Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Beneficios y limitaciones de la planificación centrada en la persona en el campo de la discapacidad intelectual y del desarrollo: una revisión sistemática según las directrices de PRISMA / Benefits and limitations of person-centered planning in the field of intellectual and developmental disabilities: a systematic review according to PRISMA guidelines

La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)

The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)

Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Beneficios y limitaciones de la planificación centrada en la persona en el campo de la discapacidad intelectual y del desarrollo: una revisión sistemática según las directrices de PRISMA / Benefits and limitations of person-centered planning in the field of intellectual and developmental disabilities: a systematic review according to PRISMA guidelines

La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)

The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)

Fitness to Work in a Hansen's Disease Worker With a Disability: A Case Report.

Hansen's disease not only causes problems for patients in the workplace, but also increases the possibility of transmission to other workers. This case report discusses the fitness-to-work assessment for a Hansen's disease patient with a disability. A 19-year-old female, who worked as an online shop warehouse staff, presented at our hospital with a wound on her left hand accompanied by numbness. The patient's activity indicated mild limitations with a SALSA score of 25. A seven-step process for evaluating fitness to work was conducted. These steps involved assessing the patient's medical condition, disability, job demands, risks, and tolerance to determine the appropriate work status. This patient was declared fit to work with a note as online shop warehouse staff. She must take care of herself by maintaining good personal hygiene and consulting a doctor regularly, in addition to educating other workers about her condition and avoiding stigma. Routine examinations are also an important part of treating leprosy in the workplace.

Life after lockdown: loneliness, exclusion and the impact of hidden disability.

Background Stroke survivors are a population at increased risk of experiencing loneliness, thus exploring the effect of lockdown measures on stroke survivors is of paramount importance. We explored the personal experiences of loneliness among stroke survivors during lockdown in the COVID-19 pandemic and the lessons that can be learned from these experiences. Methods Seventeen stroke survivors from across the United Kingdom (10 females, 7 males; 45-83years old; M age =63.47) participated in semi-structured interviews. Reflexive thematic analysis was employed in the interpretation of the data. Results Three overarching themes were constructed: (1) hidden struggles, isolated lives; (2) divergent experiences and adaptations; and (3) rebuilding after lockdown. These themes explore survivors' experiences of loneliness generally after stroke and how this loneliness was assuaged with online video conferencing and other technological solutions. They also chronicle how these feelings changed during lockdown and survivors' feelings regarding society returning to 'normal' and the associated apprehension and anxiety this brings. Conclusions We recommend a focus on improving understanding of the challenges faced after stroke to reduce stigma, increase empathy and promote inclusive attitudes within society, alongside better pandemic preparedness through engagement with hybrid support solutions.

Women with disabilities, body image, and wellbeing: Assessing the effectiveness of dance sessions.

INTRODUCTION: There is growing research evidence on bodily discourses and body image issues of women with disabilities. Within the art-based intervention repertoire for persons with disabilities, dance and movement-based therapies and interventions are gaining prominence. The aim of this study was to examine the impact of dance sessions (delivered online) on body image, body satisfaction/dissatisfaction, and wellbeing of women with disabilities. METHOD: A quasi-experimental waitlist control design study was conducted with data collected at two time points: baseline or pre-test and five-months later or post-test. Outcomes were measured using the Body Image Scale and the WHO-5-Wellbeing Index. RESULTS: The dance sessions were effective (Hedges' g = -0.56 -0.88; p < 0.01) and post-test body dissatisfaction scores were lower and wellbeing scores were higher for participants with a college degree or postgraduate degree, self-employed or students, and whose intervention compliance was above threshold (>50% dance sessions attended and corresponding homework sessions completed). Tobit regression models indicated that it was possible to estimate post-test outcomes due to dance sessions alone, controlling for significant socio-demographics. DISCUSSION: The domain knowledge of non-pharmacological art-based interventions for persons with disabilities, particularly women, is supported. CONCLUSIONS: Findings commend dance sessions as effective psychotherapeutic mechanisms to mitigate body dissatisfaction, improve body image and wellbeing of women with disabilities. Future research may focus on large-scale cross-sectional trials, variations in the repertoire for women with different disability types and histories, and qualitative narratives.

Analysis of the life course effects of the disability dilemma among rural older adults in China.

