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.

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.

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.

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.

Utilizing an Environmental Framework to Explore the Acceptability of a Health Promotion Program for Youth with Disabilities.

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.

[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.

Experiences of Mothers With Physical Disabilities in the Care of Their Children and Their Expectations From Nurses.

Background and Purpose: The study aims to determine the experiences of Turkish mothers with physical disabilities in the care of their children and their expectations from nurses in this process and ensure the establishment of strategic recommendations for nurses in line with these expectations. Methods: This qualitative descriptive study included 21 mothers with physical disabilities of nondisabled children aged 0-18 years. Data analysis was conducted using the traditional content analysis method in the Max Qualitative Data Analysis Analytics Pro 2020 program. Results: Six themes were obtained from the analysis. Of the six themes determined, the themes "Prenatal Emotions and the Need for Support," "Postpartum Emotions and Childcare," "Strategies Facilitating the Care Process," "Child's Safety," "Advantages and Disadvantages," and "Expectations and Recommendations" are related to childcare, while the theme "Expectations and Recommendations" is related to expectations from nurses and other healthcare professionals and recommendations to mothers with physical disabilities. Implications for Practice: The participants stated that nurses' training and attempts to provide information related to their needs resulting from physical disabilities were limited.

When disability and homoparenting meet: the adoption of children with disability by same sex couples. / Quando a deficiência e a homoparentalidade se encontram: a adoção de crianças com deficiência por casais homoafetivos.

The present theoretical essay is based on six reports concerning same-sex couples and gay and lesbian people in order to interconnect homoparenting and the adoption of children with disabilities, through the lenses of human and social sciences in public health. The reports were interpreted in light of studies on same-sex adoption and the adoption of children with disabilities. Feminist approaches related to care and disability were also included in the interpretative perspective, operating as expressive webs of grammars of ableism. It was found that media approaches endorse the right to family formation and the adoption of children with disabilities by homoparental families, but with little critical depth on the category of disability and without highlighting support for the adoption of all adoptee profiles. Moreover, the intersections between homophobia and ableism increase discriminatory and oppressive logics, with the union of social groups considered to be "undesirable" representing a strategy of governmentality that reveals the complexity of grammars of ableism, applied to the sexual and reproductive rights of LGBTQIA+ adopters and to the fundamental rights of children and adolescents with disabilities who are available for adoption.

O ensaio teórico parte de seis reportagens sobre casais homoafetivos e pessoas gays e lésbicas para interseccionar homoparentalidade e adoção de crianças com deficiência, pelas lentes das ciências humanas e sociais em saúde coletiva. As reportagens foram interpretadas à luz dos estudos sobre adoção homoparental e adoção de crianças com deficiência. Abordagens feministas sobre cuidado e deficiência também compuseram o olhar interpretativo, operando como teias expressivas das gramáticas do capacitismo. Verificou-se que as abordagens midiáticas endossam o direito à constituição familiar e à adoção de crianças com deficiência por famílias homoparentais, sem aprofundar criticamente a categoria deficiência e sem destacar apoio à adoção de todos os perfis de adotandos. E que as intersecções entre homofobia e capacitismo incrementam lógicas discriminatórias e de opressão, sendo a união de grupos considerados "indesejáveis" uma estratégia de governamentalidade que revela a complexidade das gramáticas do capacitismo aplicadas aos direitos sexuais e reprodutivos de adotantes LGBTQIA+ e aos direitos fundamentais de crianças e adolescentes com deficiência disponíveis para adoção.

Accuracy of different dental age assessment methods to determine chronological age among children with special needs.

AIM: This study aimed to validate the accuracy of dental age (DA) based on the dental development of permanent teeth in children with special needs using Demirjian, Willems, and London Atlas methods and to correlate the dental and chronological age (CA) of children with special needs in Malaysia. MATERIALS AND METHODS: The panoramic radiographic images belonging to children with special needs from the two teaching dental hospitals in Malaysia aged between 5 and 16 years were included in the study. The evaluation was performed by two observers using three methods (London Atlas, Demirjian, and Willems methods) to estimate the accurate DA. The outcome was determined by comparing the mean of the DA and CA. RESULTS: A total of 52 panoramic radiographs were available for the analysis. The London Atlas and Demirjian methods overestimated the DA with a mean of 0.05 and 0.20 years, respectively, while the Willems method underestimated by 0.19 years. The London Atlas method was highly precise and accurate, while Demirjian and Willems methods were the least precise and accurate. CONCLUSION: The London Atlas method of DA estimation is highly accurate and valid for children with special needs in the Malaysian population, followed by the Willems and Demirjian methods.

