Parenting Challenges and Reasons for Not Availing Rehabilitation Services Among Families of Adolescents with Autism Spectrum Disorder: A Qualitative Study.

Background: Autism spectrum disorder (ASD) is a lifelong condition requiring continued rehabilitation services. However, children with ASD who seek rehabilitation services tend to drop out once they enter puberty, because of varying reasons, some of which are unknown. This study intended to explore the reasons for not availing of rehabilitation services in families of adolescents with ASD and the parental challenges in taking care of adolescents with ASD. Method: The study followed a descriptive qualitative research design by conducting in-depth interviews with 12 primary caregivers of adolescents with ASD (10 to 19 years; mean age 16.3 years) who were not availing of any direct rehabilitation services. All interviews were conducted by telephone, and data obtained were subjected to thematic analysis. Results: The results showed two major themes, viz. reasons for discontinuing the rehabilitation services and parental challenges among primary caregivers of adolescents with ASD, and their corresponding subthemes. The reasons for discontinuation of rehabilitation included financial difficulties, difficulties in handling the child, and a lack of improvement in the child. A few of the parental challenges were disruptive behaviors and associated medical conditions of the child and difficulty in managing changes during adolescence. Conclusion: The study revealed several reasons as well as potential barriers to avail rehabilitation services in Indian families of adolescents with ASD. The data further unveil related parenting challenges specific to the Indian context. Further, implications for service providers and policymakers are discussed.

Development of strategies to support home-based exercise adherence after stroke: a Delphi consensus.

OBJECTIVE: To develop a set of strategies to enhance adherence to home-based exercises after stroke, and an overarching framework to classify these strategies. METHOD: We conducted a four-round Delphi consensus (two online surveys, followed by a focus group then a consensus round). The Delphi panel consisted of 13 experts from physiotherapy, occupational therapy, clinical psychology, behaviour science and community medicine. The experts were from India, Australia and UK. RESULTS: In round 1, a 10-item survey using open-ended questions was emailed to panel members and 75 strategies were generated. Of these, 25 strategies were included in round 2 for further consideration. A total of 64 strategies were finally included in the subsequent rounds. In round 3, the strategies were categorised into nine domains-(1) patient education on stroke and recovery, (2) method of exercise prescription, (3) feedback and supervision, (4) cognitive remediation, (5) involvement of family members, (6) involvement of society, (7) promoting self-efficacy, (8) motivational strategies and (9) reminder strategies. The consensus from 12 experts (93%) led to the development of the framework in round 4. CONCLUSION: We developed a framework of comprehensive strategies to assist clinicians in supporting exercise adherence among stroke survivors. It provides practical methods that can be deployed in both research and clinical practices. Future studies should explore stakeholders' experiences and the cost-effectiveness of implementing these strategies.

A multicentric, 2 × 2 factorial, randomised, open-label trial to evaluate the clinical effectiveness of structured physical activity training and cognitive behavioural therapy versus usual care in heart failure patients: a protocol for the PACT-HF trial.

Background: Heart failure (HF) is a multi-morbid chronic condition, which adversely affects the quality of life of the affected individual. Engaging the patient and their caregivers in self-care is known to reduce mortality, rehospitalisation and improve quality of life among HF patients. The PACT-HF trial will answer whether clinical benefits in terms of mortality and hospitalisation outcomes can be demonstrated by using a pragmatic design to explore the specific effects of physical activity, and cognitive behavioural therapy in HF patients in India. Methods: We will conduct a 2 × 2 factorial, randomized, open-label trial, which aims to see if rehabilitation strategies of structured physical activity training and cognitive behavioural therapy for depression and self-management reduce the risk of repeat hospitalisation and deaths in HF patients in India. Patients will be randomised to (1) physical activity + usual care (2) cognitive behaviour therapy + usual care, (3) physical activity + cognitive behaviour therapy + usual care, and (4) usual care at 1:1:1:1 ratio. Time to mortality will be the primary outcome. A composite of mortality and hospitalisation for HF will be the main secondary outcome. Additional secondary outcomes will include 'days alive and out of hospital', cumulative hospitalisation, quality of life, Minnesota Living with Heart Failure questionnaire score, depression score, six minutes walking distance, handgrip strength, and adherence to medicines and lifestyle.  The effects of intervention on the primary outcome will be estimated from Cox proportional hazard models. For the continuous secondary outcome variables, differences between randomised groups will be estimated from linear mixed models or generalised estimating equations (GEE) as appropriate. Discussion: PACT-HF is designed to provide reliable evidence about the balance of benefits and risks conferred by physical activity and cognitive behavioural therapy-based cardiac rehabilitation for those with HF, irrespective of their initial disease severity.

