Preferences for telehealth: A qualitative study with people accessing a new mental health service.

Objectives: To examine preferences for telehealth versus in-person services for people who sought mental health support from an unfamiliar service during the COVID-19 pandemic and to identify the factors that influenced these preferences. Methods: Data are drawn from semi-structured interviews with 45 participants (32 people who accessed mental health services, 7 informal support people, and 6 people who accessed services themselves as well as identifying as informal supports). Data relating to experiences of telehealth, comparisons with in-person services and preferences were coded inductively and analysed using qualitative content analysis. Results: Just over half of the participants in our sample preferred telehealth or at least regarded it as a suitable option. Those who preferred telehealth were more likely to have had direct experience, particularly via videoconferencing, as part of their access to this new mental health service. Reasons for preferring in-person services included belief in the superiority of interpersonal communication in these settings, compatibility with personal communication style and discomfort with technology. Those preferring telehealth cited its convenience, elimination of the need to travel for services, the comfort and safety afforded by accessing services at home and the ability to communicate more openly. Conclusions: Hybrid models of care which harness the unique benefits of both in-person and remote service modalities appear to have a legitimate place in models of mental health care outside of pandemic situations. These results illuminate the potential of telehealth services when engaging with people seeking mental health help for the first time and in situations where existing relationships with service providers have not yet been established.

Changes in von Willebrand Factor Multimers, Concentration, and Function During Pediatric Extracorporeal Membrane Oxygenation.

OBJECTIVES: To investigate changes in von Willebrand factor (VWF) concentration, function, and multimers during pediatric extracorporeal membrane oxygenation (ECMO) and determine whether routine monitoring of VWF during ECMO would be useful in predicting bleeding. DESIGN: Prospective observational study of pediatric ECMO patients from April 2017 to May 2019. SETTING: The PICU in a large, tertiary referral pediatric ECMO center. PATIENTS: Twenty-five neonates and children (< 18 yr) supported by venoarterial ECMO. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Arterial blood samples were collected within 24 hours pre-ECMO, daily for the first 5 days of ECMO, every second day until decannulation, and 24 hours post-ECMO. The STA R Max analyzer was used to measure VWF antigen (VWF:Ag) and ristocetin cofactor (VWF:RCo) activity. VWF collagen binding (VWF:CB) was measured using an enzyme-linked immunosorbent assay. VWF multimers were measured using the semi-automated Hydragel 11 VWF Multimer assay. Corresponding clinical data for each patient was also recorded. A total of 25 venoarterial ECMO patients were recruited (median age, 73 d; interquartile range [IQR], 3 d to 1 yr). The median ECMO duration was 4 days (IQR, 3-8 d) and 15 patients had at least one major bleed during ECMO. The percentage of high molecular weight multimers (HMWM) decreased and intermediate molecular weight multimers increased while patients were on ECMO, irrespective of a bleeding status. VWF:Ag increased and the VWF:RCo/VWF:Ag and VWF:CB/VWF:Ag ratios decreased while patients were on ECMO compared with the baseline pre-ECMO samples and healthy children. CONCLUSIONS: Neonates and children on ECMO exhibited a loss of HMWM and lower VWF:CB/VWF:Ag and VWF:RCo/VWF:Ag ratios compared with healthy children, irrespective of major bleeding occurring. Therefore, monitoring VWF during ECMO would not be useful in predicting bleeding in these patients and changes to other hemostatic factors should be investigated to further understand bleeding during ECMO.

How do Mental Health Services Foster Hope? Experience of People Accessing Services.

Hope is essential to mental health recovery, yet little is known about how mental health services can foster hope. This paper addresses the question: How can mental health services influence the sense of hope experienced by people who access their services? Sixty-one people who accessed a new mental health service were interviewed about their experiences, including about how the service had influenced their sense of hope. Interviews were analysed using constant comparative analysis. The data revealed that hope increased when people perceived positive changes in themselves and their circumstances: developing new understandings and perspectives; having effective strategies to manage challenges; seeing progress or having plans; and having support. Changes were attributed to three major features of the service: accessibility; staff competence and wisdom; and caring interactions. The findings highlight that, while individual clinicians are important, other interactions with services and the wider service context are also critical for facilitating hope.

