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.

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

BACKGROUND: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. AIMS: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. METHODS AND PROCEDURES: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis. RESULTS: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. CONCLUSIONS: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.

Evaluating Medicaid Managed Care Network Adequacy Standards And Associations With Specialty Care Access For Children.

Medicaid managed care plans cover more than 80 percent of Medicaid-enrolled children, including many children with special health care needs (CSHCN). Federal rules require states to set network adequacy standards to improve specialty care access for Medicaid managed care enrollees. Using a quasi-experimental design and 2016-19 National Survey of Children's Health data, we examined the association between quantitative network adequacy standards and access to specialty care among 8,614 Medicaid-enrolled children, including 3,157 with special health care needs, in eighteen states. Outcomes included whether the child had any visit to non-mental health specialists, any visit to mental health professionals, or any unmet health care needs and whether the caregiver ever felt frustrated in getting services for the child in the past year. We observed no association between the adoption of any quantitative network adequacy standard and the above outcomes among Medicaid-enrolled children. Among CSHCN, however, adopting any quantitative standard was positively associated with caregivers feeling frustrated in getting services for the child, especially among CSHCN who visited non-mental health specialists. Without additional interventions, adopting new network adequacy standards may have unintended consequences for CSHCN.

Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: a cross-sectional study.

OBJECTIVE: To describe mental health outcomes and measures of pandemic burden of children with and without special healthcare needs, and their caregivers following the second wave of the COVID-19 pandemic in Germany. DESIGN: This is the second of a sequential series of cross-sectional online surveys conducted among caregivers of children ≤18 years since the onset of the COVID-19 pandemic, administrated between 2 April 2021 and 31 July 2021. MAIN OUTCOME MEASURES: Child and parental mental health were assessed using the Strengths and Difficulties Questionnaire and WHO-5 Well-being index. Children with Special Healthcare Needs (CSHCN) were identified using the CSHCN-Screener. Descriptive statistics, linear and hierarchical logistic regression modelling assessed associations between parent-reported child mental health problems and measures of pandemic burden, disease complexity, caregiver mental well-being and socioeconomic status. RESULTS: 521 participants were included in the final sample. There was a high prevalence of parent-reported mental health problems in n=302 (66.7%) children, particularly in CSHCN. Among caregivers, n=372 (72.5%) screened positive for depression. Logistic regression modelling showed a strong association of child mental health problems and disease complexity, parental mental well-being, increase in family conflict and inadequate social support. CONCLUSIONS: Our study identifies CSHCN as a particularly vulnerable group in terms of mental health outcomes. Psychosocial factors were important predictors of parent-reported child mental health problems. Policy measures should consider the importance of social support systems for vulnerable children and their families, and aim to provide accessible mental health support for caregivers.

A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families.

Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care. To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration's Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field. This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN. Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels. Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.

Family and personal factors associated with the participation of children with special needs in leisure activities: A Turkish perspective.

OBJECTIVE: The primary aims of the current study were to describe the participation patterns in leisure activities of children between the ages of 6 and 15 years with special needs and to analyze family behavior and personal factors that affect participation. MATERIAL AND METHODS: Overall, 112 children with special needs aged 6-15 years and their families participated in the present study. Children's sociodemographic characteristics, participation patterns in leisure activities, family behavior, and quality of life were evaluated. RESULTS: In this study, it was observed that children participated in recreational activities the most and in physical activities the least. Most of the families reported that they did not have an influence on determining the activity. The findings showed correlations between leisure activities and age, gender, and socioeconomic status (p < 0.05). CONCLUSION: The findings suggest that (a) children's participation in activities outside the home and (b) family guidance are insufficient. Thus, rehabilitation professionals can inform families about activities appropriate for children, positive family behavior, and social support programs.

Adjusting the family's life: A grounded theory of caring for children with special healthcare needs in rural areas, Thailand.

This study aims to understand the experiences of families of children with special healthcare needs in rural areas in Thailand. Grounded theory (GT) was employed to understand families' experiences when caring for children with special healthcare needs (CSHCN) in rural areas. Forty-three family members from thirty-four families with CSHCN participated in in-depth interviews. Interviews were recorded and transcribed. The constant comparative method was used for data analysis and coding analysis. Adjusting family's life was the emergent theory which included experiencing negative effects, managing in home environment, integrating care into a community health system, and maintaining family normalization. This study describes the process that families undergo in trying to care for CSHCN while managing their lives to maintain a sense of normalcy. This theory provides some intervention opportunities for health care professionals when dealing with the complexities in their homes, communities and other ambulatory settings throughout the disease trajectory, and also indicates the importance of taking into consideration the family's cultural background.

Assessment of Have Problems and Care Burdens of Mothers with Handicapped Children in COVID-19 Pandemic.

