Well-Being Programme for Caregivers of Persons with Spinal Cord Injury

Background: SCI is a high-cost chronic disability, and it is a life-changing experience for family members and societies. For families, the unpredictable nature of the injury leads some of the members into an 'unexpected career' as family caregivers, the caregiver’s have to put enormous efforts, to provide continuous full-time caregiving for the recovery of Person with Spinal cord injury, which will affect the caregiver's physical and mental health. The current study aims to develop and test the feasibility of a well-being programme for caregivers of persons with spinal cord injury.            Methods/Design: The current study adopts a Quasi-experimental study design, which have three phases; the first phase is to explore the needs of the caregivers by conducting in-depth interviews with different stakeholders. The second phase is to develop a well-being programme, and checking the feasibility of the programme is the third phase by recruiting 24 caregivers. Qualitative data will be analyzed using thematic analysis, whereas quantitative data will be analyzed using appropriate parametric or non- parametric tests upon confirming normality of data distribution. Discussion: This study would help us to understand the psycho-social issues and unique needs of the caregivers at different time periods. It also gives information about psycho-social interventions and outcome measures for the well-being of the caregivers

Schedule of Factors Influencing Adherence (SOFIA) to Psychiatric Treatment in Persons with Schizophrenia: Validity and Pilot Testing

Qualitative research has highlighted the complexinterplay of multiple factors that preclude persons withschizophrenia in rural Indian settings for discontinuedpsychiatric treatment. In this context, this paper aims toestablish the face and content validities of an interviewschedule titled „Schedule of Factors InfluencingAdherence (SOFIA) to Psychiatric Treatment in Personswith Schizophrenia‟ which comprehensively assessesfactors for discontinued  psychiatric treatment and   thefeasibility of its administration of the schedule. SOFIAcontains 16 factors. This schedule involves three phases of interviewing patients and family members.  This wasgiven to twelve experts who used likert scales to rate eachitems wells as the dimensions of the schedule. Later on,fifteen persons with schizophrenia were interviewed withSOFIA to test the feasibility of administration. The resultsshowed that Fourteen items were rated as eithersatisfactory (score=4) or very much satisfactory (score=5)by all twelve experts; remaining two were rated as 4 or 5by 11 experts. Regarding comprehensiveness of thefactors, scoring methods and general instructions given tothe interviewers, all provided scores > 4; regardingmethod of interviewing, 11 provided score of > 4; withregard to overall interview schedule, all experts providedscores > 4. Pilot testing revealed that it took 60 minutes to administer SOFIA

Hybrid Supported Employment Approach for Persons with Intellectual Disabilities in India:Evidence Based Case Studies

Studies have reported that persons with developmental disabilities have the lowest rate of labor force participation, relative to other disabilities due to various factors. This paper presents two cases studies of persons with ID who were successfully provided a hybrid supported employment approach of ‘train and place model’ and ‘place and train model’ by the Psychiatric Rehabilitation Services (PRS) team. Conducted a retrospective file review highlighting the process of supported employment approach adapted for persons with ID. The ethical approval was obtained from the Institute Ethical Committee. The hybrid supported employment approach focuses on enhancing client’s vocational potential and skills, prepare for job ready, find a suitable job placement. Further, the approach helped in improving the sense of independence self-esteem and quality of life of the clients. A hybrid supported employment approach could be an effective method in aiding persons with developmental disabilities in India seek, get, and keep jobs; it will also help them deal with unique challenges they face in the workplace as well as loss of or gaps in employment. Involvement of families in the intervention will help minimize negative expressed emotions and distress.<br/

Treatment Discontinuation in Schizophrenia: A Qualitative Exploration from a Rural South Indian Community

Background: Medication discontinuation remains a big hurdle for retaining persons with schizophrenia under the treatment AMBIT. It is imperative to understand reasons for the same to effectively tackle it. Methods: The study was carried out in Turuvekere, a rural South Indian taluk (an administrative block). Qualitative interviews were conducted with consenting consecutive nineteen patients (along with their family members) who had discontinued medications. All interviews were transcribed. Enlisted reasons were then color coded to synthesize different factors. From the 16th patient onward, no new reason emerged. Three more interviews were done to ensure that there was no additional reason. Results: The following factors (average 4.26 factors per patient) led to medication discontinuation: (1) lack of support/supervision from family/well-wishers (n = 14/19 [73.68%]); (2) lack of insight and cooperation from the patient (n = 11; [57.89%]); (3) lack of awareness about the illness (8 [42.10%]); (4) adverse effects of medications (n = 8; [42.10%]); (5) financial factors (n = 8; [42.10%]); (6) distance/transport (n = 8; [42.10%]); (7) lack of knowledge about treatment process (n = 7; [36.84%]); (8) perceived lack of beneficial effects of treatment (n = 5; [26.32%]); (9) treatment center-related issues (n = 4; [21.05%]); and others. Conclusions: Medication discontinuation is driven by a diverse set of interrelated factors among community-living persons with schizophrenia. Professionals need to be aware of this complexity to effectively manage the problem

Barriers in Accessing Social Welfare Benefits for Families of Children With Intellectual and Developmental Disorders in Rural Karnataka: A Situation Analysis

Background: Several government schemes exist for the welfare of families having children with intellectual and developmental disorders (IDDs) in India. However, these schemes are often not utilized. An understanding of the barriers to access these social welfare benefits, especially in rural areas of India, can aid in planning social action toward the implementation of these schemes. Methods: A situation analysis of the resources and potential barriers to access social welfare benefits for families of children with IDD was conducted in a rural community. Stakeholder interviews were conducted with families of children with IDD ( n = 20), government officials responsible for implementing education at the state level ( n = 5), local officials responsible for facilitating social welfare benefits ( n = 5), and nongovernmental organization ( NGO ) working in the area of children with IDD ( n = 3). Qualitative thematic analysis was used to understand the barriers to access social welfare benefits for the families of children with IDD. Results: Barriers encountered by families of children with IDD, local officials, and NGOs included lack of awareness about the available welfare schemes, unavailability of social welfare facilities in the local areas, lack of social auditing in the provision of social welfare schemes to the needy, and stringent process of application and regulation for financial aid under the National Trust schemes. Conclusion: There are multiple barriers to access social welfare benefits for families having children with IDD in rural Karnataka. There is a strong need to empower families, sensitize local officials, and advocate for social policies to effectively implement National Trust schemes in rural areas of Karnataka