Multiple Disabilities Research Articles

Participation as Co-Occupation Between Parents and Adult Children With Profound Intellectual and Multiple Disabilities.

Adults with profound intellectual and multiple disabilities (PIMD) require high levels of assistance to participate in occupations. Otherwise, they experience low occupational engagement. This study aimed to explore how parents describe participation in occupations for their adult children with PIMD. Semi-structured interviews (n = 9) were conducted to understand how parents described their adult children's participation in occupations. Data were analyzed using the theory of co-occupation to identify themes and triangulate findings with the literature. Parents described participation as co-occupation in "essential" versus "non-essential" occupations. Participation in essential co-occupations emphasized shared physicality, while non-essential co-occupations focused on joint meaning (shared intentionality) and emotional responses (shared emotionality). Findings illustrate a way to conceptualize participation in essential versus non-essential co-occupations for adults with PIMD, highlight the importance of recognizing and illuminating subjective experiences of adults with PIMD, and provide a foundation for occupational therapists to increase occupational engagement within this population.

The Use of Snoezelen to Support People With Profound Intellectual and Multiple Disabilities: An International Survey Describing the Perspectives of Support Persons.

Snoezelen is often used for people with profound intellectual and multiple disabilities, but scarcely evaluated. This study aimed to provide insight into the application and perceived effects of snoezelen from the perspective of support persons. We conducted an international survey with professionals (n = 130) and relatives (n = 8) supporting people with profound intellectual and multiple disabilities. Information regarding the application and perceived effects was gathered. Content and descriptive analysis were used. Despite variation, common characteristics were identified regarding purpose, approach and context. Perceived positive effects mostly concerned improved mental health of the person receiving snoezelen (n = 88). A person-centred approach was reported as important element for positive effects. This study describes the use of snoezelen for people with profound intellectual and multiple disabilities. These insights can be used for future research into working elements and effects of snoezelen and facilitate evidence-based support.

Acceptability testing of the Carers-ID intervention to support the mental health of family carers of people with profound and multiple intellectual disabilities.

Providing care and support for a person with intellectual disabilities can be challenging and may negatively impact on family carers' health and wellbeing. A online support programme was co-designed with charitable organisations and family carers, to help meet the mental health and wellbeing needs of family carers. To test the acceptability of a newly developed online support programme for carers of people with profound and multiple intellectual disabilities. A sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents Scale was distributed to family carers across the United Kingdom and Ireland who had viewed the Carers-ID.com intervention. Participants were then invited to take part in an online interview. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol. Seventy family carers (47 female, 23 male) responded to the acceptability survey, with 10 (7 female, 3 male) taking part in interviews. Carers expressed high levels of programme acceptability (mean = 75.43 out of 88). Six themes were generated from interviews with family carers; i) time is precious, ii) the breadth and depth of module content, iii) it was somebody's experience; it was meaningful, iv) won't work for everyone, v) representation: people I could identify with, and vi) module specific suggestions for future changes. Based on our triangulation, four areas of convergence were identified: programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability. To be acceptable, online interventions for carers of people with intellectual disability need to be accessible, understandable and easy to use, as carers' free time can be limited. It would be important to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not.

Factors Influencing Quality of Life in the Disabled: Focus on Household Members Mental Health

Abstract Background Household members of the disabled experience various difficulties such as social isolation and the burden of caregiving. These difficulties can lead to mental health problems, which in turn affect the quality of life(QoL) of the disabled. Research on the QoL of the disabled is ongoing, but there are few studies addressing the mental health of household members. We aimed to investigate the impact of household members’ mental health on the QoL of the disabled. Methods We used data from the 2021 Disability and Life Dynamics Panel(nationwide survey). On the base of Patrick’s model of disability health promotion, we analyzed the impact of household members’ mental health on the QoL of the disabled by using correlation analysis and multiple regression analysis adjusted for gender, age, income level, employment status, education level, activities of daily living, participation in social activities, type and severity of disability, presence of multiple disabilities, and health status. Results The level of depression(r=-.316, p<.0001) and self-esteem(r=.248, p<.0001) of household members were found to be significantly correlated with the QoL of the disabled. The level of depression of household members had a significant negative impact on the QoL of the disabled(β=-.153, p<.0001), while self-esteem had a significant positive impact(β=.144, p<.0001). It was found that the level of depression had a greater impact on QoL than self-esteem. Conclusions Lower levels of depression and higher levels of self-esteem of household members are associated with higher QoL for the disabled. Improving the mental health of household members is crucial in improving the QoL of the disabled, enabling them to interact more positively with society. Additionally, as 27% of household members experience depressive issues, enhancing their mental health positively impacts on the overall well-being of families with disabilities. Efforts to enhance household members’ mental health are crucial. Key messages • Household members’ mental health significantly influences the quality of life of the disabled. • To improve the quality of life of the disabled, strengthening programs for promoting the mental health of household members and policy improvements are necessary.