In the study, it was aimed to evaluate the problems and care burden of mothers who have a handicapped child in the pandemic process. The population of the descriptive study consisted of the mothers of the children who came to the rehabilitation center (n = 230), and the sampling consisted of the mothers who wanted to participate in the study (n = 216). The research data were collected through social media and the data were analyzed using the mean, standard deviation, percentage and frequency measurements, independent sample t test, Oneway anova, Kruskal wallis tests in the SPSS program. In the study, Burden Interview Scale (BIS) scores of the mothers who stated that the educational status of their child was adversely affected in the pandemic, stated that they were worried that there would be someone to take care of my child if I died, stated that the child's health checks were interrupted, stated that they did not send their child to school due to the fear of COVID-19, and reported that they had a problem in reaching the health institution was determined were significantly higher than. Mothers with handicapped children stated that their children experienced difficulties in important situations such as health checks and educations during the pandemic period. In addition, it was found that the care burden of these mothers was higher. During the pandemic period, it is necessary to make and support new regulations in accordance with the disability of these special children with state policies as well as healthcare professionals.

Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores.

Purpose: The purpose of this study was to investigate quality of life and participation in children aged 3 to 17 years with visual impairment (VI) compared to reference groups and between subgroups with increasing severity levels of VI. Methods: Parents of children aged 3 to 17 years (n = 500) and children aged 13 to 17 years (n = 75) completed the Child and Adolescent Scale of Participation (CASP). Children aged 7 to 17 years (n = 263) and their parents (n = 255) completed the KIDSCREEN-27 questionnaire to assess quality of life. Scores were compared to age and/or gender-appropriate population-based samples. For the CASP, a comparison was also made with children with chronic conditions or disabilities. The association between severity of VI and quality of life or participation was analyzed with linear regression models. Results: Children reported significantly worse on Physical Wellbeing and Social Support & Peers, but better on the School Environment KIDSCREEN-27 subscales compared to reference groups. Parents additionally reported worse on Autonomy & Parent Relation. Children's participation was significantly worse compared to a population-based sample, but significantly better compared to children with chronic conditions and disabilities. Having moderate or severe VI/blindness was significantly associated with worse participation, as reported by parents relative to those with no VI. Conclusions: Quality of life of children with VI is affected especially regarding Physical Wellbeing and Social Support & Peers compared to a reference population, and their participation is considerably worse. Participation was more affected in children with more severe VI. These results contribute to the understanding of the impact of VI. Interventions targeting physical health, social skills, and participation are warranted.

The Experience of Housing Needs Among Families Caring for Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Caregivers of children with medical complexity (CMC) face many stressors related to their child's medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. METHODS: We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. RESULTS: Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child's illness and medical needs. In addition, parents indicated their child's illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver's housing preferences and possibilities. CONCLUSIONS: Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child's health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.

Transcultural adaptation, content validity and reliability of the instrument 'Picture My Participation' for children and youth with and without intellectual disabilities in mainland China.

BACKGROUND: 'Picture My Participation' (PMP) is a validated questionnaire for assessing participation in everyday activities by children with disabilities in low and middle income countries, but it is not yet available in simplified Chinese. AIM: To describe the cross-cultural adaptation of the simplified Chinese version of 'Picture My Participation' (PMP-C; Simplified) and explore its validity and reliability. METHODS: A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with structured interviews supported by pictures for children and youth with and without intellectual disabilities (ID) in mainland China. The validity of the PMP-C (Simplified) was demonstrated by face validity and content validity while the reliability was evaluated for internal consistency and test-retest reliability. RESULTS: Five items were slightly modified and eight pictures were revised to improve their fit with the culture of mainland China. All the items in PMP-C (Simplified) had excellent content validity, and face validity. The internal consistency, reliability coefficient and test-retest reliability of the subscale attendance for children and youth with and without ID were excellent. CONCLUSION: Preliminary evidence of the content validity of PMP-C (Simplified) items and reliability of the subscale attendance for use with children and youth in mainland China has been gathered. However, psychometric properties in terms of construct validity for the whole instrument and reliability for the engagement subscale need further exploration.

Psychometric properties of the Assessment Tool for Perceived Agency (ATPA-22) - utility for the rehabilitation of young adults not in education, employment or training (NEETs).

