Informal support for the carers of disabled children

This article draws on data from a nationally representative sample of disabled children to investigate the support which careers receive from spouses, relatives, friends, neighbours and voluntary organizations. The results confirm the findings of previous studies that, within families, mothers bear the major burden both of child care and housework. However, the results indicate that families with disabled children generally do not receive as much support from relatives, friends and neighbours as some previous studies of children with particular disorders have suggested, and that membership of voluntary organizations is very low.     

Acknowledging the extra care parents give their disabled children

Around 150,000 families in the UK care for a severely disabled child under the age of 16. Many of these families receive assistance from the Family Fund Trust, which provides grants and information relating to the care of a severely disabled child. The aim of this study was to identify patterns of extra care needs among severely disabled children known to the Trust. Extra care needs are requirements for care not experienced by similarly aged non-disabled children. The research comprised analysis of 40,000 records from the Trust database and qualitative exploration of the extra care needs of disabled children with parents and Trust staff. Although all children require parenting, the care parents give disabled children generally exceeds that given to a non-disabled child. Quantitative analysis showed that the majority of children in the sample required extra assistance or supervision with multiple areas of daily life. With each of five activities (washing, dressing, meal times, during the night and keeping occupied), >70% of children needed extra help and, on average, each child needed extra help or supervision in six areas of daily life. Cluster analysis indicated distinctive combinations of extra care needs. Qualitative material indicated variety in extra care tasks undertaken (physical help, supervision, guidance) and causal factors (physical limitations, cognitive difficulties, behavioural problems). The findings confirm that severely disabled children have considerable extra care needs in many areas of daily life. Parents want professionals to recognize and offer explicit acknowledgement of the extra care they give their disabled children.     

The nutritional status of disabled children in Nigeria: a cross-sectional survey

OBJECTIVE: To compare the nutritional status of disabled children in Nigeria with their non-disabled siblings and neighbours. A second aim was to investigate anthropometric techniques appropriate for disabled children in this situation. DESIGN: A cross-sectional survey. SETTING: Nasarawa and Plateau States and the Federal Capital Territory in Central Nigeria. SUBJECTS: 311 children under 10 years of age were studied: 112 with various disabilities, 87 siblings and 112 neighbours. Methods: Selected anthropometric measurements, (height, weight, mid-upper arm circumference (MUAC), demispan and halfspan), and blood haemoglobin levels were assessed by trained personnel. All measurements of disabled subjects were compared to the non-disabled controls. RESULTS: The disabled subjects had mean height for age (ht/age) and weight for age (wt/age) significantly lower than the control group (P<0.05). These differences were due largely to the very low Z scores in children with neurological impairments, (ht/age= 3.07 (s.d.=1.6); wt/age= 2.0 (s.d.=1.2)). Measurement difficulties contributed to low height values in disabled children and halfspan was found to be a useful proxy for height in these children. MUAC results were higher for the children with disabilities due to polio than for controls. The mean haemoglobin levels were slightly but significantly higher (P<0.05) in the disabled and sibling groups compared to the neighbourhood group. CONCLUSION: Disabled children with neurological impairments and consequent feeding difficulties are nutritionally at risk, but others are no worse off than their non-disabled peers in this area. Halfspans may serve as a useful proxy indicator for estimating height in some children with physical impairments. SPONSORSHIP: The study was funded by a TEAR fund grant to JT for her MSc studies.     

Relationship between neighbourhood social participation and depression among older adults: A longitudinal study in China

Previous research has found a negative linkage between neighbourhood social participation and depressive symptoms in Western countries, but the cross‐sectional design of these studies limits the ability to infer causality. Little attention has been paid to socio‐psychological pathways linking neighbourhood social participation to depressive symptoms among older adults in China. This study aimed to examine the impact of neighbourhood social participation on depressive symptoms among older adults in China. It also further explored the mediating roles of physical activity, social contact among neighbours, and contact with own children in the relationship between social participation and depressive symptoms. Data obtained through three waves (2011, 2013, and 2015) of the China Health and Retirement Longitudinal Study were used. The sample consisted of 10,105 individuals aged 60 and above and 24,623 person‐year records captured during these three waves. Depressive symptoms were assessed using the Center for Epidemiology Studies of Depression scale. Results showed that respondents' depression decreased with an increasing level of neighbourhood social participation, more time spent on physical activities, and a higher frequency of contact with neighbours and with own children. These factors were found to partly mediate the relationship between neighbourhood social participation and depression. The negative relationships between social contact and depression and contact with own children and depression were both strengthened by neighbourhood social participation. In conclusion, physical activity, social contact among neighbours and contact with own children are mechanisms through which neighbourhood social participation lowers the risk of depression among older adults in China.     