Key Factors Influencing Quality of Life in the Disabled Based on Multifaceted Life Satisfaction

Abstract Background Healthy life of the disabled is considered a global social issue, and enhancing the quality of life (QoL) of the disabled is an important task. The disabled have lower multifaceted life satisfaction due to various daily restrictions, which negatively affects their QoL. Research on the QoL of the disabled is ongoing, but there are few comprehensive studies addressing multifaceted life satisfaction. To enhance the QoL of the disabled, it is essential to understand their multifaceted life satisfaction and investigate key factors influencing their QoL. Methods We used data from the 2021 Disability and Life Dynamics Panel (nationwide survey). On the base of Patrick’s model of disability health promotion, we analyzed the impact of multifaceted life satisfaction of the disabled on their QoL by using multiple regression analysis adjusted for gender, age, education level, daily living activities, type and severity of disability, and presence of multiple disabilities. Results The satisfaction with social relationships(β=.535, p<.0001), income(β=.146, p<.0001), housing environment(β=.132, p<.0001), occupation(β=.130, p<.0001), and health(β=.111, p<.0001) was found to have a significant positive impact on the QoL of the disabled. Particularly, satisfaction with social relationships exerted the greatest impact on their QoL. Conclusions Not only health satisfaction, but also social relations, income, housing environment, occupation had a substantial impact on the QoL of the disabled. These findings can support the government in prioritizing health policy development for the disabled and contribute to improving the QoL for the disabled through a comprehensive and integrated approach. The government should develop health policies to enhance social connections and support networks for the disabled, while also considering aspects for improving income, housing environment, occupation, and health. Key messages • Not only health satisfaction, but also social relations, income, housing environment, occupation had a substantial impact on the QoL of the disabled. • The government should prioritize developing health policies aimed at enhancing social relations for the disabled, while also considering income, housing environment, occupation, and health.

What is it like to be a twin of a person with profound intellectual and multiple disabilities?

ABSTRACT Background The aim of this study was to establish the perceived quality of life in twin siblings of individuals with profound intellectual and multiple disabilities (PIMD) living in Poland. Method Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded theory methodology principles. Findings The results of this study yielded insights into the quality of life of twin siblings of persons with profound intellectual and multiple disabilities. Inquired about their lives in the capacity of siblings, the interviewees provided a narrative around their experiences as twins of individuals with PIMD. Conclusion Research participants described both positive and negative experiences, indicating that having a sibling with profound intellectual and multiple disabilities affected their quality of life in diverse ways. In addition, the obtained results may be of cognitive merit to practitioners and researchers working with families of people with PIMD.

Osoba z głęboką wieloraką niepełnosprawnością jako uczestnik interakcji

The article attempts to describe the communication competences of people with profound intellectual and multiple disabilities. It presents a person with profound intellectual and multiple disabilities in the context of his or her biographical experiences, including interactions and relationships. It shows communication as a process based on reciprocity, thus emphasizing the importance of actions taken by both parties of this interaction. This text contains a description of the complexity of communication methods available to people with profound intellectual and multiple disabilities and a proposal of qualitatively significant ways of acting on the part of interaction partners.

Multimorbidity and Multiple Disabilities: Present Status and the Roles of Rehabilitation.

The world is aging, and an increasing number of countries are becoming aged or super-aged societies. Japan has already become the world's first super-aged society, with an aging rate of 29.1% of the entire population of the country. As of 15 September 2021, there were approximately 36.40 million people aged 65 years and over. The advent of the super-aged society has increased the possibility of multimorbidity and multiple disabilities (MMDs) in the elderly population. According to a survey by the Ministry of Health, Labour and Welfare, the percentage of people with multiple disabilities of all people with physical disabilities has fluctuated between 4.0 and 7.0%, but rapidly increased to 8.9% in 2006 and 17.7% in 2016. This review aimed to establish the present status of MMDs and the rehabilitation for MMDs. In rehabilitation settings, patients with MMDs are more common than patients with a single disease or disability; however, evidence on MMD rehabilitation is insufficient. Inexperienced and unconfident medical professionals are overly cautious in providing rehabilitation; therefore, adequate rehabilitation is not provided. Furthermore, to respond to the rehabilitation needs of patients with MMDs, human resources need to be cultivated, and a scientific basis needs to be built. It is expected that MMD guidelines will soon be developed based on various case studies and surveys. In MMD rehabilitation, it is important to provide "wider, earlier, more intimate, and more connected rehabilitation"; for this, the training and cooperation of rehabilitation medical professionals is necessary.