Objective: To analyse whether the accumulation of early adverse experiences among individuals of different generations has an impact on disabilities and evaluate the cumulative effects of disadvantages in rural older adults in China. Methods: A Binary Logit Model was used to analyse the life course effects of the disability dilemma among rural older adults. Results: Regarding Activities of Daily Life (ADLs), there was no significant difference between older adults that experienced 1 adverse events and the control group. The probability of older adults experiencing difficulties in 2, 3, 4, or more types of ADLs was 1.486 times, 2.173 times, and 3.048 times higher than that of the control group, respectively. Regarding Instrumental Activities of Daily Life (IADLs), there was no significant difference between the population that experienced 1 or 2 adverse events and the control group. The probability of experiencing difficulties in 3, 4, or more types of IADLs was 1.527 times and 1.937 times higher than that of the control group, respectively. Early adverse events had a cumulative disadvantageous effect on disability in older adults. The longer the duration of adverse experiences, the higher the risk of disability in old age. Education had a significant mitigating effect on health risks. Conclusion: Pay attention to early factors in the life course, strengthen the promotion of health prevention concepts, and pay attention to the moderating and relieving effects of education on health. We should also gradually improve the rural disability care system and family health security capabilities in China's rural areas.

Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study.

BACKGROUND: This study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints. METHOD: Following a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6). RESULTS: The 285 statements were categorised into 5-7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties. CONCLUSION: Each group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

[Support Needs for Health Promotion of Community-Dwelling People with Disabilities: Perspectives of Operators Managing Disability Supportive Housing].

PURPOSE: Recent studies have focused on policies aimed at supporting the independence of individuals with disabilities in communities. As part of this initiative, supportive housing, integrated care, and residential spaces offer tailored services based on individual needs and autonomy. The attitudes and knowledge of the administrators supporting supportive housing residents regarding health management can influence the well-being of individuals with disabilities. Therefore, this study aimed to explore the challenges faced by supporting housing workers in enhancing the self-management skills of individuals with disabilities. METHODS: In this qualitative study, focus group interviews were conducted in August 2023 with nine administrators working to support housing in Seoul. Qualitative content analysis was used to analyze the interview data. RESULTS: The needs and challenges in enhancing the self-management skills of individuals with disabilities were as follows: (1) the complexity of health management challenges, (2) bidirectional strategies for strengthening health management capabilities, and (3) support for systematic health management. Additionally, eight subthemes were derived. CONCLUSION: By investigating the difficulties experienced and identifying the necessary support requirements for supportive housing workers, this study seeks to uncover insights and identifies areas for improvement and strategies for health management. This study acknowledges the educational and institutional support necessary to improve the health and quality of life of individuals with disabilities residing in supportive housing.

National Institutes of Health Designates Disabled People a Health Disparity Population.

This Viewpoint examines watershed moments in improving health care for people with disabilities in the US.

Associations between pain intensity, psychosocial factors, and pain-related disability in 4285 patients with chronic pain.

Pain, a widespread challenge affecting daily life, is closely linked with psychological and social factors. While pain clearly influences daily function in those affected, the complete extent of its impact is not fully understood. Given the close connection between pain and psychosocial factors, a deeper exploration of these aspects is needed. In this study, we aim to examine the associations between psychosocial factors, pain intensity, and pain-related disability among patients with chronic pain. We used data on 4285 patients from the Oslo University Hospital Pain Registry, and investigated pain-related disability, pain intensity, pain catastrophizing, psychological distress, perceived injustice, insomnia, fatigue, and self-efficacy. We found significant associations between all psychosocial variables and pain-related disability, even after adjusting for demographic factors. In the multiple regression model, sleep problems and pain intensity were identified as primary contributors, alongside psychological distress, and fatigue. Combined, these factors accounted for 26.5% of the variability in pain-related disability, with insomnia and pain intensity exhibiting the strongest associations. While the direction of causation remains unclear, our findings emphasize the potential of interventions aimed at targeting psychosocial factors. Considering the strong link between psychosocial factors and pain-related disability, interventions targeting these factors-particularly insomnia-could reduce disability and enhance quality of life in those who suffer.

Association between depressive symptoms and sarcopenia among middle-aged and elderly individuals in China: the mediation effect of activities of daily living (ADL) disability.