What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?

Introduction: Children and youth with disabilities and special healthcare needs, and their families, have been uniquely affected by the COVID-19 pandemic. However, the voices of children themselves are still not well represented in the existing literature. Methods: This qualitative descriptive study used a combination of visual methods and interviews to learn about the experiences of Canadian children with disabilities (n=18) and their parents (n=14) during the COVID pandemic and into the post-pandemic period. Data collection was carried out between January and July 2023. The aim was to identify the supports and services children and families need at present and moving forward. Results: Families' pandemic experiences were complex and nuanced. For many, the pandemic complicated and disrupted everyday activities and supports. These disruptions were largely buffered by parents. However, some families also identified unexpected benefits. Key themes pertaining to present and future needs included the need for services that are flexible; consistent; conducive to relationship-building; comprehensive; coordinated across sectors; and designed to support the needs of the whole family. Discussion: Implications for policy and practice are outlined.

Postoperative Morbidity after Dental Treatment under General Anesthesia in Children with and without Disabilities.

Background and Objectives: General anesthesia induces reversible unconsciousness, eliminating sensation and enabling painless medical procedures. Vital for dental care, it addresses patients with medical conditions, those needing extensive procedures, and those unable to cooperate due to fear. Dental care for patients with disabilities is a significant unmet need, with studies showing increased oral disease prevalence. This research aims to analyze postoperative morbidity both in healthy and disabled children undergoing dental procedures under general anesthesia. Materials and Methods: This study involved 96 children aged 3 to 15 with dental caries. Two groups were formed: the control group (CTL) (52.94%) included healthy patients requiring general anesthesia due to unsatisfactory cooperation, and the other group included children with physical or intellectual disabilities (CD) (47.96%). Postoperative complications were monitored 1 h after the procedure and 1, 3, 7, and 14 days after the procedure by contacting parents/caregivers by phone. The intensity of postoperative pain was assessed using the Wong-Baker faces pain rating scale. General anesthesia was conducted following a standardized protocol for dental procedures. Results: CTL patients complained more often about postoperative pain 1 h after the procedure (p = 0.03). One day after the procedure, oral bleeding (p = 0.04), fever (p = 0.009), and diarrhea (p = 0.037) occurred more often in CD. In the same period, sore throat appeared more often in CTL (p = 0.036). Three days after the dental treatment, there were statistically significant increases in the occurrence of agitation (p = 0.043) and constipation (p = 0.043) in CD. Seven days later, CD demonstrated a higher occurrence of agitation (p = 0.037). According to the Wong-Baker faces pain rating scale, CTL experienced more frequent and intense pain. Conclusions: CD more frequently reported complications like oral bleeding, fever, and diarrhea. In contrast, the CTL group more often reported pain-related symptoms. The conclusion underscores the need for a pain control protocol for CD and emphasizes the importance of frequent monitoring to prevent unwanted consequences during tooth restoration under general anesthesia.

Childhood disabilities and the cost of developmental therapies: the serviceprovider perspective.

PURPOSE: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. METHODS: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. RESULTS: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. CONCLUSIONS: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Correlates of perceived shared decision making with parents of children with special healthcare needs: Findings from the PART-CHILD study.