Cross-Disciplinary Appraisal of Knowledge and Beliefs Regarding the Diagnosis of Autism Spectrum Disorders in India: A Cross-Sectional Survey.

BACKGROUND: Many healthcare professionals, including pediatricians, psychiatrists, Clinical Psychologists (CPs), Occupational Therapists (OTs), and Speech-Language Pathologists (SLPs), are involved in the identification and intervention of Autism Spectrum Disorders (ASD) in children. Distinctive training backgrounds and professional exposure can result in contrasting ideas regarding the assessment, diagnosis, and treatment of ASD. Only a few studies have addressed the cross-disciplinary perspective of knowledge, belief, and awareness about diagnostic criteria required for diagnosing ASD. MATERIALS AND METHODS: A total of 154 allied healthcare professionals (98 SLPs, 33 CPs, and 23 OTs) participated in the study. The survey tool used for this study was adapted from a previously available survey on the assessment of knowledge and belief about ASD and self-efficacy. RESULTS: The overall knowledge and belief of allied healthcare professionals regarding ASD differed significantly across the groups. However, the knowledge of Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) diagnostic criteria for ASD did not differ significantly between the groups. CONCLUSION: Our findings have salient clinical implications and advocates for the continued education of healthcare professionals in India regarding recent diagnostic criteria for ASD.

Effectiveness of a multifactorial context-enhancing functional therapy to promote functional arm use and recovery of stroke survivors: study protocol for a clinical trial.

INTRODUCTION: After a stroke, 55% of survivors do not regain the ability to completely use their arm in daily life functioning. Currently, evidence-based guidelines recommend functional training for improving the affected hand after stroke. However, promoting an optimal quantity and quality of functional training is influenced by personal and environmental contextual factors. Studies that comprehensively target multiple factors regulating arm use are limited. This study compares the effects of functional training to multifactorial context-enhancing functional training program for improving functional arm use and recovery after stroke. METHODS AND ANALYSIS: This is a protocol for an observer-blinded, two parallel groups, randomised controlled trial. A total of 126 community-dwelling subacute and chronic stroke survivors will be included in the study. A tailor-made multifactorial context-enhancing intervention-incorporating education, environmental enrichment and behaviour change techniques to reinforce functional training will be provided to the experimental group. The functional training group will be provided with functional exercises. The intervention will be delivered for 2 months. The primary outcomes of functional arm use and recovery will be measured using Motor Activity Log, Goal Attainment Scale and Rating of Everyday Arm-use in the Community and Home scale. The secondary outcomes of arm motor impairment and function will be measured using Fugl-Meyer upper limb score, Action Research Arm Test, ABILHAND questionnaire and Stroke Impact Scale. These will be measured at three points in time: before, after 2 months and after 1-month follow-up. The outcome measures will be analysed using one-way analysis of variance and regression analysis will be performed to identify factors limiting optimal task practice. ETHICS AND DISSEMINATION: The study has been approved by the Institutional Ethics Committee of Kasturba Hospital, Manipal, India. Participants will sign a written informed consent prior to participation. The results will be published on completion of the trial and communicated to community-dwelling stroke survivors. TRIAL REGISTRATION NUMBER: CTRI/2017/10/010108.