BACKGROUND: Depressive symptoms and sarcopenia, often observed among middle-aged and elderly individuals, are significant health concerns in China, particularly given the country's rapidly aging population. Depressive symptoms, characterized by persistent feelings of sadness and loss of interest, can significantly impact quality of life. Little is known about the underlying pathway connecting these two conditions. METHODS: The data for this study were derived from the China Health and Retirement Longitudinal Study (CHARLS). Depressive symptoms were evaluated using the Centre for Epidemiological Studies Depression (CSED) scale. Logistic regression analyses were employed to investigate the association between depressive symptoms, activities of daily living (ADL) disability, and sarcopenia, while adjusting for potential confounding factors. The selection of predictor variables, including social activity, chronic diseases, demographic factors, and lifestyle habits, was based on their known associations with mental health, physical functioning and sarcopenia. These variables were included to ensure a comprehensive adjustment for potential confounding factors and to provide a more accurate estimation of the relationship between depressive symptoms and sarcopenia. Additionally, mediation analysis was conducted to assess the mediating role of ADL disability in the relationship between depressive symptoms and sarcopenia. RESULTS: A comprehensive study was conducted on a total of 8,238 participants aged 45 years and older, comprising 3,358 men and 4,880 women. Logistic regression analyses were conducted to identify significant associations between depressive symptoms (OR = 1.30, P = 0.0269,95%CI = 1.03-1.63), ADL disability (OR = 1.94, P < 0.001,95%CI = 1.37-2.75) and sarcopenia. The results revealed significant relationships among these variables. Furthermore, mediation effect analyses demonstrated that ADL disability partially mediated the association between depressive symptoms and sarcopenia (estimated indirect effect: 0.006, 95% CI: 0.003, 0.008, proportion of mediation effect: 20.00%). CONCLUSIONS: The study underscores a significant association between depressive symptoms and sarcopenia among middle-aged and elderly individuals in China, with ADL disability acting as a mediator. These findings offer novel insights for targeted health interventions. Future interventions should effectively combat sarcopenia by integrating psychological support with muscle-strengthening exercise programs. By addressing both depressive symptoms and ADL disability, clinicians and public health professionals can enhance outcomes for this demographic. Collaborative efforts across disciplines are essential for providing comprehensive health management tailored to the needs of middle-aged and elderly individuals. Future research should longitudinally assess the impact of such integrated interventions on sarcopenia prevention and depressive symptom alleviation. Additionally, investigating the role of social and environmental factors in mediating this relationship is crucial for developing more effective health strategies for this vulnerable population.

The association between HIV infection, disability and lifestyle activity among middle-aged and older adults: an analytical cross-sectional study in Ivory Coast (the VIRAGE study).

INTRODUCTION: People living with HIV (PLWH) live longer and face new health challenges resulting from the confluence of chronic HIV infection and the natural effect of aging and comorbidities. However, there is a dearth of information on the long-term impact of HIV infection on the health and wellbeing of PLWH in sub-Saharan Africa. This research aimed to fill this gap by reporting on physical, functional and social outcomes among PLWH treated at a referral center in Abidjan, Ivory Coast, and comparing them with those of a control group. METHODS: Body composition, functional capacity, sarcopenia, limitations in daily activities and social participation were assessed among 300 PLWH (aged ≥ 30 years) and 200 uninfected adults of similar age and sex. The associations between these outcomes and participants' socioeconomic characteristics, HIV history and physical activity level were assessed using generalized additive models adjusted for age and sex. RESULTS: The median age was 51 years, and the median antiretroviral therapy duration was 15 years. Compared to controls, PLWH reported higher levels of physical activity (p < 0.0001). They had a lower muscle index (adjusted p < 0.0001) and grip strength (adjusted p < 0.0001) but achieved similar performance on the 6-min walk test (6MWT, p = 0.2). Among PLWH, physical activity level was positively associated with better performance in the 6MWT (p = 0.006) and greater hand grip strength (p = 0.04). The difference in physical performance according to the level of physical activity appeared mainly after the age of 60. PLWH reported similar rates of activity limitations (p = 0.8), lower depression levels and greater scores for social functioning (p = 0.02). CONCLUSION: In this study, PLWH achieved high levels of physical activity, which may explain why they maintained good physical performance and social functioning despite having a higher risk of sarcopenia. These results have important implications for resource-limited health systems and show avenues for chronic care models. TRIAL REGISTRATION: This study was registered on the ClinicalTrials.gov website (NCT05199831, first registration the 20/01/2022).