OBJECTIVE: To assess the extent of perceived shared decision making (SDM) with parents of pediatric patients and to examine its association with characteristics of patients, professionals, and healthcare facilities. METHODS: Parents of pediatric patients (n = 4383) were recruited in 15 social pediatric centers in Germany and provided information on perceived SDM (binary CollaboRATEpediatric score: optimal versus suboptimal extent of SDM), child age and sex, type of impairment, appointment, and healthcare professional present at the appointment. Organizational characteristics were assessed in a cross-sectional survey of staff at the study sites. RESULTS: Overall, 58.4% of parents reported an optimal extent of SDM. The optimal extent of SDM was more likely reported by parents of girls (OR=1.27, p < 0.001) and children with physical (as opposed to cognitive and combined) impairments (OR=1.30, p = 0.006), and after appointments attended by allied health professionals (OR=1.28, p = 0.004). In addition, parents in facilities receiving financing in addition to compensation by statutory health insurance funds were less likely to report an optimal extent of perceived SDM. CONCLUSION: While SDM with parents was mostly related to individual characteristics of children and professionals at appointments, organizational characteristics seemed less relevant in our study. PRACTICE IMPLICATIONS: Staff should be made aware of lower SDM with parents of boys, older children, and those with cognitive impairments, and trained to improve the SDM in these groups.

Exploring long-term outcomes of a peer support programme for parents* of children with disability in Australia.

Peer support groups can offer parents of children with disability, positive well-being outcomes. Peer support groups not only provide opportunities for connections with others with similar experiences but also provide resources and information, emotional support, a sense of belonging and may help reduce stress and isolation. Peer support groups are an established form of support existing within family centred practice. However, it is unclear whether peer support groups achieve the outcomes that they aim to deliver. Further, little is known about the longer-term outcomes for parents attending such groups. This study aimed to explore the medium- and long-term outcomes and experiences of parents who participated in a peer support programme (the Now and Next programme) for parents of children with disability. Well-being data were collected at three timepoints (Ts): prior to commencing the programme (T1), immediately after completion of the programme (T2) and 6-30 months after completion of the programme (T3). Results of the study showed empowerment and well-being improved from T1 to T2, with gains maintained at T3. Hope scores did not significantly change over time. Participants continued to set and achieve goals over time using resources from the programme. Improvements in parents' well-being and empowerment scores were maintained in the longer-term. Our study contributes to evidence confirming sustained long-term outcomes of peer support programmes and demonstrates that building parent capacity, empowerment and well-being has a lasting effect on the parents of children with disability.

Health Equity and Children With Medical Complexity/Children and Youth With Special Health Care Needs: A Scoping Review.

A scoping review was conducted to systematically map the research on children with medical complexity and children and youth with special health care needs (CYSHCN) surrounding health equity. Fifteen articles were reviewed with focus on: access to care, quality of life and well-being, and insurance challenges/financing. Findings suggest CYSHCN require more and different types of services than those for typically developing children and youth, yet the current system is not ensuring access to these services. It is important to understand the unique perspectives, challenges, and opportunities of and for this population to better inform policy, research, and practice.

The strain among caregivers of children with disabilities at the community-based rehabilitation centres in Kudat division of Sabah, Malaysia.

INTRODUCTION: The prevalence of children with disabilities (CWD) is increasing. CWD requires exceptional long-term attention, which often falls on the caregivers. Caring for a CWD affects caregivers in multiple ways, such as physical, social, personal, and financial aspects. Most of the CWD will be cared in Community-Based Rehabilitation (CBR) centres where the caregivers have to play a crucial role as they become partners in the respective service delivery. However, there is still insufficient information on the impact (strain) of a disabled child on the caregivers in the CBR centre in the Kudat division of Sabah, Malaysia specifically. Hence, this study aims to explore the strains among caregivers of CWD at the CBR centre in the Kudat. MATERIALS AND METHODS: A cross-sectional study through a purposive sampling method was employed, involving 142 caregivers of CWD at the selected CBR centre. Four CBR centres were selected in this study, which were located in the Kudat division of Sabah. The Malay version of the Modified Caregiver Strain Index Questionnaire (M-CSI-M) was used in this study to obtain information about the caregiver's strain. RESULTS: Findings from this study revealed that most caregivers experienced moderate strain (72.5%). Some of the leading causes of their strain were upsetting CWD's behaviour (10.6%), financial strain (9.2%), and overwhelmed (9.2%). In addition, there were significant differences between caregiver strain and their level of education, income, and the types of their child's disabilities (p ≤ 0.05). CONCLUSION: The well-being of the caregivers may significantly impact the effectiveness of rehabilitation for CWD, as caregivers are vital interdisciplinary team members.