Striving for an ordinary life: making disabled children a new priority

An increasing number of disabled infants are surviving into childhood and adulthood, presenting a challenge to front-line health, education and social care services. Families with disabled children report that it is often a struggle to lead ordinary lives, and surveys show that many have experienced poor services. Every Disabled Child Matters (EDCM), launched in 2006, is a UK campaign to achieve rights and justice for every disabled child. It is a consortium campaign with four lead members: Contact a Family, the Council for Disabled Children, Mencap and the Special Educational Consortium, and represents the 770,000 disabled children and young people in the UK. With 28,000 supporters and more than 300 Members of Parliament signed up to the campaign, EDCM has succeeded in influencing Government policy to make children with disabilities a political priority. The Government's Aiming High for Disabled Children programme will provide over pounds 430 million to improve disabled children's services over the next three years. For the first time there is a national target on services for disabled children and a new legal duty on local authorities to provide these. However, more still needs to be done to help families with disabled children to lead ordinary lives and local health, education and social care services must play a greater role in making this happen.     

Social determinants of playing outdoors in the neighbourhood: family characteristics,trust in neighbours and daily outdoor play in early childhood

ObjectivesThe goal of this study was to investigate socio-demographic and contextual factors in relation to the frequency of outdoor play in the neighbourhood in early childhood, drawing from a large sample of children in British Columbia, Canada.MethodsParents/caregivers of 2280 4- to 5-year-old children completed the Childhood Experiences Questionnaire (CHEQ) in 2018. Binary logistic regression analyses were conducted to predict the likelihood of children participating in everyday outdoor play in their neighbourhood based on the child’s gender, family ethnicity (i.e., European origin vs. other), household income (i.e., less vs. equal/more than CDN$75,000), population centre (i.e., urban vs. rural) and parent’s trust in neighbours (i.e., trusting vs. not trusting neighbours to look out for children).ResultsThirty-five percent of children in this study met recommendations of playing outdoors every day. Children whose parents perceived strong trust in neighbours were twice as likely to play outdoors in their neighbourhood every day, when compared with those whose parents perceived low trust in neighbours. Additionally, children from families with higher incomes (equal/more than $75,000) were significantly more likely to play outdoors daily than those with lower incomes, but only if they resided in rural areas. Last, children with European family backgrounds were 64% more likely to play outdoors every day compared with those with non-European backgrounds.ConclusionFindings from this study contribute to an emerging body of work examining socio-economic, demographic and contextual factors associated with children meeting the recommendations for everyday outdoor play in their neighbourhood.     

Disabled Children and Child Protection: Learning From Literature Through a Non-Tragedy Lens

ABSTRACT

Disabled children experience unique vulnerabilities in the context of child protection and welfare services. Current research alludes to strong concerns about social inequality, professional responses, judgement, knowledge and awareness limitations, and practical constraints. This article presents a focused commentary on the literature pertaining to child protection and disabled children. It does so through the lens of a broad affirmative non-tragedy approach. Within this, consideration is given to the distinct experience of disabled children within the broader child protection and welfare system, including experiences of being in care and of leaving care. The matter of children’s rights is explicitly addressed with a particular focus on the right for children to have their voices heard. Core themes are drawn from the body of material, which are then used to inform a discussion on the key points of learning for practitioners and policy makers moving forward. The article concludes with the recognition that, to date the matter of supporting disabled children and their families within the child protection and welfare context remains both critical and broadly neglected. It proposes that the affirmative non-tragedy model offers an effective theoretical lens to progress an assertive children’s rights approach within the child protection and welfare context.     