Association of insomnia symptoms and trajectories with the risk of functional disability: a prospective cohort study.

BACKGROUND: There is limited understanding regarding prospective associations of insomnia symptoms and trajectories with functional disability. We aimed to investigate the associations of insomnia symptoms and trajectories with functional disability. METHOD: A total of 13 197 participants were eligible from the Health and Retirement Study. Insomnia symptoms included non-restorative sleep, difficulty initiating sleep, early morning awakening, and difficulty maintaining sleep. We also identified four distinct trajectories of insomnia symptoms: low, decreasing, increasing, and high insomnia symptoms. Functional status was assessed through activities of daily living (ADL) and instrumental activities of daily living (IADL). RESULTS: Participants experiencing one (HR, 1.21; 95% CI, 1.13-1.29), two (HR, 1.43; 95% CI, 1.29-1.57), or three to four (HR, 1.41; 95% CI, 1.25-1.60) insomnia symptoms had a higher risk of ADL disability than asymptomatic respondents. Similarly, participants with one or more insomnia symptoms had a higher risk of IADL disability. Furthermore, using the trajectory with low insomnia symptoms as the reference, decreasing insomnia symptoms (HR, 1.22; 95% CI, 1.12-1.34), increasing insomnia symptoms (HR, 1.21; 95% CI, 1.05-1.41), and high insomnia symptoms (HR, 1.36; 95% CI, 1.18-1.56) were all associated with an increased risk of ADL disability. CONCLUSION: Both a single measurement and dynamic trajectory of insomnia symptoms are associated with the onset of ADL disability. Increased awareness and management of insomnia symptoms may contribute to the prevention of functional disability occurrence.

Differences in condom access and use and associated factors between persons with and without disabilities receiving social cash transfers in Luapula province, Zambia-A cross-sectional study.

Persons with disabilities are disadvantaged in accessing sexual and reproductive health services, including condoms. In this study, we investigated whether condom access and use and their associated factors differed between persons with and without disabilities. We used data from adults in households receiving the Government of Zambia social cash transfers (SCT) in four districts of Luapula province. Condom access and use was the outcome. Disability, defined by the Washington Group Short Set Questions on Disability, was the main predictor. We performed logistic regression analyses to determine the associations between condom access and use and disability. In multivariable analyses, we controlled for covariates including age, sex, marital status, poverty status, HIV testing, and receiving the SCT. The sample comprised 1,143 people aged 16-49, with a median age of 21 years (interquartile range 18-28); 57.4% (n = 656) were female, 86.5% (n = 989) accessed and used condoms, and 17.9% (n = 205) were disabled, rating themselves with a 3 or a 4 on a scale of 1 = "not limited" to 4 = "cannot at all" in performing any of the six daily functions (seeing, hearing, walking, cognition, self-care, or communicating). Nearly sixty percent(58.5% (n = 120)) of persons with disabilities were female, 79.5% (n = 163) reported being very poor, 87.8% (n = 180) reported receiving SCT, and 86.3% (n = 177) reported accessing and using condoms. Condom access and use did not differ between persons with and without disabilities (adjusted odds ratio: 1.09; 95% confidence interval [CI]: 0.60-1.98]). We found no differences between persons with and without disabilities in condom access and use. We established that individual-level factors such as age, sex, marital status, and knowledge of being HIV positive might play a more important role in condom access and use than disability. Condom promotion interventions should account for these factors.

The role of attention bias malleability in experiencing pain and associated disability.

Background: Attentional processing of pain has been theorized to play a key role in the severity of pain and associated disability. In particular attentional bias towards pain information, resulting in poor pain outcomes, has been extensively researched. Recently, the idea was put forward that attention bias malleability (AM), i.e., the readiness to acquire an attentional bias irrespective of its direction, may be key in predicting poor pain outcomes. We tested this hypothesis in two studies. Methods: In Study 1, 55 healthy participants completed an AM paradigm, followed by an experimental heat pain paradigm probing pain experience and pain-related task interference. In Study 2, 71 people with chronic pain completed an AM paradigm and questionnaires probing pain experience and associated disability. Results: In Study 1, including healthy participants, no relationship was found between AM indices and experimental pain outcomes. In Study 2, including chronic pain patients, results indicated that higher levels of overall AM were related to higher levels of pain experience and disability. Conclusion: This study partially supports the hypotheses that the degree to which individuals can adapt their attentional preference in line with changing environmental conditions is associated with poor pain outcomes. However, future research is needed to clarify inconsistent findings between healthy volunteers and chronic pain patients as well as to determine the causal status of AM in poor pain outcomes.

