Children with a handicap and their families

SUMMARY The mothers' perceptions of the emotional and social stresses experienced by families who have children suffering from spina bifida, cerebral palsy or a limb deficiency, and the mothers' suggestions for easing situations that were causing them concern are recorded in this study. One hundred and sixteen mothers were interviewed. The children were between the ages of five and ten years at the time of the interview and were patients at the Royal Children's Hospital, Melbourne. The study investigates the problems of attending a public hospital and draws attention to the difficulties in communication between the hospital staff and parents. It emphasizes the physical demands made on the parents, particularly the mothers, in caring for a handicapped child and indicates the lack of supporting services in the home, such as home help and child minding services. The effect on the parental relationship and on brothers and sisters is studied and attention is drawn to the need for ongoing social work support to the parents, and that brothers and sisters should be included in the counselling services. Some of the difficulties encountered by the child with a handicap are recorded, in particular the problems of socialization and leisure time occupation. The parents' difficulties in rearing a handicapped child are discussed including their problem in talking to the child about his handicap. The mothers' comments about community attitudes to their child, and ways of alleviating these are also mentioned.     

Hope, disclosure, and control in the neonatal intensive care unit

The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (NICU) generally face several challenges. Included in these challenges is the possibility of having access to information and a certain level of disclosure about the diagnosis, treatment options, and prognosis for their newborn. A related challenge is the ability to have some control over the care of their newborn. In this article, I (first author) share my own experiences of having a child admitted to an NICU, and I discuss how a lack of disclosure affected the decision making and involvement I had in my child's care and hindered my ability to find hope. A loss of hope can both contribute to a sense of powerlessness and exacerbate the negative aspects of these NICU experiences. I argue that when health care providers offer parents the disclosure they want and need, as well as a certain amount of control over the care of their child while in the NICU, the ability of parents to find hope will be increased, and they will be better able to cope successfully in the NICU environment.     

Parent involvement and the development of children with special needs

The involvement of parents in the education and training of handicapped children and young people is a relatively recent phenomenon. Only gradually have professionals in the educational, medical and social work spheres accepted the undoubted potential that parents have for positive involvement in activities designed to optimise a child's development, and the expertise, based on intimate knowledge, which they can bring to bear. This paper examines the ways in which parents may be helped and supported in the task of providing stimulating environments for handicapped young children and in the development of their skills as therapists and educators. Parents have a special relationship with the child and are well placed to help him. They require support however in coming to terms with the handicap, in appreciating the implications for the child and for the family in the long term, and in developing appropriate skills. Help for the handicapped child must therefore be considered in the light of help for the family.     

The Exeter program of home visits by "developmental therapists". Suggestions on the procedure to follow in the presence of severe handicap in a child of less than 3 years]

The principal idea expressed in this paper is that there is a period of time between the birth of a child with a severe handicap and the realization of the parents that the child may need their specific individual attention to his general development because of that handicap: that this coincides with the period of time usually taken by doctors for diagnosis of all the aspects contributing to the developmental delay; that these periods are both likely to be two to three years. Intervention by a competent developmental therapist working weekly in the home is of specific aid to the infant, to the parents and to the doctor during this period.     

Why do we need a diagnosis? A qualitative study of parents’ experiences,coping and needs,when the newborn child is severely disabled

BACKGROUND: Communication with parents who are realizing their child is severely disabled is a difficult task for professionals. Parents are experiencing great emotional stress during the diagnostic process and dissatisfaction with disclosure is widespread. The aim of this study was to investigate parents' reactions when realizing their child's disability, the impact of the diagnosis and parents' ways of coping. METHODS: This was a qualitative, longitudinal study, using in-depth interviews with 16 parents of a physically and mentally disabled child who had recently been diagnosed as such. Children's age at inclusion ranged from 1 to 27 months. Half of the children had an unknown diagnosis. Data were analysed using the Grounded Theory method. RESULTS: were validated and approved by the interviewed parents. RESULTS: The certainty of the diagnosis was central for parents' experiences. First, the emotional reaction of the parents is highly influenced by the diagnostic process. Second, parents needed possibilities for taking action, and third they found difficulty in coping with an uncertain future. These three themes all related to the meaning that parents ascribed to the stating of a diagnosis. Parents' needs in relation to communication were identified as equality in co-operation with doctors, an empathic professional approach, and the child being seen with possibilities despite his or her disabilities. CONCLUSIONS: Parents' process of realization was related to the diagnostic process, and information and communication should be individualized accordingly. Parents wanted to co-operate and they needed possibilities for active coping with their situation.     

Parent involvement and the development of children with special needs

The involvement of parents in the education and training of handicapped children and young people is a relatively recent phenomenon. Only gradually have professionals in the educational, medical and social work spheres accepted the undoubted potential that parents have for positive involvement in activities designed to optimise a child's development, and the expertise, based on intimate knowledge, which they can bring to bear. This paper examines the ways in which parents may be helped and supported in the task of providing stimulating environments for handicapped young children and in the development of their skills as therapists and educators. Parents have a special relationship with the child and are well placed to help him. They require support however in coming to terms with the handicap, in appreciating the implications for the child and for the family in the long term, and in developing appropriate skills. Help for the handicapped child must therefore be considered in the light of help for the family.