Factors XI and XII in extracorporeal membrane oxygenation: longitudinal profile in children.

Background: Extracorporeal membrane oxygenation (ECMO) is used in children with cardiopulmonary failure. While the majority of ECMO centers use unfractionated heparin, other anticoagulants, including factor XI and factor XII inhibitors are emerging, which may prove suitable for ECMO patients. However, before these anticoagulants can be applied in these patients, baseline data of FXI and FXII changes need to be acquired. Objectives: This study aimed to describe the longitudinal profile of FXI and FXII antigenic levels and function before, during, and after ECMO in children. Methods: This is a prospective observational study in neonatal and pediatric patients with ECMO (<18 years). All patients with venoarterial ECMO and with sufficient plasma volume collected before ECMO, on day 1 and day 3, and 24 hours postdecannulation were included. Antigenic levels and functional activity of FXI and FXII were determined in these samples. Longitudinal profiles of these values were created using a linear mixed model. Results: Sixteen patients were included in this study. Mean FXI and FXII antigenic levels (U/mL) changed from 7.9 and 53.2 before ECMO to 6.0 and 34.5 on day 3 and they recovered to 8.8 and 39.4, respectively, after stopping ECMO. Function (%) of FXI and FXII decreased from 59.1 and 59.0 to 49.0 and 50.7 on day 3 and recovered to 66.0 and 54.4, respectively. Conclusion: This study provides the first insights into changes of the contact pathway in children undergoing ECMO. FXI and FXII antigen and function change during ECMO. Results from this study can be used as starting point for future contact pathway anticoagulant studies in pediatric patients with ECMO.

Platelet Phenotype and Function Changes With Increasing Duration of Extracorporeal Membrane Oxygenation.

OBJECTIVES: To investigate platelet pathophysiology associated with pediatric extracorporeal membrane oxygenation (ECMO). DESIGN: Prospective observational study of neonatal and pediatric ECMO patients from September 1, 2016, to December 31, 2019. SETTING: The PICU in a large tertiary referral pediatric ECMO center. PATIENTS: Eighty-seven neonates and children (< 18 yr) supported by ECMO. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Arterial blood samples were collected on days 1, 2, and 5 of ECMO and were analyzed by whole blood flow cytometry. Corresponding clinical data for each patient was also recorded. A total of 87 patients were recruited (median age, 65 d; interquartile range [IQR], 7 d to 4 yr). The median duration of ECMO was 5 days (IQR, 3-8 d) with a median length of stay in PICU and hospital of 18 days (IQR, 10-29 d) and 35 days (IQR, 19-75 d), respectively. Forty-two patients (48%) had at least one major bleed according to a priori determined definitions, and 12 patients (14%) had at least one thrombotic event during ECMO. Platelet fibrinogen receptor expression decreased (median fluorescence intensity [MFI], 29,256 vs 26,544; p = 0.0005), while von Willebrand Factor expression increased (MFI: 7,620 vs 8,829; p = 0.0459) from day 2 to day 5 of ECMO. Platelet response to agonist, Thrombin Receptor Activator Peptide 6, also decreased from day 2 to day 5 of ECMO, as measured by binding with anti-P-selectin, PAC-1 (binds activated GPIIb/IIIa), and anti-CD63 monoclonal antibodies (P-selectin area under the curve [AUC]: 63.46 vs 42.82, respectively, p = 0.0022; PAC-1 AUC: 93.75 vs 74.46, p = 0.0191; CD63 AUC: 55.69 vs 41.76, p = 0.0020). CONCLUSIONS: The loss of platelet response over time may contribute to bleeding during ECMO. These novel insights may be useful in understanding mechanisms of bleeding in pediatric ECMO and monitoring platelet markers clinically could allow for prediction or early detection of bleeding and thrombosis.

Environmental and systemic challenges to delivering services for Aboriginal adults with a disability in Central Australia.

