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.

Perceptions and behaviors of healthcare providers towards rehabilitation support to children with severe malaria-related disability in Ethiopia: A qualitative descriptive study using the Theoretical Domains Framework.

INTRODUCTION: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. METHODS: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. RESULTS: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. CONCLUSIONS: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors.

An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

The effect of a training program on family stress and life satisfaction: A randomized controlled study of mothers of children with disabilities.

OBJECTIVE: This randomized controlled study focused on mothers of children with disabilities to determine the effect of a training program on family stress and life satisfaction. METHOD: The sample consisted of 52 mothers of children with disabilities (intervention group = 26 and control group = 26). The intervention group participated in a five-session training program on coping mechanisms and life satisfaction. Data were collected using the Questionnaire On Resource And Stress (QRS-FT) and the Satisfaction with Life Scale (SWLS). RESULTS: After the intervention, the mean life satisfaction scores of the intervention group participants increased (p < 0.05), while their mean total score of family stress decreased (p > 0.05). In the control group, the mean life satisfaction scores decreased (p > 0.05), while the mean total score of family stress increased (p < 0.05). CONCLUSION: The intervention helped mothers of children with disabilities experience more satisfaction with life and less family stress. Authorities should consider the outcomes of educational intervention studies and formulate training programs for mothers of children with disabilities. PRACTICAL IMPLICATIONS: Nurses can use interactive educational programs as nursing interventions to help mothers of children with disabilities experience less family stress and more life satisfaction.

Implementing Strengths-Based Nursing and Healthcare: A Decade of Leadership and Learning in a Canadian Pediatric Rehabilitation Setting.

The nursing context in pediatric rehabilitation is that of caring for children with disabilities and complex developmental differences and health conditions in an ever-changing and demanding environment. Rehabilitation nurses aim to continuously advance nursing leadership, practice, education and research to meet service needs. Strengths-Based Nursing and Healthcare (SBNH) is a philosophy and value-driven approach that aligns with and enables the advancement of strengths-based rehabilitation nursing and family-centred care. This paper describes the leadership approach undertaken to implement SBNH in a Canadian pediatric rehabilitation hospital context over a 10-year period. We will share what we did and what we learned.

Implementation of the My Abilities First Tool: A qualitative study on the perceptions of professionals, caregivers, children, and adolescents with disabilities.

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). METHOD: 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. CONCLUSION: 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.

Effect of resilience training on stress, hope and psychological toughness of mothers living with mentally and physically disabled children.

INTRODUCTION: Welfare and rehabilitation centers prioritize the welfare of children over the mental and physical well-being of mothers. The present study aimed to determine the impact of resilience training on stress, hope, and psychological toughness of mothers living with mentally and physically disabled children. MATERIALS AND METHODS: This intervention study was conducted in the Hamadan (Iran) Welfare and Rehabilitation Center in 2023. To this end, 70 parents of children with mental and physical disabilities were randomly selected and then randomly assigned to two control and intervention groups. In the intervention group, 9 resilience training sessions were conducted, each lasting 60 min. These meetings were held weekly at the welfare and rehabilitation center. The resilience training included three components: (1) exploring the concept of resilience within families and the attributes of individuals with high resilience, (2) examining internal and external factors that influence resilience, and (3) studying the strategies for enhancing family resilience. No intervention was performed in the control group. Data collection was done using parental stress, hope, and psychological toughness questionnaire. The mothers of both groups completed the above questionnaires both before and one month after the intervention. Data analysis was performed using chi-square (χ2), Kruskal-Wallis, and t-test with SPSS software (version 23) at a significance level of 0.05. RESULTS: Before the intervention, there was no statistically significant difference in parental stress between the two groups (p = 0.370). However, after the intervention, the difference between the two groups became statistically significant (p = 0.001). Similarly, there was no significant difference in parents' hope before the intervention (p = 0.452), but a significant difference was observed after the intervention (p = 0.001). Besides, parental psychological toughness was not significant before the intervention (p = 0.179) but became significant after the intervention (p = 0.000). CONCLUSION: Based on the results, resilience training reduced parental stress and increased hope and resilience in mothers of the test group. Therefore, resilience training is recommended to lower parental stress and increase the hope and psychological toughness of mothers of mentally and physically disabled children.

