Care Of Handicapped Children Research Articles

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

ABSTRACT 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.

Problems of providing social security to unemployed citizens

To date, the legislation on social security in many cases grants the right to receive social security in the absence of employment. It should be understood that in addition to those measures of social protection and social security that are directly related to the status of the unemployed, in particular, unemployment benefits, the right of social security has a number of payments that, although they do not directly imply protection from unemployment, but as a consequence of the fact that they are provided in the absence of employment, respectively, may be the source of income during the period when the person is unemployed. In this regard, the article draws attention to the recipients of the survivor’s insurance pension, caring for disabled children, brothers, sisters of the deceased breadwinner under the age of 14, who themselves receive this pension. Their receipt of an insurance pension in case of loss of a breadwinner is currently associated with a number of problems in determining the amount of insurance pensions in case of loss of a breadwinner.

Management of Informal Caregivers’ Burden in a Selected Region of the Czech Republic

Objective: Care of handicapped or elderly by the family members in the home environment brings not only many positives for the care recipients, but can also impose a significant burden on the caregiver. The goal of the study was to assess the caregiver burden, burnout syndrome and the effect of caregivers’ sociodemographic characteristics. Design: Cross-sectional study. Participants: The sample consisted of 168 caregivers who took care of disabled children or seniors. Methods: Zarit Burden Interview identifying the subjective burden of informal caregivers, and Maslach Burnout Inventory assessing the burnout syndrome were used. Results: A higher level of caregiver burden and the development of burnout syndrome occurring most frequently in the dimensions of Emotional Exhaustion and Personal Accomplishment was observed. The caregiver burden was found to be lower in men, in caregivers living alone, and in the respondents from higher income households; it increased with the weekly amount of care. Conclusions: The results proof the demanding nature of informal care. A longitudinal study could illuminate the temporal changes in the family dynamics.

PRE-SCHOOL EDUCATION TEACHERS’ COMPETENCE DEVELOPMENT IN THE WORK WITH CHILDREN WITH SPEECH DISORDERS IN INCLUSIVE EDUCATION

From generation to generation, there are still very topical issues affecting the education system, the quality of its performance, the methods used and the forms of organization. In the 20th century inclusive education problems were studied in Europe and the United States. Several laws have been developed that increase the ability of children with special needs to receive quality education according to their needs and abilities.There are countries where inclusive education is seen as an approach to care for disabled children. But at international level, it is seen as a reform that supports diversity among all students (UNESCO, 2001).The aim of this study is to investigate the competence of pre-school education teachers in working with children with insufficient development of the language system, to develop and approbate a program for teacher competence development.The study summarizes the questionnaire data of pre-school teachers.Quantitative and qualitative research methods were used.The research results suggest that there is a need for regular improvement of teachers' competence in working with children with insufficient development of the language system.

EDUCAÇÃO INCLUSIVA: A ATUAÇÃO DO PROFESSOR DE APOIO

Este artigo propõe realizar análise e reflexão a respeito do professor de apoio como coparticipante no processo de escolarização de crianças com deficiências dentro da escola inclusiva. Sua participação neste processo é ainda incipiente, uma vez que muitas escolas regulares não sabem que podem contar com este profissional, ou negligenciam na busca de melhores condições de aprendizagem para estas crianças. O trabalho de pesquisa aqui exposto evidenciou estes aspectos. A escola que mantinha o professor de apoio para um aluno com deficiência intelectual se encontrava em vantagem relativa quanto ao desenvolvimento da aprendizagem. Este docente tem um papel bastante importante quando seu trabalho é feito em parceria com o professor da classe. O professor de apoio deve ser um profissional habilitado ou especializado em educação especial, que trabalha com o aluno deficiente que precise de apoio intenso e contínuo e que esteja inserido em salas regulares. Deve auxiliar a criança deficiente, o professor regente e a equipe técnica que por vezes presta atendimento às crianças deficientes. Deve ser detentor de conhecimentos específicos como código de linguagens e técnicas que possibilitem ao aluno o aprendizado dos conteúdos ensinados.

From Feeling Broken to Looking Beyond Broken: Palestinian Mothers' Experiences of Having a Child With Spina Bifida.