PURPOSE: This two-year (2016-2018) study aimed to identify what a good life is for Aboriginal people with disability in remote Central Australia and how service providers can support them to achieve a good life. This paper presents the findings that relate to barriers to delivering services for Aboriginal people with disability. METHODS: In-depth interviews and focus groups were held with Aboriginal people with disability and their carers aged at least 18 years from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Lands and community organisations providing services there. The data were analysed using thematic analysis. RESULTS: There were 109 participants, of whom 47 were workers in service provider organisations and 62 were Aboriginal people. From the data, barriers to delivering services to support Aboriginal people to live a good life and solutions to overcome the barriers, were identified and described under the headings of environmental barriers and systemic issues. CONCLUSIONS: We discuss the policy implications of these findings with regard to addressing Indigenous disadvantage and how governments, service providers, communities, and Aboriginal people with disability and their families can work in partnership to address these barriers.Implications for RehabilitationIndigenous people with disability living in remote and very remote communities experience significant access and equity barriers to culturally responsive services that enable them to live a socially and culturally engaged life.Localised government and service provider disability policy approaches in Indigenous communities need to focus on both environmental and systemic issues.Greater investment in local remote communities is required to build the capacity of Indigenous families to support Aboriginal people with a disability to live a culturally and socially included life.

Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

Mothers of a child with Down syndrome: A qualitative analysis of the perspectives on non-invasive prenatal testing.

OBJECTIVE: The introduction of non-invasive prenatal testing (NIPT) for Down syndrome (DS) has sparked social and ethical debates. To date, in-depth exploration of the voices of Australian mothers of a child with DS about NIPT has been lacking. The purpose of this study was to investigate the perspectives of Australian mothers of a child with DS towards the increasing availability of NIPT. DESIGN AND SETTING: Fifteen mothers of children with DS aged 8 months-39 years participated in-depth interviews, conducted online via the software Zoom™. An inductive thematic analysis of interview data explored mothers' perceptions of NIPT. FINDINGS: Mothers perspectives were nuanced and personal to each woman's circumstance. All mothers highlighted the inevitable association between testing and termination, the importance of autonomy and respecting [m]others' choices to test and to terminate, and that appropriate supports must be provided to ensure informed decision-making. These perspectives existed within an overarching theme of NIPT reflecting and reinforcing societal attitudes towards disability. CONCLUSION: Mothers of a child with DS viewed informed decision-making as crucial both prior to undertaking NIPT and following a positive test result. This study adds a unique Australian perspective to the necessary ongoing social and ethical debate.

'We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.

Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.

Anticoagulation during ECMO in neonatal and paediatric patients.

Extracorporeal Membrane Oxygenation (ECMO) is a form of Extracorporeal Life Support (ECLS) which is used frequently in the paediatric and neonatal setting to support either the pulmonary, or both the pulmonary and cardiac systems. Management of ECMO requires the use of systemic anticoagulation to prevent patient and circuit based thrombosis, which in turn increases the risk of haemorrhage. A number of coagulation tests, laboratory and point of care based, are used to monitor anticoagulation, however the evidence for correlation of the test results with level of anticoagulant and clinical outcomes in children remains poor.

Bleeding and thrombotic events occur early in children on durable ventricular assist devices.

INTRODUCTION: Durable Ventricular Assist Devices (VADs) are increasingly used in children with end-stage heart failure. Major complications are bleeding and thromboembolism (TE). Our objective was to determine the timing, incidence and risk factors for bleeding and TE in children implanted with VADs. METHODS: This was a retrospective cohort of 8 years experience for children implanted with HeartWare HVAD and Berlin Heart EXCOR VADs at the Royal Children's Hospital, Melbourne. RESULTS: 44 patients were implanted with Berlin Heart EXCOR or HeartWare HVAD devices. Major bleeding occurred in 17 patients (39%), 7 (16%) experienced thromboembolic strokes, 13 (30%) required device exchange for TE, and 4 (9%) experienced arterial thromboembolism. Twenty-seven patients (61%) were transplanted, three (7%) recovered, and six (14%) remain on device when censored. Eight patients (18%) died on VAD, with leading causes being thromboembolic stroke and intracranial bleeding. The majority of bleeding events and thromboembolic events occurred while patients were on unfractionated heparin (bleeding 66%, TE 40.5%) or transitioning between heparin and warfarin (bleeding 22%, TE 38%). Majority of patients were on more than one antiplatelet agent at the time of a major bleeding (87%) or thromboembolic (89%) event. CONCLUSIONS: The majority of bleeding and TE events occurring in children supported with durable VADs occur when they are on unfractionated heparin or transitioning to warfarin. Modifications to anticoagulation and monitoring in the early post-operative periods should be a research focus.