BACKGROUND: Promoting and supporting agency have been at the heart of the debate multidisciplinary. To promote self-awareness of young people's agency and identify persons in need of support the Assessment Tool for Perceived Agency (ATPA-22) was developed. AIM: This study aims to evaluate the psychometric properties of the ATPA-22. Participants were young adults not in education, employment or training (NEETs) and students in higher education (HEI). MATERIALS AND METHODS: The main data analysis was implemented by Many Faceted Rasch (MFR) analysis. RESULTS: The ATPA-22 items defined a unidimensional construct with reasonable internal consistency and separation ability. The ATPA-22 was capable of detecting differences between HEI students and young adult NEETs. Nine differential functioning items emerged between the groups. CONCLUSIONS: ATPA-22 shows promise as a tool to assess young adults' perceived agency. Anyhow, as the individual life situation affects strongly to perceived agency, research on the stability of the ATPA-22 among different populations is needed. SIGNIFICANCE: The purpose of the ATPA-22 is to measure perceived agency of individuals, and to identify aspects of agency in need for support. ATPA-22 can be used as a tool for promoting self-awareness of occupational challenges.

Family-centeredness of services for young children with Down syndrome: an observational study from Turkey

Background/aim: Physicians require information on the family centeredness of services for children with Down syndrome, one of the most frequently encountered disabilities in childhood. We aimed to determine the family-centeredness of services for young children with Down syndrome and using a bioecological theory framework we hypothesized that child, family and service-related factors would be associated with such services. Materials and methods: In a crosssectional design, children with Down syndrome seen at Ankara University Developmental Pediatrics Division (AUDPD) between February 2020 and June 2020 were included if they had received services in the community for at least 12 months. Mothers responded to the measure of process of care-20 (MPOC-20) used to measure family centeredness. Results: All 65 eligible children were included; 57% were boys and median age was 25.0 (IQR: 18.5­38.0) months. The MPOC-20 subscale scores were highest for the "respectful and supportive care (RSC)" (median 6.0; IQR: 4.8­6.8) and lowest for the "providing specific information" (median 3.0; IQR: 4.4­6.5) subscales. On univariate analyses, maternal education

The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia.

The current study aimed to understand psychosocial and economic impacts of female caregivers and families caring for children with a disability in Belu district, Indonesia. A qualitative inquiry employing one-on-one in-depth interviews was used to collect data from participants (n = 22). Data analysis was guided by a framework analysis for qualitative research. Social implications framework and the economic consequence of disease and injury framework were used to guide the conceptualisation, analysis and discussion of the findings. Findings indicated that female caregivers of children with a disability experienced significant psychosocial challenges. These included feeling frustrated, sad, angry, worried, inferior and insecure due to rejection of their children by other kids with no disability. Poor physical conditions of and negative labelling given to their children and the fear of what the future held for their children with a disability added yet another layer of psychosocial challenges experienced by these women. Separation or divorce and reduced social interaction and engagement in the community were expressed social impact loaded to these women resulting from poor acceptability of the children by their fathers, increased time spent caring and discriminatory and stigmatising attitudes against their children with a disability. The participants also experienced economic impacts, such as increased health and transport expenses, loss of jobs and productivity, and lack of savings. The findings indicate the need for programs and interventions addressing the needs of mothers or female caregivers and families with disabled children. Further studies with large number of participants covering mothers, fathers and caregivers to understand broader experiences and the need of caring for children with a disability are recommended.

Psychometric properties of the Turkish version of Participation and Environment Measure for Children and Youth.

BACKGROUND: Participation in daily activities provides many opportunities for children with and without disabilities to improve cognitive, physical and communication abilities; to develop social relationships and to promote adaptive behaviours. The aim of this study is to examine the psychometric properties of the Participation Environment Measure for Children and Youth (PEM-CY) in Turkish children and youth with and without a disability. METHODS: A total of 410 parents of children with (n = 232) and without (n = 178) disabilities, aged 5-17 years, were included in this study. Cronbach's alpha (α) and intraclass correlation coefficients (ICCs) were evaluated for internal consistency and test-retest reliability, respectively. Discriminant validity was determined by comparing the differences in participation and environment scores for disability groups and age intervals with the two-way analysis of variance (ANOVA) followed by post-hoc analyses when results were statistically significant. RESULTS: Internal consistency (0.67-0.80) and test-retest reliability (0.67-0.93, p < 0.0001) ranged from moderate to very strong for different summary scores. Discriminant validity of the Turkish version of PEM-CY was supported by significant differences between children with and without disabilities on participation and environment scales (p < 0.05). We identified some significant age differences, but they did not follow consistently. CONCLUSIONS: The Turkish version of the PEM-CY is a valid and reliable tool to determine the participation and environmental factors in the home, at school and in community settings in Turkish children and youth aged 5-17 years, with and without disabilities.

Health challenges of mothers with special needs children in Pakistan and the importance of integrating health social workers.

There is concern that mothers of special needs children in developing countries like Pakistan are neglected populations facing hidden health challenges. The aim of this study was to investigate the kinds of health challenges mothers experience and to highlight the role of health social workers in supporting the needs of mothers. Twenty-one mothers were sampled across three cities and findings were analyzed through a thematic content analysis approach. Findings revealed that mothers faced significant and salient challenges under eight sub-categories of mental health and six sub-categories of physical health. We recommend that health social workers collaborate with healthcare practitioners to improve health services for mothers and also coordinate with other social workers, community members, and policymakers for improving both social and structural support for special needs families.