Disabled children and their families in Ukraine: health and mental health issues for families caring for their disabled child at home

In the Eastern European countries included in the communist system of the USSR, parents of disabled children were encouraged to commit their disabled child to institutional care. There were strict legal regulations excluding them from schools. Medical assessments were used for care decisions. Nevertheless many parents decided to care for their disabled child at home within the family. Ukraine became an independent country in 1991, when communism was replaced by liberal democracy within a free market system. Western solutions have been sought for many social problems existing, but 'hidden,' under the old regime. For more of the parents of disabled children, this has meant embracing ideas of caring for their disabled children in the community, and providing for their social, educational, and medical needs, which have previously been denied. The issue of disability is a serious one for Ukraine where the nuclear disaster at Chernobyl in 1986 caused extensive radiation poisoning. This almost certainly led to an increase in the number of disabled children being born and an increase in the incidence of various forms of cancer. This paper is based on a series of observation visits to some of the many self-help groups established by parents, usually mothers, for their disabled children. It draws attention to the emotional stress experienced both by parents and their disabled children in the process of attempting to come to terms with the disabling conditions, and the denial of the normal rights of childhood resulting from prejudice, poor resources, ignorance, and restrictive legislation. Attempts have been made to identify the possible role and tasks of professional social workers within this context. International comparisons show that many parents and their children do not benefit from the medical model of disability, and that serious consequences include the development of depressive illness among those who find that little help is available from public services.     

Places and health: a qualitative study to explore how older women living alone perceive the social and physical dimensions of their neighbourhoods

There is growing interest in the impact that neighbourhood environment might have on the health of older people. Although the number of older Australian women, particularly those living alone, is projected to increase in coming decades, their experiences of neighbourhood have not been exclusively examined. The aims of this paper are: (1) to explore, from the perspective of these women, the social and physical dimensions of neighbourhoods and (2) to investigate variation in these accounts according to whether women lived in areas of higher or lower socioeconomic status. Twenty women aged between 75 and 93 years, residing in metropolitan Adelaide, South Australia (SA), participated in a series of two in-depth interviews. Women's perceptions of their neighbourhood, and accounts of every-day activities in the community were analysed to determine how both social and physical aspects of neighbourhood might relate to health and wellbeing. Findings suggest that a reciprocal and trusting relationship with neighbours underpinned older women's sense of satisfaction with, and feeling of security within, the neighbourhood. Other factors such as living in close proximity to services and existing social networks were also seen as important. Women's stories demonstrated that they were able to draw on both existing social networks and neighbours to sustain their independence and social connection within the community. Women living in more disadvantaged areas were more conscious of social disconnection in their neighbourhoods, and to the way that traffic noise and pollution detracted from their neighbourhood environment. These findings indicate that, for older women living alone, trusting and reciprocal relationships with neighbours are likely to form an important part of their broader social support network and should be recognised in relation to the process of maintaining the health of older women living in the community.     

'If I had a friend in a wheelchair': children's thoughts on disabilities

The purpose of the present study was to examine what notions there are among ordinary preschool children and schoolchildren about physically handicapped children using wheelchairs. Forty-eight children-16 children of preschool age (half boys, half girls, aged around 6), 16 children in primary school class 2 (half boys, half girls, aged around 8) and 16 children in class 4 (half boys, half girls, aged around 8)-constituted the investigated group. The method used was a combination of drawings produced by the children themselves serving as a projective image, interview questions in connection with the drawings and a self-assessment scale, based on Osgood's semantic differential technique. The results showed that most children had favourable attitudes towards a child in a wheelchair. They were willing to include the disabled child in their games and recreational activities, and they considered that the disabled child would have many friends and a high self-esteem. However, they saw real obstacles for the disabled child both in play situations and in other environmental settings. No tangible differences between the sexes could be found; however, differences by age were present. The results were discussed with regard to earlier research and topics for further research are suggested.     

Influence of inclusive child day-care on nursery school teachers: a questionnaire survey of teachers with experience in inclusive child day-care in K City

The purpose of this survey questionnaire is to investigate the factors influencing how nursery school teachers perceive inclusive child day-care in K City in order to qualify what support we can provide. The questionnaire was sent to nursery school teachers with experience in inclusive child day-care in K City. Three hundred seventeen teachers provided sufficient data for analysis. The results of this survey suggest that teachers perceive inclusive child day-care to lead up to self-development and the pleasure of child-caring. On the other hand, they feel a burden of inclusive child day-care, with teachers in their 40 s feeling a stronger burden than teachers in their 20 s. And teachers with experience in taking care of emotionally disturbed children or teachers with experience in taking care of hearing-impaired children feel a stronger burden than teachers without experience in taking care of them. The results of our survey also suggest that it is necessary for support systems to have special knowledge about disabled children and special ways of caring, and to decrease teachers' burden or dissatisfaction with inclusive child day-care.     