Rituximab and protection from vaccine preventable diseases: applying the evidence to pediatric patients.

INTRODUCTION: This article analyses and highlights the challenge of immunization and preventing vaccine preventable diseases in pediatric patients on rituximab. Rituximab is a chimeric anti-CD 20 monoclonal antibody that is an immunosuppressant affecting both cellular and humoral immunity. Children and adolescents on rituximab are at increased risk of infection and vaccine preventable diseases, and require additional strategies to optimize and maximize their protection against such illnesses. Areas covered: This article provides a comprehensive MEDLINE and Pubmed review of existing literature regarding vaccine immunogenicity and safety in patients on rituximab, and assists in providing an evidence base to develop immunization guidelines. Of particular note, the use of live-attenuated vaccines and optimum timing of vaccines post rituximab is considered and discussed. Expert commentary: The increasing use of rituximab in a variety of novel areas within pediatrics must be accompanied by informed discussion around mitigating the risks. These include immunosuppression, and potential susceptibility to infection. Optimizing vaccine status by establishing adequate antibody titers prior to commencement remains the best preventative strategy.

The development of a framework for high-quality, sustainable and accessible rural private therapy under the Australian National Disability Insurance Scheme.

PURPOSE: The Australian National Disability Insurance Scheme (NDIS) will provide people with individual funding with which to purchase services such as therapy from private providers. This study developed a framework to support rural private therapists to meet the anticipated increase in demand. METHOD: The study consisted of three stages utilizing focus groups, interviews and an online expert panel. Participants included private therapists delivering services in rural New South Wales (n = 28), disability service users (n = 9) and key representatives from a range of relevant consumer and service organizations (n = 16). We conducted a thematic analysis of focus groups and interview data and developed a draft framework which was subsequently refined based on feedback from stakeholders. RESULTS: The framework highlights the need for a 'rural-proofed' policy context in which service users, therapists and communities engage collaboratively in a therapy pathway. This collaborative engagement is supported by enablers, including networks, resources and processes which are influenced by the drivers of time, cost, opportunity and motivation. CONCLUSIONS: The framework identifies factors that will facilitate delivery of high-quality, sustainable, individualized private therapy services for people with a disability in rural Australia under the NDIS and emphasizes the need to reconceptualize the nature of private therapy service delivery. Implications for Rehabilitation Rural private therapists need upskilling to work with individuals with disability who have individual funding such as that provided by the Australian National Disability Insurance Scheme. Therapists working in rural communities need to consider alternative ways of delivering therapy to individuals with disability beyond the traditional one-on-one therapy models. Rural private therapists need support to work collaboratively with individuals with disability and the local community. Rural private therapists should harness locally available and broader networks, resources and processes to meet the needs and goals of individuals with disability.

Dual sensory impairment and hearing aid use among clients attending low-vision services in Australia: the vision-hearing project.

OBJECTIVE: To report the frequency of hearing impairment among vision rehabilitation clients, and to identify patterns of hearing service and aid use. METHOD: In the Vision-Hearing Project, 300 participants (65+ years) completed interviews and a hearing test at low-vision clinics. Visual impairment was defined as visual acuity <20/40 (better eye) wearing glasses if owned, and hearing impairment as average pure-tone air conduction threshold >25 dB hearing level (HL) over four frequencies (500, 1000, 2000, 4000 Hz, better ear). Dual sensory impairment (DSI) was defined as presence of both impairments. RESULTS: Bilateral hearing impairment was identified in 79.7% of participants and DSI in 62.1%. Only 59.8% of hearing impaired participants owned hearing aids and 33.8% reported low use (<1 hr/day). DISCUSSION: Four in five low-vision clients experience hearing impairment, and many have unmet needs. New models of sensory assessment that take account of hearing and vision are needed to support early detection and timely rehabilitation for DSI.