Spina bifida (SB) is the second most common birth defect worldwide. Mothers of children with SB face extraordinary challenges due to the complicated conditions and disability of their children. Little is known about the impact of these challenges on the mothers' well-being, particularly in Middle Eastern culture, where chronic illness and disability are perceived as a stigma, and care of disabled children has traditionally been the responsibility of the mother. The aim of this study was to illuminate mothers' lived experience of having a child with SB in Palestine. Twenty Arab-Muslim mothers living in Palestine were purposefully recruited from several rehabilitation centers in Palestine and were interviewed in 2014. The transcribed interviews were analyzed according to phenomenological hermeneutics. The mothers' experiences were described in the main theme: From feeling broken to looking beyond broken. Four themes were interwoven: living with constant anxiety, living with uncertainty, living with a burden, and living with a difficult life situation. These findings highlight the burden and resilience of the Arab-Muslim Palestinian mothers while striving to maintain the well-being of the whole family as well as facilitating the child's welfare.

Positive coping and resilience : Questions and conclusions drawn from a longitudinal study

In 2002–2004, during a research about families taking care of disabled children or adults, we created the criteria of coping successfully. Interpreting through this filter the resulting data and the responses a coping profile has outlined. Ten years later, we repeated the survey and found that in the interpretation of the data, the coping criteria from the first research was not sustainable. To better understand this phenomenon, we performed in-depth interviews and we added a CHIP (Coping Health Inventory For Parents) questionnaire that provides insight to coping behaviours used by parents. The results we obtained further highlighted our suspicion that the factor of successful coping from the first period of facing disabilities significantly changed through the years. This phenomenon can be interpreted not only in terms of the life of individual families, but also shows the overlaps and differences between the meanings of the terms ‘coping’ and ‘resilience’, and the professional challenge brought by the supported resilience in the ‚overseeing’ of these families.

Assessment of Independence Levels to Children Physical Mobility Handicapped in Thi-Qar Rehabilitation Center

Objective: To assess of Independence Levels to Physical Mobility Handicap children in Thi-Qar Rehabilitation center. Methodology: Descriptive study was conducted at in Thi- Qar Rehabilitation Center through the period from November 1st, 2014 through April 15th, 2015 on children with physical mobility handicap age 9-16 years old. The questionnaire has been constructed after extensive review of available literature and related studies. The study instrument consists of two parts. The first part includes participants' demographic characteristics of (age, gender, level of education, etc. ). The second part is related to Physical Mobility Handicap -related (Independence Levels) Reliability of the questionnaire is determined through: pilot study while the content validity of the questionnaire was determined through a panel of experts in the field; and collected data from March 1st to April 15th 2015. The analysis of the data was used descriptive statistics (frequencies, percentages), inferential statistical analysis (correlation coefficient and chi- square test). Results: The results indicate shows that most of the study subjects are within 15-16 years old (34.7%), males (50.8%), show that the majority of the study sample are have 1-3 number brothers and sister (59.3%), continue their study (55.9%), their education affected by handicap (78.8%), and they experience a hobbies (76.3%), shows that the percentage of mobility handicapped children cause (69%) was birth, (29%) Accident, (2%) Pathologic cause and Independence Levels responses (57%) of the study sample responses have a fair, while (24%) of children responses have a poor and (19%) good responses. there is a non-significant relationship between the study sample child age, gender and their independence levels and there is a significant relationship between the study sample their independence levels with their child educational Stage, number of brothers and sisters, and hobbies. Conclusion: The study concluded that the disability affects the independence levels in children Recommendations: The study recommended to give more care of handicapped children and to provide financial and moral support to caregivers by the State.

Family burden and quality of life of mothers of children and adolescents with mental retardation or borderline mental capacity

IntroductionStudies have found that the cognitive function levels of intellectually challenged children add a burden to the family and affect quality of life.ObjectivesThe purpose of this study was to determine the family burden felt by mothers of children, ages 6–16, whose mental capacity evaluation indicates an IQ of 35–79 to explore the mother's quality of life and discover the factors that yield an impact in this context.AimsThe main objective of this study therefore was to ascertain the family burden and quality of life experienced by the parents of children with mentally retarded or borderline mental capacity.MethodsThe WISC-R test was used in the research to determine the intellectual capacity of children, 6–16 years of age. The sample comprised 131 children and adolescents between the ages 6–16 with IQs in the interval of 35–79 and their mothers. The parents accompanying their children were assessed using the Family Burden Assessment Scale, the World Health Organization Quality of Life instrument and a sociodemographic questionnaire that was filled out during face-to-face interviews.ResultsThe quality of life of the mothers was found to be average. At the same time, as the IQ level of the children went up, the less the mothers felt they were under a family burden. It was seen that the mothers experienced the most difficulty in the domains of “perception of inadequacy” and “emotional burden.”ConclusionMothers with intellectually disabled children need psychosocial support. Providing all members of the family with counseling services to help them cope with the issues and responsibilities involved in the care of disabled children may make a significant difference in quality of life.Disclosure of interestThe author has not supplied his/her declaration of competing interest.