Disability, poverty and health-service accessibility in the context of the COVID-19 pandemic: a population-based repeated cross-sectional study in Colombia

ObjectivesIn Colombia, 4.3% of the population 5 years or older lives with a disability. They face higher levels of poverty and social exclusion compared with persons without disabilities. This article...

Impact of caring for patients with polyhandicap on institutional health care workers' quality of life: a cross-sectional and longitudinal evaluation.

Profound intellectual multiple disabilities or polyhandicap (PLH) is defined as a combination of profound mental retardation and serious motor deficits resulting in extreme dependence. Support for these patients is multidisciplinary, complex, and time-consuming. Thus, institutional health care workers (HCWs) face specific working conditions: frequent physical tasks, distressed families, and restricted feedback. We aimed to identify determinants of quality of life (QoL) of HCWs and to study longitudinal evolution. The study used data from the French cohort EVAL-PLH. The participants were institutional HCWs of persons with PLH (age ≥ 3 years at the time of inclusion; age at onset of cerebral lesion <3 years old). Two populations were used: (1) cross sectional study: the sample 1 includes the HCWs assessed at T2 (2020-2021); (2) longitudinal study: the sample 2 includes the HCWs assessed at both T1 (2015-2016) and T2 (2020-2021). The data collected included: sociodemographics, health status, professional variables, and psycho-comportemental aspects. QoL was assessed using WHOQOL-BREF which provides 4 scores. In comparison with French norms, the physical and social scores of QoL were significantly lower while the psychological score was significantly higher for (i) the 223 HCWs (participation rate 62%) assessed at T2 and (ii) the 61 HCWs assessed at T1 and T2. The main factors modulating QoL were age, marital status, self-perceived financial difficulties, personal chronic disease, anxiety-mood disorders, nature of coping strategies, and burnout. This study confirms the mixed (negative and positive) impact of caring persons with PLH on the institutional HCWs' QOL. Main determinants of the HCW's QOL were: older age, single status, perceived financial difficulties, altered health status, burn out and coping strategies.Clinical trial registration number: NCT02400528.

Impact of Socio-Demographic Factors on Quality of Life and Coping Strategies of Children with Different Disabilities.

Background and Objectives: Children with disabilities face unique challenges that can affect their well-being and quality of life (QOL). This study aimed to assess the QOL and coping strategies adopted by children with disabilities and explore how socio-demographic factors influence QOL and coping strategies. Materials and Methods: This cross-sectional study, which was conducted in Saudi Arabia with children aged 6 to 18 years, used a stratified random sample to ensure representation from a variety of demographic groups. Short Form-12 (SF-12) was used to assess the QOL in the sample population. The Brief COPE Inventory was used to examine coping strategies among the children. One-way analysis of variance was applied to examine differences in the QOL, coping strategies scores, and demographic variables. Multiple regression analyses were performed to examine the role of demographic variables in predicting QOL and p value was considered statistical significance at p < 0.05. Results: The results of the study clearly revealed significant differences between the mean scores of QOL for gender, age, and type of disability, duration of disability, education qualification, family status, family occupation, and housing status. Female participants showed better QOL in physical functioning than their male counterparts. Children with intellectual disability reported better QOL in general health, vitality, social functioning, and mental health. Participants with seven to eight years of disability reported higher scores in physical functioning, vitality, and mental health. Children whose parents were working in private agencies and living in rented houses scored higher on the general health aspects of quality of life. The findings also revealed that the duration of the disability was a significant predictor of the QOL. The mean scores of different dimensions of coping strategies clearly revealed that male participants used dysfunctional coping (p < 0.01), as compared to problem-focused and emotional-focused coping while female children relied more on emotional-focused coping. Emotion-focused coping was significantly higher in participants with visual (p < 0.01), learning (p < 0.01), and intellectual disabilities (p < 0.01). Dysfunctional coping scores were higher among children with auditory disabilities (p < 0.01) and multiple disabilities (p < 0.01). Conclusions: This study highlights the significance of demographic factors in understanding and improving the well-being of a diverse population of disabled juveniles. It offers valuable insights into the subtle factors affecting quality of life. Future interventions and policies can leverage these findings to enhance the quality of life of individuals with disabilities and to foster a more supportive and inclusive approach.