Role strain in occupational therapy fieldwork educators.

OBJECTIVE: The purpose of this study was to determine if occupational therapy fieldwork educators are experiencing role strain. PARTICIPANTS: Were recruited from a convenience sample of a university database of 315 fieldwork sites. METHODS: The Role Strain in Occupational Therapy Fieldwork Educators Inventory was used to gather qualitative and quantitative data about practice. RESULTS: The overall mean for role strain was 2.34/5 with a 73% return rate. The majority of participants fell into the moderate to low role strain category. Individuals with 5-10 years of practice had the greatest amount of role strain (2.43, SD 0.51, n=60). Participants working in pediatric settings had role strain in the moderate range. CONCLUSIONS: Nine items emerged with the highest amount of role strain, such as coping with job expectations and inadequate time to meet role expectations. Creation of strategies to reduce role strain should be a priority in our changing healthcare environment.

Effects of an intensive, task-specific rehabilitation program for individuals with chronic stroke: a case series.

PURPOSE: The purpose of this case series was to determine feasibility and evaluate changes in activity and participation outcomes in persons with chronic stroke after an intensive, task-specific rehabilitation program incorporating whole-body and client-centred interventions. METHOD: Participants with chronic stroke (N = 12) who were ambulatory and had at least minimal arm/hand function were recruited. The program included whole-body goal-focused activities, gait training and strengthening exercises for 4 h, 5 days per week for 2 weeks. Daily educational sessions and a home activities program were also included. Activity-based measures including the Wolf motor function test, Berg balance scale, timed up and go test and 6-min walk test and participation-based measures including the Stroke Impact Scale and Canadian Occupational Performance Measure were collected at pre-test, immediate post-test and 5-month retention. RESULTS: The effect of the intervention on participation-based outcomes was much greater than on the activity-based outcomes. Minimal detectable differences in self-perceived participation were reported for most participants. CONCLUSIONS: The intensive, task-specific intervention was a feasible program for these participants with stroke. Although minimal changes in activity-based outcomes were found, the participants perceived improvements in participation with personal goal-related activities that resulted in large effect sizes that were maintained for 5-months after the intervention.

The aging musician.

OBJECTIVE: Older musicians may develop occupational performance problems resulting from age-related changes and features unique to their occupation. The purpose of this study was to describe the impact of the aging process on an older professional musician. METHOD: A phenomenological approach was used to study the effects of the aging process on a 71 year old, semi-retired, part-time paid jazz musician. Data were gathered through interviews and observations of performance environments, and analyzed using a grounded hermeneutic approach. An expert panel facilitated theme development. RESULTS: The musician's experiences related to changes in an ability to perform his daily occupations, including music; his response to the external changes in the playing environment and in his relationships with others; and the way in which he has coped with these changes. CONCLUSION: Occupational therapists who provide intervention for older musicians must implement a client centered approach to care, which provides strategies the musician can use to overcome the challenges related to aging in order to continue professional performance.

Test-retest reliability of a student self-assessment of professional behaviors.

The test-retest reliability of the University of Indianapolis School of Occupational Therapy Student Self-Assessment for Professional Behaviors was investigated. Twenty-seven first year and 31 second year students participated in the study. Results indicated that 31 (83.78%) of 37 academic questions answered by first year students were significant for test-retest reliability and 6 (16.22%) of 37 questions were not significant at alpha level 0.05. Of the 74 combined academic and clinical questions answered by second year students, 56 (75.68%) were significant for test-rest reliability and 18 (24.32%) were not significant at alpha level 0.05. To further examine results, 5 second year students participated in a focus group. Focus group results revealed themes regarding tool impressions, individual differences, and question display. Findings emphasized areas for revision to enhance test-retest reliability of the self-assessment tool.