Impact of Child Disability on the Family

Families with disabled children represent a sizeable share of all American households. Living with a disabled child can have profound effects on the entire family, which in turn can affect the health and well-being of the child who is disabled. Much needs to be learned about how children’s health affects their parents, siblings, and other family members and about how family characteristics and resources modify those associations. Numerous programs and organizations provide resources for disabled children and their families, but the system is extremely fragmented and difficult to navigate. This commentary reviews what is known about the effects of child disability on the family, provides an overview of the complex needs of and multitude of resources available to families of disabled children, and concludes with suggested directions for practice, research, and public policy.     

Family friends: New resources for psychosocial care of chronically III children in families

The Family Friends Program matches volunteers over the age of 55 with chronically ill and disabled children aged 12 and under. The older volunteers visit the children at least once a week in the children's homes. They provide psycho‐social support to the children, parents, and other family members. Results of a program evaluation indicate that the volunteers benefit the parents by providing lay counseling, emotional support, and encouragement. Parents report feeling better about themselves and their ability to cope with the stresses of caring for their ill or disabled child. Improvements in the children's behavior and parents’ motivation were observed.     

Out‐of‐school time activity participation profiles of children with physical disabilities: a cluster analysis

Objective To determine out‐of‐school activity participation profiles of school‐aged children with physical disabilities. Methods Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill‐based, self‐improvement). Socio‐demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio‐demographic, self‐concept and social support variables significantly associated with group membership. Results The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood‐focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio‐demographic, child, parent, family and environmental variables. Conclusions The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person–environment approach in understanding the complexity of children's out‐of‐school activity participation.     

The income effect of a disabled child.

Data from the General Household Survey were employed to compare the participation rates, hours worked, earnings, and net incomes of families with and without a disabled child. In families with a disabled child it was found that the spouse was significantly more likely to work the more children there were in the family and that income, and income as a proportion of supplementary benefit entitlement, was lower.     

Storying disability and impairment: retrospective accounts of disabled family life

Much previous British research on disability and its effects on family life has seen impairment as a personal or family tragedy. In this article, the authors describe current English research that is asking families about their experiences of professional health and social care support since the birth of their disabled child. Interviews with the families uncovered a range of themes that challenged the personal tragedy approach. Far from being passive recipients of care, these are ordinary families seeking appropriate information from professionals to support them in their ordinary parenting role. For them, the professionalized care service should be based on negotiated relationships of equality that give respect to parental perspectives on what is right for their child. The authors conclude that these data are useful in describing ongoing barriers to enabling care provision and in offering a positive view of disabled family life.     

The young handicapped child in the community

Despite recent improvements in services for young handicapped children, families still find themselves without adequate information and support. Fundamental to family support is the planning of joint services and the development of the concept of family support. Assessment must be linked to ongoing programmes of management and the setting of long-term goals. Parent/professional collaboration should ensure the more effective use of resources. Parents need encouragement and detailed support and guidance if they are to play a therapeutic role in caring for their child. They also need practical help, both financial and in the form of respite care. Since the family is the major caring agency for a handicapped child, it is essential that expertise and services are pooled in a more flexible and imaginative way. It is therefore essential that children who have a disability should enjoy positive discrimination from health, education and social services to maximise ability and to ensure that they can enjoy a meaningful life within the home and the community.     

The young handicapped child in the community

Despite recent improvements in services for young handicapped children, families still find themselves without adequate information and support. Fundamental to family support is the planning of joint services and the development of the concept of family support. Assessment must be linked to ongoing programmes of management and the setting of long‐term goals. Parent/professional collaboration should ensure the more effective use of resources. Parents need encouragement and detailed support and guidance if they are to play a therapeutic role in caring for their child. They also need practical help, both financial and in the form of respite care. Since the family is the major caring agency for a handicapped child, it is essential that expertise and services are pooled in a more flexible and imaginative way. It is therefore essential that children who have a disability should enjoy positive discrimination from health, education and social services to maximise ability and to ensure that they can enjoy a meaningful life within the home and the community.     

Easing the strain: assessing the impact of a Family Fund grant on mothers caring for a severely disabled child

Summary Measures of perceptions of care-related stress and maternal adjustment were used to assess the extent to which receiving help from the Family Fund eases the stress of caring for a disabled child. A sample of 162 mothers completed a questionnaire before and after receiving help from the Family Fund. The findings suggest that the Family Fund has a significant impact on mothers' perceptions of the stresses of caring for their child, as well as improving mothers' wellbeing and adjustment. However, receiving help from the Family Fund did not improve mothers' perceptions of the severity of the child's disability or the extent to which the disability had adversely affected their personal lives.