A Randomized Controlled Cluster Trial of an Obesity Prevention Program for Children with Special Health Care Needs: Methods and Implications.

Children with disabilities have higher prevalence estimates of obesity than typically developing children. The Healthy Caregivers-Healthy Children Phase 3 (HC3) project implemented an obesity prevention program adapted for children with special health care needs (CSHCN) that includes dietary intake and physical activity (PA) components. The primary outcome was a change in dietary intake, PA, and the body mass index (BMI) percentile. Ten childcare centers (CCCs) serving low-resource families with ≥30 2- to 5-year-olds attending were randomized to either the intervention (n = 5) or control (n = 5). The HC3 CCCs received (1) snack, beverage, PA, and screen time policies via weekly technical assistance; (2) adapted lesson plans for CSHCN; and (3) parent curricula. The control CCCs received a behavioral health attention curriculum. HC3 was delivered over three school years, with data collected at five different timepoints. It was delivered weekly for six months in year one. To ensure capacity building, the HC3 tasks were scaled back, with quarterly intervention delivery in year 2 and annually in year 3. Adaptations were made to the curriculum to ensure appropriate access for CSHCN. Given that the program was being delivered during the COVID-19 pandemic, special modifications were made to follow CDC safety standards. The primary outcome measures included the Environment and Policy Assessment and Observation (EPAO) tool, standardized dietary intake and PA assessments, and the child BMI percentile. CCCs are an ideal setting for targeting CSHCN for obesity prevention efforts as they provide an opportunity to address modifiable risk factors.

Benefits of being part of a support group for caregivers of children with multiple disabilities: a qualitative study. / Beneficios de pertenecer a un grupo de apoyo de cuidadoras de niños con discapacidad múltiple: un estudio cualitativo.

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. MATERIALS AND METHODS.: 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. RESULTS.: 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. CONCLUSIONS.: 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.

OBJETIVO.: 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. MATERIALES Y MÉTODOS.: 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. RESULTADOS.: 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. CONCLUSIONES.: 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.

Using the Theory of Affordances to Understand Environment-Play Transactions: Environmental Taxonomy of Outdoor Play Space Features-A Scoping Review.

IMPORTANCE: The transactions between the physical environment and children's play have not been well studied. The theory of affordances provides a way to better understand how environmental characteristics offer opportunities for play occupation. OBJECTIVE: To investigate the relationship between environmental characteristics of outdoor play spaces and children's outdoor play and to develop an environmental taxonomy to support the analysis of play affordances in community play spaces. DATA SOURCES: Peer-reviewed literature (1974-2023) was sourced from a previously published scoping review (Morgenthaler, Schulze, et al., 2023). The Academic Search Complete, Avery Index to Architectural Periodicals, CINAHL, MEDLINE, PsycINFO, Scopus, and Web of Science databases were searched using the keywords and synonyms of playground, environmental qualities, and children with and without disabilities. STUDY SELECTION AND DATA COLLECTION: A secondary analysis of the previously published scoping review was conducted. Included studies were those that provided descriptions of physical environment-play activity transactions. FINDINGS: A qualitative content analysis of 45 articles was conducted and used to form an environmental taxonomy. This taxonomy consisted of 14 space and object categories defined by their functional qualities and linked to play affordances. An array of 284 play occupations were identified in different forms. Play affordances of spaces and object categories and their functional environmental qualities were subsequently identified. CONCLUSIONS AND RELEVANCE: This study provides evidence to support the understanding of how the physical environment shapes children's outdoor play occupations. Plain-Language Summary: The study authors developed the Environmental Taxonomy of Outdoor Play Space Features as a tool that occupational therapists can use to better understand and describe how the physical environment shapes opportunities for play. The tool could also be useful to justify environmental intervention in schools and public playgrounds to create spaces that support more play for a diversity of children.