Global prevalence estimates of three chronic musculoskeletal conditions: club foot, juvenile idiopathic arthritis and juvenile systemic lupus erythematosus.

BACKGROUND: Musculoskeletal (MSK) conditions are a major source of morbidity and disability. There is a lack of global comparable data on the burden of MSK conditions in children and young people. Our aim was to estimate the global prevalence of three MSK conditions - Talipes Equinovarus (Clubfoot), Juvenile Idiopathic Arthritis (JIA) and Juvenile Systemic Lupus Erythematosus (JSLE). METHODS: Using reported prevalence rates, age-stratified population data within the World Bank Data Bank in 2017 and United Nations country classification, we estimated the prevalence of these MSK conditions in < 5 year olds (clubfoot) and < 16 year olds (JIA and JSLE) across the world. RESULTS: We estimated that in 2017, there were ~ 675,061 < 5 year olds with clubfoot among 675,100,000 < 5 year olds, ~ 2,069,246 < 16 year olds with JIA and ~ 206,931 < 16 year olds with JSLE per 2,069,000,000 < 16 year olds, totalling ~ 2,951,238 with one of these conditions. Disease prevalence was greatest in Asia (South Asia), followed by Africa, Americas, Europe and Oceania. CONCLUSIONS: An estimated 3 million children and young people globally are currently living with either clubfoot, JIA or JSLE; many in Asia and Africa. Further work is needed urgently to engage with global stakeholders to work together to improve access to effective care for the many who are affected and reduce the otherwise adverse lifelong impact on their health, quality of life and the impact on society.

Principles of disability support in rural and remote Australia: Lessons from parents and carers.

This study describes the understanding, experiences and expectations of families living in rural and remote Australia regarding core concepts relating to disability service provision, including person-centred practice (PCP), family-centred practice (FCP), transdisciplinary practice (TDP), choice, control, inclusion, and equity. Thirteen parents or carers, each with a child with an intellectual disability aged between 6 and 16 years, living in rural and remote areas as described by the Australian Standard Geographical Classification - Remoteness Area (ASGC-RA) and Modified Monash Model (MMM) - were recruited through distribution of flyers (hard copies or by email) to clinicians, schools, and advocacy agencies. Semi-structured interviews were conducted with participants either in-person or via telephone between July and October 2015. Data were analysed using thematic analysis. Participants reported that their understanding of many of the disability principles (PCP, FCP, choice, control, inclusion, and equity) was different from providers, and that many providers struggled to understand families, and therefore they did not share meaning of the principles of best practice disability supports. Families did not identify transdisciplinary practice as a core issue or tenet of effective service delivery. Families also reported experiences of missing out on services, feeling a sense of isolation in their communities, struggling to access skilled therapists, and difficulty finding supports and goals that were relevant to their child. The quality of supports that these families accessed was often below the standard that they expected. They did not expect that support standards will change in rural and remote Australia, so many have very low expectations of the National Disability Insurance Scheme (NDIS) in the future. Although more data will need to be collected as the NDIS and its markets mature, these data show that many rural and remote participants and their supporters have a variety of concerns about how they will access quality allied health services through the Scheme.

Eating disorders and needs of disabled children at primary school.

AIM: The aim of this study was to provide current information on the eating disorders, needs and confronted problems of children with disabilities during their school hours at primary schools. BACKGROUND: Eating disorders and needs of disabled children are important in their participation in school life, cognition, and academic achievement. RESULTS: In this study, It was aimed to reach all children with disabilities attending at 72 primary schools located in low, medium and high socio-economic districts in Ankara, capital of Turkey; 404 parents voluntarly accepted to participate in the study. This study has revealed that students with disabilities experienced eating disorders such as forget to eat foods at feeding time, cannot go to canteen to buy food, have sucking and/or chewing problems, lack of self-care skills and need support while eating at schools. The percentage of children who had breakfast at school was 18.1%. The percentage of those who indicated that their child had lunch at school was 59.0%. The children from low socio-economic district had the highest percentage of adequate nutrition at schools in the last week. Families whose children having lack of self-care skills (50.0%), were picky eaters (38.5%), having lack of appetite (42.1%), experienced from constipation frequently (50.0%), have reflux problem (29.0%) considered that their children needed feeding supports at school. CONCLUSION: Families whose children having eating disorders at schools considered that their children needed feeding supports. Fulfilling the needs of children with disability and providing them support as positive discrimination would ensure healthy development and participation in school life and generate positive effects on their academic achievement. The school health policies have to encompass nutritional needs of vulnerable children to benefit from right to education in an adequate and effective manner.