Participants’ baseline characteristics and feedback of the nature-based social intervention “friends in nature” among lonely older adults in assisted living facilities in finland: a randomised controlled trial of the RECETAS EU-project

BackgroundLoneliness is common among older adults in institutional settings. It leads to adverse effects on health and wellbeing, for which nature contact with peers in turn may have positive impact. However, the effects of nature engagement among older adults have not been studied in randomised controlled trials (RCT). The “Friends in Nature” (FIN) group intervention RCT for lonely older adults in Helsinki assisted living facilities (ALFs) aims to explore the effects of peer-related nature experiences on loneliness and health-related quality of life (HRQoL). In this study we aim describe the participants’ baseline characteristics of the RCT, feasibility of FIN intervention and intervention participants’ feedback on the FIN.MethodsLonely participants were recruited from 22 ALFs in Helsinki area, Finland, and randomised into two groups: 1) nature-based social intervention once a week for nine weeks (n = 162) and 2) usual care (n = 157). Demographics, diagnoses and medication use were retrieved from medical records, and baseline cognition, functioning, HRQoL, loneliness and psychological wellbeing were assessed. Primary trial outcomes will be participants’ loneliness (De Jong Giervald Loneliness Scale) and HRQoL (15D).ResultsThe mean age of participants was 83 years, 73% were female and mean Minimental State Examination of 21 points. The participants were living with multiple co-morbidities and/or disabilities. The intervention and control groups were comparable at baseline. The adherence with intervention was moderate, with a mean attendance of 6.8 out of the nine sessions. Of the participants, 14% refused, fell ill or were deceased, and therefore, participated three sessions or less. General subjective alleviation of loneliness was achieved in 57% of the intervention participants. Of the respondents, 96% would have recommended a respective group intervention to other older adults. Intervention participants appreciated their nature excursions and experiences.ConclusionsWe have successfully randomised 319 lonely residents in assisted living facilities into a trial about the effects of nature experiences in a group-format. The feedback from participants was favourable. The trial will provide important information about possibilities of alleviating loneliness with peer-related nature-based experiences in frail residents.Trial registrationClinicalTrials.gov, ID: NCT05507684. Registration 19/08/2022.

Evaluation of an Australian community‐based model of care for adults with intellectual and developmental disabilities undergoing procedures under sedation

AbstractBackgroundAdults with intellectual and developmental disabilities (IDDs) have higher healthcare needs, but experience difficulties accessing preventative healthcare. Despite this inequity, models of care that address barriers and provide customized treatment are limited, exacerbating vulnerabilities and poorer health outcomes. This study describes the development of a procedural model of care (PMOC) for adults with intellectual and developmental disabilities, and evaluates the sedation tier, exploring procedure and sedation outcomes.MethodsDevelopment of the PMOC was informed by current evidence and themes identified in stakeholder consultation and literature. A retrospective cohort study evaluated the sedation option within the model, conducted at a community‐based disability service in Melbourne, Australia. All records over a 14‐month period were included. Descriptive statistics and univariate logistic regression analysis were used to analyze data.ResultsThe PMOC includes assessment, intervention, and evaluation tiers. Intervention options range from least to most invasive, culminating in the sedation level (mild; oral psychoactive, moderate; midazolam and nitrous oxide, high; general anesthetic). A total of 127 adults with IDDs received procedures under sedation; median age was 26 years, 61% lived with family, and 81% had multiple disabilities. A total of 197 procedures were referred to CDDH, including immunization (61%) and oral health reviews (23%), and resulted in 98% completion rate. Mild (n = 36) and moderate (n = 95) sedation were used for 67% of procedures. The PMOC correctly predicted 91% of sedation requirements. Living with family (OR 2.211, 95% CI 1.001–4.885, p = 0.05); immunization (OR 7.935, 95% CI 4.025–15.644, p &lt;0.001); and multiple disabilities (OR 3.064, 95% CI 1.123–8.362, p = 0.029) were associated with mild, moderate and high sedation options, respectively.ConclusionsModels of care offering individualized interventions can support adults with IDDs to receive preventative procedures. Demographic variables may be able to predict sedation requirements. Wider application of this model may reduce health inequity within this vulnerable population.

