OBJECTIVE: To understand how health, education and social care services for disabled children changed during the COVID-19 pandemic, what did or did not work well and what the impacts of service changes were on both professionals and families.
METHODS: Qualitative study using semistructured interviews.
METHODS: Telephone and video call interviews and focus groups with professionals working in one of five local authority areas in England.
METHODS: 78 health, education and social care professionals working with children in one of five local authority areas in England.
RESULTS: There was a significant disruption to services and reduced contact with families during the early stages of the pandemic; nevertheless, professionals were able to reflect on innovative ways they interacted with and sought to support and maintain health, education and social care provision to disabled children and their families. As waitlists have substantially increased, this and the longevity of the pandemic were perceived to have had negative consequences for staff health and well-being, the health and psychosocial outcomes of children and young people, and their parent carers.
CONCLUSIONS: Key learning from this study for service recovery and planning for future emergencies is the need to be able to identify disabled children, classify their level of need and risk, assess the impact of loss of services and maintain clear communication across services to meet the needs of disabled children. Finally, services need to work collaboratively with families to develop child-centred care to strengthen resilience during service disruption.

BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on \'fixing\'. The introduction of WHO\'s ICF framework for health and Canadian researchers\' \'F-words\' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents\' perspectives on their child\'s abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability.
METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an \'F-words Awareness Session\' and analysed using thematic analysis.
RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child\'s needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged.
CONCLUSIONS: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents\' emphasis on the concept of \'normality\'. Families\' positive response to the \'F-words Awareness Session\' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

The aim of this study was to identify factors associated with early identification of disabilities and developmental follow-up of children in primary health care (PHC) services under the Care Network for People with Disabilities (RCPCD). We conducted a cross-sectional study using data from a multicenter study undertaken in eight states. The data were collected using a structured questionnaire answered by PHC professionals with degree-level qualifications selected using random sampling and stratified by state and municipality. Poisson regression with robust variance was performed for the two outcomes. Of the 1,488 workers in the final sample, 63.6% performed early identification of disabilities and 49% provided developmental follow-up. Family health teams performed early identification of disabilities and follow-up more than traditional model teams, and expanded family health teams provided developmental follow-up more than both these teams. The factors that showed the strongest association with identification and developmental follow-up were profession, working in a family health team and knowledge of the RCPCD.
Objetivou-se identificar fatores associados à atenção à saúde infantil na atenção primária à saúde (APS), na perspectiva das ações preconizadas pela Rede de Cuidados à Pessoa Deficiência (RCPCD), quanto à identificação precoce de deficiências e acompanhamento do desenvolvimento infantil. Trata-se de estudo transversal, multicêntrico, realizado em oito estados brasileiros. A coleta de dados envolveu a aplicação de questionário estruturado com profissionais de saúde de nível superior atuantes na APS, com amostra aleatória estratificada por estado e município. Foram realizadas regressões de Poisson com variância robusta para duas variáveis resposta. Entre os 1.488 trabalhadores que compuseram a amostra final, 63,6% realizam ações de identificação precoce de deficiências e 49% efetuam acompanhamento do desenvolvimento infantil. As equipes de Saúde da Família (eSF) identificam e acompanham mais do que as equipes do modelo tradicional, e os Núcleos Ampliados de Saúde da Família e Atenção Básica realizam mais ações de acompanhamento do que essas equipes. Conclui-se que os fatores mais associados com a identificação e o acompanhamento de crianças com deficiências na APS foram aqueles relativos à formação profissional, à eSF e ao conhecimento de normativas relativas à RCPCD.

OBJECTIVE: To assess children\'s OHRQoL and associated factors among a sample of children with special needs in Riyadh, Saudi Arabia.
METHODS: A sample of 6- to 12-year-old children was obtained using convenience sampling from rehabilitation centers. Data were collected through a questionnaire and dental examination. The questionnaire included items related to the children\'s and their families\' characteristics, oral health-related quality of life scales (Parental-Caregivers Perceptions Questionnaire [P-CPQ] and Family Impact Scale [FIS]), perceived health status, and dental care utilisation. Clinical examination was performed by a trained and calibrated dentist. The data were analysed using SPSS; descriptive and inferential data analyses were also performed using SPSS.
RESULTS: The mean P-CPQ was 1.10 ± 0.74, and the mean FIS was 1.39 ± 0.88. There was a statistically significant correlation between P-CPQ and caries (r = 0.36, p = 0.02). After controlling for confounders, caries was associated with poor P-CPQ (B = 0.06, p = 0.024). Compared to low-income families, higher-income families had better P-CPQ (4000-8000 SAR: B = -1.36, p = 0.001).
CONCLUSIONS: Poor oral health-related quality of life in Saudi children is associated with caries and low income. Preventive measures addressing social determinants are vital to control caries and promote oral health in children with special health-care needs.