Adaptive adjustment to the needs of families caring for children and adolescents with physical disabilities in north-eastern Tanzania: a grounded-theory study.

BACKGROUND: Family interactions, which are always multi-faceted, are complicated further by family members with disabilities. In resource-poor settings, policies and programmes that address the needs of and challenges faced by families are often inaccessible or unavailable. Approximately 13% of the families in Tanzania have at least one member with a disability, yet family-centred research on caring for disabled children and adolescents is scarce in this context. OBJECTIVE: The aim is to explore the needs and challenges faced by families that care for children and adolescents with physical disabilities in the Kilimanjaro Region of north-eastern Tanzania. METHODS: This qualitative study had a constructivist grounded-theory design. In-depth interviews, using a semi-structured interview guide based on the social-capital framework, were conducted with 12 female participants aged between 24 and 80. A conceptual model of family needs, inspired by Maslow's hierarchy of needs, informed the analysis. RESULTS: Challenging needs were grouped into five categories, which were linked to Maslow's hierarchy of needs and related to the central concept of 'adaptive adjustment': (1) 'barely surviving'; (2) 'safety needs in jeopardy'; (3) 'sociocultural protection'; (4) 'self-esteem far beyond reach', and (5) 'dreaming of self-actualisation'. CONCLUSION: Families caring for children and adolescents with physical disabilities in north-eastern Tanzania have needs that extend beyond the available and accessible resources. Families can adjust and adapt by avoiding certain situations, accepting the reality of their circumstances and exploring alternative ways of coping. A sustainable support system, including social networks, is essential for meeting basic needs and ensuring safety.

Main findings: The challenges associated with caring for children and adolescents with disabilities are related to various environmental and social barriers, any of which can significantly impact the wellbeing of all family members.Added knowledge: In the context of a study conducted in north-eastern Tanzania, both nuclear and extended family networks were found to be valuable sources of support for these families.Global health impact for policy and action: Families must take considerable steps to strengthen their sociocultural support systems while, the support of the government and other stakeholders is crucial in addressing the challenges faced by families caring for children and adolescents with disabilities.

Mind the gap: knowledge, attitudes and perceptions on antimicrobial resistance, antimicrobial stewardship and infection prevention and control in long-term care facilities for people with disabilities in the Netherlands.

BACKGROUND: Antimicrobial resistance (AMR) has become one of the major public health threats worldwide, emphasizing the necessity of preventing the development and transmission of drug resistant microorganisms. This is particularly important for people with vulnerable health conditions, such as people with intellectual disabilities (ID) and long-term care residents. This study aimed to assess the current status of AMR, antimicrobial stewardship (AMS) and infection prevention and control (IPC) in Dutch long-term care facilities for people with intellectual disabilities (ID-LTCFs). METHODS: A web-based cross-sectional survey distributed between July and November 2023, targeting (both nonmedically and medically trained) healthcare professionals working in ID-LTCFs in The Netherlands, to study knowledge, attitudes and perceptions regarding AMR, AMS and IPC. RESULTS: In total, 109 participants working in 37 long-term care organizations for people with intellectual disabilities throughout the Netherlands completed the questionnaire. The knowledge levels of AMR and IPC among nonmedically trained professionals (e.g., social care professionals) were lower than those among medically trained professionals (p = 0.026). In particular regarding the perceived protective value of glove use, insufficient knowledge levels were found. Furthermore, there was a lack of easy-read resources and useful information regarding IPC and AMR, for both healthcare professionals as well as people with disabilities. The majority of the participants (> 90%) reported that AMR and IPC need more attention within the disability care sector, but paradoxically, only 38.5% mentioned that they would like to receive additional information and training about IPC, and 72.5% would like to receive additional information and training about AMR. CONCLUSION: Although the importance of AMR and IPC is acknowledged by professionals working in ID-LTCFs, there is room for improvement in regards to appropriate glove use and setting-specific IPC and hygiene policies. As nonmedically trained professionals comprise most of the workforce within ID-LTCFs, it is also important to evaluate their needs. This can have a substantial impact on developing and implementing AMR, AMS and/or IPC guidelines and policies in ID-LTCFs.