Navigating uncertainty: taking methodological cues from relatives and care professionals for researching the perspectives of people with profound intellectual and multiple disabilities

ABSTRACT Background Researching the perspectives of people with profound intellectual and multiple disabilities (PIMD) presents complexity and uncertainty. Traditional research often prioritises rational, objectivist methods, which may overlook this complexity. Aims This study aimed to develop methodological cues for researchers studying the perspectives of people with PIMD by exploring how support workers and relatives deal with the uncertainty of uncovering these perspectives, drawing on Zinn’s typology of strategies for dealing with uncertainty: “rational,” “non-rational,” and “in-between”. Method We conducted interviews with support workers and relatives and observed interactions through shadowing. Results All of Zinn’s strategies were observed, leading to six cues: (1) practicing an ethic of engagement; (2) valuing non-rational knowledge; (3) collaborating closely with caregivers; (4) acknowledging intertwined perspectives; (5) adopting phenomenological approaches; and (6) accepting uncertainty as inevitable. Conclusion These cues promote an “anti-sceptical ethic of engagement” that encourages researchers to actively attune to the perspectives of people with PIMD.

Bridging the gap: voices of teachers on inclusive literature

ABSTRACT This study explored teachers’ perspectives on utilising existing children’s books for students with intellectual and additional disabilities. 58 teachers from Israeli special education schools and kindergartens revealed widespread dissatisfaction with available materials. Strikingly, 70.7% were unsatisfied with existing children’s books, and 94.7% believed there were not enough accessible options. Qualitative analysis identified five major barriers: excessive text, inappropriate content for older age groups, challenges with the physical structure of books, mismatches between text and visuals, and specific challenges for teachers of children with multiple disabilities. These findings underscore the substantial need for more accessible literature tailored to the needs of children with disabilities. Despite legislation mandating societal inclusion of people with disabilities, teachers’ dissatisfaction highlights gaps in addressing their students’ literary requirements. The results shed light on these teachers’ vital roles in adapting books and indicate the need for greater collaboration between teachers, publishers, and policymakers. By highlighting the voices of frontline professionals, this study provides a crucial call to action to develop high-quality, customised educational resources for children and young people with disabilities.

Treatment of Spastic quadriplegia resulting from hypoxia in newborn through body engineering technique-hand therapy Case Report Described by Parents: Qualitative study

Objectives: Summary of Case Report on Spastic quadriplegia accompanied by several disabilities. Treatment with Body Engineering/Hand Therapy. This case report describes the successful treatment of a 4 years old girl who was diagnosed with Spastic quadriplegia and global developmental delay accompanied with relapse, slurred speech, and cognitive delay resulting from hypoxia during child birth. To report a case of a girl who suffered Spastic quadriplegia, seizures, and delay in speech and perception due to hypoxia and to highlights the critical role of body engineering techniques for the rehabilitation of children with similar cases. Methods: An informed case report was given by from the child's parents. Functional recovery was achieved through a customized rehabilitation plan according to the body engineering / hand therapy techniques We highlight: -Medical Management for such cases. -A rehabilitation plan based on body engineering/ hand therapy techniques that led to complete recovery. -Satisfaction of the patient's parents after treatment. Results: Treating the patient through body engineering (hand therapy) and rehabilitating him for a full year led to the appearance of signs of clinical and radiographic improvement. Conclusions: Hypoxia-induced spastic quadriplegia often results in multiple disabilities, as seen in this case. Early intervention using body engineering techniques can lead to significant improvements in physical and cognitive functions. Continuous monitoring and rehabilitation are recommended to sustain progress and prevent relapses (Odding et al., 2006). Based on the provided information, body engineering and hand therapy have proven to be highly effective in rehabilitating a girl with hypoxia-induced cerebral palsy. Through a comprehensive rehabilitation program, the patient's physical, cognitive, and communication abilities have significantly improved. This case report underscores the importance of early intervention in maximizing outcomes for children with spastic quadriplegia. By providing ongoing support and tailoring rehabilitation programs to individual needs, it is possible to help these children reach their full potential, aligning with the World Health Organization's definition of rehabilitation as a process to improve performance and reduce disability.