Nurses and the disabled child's perspective in the anaesthesia procedure preparation process using a picture schedule.

PURPOSE: This study's purpose was to investigate how nurses, using a picture schedule, enable or hinder the realization of disabled children's agency in the preparation for an MRI procedure carried out under general anaesthesia. METHODS: A qualitative observation study was used to explore the interaction of nurses and children. The data consisted of video recordings of 25 preparation situations of 3 (3-8 years old) children (with challenges in communication and/or cognitive skills) with 4 nurses. Verbal and nonverbal communication was analysed with interventionist applied conversation analysis. RESULTS: What was most crucial was how the picture schedule was used during the interaction. Reciprocal information sharing, responding to the child's initiatives by negotiating and allowing the child to take physical action with the picture schedule enabled the realization of the child's agency. CONCLUSIONS: The preparation process should aim to help the child prepare in his/her own way. The preparation tools should encourage reciprocal interaction in informing and in responding to the children's initiatives. The preparation practices should include enough time for the child's initiatives and physical participation. The results can be used in assessing preparation tools and how they are used from the perspective of the child's agency.

Prevalence and Determinants of Ocular Disorders among in-School Children with Physical and Mental Disabilities in Osun State, South West Nigeria.

PURPOSE: This study set out to determine the prevalence and the factors contributing to ocular disorders among children with physical and mental disabilities, who represent a vulnerable group in Osun State. METHODOLOGY: This was a cross-sectional study among children with physical and mental disabilities aged 5-17 years using a multistage sampling technique. Demographics, presence of ocular symptoms and determinants of ocular disorders were noted. Distant visual acuities were measured; refraction and ocular examination were performed. Appropriate drug treatment, prescribed spectacle or low vision aids were dispensed as necessary, at subsidized rates. RESULTS: Of 189 children enrolled, 103(54.5%) were males and 86(45.5%) were females, with male to female ratio of 1.2:1. Mean age was 14.7 ± 0.45 years and 28/189 (14.8%) had ocular disorders in either eye. Some of the participants had multiple pathologies. The commonest identified visual disorder was refractive error (11.1%). There was a statistically significant ocular disorder determinant among most mothers of respondents (82.1%) who had ocular disorders and did not receive antenatal care in the hospital, p<0.05. Only 28.6% of children who had ocular disorders were fully immunized. CONCLUSION: The majority of mothers of children with ocular disorders did not receive antenatal care in the hospital. Health education on the importance of early antenatal care in the hospital is advocated to reduce the occurrence of ocular disorders. Early assessment and correction of ocular problems will prevent unnecessary visual impairment in these vulnerable children.

OBJECTIF: Cette étude visait à déterminer la prévalence et les facteurs contribuant aux troubles oculaires chez les enfants présentant des handicaps physiques et mentaux, qui représentent un groupe vulnérable dans l'État d'Osun. MÉTHODOLOGIE: Il s'agissait d'une étude transversale menée auprès d'enfants atteints de handicaps physiques et mentaux âgés de 5 à 17 ans, utilisant une technique d'échantillonnage à plusieurs niveaux. Les données démographiques, la présence de symptômes oculaires et les déterminants des troubles oculaires ont été notés. Les acuités visuelles à distance ont été mesurées ; la réfraction et l'examen oculaire ont été effectués. Un traitement médicamenteux approprié, des lunettes prescrites ou des aides à la basse vision ont été délivrés au besoin, à des tarifs subventionnés. RÉSULTATS: Sur 189 enfants inscrits, 103 (54,5 %) étaient des garçons et 86 (45,5 %) étaient des filles, avec un ratio garçons/filles de 1,2:1, âge moyen de 14,7 ± 0,45 ans ; tandis que 28/189 (14,8 %) présentaient des troubles oculaires dans l'un ou l'autre des yeux. Certains participants avaient plusieurs pathologies. Le trouble visuel le plus fréquemment identifié était l'erreur réfraction (11,1 %). Il y avait un déterminant de trouble oculaire statistiquement significatif chez la majorité des mères des répondants (82,1 %) qui avaient des troubles oculaires et n'avaient pas reçu de soins prénatals à l'hôpital p<0,05. Seulement 28,6 % des enfants présentant des troubles oculaires étaient entièrement immunisés. CONCLUSION: La plupart des mères d'enfants atteints de troubles oculaires n'ont pas reçu de soins prénatals à l'hôpital. Une éducation sanitaire sur l'importance des soins prénatals précoces à l'hôpital est préconisée afin de réduire l'occurrence des troubles oculaires. L'évaluation précoce et la correction des problèmes oculaires préviendront une atteinte visuelle inutile chez ces enfants vulnérables. MOTS-CLÉS: Trouble oculaire, Prévalence, Enfants en âge scolaire, Handicaps physiques et mentaux.

