provide an overview and critique of the newly updated Sensory Processing Measure - second edition (SPM-2) to assist clinicians in understanding its strengths and limitations and in selecting an appropriate sensory processing scale that best meets their clients' needs. Using four established research methodological quality critique tools, the SPM-2's family of age-related versions was evaluated by administering the tools separately and discussed their scoring and findings to reach a consensus on all ratings. The tools identified several strengths and weaknesses of the SPM-2. The SPM-2's items on its age-related versions scored well in the criteria of internal consistency, test-retest reliability, explanation of the instrument design, construct validity, content validity, criterion validity and ease of administration, and scoring. However, a lack of normative data for participant groups outside of the United States, methodological limitations, and a lack of investigation into some important psychometric properties, particularly responsiveness, were identified as notable weaknesses of the SPM-2's items on its age-related versions based on the critique criteria. Overall, despite the areas needing further development and investigation, the SPM-2 is considered a psychometrically sound tool that provides a reliable and valid approach to measuring aspects of the sensory processing construct across the lifespan.

Are they really motor learning therapies? A scoping review of evidence-based, task-focused models of upper limb therapy for children with unilateral cerebral palsy.

PURPOSE: To identify the specific motor learning (ML) theories underpinning evidence-based, task-focused upper limb models of therapy for children with unilateral cerebral palsy; and to document the strategies used in the operationalisation of these theories. MATERIAL AND METHOD: This scoping review searched for relevant studies using eight electronic databases. A list of 68 ML strategies and accompanying definitions was developed for data extraction. Three classifications; adequate, inadequate or not described were used to rate the description of ML strategies. A corresponding colour-coding system was used to provide a visual summary. RESULTS: There is a limited description of the ML theories and strategies used to operationalise these theories in existing models of evidence-based upper limb therapy. Of 103 therapy protocols included, only 24 explicitly described the guiding ML theory. When described, there was significant variation in the underlying theories, leading to significantly different focus and content of therapy. Of the 68 ML strategies, only three were adequately described. CONCLUSIONS: To support treatment fidelity and the implementation of evidence-based, task-focused models of upper limb therapy in clinical practice, future research needs to provide explicit details about the underlying theories and strategies used in the operationalisation of these theories.Implications for rehabilitationEvidence-based models of upper limb therapy purport to be based on motor learning theory, however, most provide a very limited description of the theories and strategies used.Dosage of practice is only one element that is specific to a therapy approach and other elements guided by the principles of type of task and type of feedback should be considered.To support the implementation of evidence-based approaches in clinical practice, and improve treatment fidelity, it is important for researchers to define the theories that guide therapy approaches and explicitly describe the strategies used to operationalise these theories.

Effectiveness of peer support programmes for improving well-being and quality of life in parents/carers of children with disability or chronic illness: A systematic review.

AIM: This systematic review synthesized quantitative evidence from the past decade of the effectiveness of peer support programmes in improving the well-being and/or quality of life (QoL) for parents/carers of children with disability/chronic illnesses. BACKGROUND: For children with disability or chronic illness, parents/carers are critical in enabling or limiting their child's development. The parent's/carer's ability to provide the necessary responsive and structured care is impacted by several factors, including their own personality, skills, resources and well-being. Peer support programmes often aim to build parent/carer and/or family capabilities. Although studies and reviews have found positive benefits arising from such programmes, the impact of such programmes, specifically on well-being and QoL, is unknown RESULTS: Quantitative studies published between 2011 and 2020 that examined the impact of programmes with a significant peer support component on parental/carer well-being, QoL and/or distress were identified from four databases and were searched and yielded 3605 articles, with 13 articles meeting the inclusion criteria. The results suggested that peer support is effective for reducing distress and improving the well-being and QoL among parents of children with disabilities; however, the evidence is limited by a high risk of bias in the included studies. CONCLUSIONS: Although existing evidence suggests that programmes for parents/carers with a significant peer support component are beneficial for well-being and QoL, rigorous methodologies are needed in the future to gain a better understanding of the benefits of such programmes.

Primary care practitioners' perspectives of discharge communication and continuity of care for stroke survivors in Australia: A qualitative descriptive study.

Discharge communication is an important component of care transition between hospitals and community care, particularly for the complex needs of stroke survivors. Despite international research and regulation, ineffective information exchange during care transitions continues to compromise patient outcomes. Primary care practitioners are increasingly responsible for the provision of stroke care in the community, yet it is not known how their role is supported by discharge communication. The aim of this qualitative study was to describe the primary care practitioner perspective of discharge communication, identifying the barriers and enablers relative to continuity of care for stroke survivors. Semi-structured telephone interviews were conducted with primary care practitioners across Australia, between April and September 2020. Data were analysed using thematic analysis with a constant-comparison approach. The findings suggest that discharge communication is often inadequate for the complex care and recovery needs of stroke survivors. The challenges in accessing care plans were noted barriers to continuity of care, while shared understandings of stroke survivors' needs were identified as enablers. As discharge communication processes were perceived to be disconnected, primary care practitioners suggested a team approach across care settings. It is concluded that initiatives are required to increase primary care collaboration with hospital teams (which include stroke survivors and their caregivers) to improve continuity of care after stroke.

Methods and Effectiveness of Communication Between Hospital Allied Health and Primary Care Practitioners: A Systematic Narrative Review.

BACKGROUND: There is a compelling rationale that effective communication between hospital allied health and primary care practitioners may improve the quality and continuity of patient care. It is not known which methods of communication to use, nor how effectively they facilitate the transition of care when a patient is discharged home from hospital. Our systematic review aims to investigate the methods and effectiveness of communication between hospital allied health and primary care practitioners. METHODS: Systematic review of quantitative and qualitative studies with narrative synthesis. Medline, CINAHL, EMBASE, PsycInfo and Proquest Nursing and Allied Health Sources were searched from January 2003 until January 2020 for studies that examined hospital-based allied health professionals communicating with community-based primary care practitioners. Risk of bias in the different study designs was appraised using recognized tools and a content analysis conducted of the methodologies used. RESULTS: From the located 12,281 papers (duplicates removed), 24 studies met the inclusion criteria with hospital allied health communicating in some form with primary care practitioners. While none of the included studies specifically investigated the methods or effectiveness of communication between hospital allied health and primary care practitioners, 12 of the 24 studies described processes that addressed components of their discharge communication. Four enablers to effective communication between hospital allied health and primary care practitioners were identified: multidisciplinary care plans, patient and caregiver involvement, health information technology and a designated person for follow up/care management. CONCLUSION: There is currently no "gold standard" method or measure of communication between hospital allied health and primary care practitioners. There is an urgent need to develop and evaluate multidisciplinary communication with enhanced information technologies to improve collaboration across care settings and facilitate the continuity of integrated people-centered care.

Relationship Between Sensory Processing and Pretend Play in Typically Developing Children.

OBJECTIVE: We sought to investigate the relationship between sensory processing and pretend play in typically developing children. METHOD: Forty-two typically developing children ages 5-7 yr were assessed with the Child Initiated Pretend Play Assessment and the Home and Main Classroom forms of the Sensory Processing Measure (SPM). RESULTS: There were significant relationships between elaborate pretend play and body awareness (r = .62, p < .01), balance (r = .42, p < .01), and touch (r = .47, p < .01). Object substitution was associated with social participation (r = .42, p < .05). CONCLUSIONS: The sensory processing factors (from the SPM)-namely, Body Awareness, Balance, Touch, and Social Participation-were predictive of the quality of children's engagement in pretend play in the home environment. The results indicated that, to engage and participate in play, children are involving sensory processing abilities, especially body awareness, balance, and touch.