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BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme (\'Ubuntu\') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data.
METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis.
RESULTS: Three themes were identified that related to the aim of understanding caregivers\' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate.
CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

OBJECTIVE: To investigate the influence of powered wheelchair standing device (PWSD) use on changes in activity/participation in children with neurodevelopmental conditions.
METHODS: A mixed methods A-B-A single-subject research design was replicated with participants. The target behavior was parental perceptions of changes in children\'s performance of activity/participation goals measured via the Canadian Occupational Performance Measure (COPM). Secondary outcome measures included the COPM with children, an interview, and a 3-measure implementation survey. COPM data related to the target behavior were analyzed using the split-middle celeration line method.
RESULTS: Four child-parent dyads participated in the study. All participants achieved statistically and clinically significant increases in COPM performance ratings for the 5 parent-identified activity/participation goals.
CONCLUSIONS: For the participant dyads in this study, use of the PWSD appeared to positively influence parental perceptions of improvements in their child\'s performance of activity/participation goals.

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.
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.
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.
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\'.
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.

OBJECTIVE: Motivation for the study. Filling a knowledge gap regarding support groups for caregivers of children with multiple disabilities. Main findings. Support groups are valuable spaces for social support and learning for caregivers of children with multiple disabilities. They facilitate resilience and coping strategies following the birth of a child with multiple disabilities. They promote the participation and empowerment of caregivers of children with multiple disabilities to address access barriers and advocate for the fundamental rights of children. Implications. It is important to promote and support support groups for caregivers of children with multiple disabilities. To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities.
UNASSIGNED: A qualitative study with a focused ethnographic approach was conducted from October 2022 to February 2023, in which we applied convenience sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups, and semi-structured interviews. Thematic analysis was performed by applying Braun and Clark\'s proposals.
UNASSIGNED: The emerging themes were: social support network: integrating, informing, and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers.
UNASSIGNED: We found that the support group functions as a social support network provides information, reduces uncertainty, and facilitates coping and resilience after the birth and upbringing of a child with multiple disabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.
UNASSIGNED: Motivación para realizar el estudio. Llenar un vacío de conocimiento sobre los grupos de apoyo de cuidadoras de niños con discapacidad múltiple. Principales hallazgos. Los grupos de apoyo son espacios valiosos de apoyo social y aprendizaje para las cuidadoras de niños con discapacidad múltiple. Facilitan la resiliencia, el afrontamiento tras tener un niño con discapacidad múltiple. Favorecen la participación y empoderamiento de las cuidadoras de niños con discapacidad múltiple para enfrentar barreras de acceso y defender los derechos fundamentales de los niños. Implicancias. Es importante fomentar y respaldar los grupos de apoyo para cuidadoras de niños con discapacidad múltiple. Explorar la percepción de los beneficios de participar en un grupo de apoyo de cuidadoras de niños con discapacidad múltiple.
UNASSIGNED: Estudio cualitativo, enfoque etnográfico focalizado, realizado de octubre del 2022 a febrero del 2023, muestreo por conveniencia, participaron 20 cuidadoras de niños con discapacidad múltiple. La información se recolectó mediante observación participante, grupos de discusión y entrevistas semiestructuradas. Se realizó análisis temático aplicando las propuestas por Braun y Clark.
UNASSIGNED: Los temas emergentes fueron: red de apoyo social: integrarse, informarse y ayudarse mutuamente; espacio de aprendizaje: se aprende a cuidar y a cuidarse; promueve el empoderamiento: identificar y enfrentar barreras de acceso.
UNASSIGNED: El grupo de apoyo funciona como una red de apoyo social, proporciona información, reduce la incertidumbre, facilita el afrontamiento y la resiliencia tras el nacimiento y crianza de un hijo con discapacidad múltiple. Espacio donde se aprende a cuidar y a cuidarse a sí mismo y donde se promueve el empoderamiento para la defensa de los derechos de los niños con discapacidad.

OBJECTIVE: To analyze the perceptions of professionals, caregivers, children, and adolescents with disabilities regarding the implementation of the My Abilities First (MAF) tool in Specialized Child Rehabilitation Centers (CERs).
METHODS: This is a qualitative research based on Reflexive Thematic Analysis (RTA). The study involved twenty-seven intentionally selected individuals, comprising 12 physiotherapists, 4 occupational therapists, 11 caregivers, 9 children and 2 adolescents. Participants completed sociodemographic and clinical questionnaires and took part in semi-structured online interviews, focusing on two themes: Positive health approaches and the MAF tool. The study was approved by the local ethics committee (opinion 4.779.175).
RESULTS: Reflexive Thematic Analysis of the interviews resulted in two themes: (1) Perceptions regarding the MAF tool as an educational and contributory process to enhance the inclusion and participation of children and adolescents with disabilities, and (2) Barriers and facilitators for the implementation process of the MAF tool. The implementation of MAF was identified as a driving factor in promoting equity and increased participation of children and adolescents with disabilities in various settings, including health, education, and leisure. Interviewees highlighted the need to confront attitudinal, communication, and social barriers that may hinder the implementation of the tool.
CONCLUSIONS: The implementation of the MAF tool was perceived as an innovation due to its focus on the abilities of individuals with disabilities. However, there is a need to restructure it to broaden its scope and access to different contexts in order to confront barriers and enhance the inclusion and participation of children and adolescents with disabilities.