Impact evaluation of a cash-plus programme for children with disabilities in the Xiengkhouang Province in Lao PDR: study protocol for a non-randomised controlled trial.

INTRODUCTION: More than 170 countries have implemented disability-targeted social protection programmes, although few have been rigorously evaluated. Consequently, a non-randomised controlled trial is being conducted of a pilot 'cash-plus' programme implemented by UNICEF Laos and the Laos government for children with disabilities in the Xiengkhouang Province in Laos. The intervention combines a regular cash transfer with provision of assistive devices and access for caregivers to a family support programme. METHODS AND ANALYSIS: The non-randomised controlled trial will involve 350 children with disabilities across 3 districts identified by programme implementers as eligible for the programme (intervention arm). Implementers have also identified approximately 180 children with disabilities in neighbouring districts, who would otherwise meet eligibility criteria but do not live in the project areas (control arm). The trial will assess the impact of the programme on child well-being (primary outcome), as well as household poverty, caregiver quality of life and time use (secondary outcomes). Baseline data are being collected May-October 2023, with endline 24 months later. Analysis will be intention to treat. A complementary process evaluation will explore the implementation, acceptability of the programme, challenges and enablers to its delivery and mechanisms of impact. ETHICS AND DISSEMINATION: The study has received ethical approval from the London School of Hygiene and Tropical Medicine and the National Ethics Committee for Health Research in Laos. Informed consent and assent will be taken by trained data collectors. Data will be collected and stored on a secure, encrypted server and its use will follow a detailed data management plan. Findings will be disseminated in academic journals and in short briefs for policy and programmatic actors, and in online and in-person events. TRIAL REGISTRATION NUMBER: ISRCTN80603476.

[The self-actualization of disabled child in family environment].

The problem of self-actualization of disabled children is actual because of barriers in modern society that prevent maximal possible disclosure of their potential and abilities at different stages of growing up. Despite high interest of modern researchers to problematic of self-actualization, this scientific category practically was not investigated in relation to individuals with disabilities, including children, that does not allow to ensure with high degree of efficiency inclusive life-style for this category of citizens. The purpose of the study is to identify specifics of self-actualization of disabled children in various periods of their sociogenesis in family conditions as first social environment of occurring inclusive processes. At that, self-actualization is considered as one of social factors determining formation of inclusive lifestyle of child with persistent health disorders. The theoretical analysis permitted to establish relationship between such categories as self-actualization, lifestyle and social inclusion of disabled children. At the empirical level, the analysis of results of semi-formalized interviews of parents (n=292) and disabled children (n=292) in the Murmansk Oblast, revealed characteristics of self-actualization of disabled children in the family. The social barriers preventing this self-actualization in family environment and inhibiting inclusive processes were identified. The results of the study can be laid in the foundation of designing and implementing variable inclusive social practices of disabled children with disabilities at different stages of sociogenesis, and expanding possibilities for their self-realization, considering needs of socializing personality.