Étude des notifications à la Maison départementale des personnes handicapées chez les enfants placés à l’Aide sociale à l’enfance dans les Bouches-du-Rhône

By the end of 2011, 275,000 children in France were included in the Aide sociale à l'enfance (ASE, Child Welfare System). Half of these children were entrusted to public care. There is limited data on these children. The MDPH (Maison départementale des personnes handicapées) is an administrative body assisting in the care of disabled children, through material, financial, and human means. Analyzing MDPH medical records can provide medical information about these children. The aim of this study was to describe the characteristics of children left to the ASE with a record at MDPH in Bouches-du-Rhône. We extracted administrative data from two registers, the ASE register and the MDPH register. The MDPH medical files of each patient were analyzed and their medical information was coded: gestational age, deficiencies, and pathologies. In Bouches-du-Rhône, 2965 children were entrusted, 506 (17%) of whom were known by the MDPH: 30.6% of the entrusted children known by MDPH were taken into foster care and 48% were in residential group homes. Half of the MDPH notifications concerned a referral to a school or medico-social institution. By analyzing the medical data, we observed an average of 2.1 deficiencies per child. The types of deficiencies were distributed as follows: 35.9% were psychological deficiencies, 26.4% were speech deficiencies, and 21.6% were intellectual cognitive deficiencies. The most common pathology was mental and behavioral disorder (71% of diagnoses). The MDPH notification rate in children entrusted to public care was seven times higher than in the general population. Overall, explaining the relation between child abuse and neglect and disability is difficult. The psychopathology of these children is complex. These results show the importance of specific medical monitoring for these children.

‘IF ONE MEMBER OF THE FAMILY IS DISABLED THE FAMILY AS A WHOLE IS DISABLED’: THALIDOMIDE CHILDREN AND THE EMERGENCE OF THE FAMILY CARER IN BRITAIN, C.1957–1978

In the early 1960s children were born with birth defects as a result of expectant mothers taking prescription drug thalidomide during pregnancy. This article examines the activities of the Society for the Aid of Thalidomide Children the media scrutiny of the thalidomide scandal, and the dedicated House of Commons debate of 1972 to provide new insight into the relationship between the family, normality, and disability in 1960s and 1970s Britain. The thalidomide tragedy was pivotal in the establishment of the Family Fund in 1973, which was, significantly, made available to the families of all severely congenitally-handicapped children. I argue that the thalidomide case was instrumental in raising awareness of the role of families in the care of disabled children. Thalidomide triggered debates on, research of, and interest in families with handicapped children before the role of the family carer had itself been formally acknowledged.

Palliative care for disabled children and young people

Abstract Palliative care for disabled children and young people embraces holistic, high quality, evidence-based care, recognition and timely management of symptoms, recognition and discussion with the multidisciplinary team and with families about the possibility of dying and care and support through life, death and bereavement. Systems are being piloted across the UK to collect data about who and where children and young people with palliative care needs are and to ensure robust funding mechanisms are established for provision of care in an equitable way. Decision-making within a legal and ethical framework is paramount in this area of clinical practice, along with clinical networking within care pathways to ensure care delivered is of the highest standard.

Informal eldercare and care for disabled children in the Nordic countries: prevalence and relation to employment

In an international comparison, the Nordic countries are generous care spenders and a relatively large proportion of the populations receive formal care services. However, in respect of service provision, the Nordic countries are less similar today than they were some decades ago. Using survey data from three Nordic countries, Denmark, Norway, and Sweden, we first document the differences in informal care between the countries, and then we assess its impact on the relationship between informal caregiving and formal employment. We find that informal care is most common in Denmark and least common in Sweden. However, those who provide care in Sweden provide care more often than people in both Norway and Denmark. There is a negative correlation between being a caregiver and the probability of being employed in Norway and Denmark, but not in Sweden. With specific regard to parental care, there is no general relation between the provision of parental care and employment, but those providing substantial care are clearly less likely to work than others. Caring for a disabled child is less common than caring for a parent, but the negative effects on employment are even stronger.

Informal eldercare and care for disabled children in the Nordic countries: prevalence and relation to employment

In an international comparison, the Nordic countries are generous care spenders and a relatively large proportion of the populations receive formal care services. However, in respect of service provision, the Nordic countries are less similar today than they were some decades ago. Using survey data from three Nordic countries, Denmark, Norway, and Sweden, we first document the differences in informal care between the countries, and then we assess its impact on the relationship between informal caregiving and formal employment. We find that informal care is most common in Denmark and least common in Sweden. However, those who provide care in Sweden provide care more often than people in both Norway and Denmark. There is a negative correlation between being a caregiver and the probability of being employed in Norway and Denmark, but not in Sweden. With specific regard to parental care, there is no general relation between the provision of parental care and employment, but those providing substantial care are clearly less likely to work than others. Caring for a disabled child is less common than caring for a parent, but the negative effects on employment are even stronger.