Tacit knowledge in medical consultations for patients with profound intellectual and multiple disabilities: An exploratory qualitative study

ABSTRACT Background Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations. Method A qualitative inductive, thematic analysis was performed of 14 audio-taped consultations with intellectual disability physicians for patients with PIMD to explore how TK is represented and considered between parents and physicians. Results Parents conveyed their TK by sensing and perceptions of changes of their child's behaviour. Our findings demonstrate that parents of individuals with PIMD primarily shared TK concerning pain, sleeping issues, and epilepsy. Physicians recognised and incorporated parents’ TK, highlighting its significance in patient care. Conclusion This study underscores the important role of TK in consultations for patients with PIMD. Parents’ TK help to shape medical-decisions, urging physicians to validate parents’ TK while relating this TK to other types of medical knowledge.

Decreasing self‐injury in a child with multiple disabilities: A practitioner's demonstration

AbstractSelf‐injurious behavior is thought to be the product of interactions between deficits related to a primary disability (e.g., limited communication repertoires and adaptive skills) and learning experiences that reinforce problem behavior (e.g., consoling the child, terminating non‐preferred activities, etc.). For these cases, functional communication training (FCT) may be prescribed to decrease challenging behavior and increase the client's communicative repertoire. However, FCT procedures for individuals with multiple physical impairments may require considerable individualization and modifications. Unfortunately, the existing body of research related to the assessment and treatment of behavior of individuals with motor, visual, or other impairments is relatively limited. The purpose of this report is to demonstrate how practitioners can modify assessment and treatment procedures to decrease challenging behavior and promote independence when working with individuals with multiple impairments. We provide an example of effective skill acquisition and behavior reduction interventions for a young girl, Ava, presenting with multiple disabilities—including visual, hearing, and motor impairments. Consistent with the habilitative aims of applied behavior analysis, the intervention was effective at decreasing Ava's challenging behavior and increasing her independent communication and adaptive behavior.

Maternal Disability and Early Child Preventive Care.

Preventive health care for children comprises routine well-child visits and immunizations. Women with physical, sensory, or intellectual or developmental disabilities tend to experience more barriers to preventive health care; yet it is unknown whether such barriers are observed among their young children. This population-based study in Ontario, Canada included children born between 2012 and 2019 whose mothers had a physical (n = 74 084), sensory (n = 26 532), or intellectual or developmental (n = 1391) disability, multiple disabilities (n = 5774), or no disability (n = 723 442). Primary outcomes were receipt of the recommended number of well-child visits and routine immunizations in the first 2 years. Secondary outcomes included receipt of the enhanced 18-month developmental assessment and any developmental screen. Relative risks (aRR) were generated using modified Poisson regression and adjusted for maternal sociodemographics and mental health and child sex. Compared with children of mothers without disabilities, those whose mothers had intellectual or developmental disabilities were less likely to receive the recommended number of well-child visits (56.3% vs 63.2%; aRR 0.92, 95% confidence interval [CI] 0.88-0.97), routine immunizations (43.8% vs 53.7%; aRR 0.88, 95% CI 0.83-0.94), enhanced 18-month developmental assessment (52.3% vs 60.8%; aRR 0.92, 95% CI 0.88-0.97), or any developmental screen (54.9% vs 62.5%; aRR 0.94, 95% CI 0.90-0.99). Other disability groups did not experience such disparities. There is a need to develop resources to improve access to preventive health care for young children of women with intellectual or developmental disabilities.

Lived experiences of diabetes self-management among persons with disabilities in rural Tamil Nadu – a case study approach

BackgroundPeople with disabilities have numerous challenges in diabetes self-management. Poor self-management leads to the worsening of disability and secondary complications of diabetes. This study was conducted to explore the challenges in diabetes self-management and the factors influencing diabetes self-management among people with disabilities.MethodsWe conducted 16 case studies among people with physical, neurological, visual, hearing, and multiple disabilities who were affected by diabetes. We adopted a thematic content analysis approach to analyse the data.ResultsPeople with disabilities have challenges in adopting healthy diets as they are unable to purchase and consume fruits and vegetables which are costly, unavailable, and inaccessible. They have difficulty in doing physical activity due to lack of inclusive public spaces which are inaccessible, lack of motivation, and dependence on others for their mobility. Irregular drug supply in the public health system and unaffordable cost of drugs hamper adherence to medications. Laboratories are inaccessible to people with disabilities thus preventing monitoring of blood sugars. They have poor quality of life, life with pain and mental health issues, which prevent adoption of self-management behaviors. The intersectionality of age and gender with disability worsens self-management behaviors. Inaccessible health system, poor quality of health care and insensitive health care providers further complicate self-management.ConclusionThis study documents the challenges faced by persons with disabilities in practicing diabetes self management. There is a need for public health policy and planning that is inclusive of persons with disabilities to make access to diabetes care universal.