Anne Borsay and Pamela Dale (eds), Disabled Children: Contested Caring, 1850-1979

Anne Borsay and Pamela Dale have produced an extensive collection of papers that explore the experiences of disabled children from a broad range of perspectives. Covering a period of 130 years, from 1850 onwards, the twelve chapters focus on a variety of disabilities and offer examples of care and welfare provision not only from the UK, but also Sweden, Spain and Australia. This collection, based on papers presented at a conference organised by the editors in 2007, does not attempt to follow a thematic approach to childhood disability; the range of disabilities included would make that a difficult, if not impossible, task. Instead the chapters are presented in chronological order, allowing the reader to follow the progression of the development of service provision, attitudes towards the care of disabled children and the nature of the lived experience of this group who are often neglected in disability discourses. The book sets out to identify the ways in which children's lives have been influenced by both their disability and the responses of caregivers towards the children. Despite the apparent lack of thematic arrangements, several themes emerge that cross the time span of the book and which can be found in both the British examples and beyond. One of the most important of these is the status of the home and the family as contested places for the provision of care and support for disabled children. Time and again, an attitude of ‘the state knows best’ comes through from the various source materials and the official preference for institutional care, rather than care provided by the family and in the home, is evident. For example, Mike Mantin shows how letters from the Cambrian Institution's Principal imposed a certain set of standards, values and behaviours on the parents of deaf children during home visits, effectively extending the school's role into the home and treating family members almost as surrogate pupils themselves, under the direct guidance of their child's teachers. Sue Wheatcroft, focusing on the Second World War period, shows that this attitude was still evident through the Child Guidance Movement, which emphasised the primacy of residential care for disabled children. Staffan Förhammar and Marie Nelson show that this was also true of the way Swedish medical authorities operated through the establishment of an isolation hospital in a fashionable spa town. By providing care in this way, the concept of ‘home’ often came to mean something significantly different for disabled children to that of the family home, with both beneficial and detrimental consequences for all parties.

Newborn Screening Program for Oman: The Time is Here and Now

Newborn Screening Program for Oman: The Time is Here and Now

Survey shows shortcomings in the care of disabled children

Survey shows shortcomings in the care of disabled children

Survey shows shortcomings in the care of disabled children

Survey shows shortcomings in the care of disabled children

Supplemental Security Income for the Second Decade

AbstractSupplemental Security Income (SSI) is an odd combination of income support for families with disabled children, disabled working‐age adults, and elderly persons with inadequate retirement incomes. Less than three percent of Americans receive SSI payments. The program faces challenges on all three fronts: Payments for children with disabilities bear little relationship to family need or costs associated with caring for disabled children. State efforts to promote transition of children and adults from general assistance and TANF to SSI appear driven by fiscal considerations with little attention to health, functioning, and social integration objectives. Measuring the impact of poverty among the elderly is hampered by severe underreporting of benefits in survey data, most notably the Current Population Survey. This paper argues that SSI serves important purposes, but that all three target populations, especially children, might be served best by gradual decoupling or at least improved integration with other programs targeted to each of the three groups.

Attitudes of nurse professionals and nursing students towards children with disabilities. Do nurses really overcome children's physical and mental handicaps?

Many health professionals and nurses, who are involved in the care of disabled children, do not exhibit the essential sensitivity and appropriate attitudes towards them, resulting in a poor quality of nursing care. The objective of this study was to investigate the attitudes of nurse professionals (paediatric nurses) and nursing students towards disabled children. The present study is a comparative study. The sample consisted of 228 first-year nursing students, 90 post-diploma nurses attending MSc degree course and 123 nurse professionals who are employed in paediatric hospitals. After obtaining permission from the hospitals and the educational settings and informing about the subjects of the study, data were collected using the paediatric Attitude Towards Disabled Person Scale (ATDP). Overall nurses' attitudes appeared to be poor (mean ATDP score 61.7 +/- 14.2). However, the post-diploma nurses had significantly higher ATDP scores than first-year students and paediatric nurses (P < 0.001). In addition, first-year students had significantly higher scores than paediatric nurses (P = 0.047). Across the sample, females hold significantly more positive attitudes than males (F = 9.5, P = 0.002), while age did not have any significant effect. Carefully designed curricula can influence the attitudes of nursing students towards children with disabilities. Special courses for treating disabled children should be integrated to the basic nursing studies. Moreover, continuing hospital education can change paediatric nurses' attitudes towards children with disabilities.