     

Physicians' attention to parents' concerns about the psychosocial functioning of their children.

BACKGROUND: Epidemiological data indicate that approximately 20% of children have psychosocial problems, yet less than 2% of children are seen by mental health specialists each year. Primary care physicians tend to identify children with psychosocial problems when parents discuss concerns with them. OBJECTIVE: To examine factors related to physicians' attention to parental disclosures. DESIGN: Parents reported the psychosocial functioning of themselves and their children. Physicians reported the psychosocial functioning of 75 children and whether the parent disclosed psychosocial concerns to them. SETTING: Ambulatory care clinic of a community-based, university-affiliated, residency training program. PARTICIPANTS: Seventy-five parents of children aged 2 to 16 years who presented for routine primary care, and 26 physicians. MAIN OUTCOME MEASURES: Beck Depression Inventory (parental distress), Eyberg Child Behavior Inventory (child behavior problems), physician and parent report. RESULTS: Physicians identified 50.0% of children with clinically significant behavior problems. Logistic regression indicated that parental disclosure was the only significant predictor of physician identification (P < .002). When children had clinically significant behavior problems, physicians were more likely to report disclosures by parents (45.0% vs 5.7% for parents of children with and without behavior problems, respectively). Physicians were more likely to report parental disclosure when parents reported personal psychosocial distress (38.9% for distressed vs 5.7% nondistressed parents). CONCLUSIONS: Parental disclosure of concerns was a better predictor of physician identification of child psychosocial problems than was the presence of child behavior problems. Physicians responded more frequently to the disclosures of potential problems by parents of children with clinically significant psychosocial problems. They also attended more frequently to disclosures about behavior problems when the parent was also experiencing psychosocial distress.     

The information and support needs of Iranian parents of children with autism spectrum disorders

Internationally, increasing numbers of children are being diagnosed with an autism spectrum disorder (ASD), but there is a dearth of studies outside more affluent countries as to parents’ understanding of this condition and the support they receive. Forty-three parents were recruited from schools and clinics in Tehran and interviewed individually using a structured interview schedule. Thematic content analyses identified a lack of parental understanding about autism and its causes, along with parents’ reactions to the diagnostic process and the dearth of information available to them. The majority of parents were dissatisfied with the professional assistance provided for their children and many lacked informal support from their families. The provision of accurate information through informal parent-to-parent support seems to be the most feasible means of assisting Iranian families to adjust to having a child with ASD within the family.     

'What if they ask how I got it?' Dilemmas of disclosing parental HIV status and testing children for HIV in Uganda

BACKGROUND: Limited research has been conducted outside Western settings on how HIV-positive parents decide to test and disclose their own HIV status to children. We conducted a qualitative study in 2001 and 2005 to assess parent attitudes and current counselling policy and practice regarding child testing and parental disclosure in Uganda prior to the roll-out of antiretroviral therapy. METHODS: Parent perspectives were obtained through extended in-depth interviews with 10 HIV-positive parents recruited from The AIDS Support Organization (TASO), Entebbe branch. Counselling policy and practice were explored through key informant interviews with directors and two counsellors from each of five Ugandan counselling institutions with national or regional coverage. RESULTS: Respondents had 51 children ranging from 4 to 36 years with a median age of 13. Five of 10 parents had disclosed their status to their children, usually to all, and four of these had tested one child for HIV. All those who tested any child had also disclosed their status to some or all of their children. Parents regularly worried that their children may be infected, but all preferred to wait for emergence of symptoms before considering HIV tests, citing fear of children's emotional reaction and lack of perceived benefits from knowing status. Counselling policy directors confirmed the absence of policy and training guidelines on the subject of parent-child disclosure. Counsellors reported improvising and giving inconsistent advice on this common concern of clients. CONCLUSIONS: Concerns over disclosure to children of parent's HIV status and testing children for HIV represent a major psychological burden for HIV-positive parents. Further research is needed, but current counselling practice could be improved now by adapting lessons learned from existing research.     

Resemblance talk: a challenge for parents whose children were conceived with donor gametes in the US

The normative folk model of kinship in the US continues to attach great significance to "blood" relationships. These implicit genetic links are commonly reinforced through observations about a child's physical similarity to parents or other family members, i.e., "resemblance talk". This paper explores the meanings of resemblance and resemblance talk for parents drawing on semi-structured interviews with 148 heterosexual couples who had used a donor gamete to conceive at least one living child. For parents of children conceived with donor eggs or sperm, resemblance talk represents the ongoing threat that comments about physical appearance could stigmatize their children or cast doubt on the legitimacy of their family structure. Furthermore, these concerns were present regardless of whether a sperm or egg donor had been used and irrespective of the parents' disclosure decision, i.e., whether or not their children were told of the true nature of their conception. Parents found that resemblance talk was not only ubiquitous, unavoidable, and uncontrollable, but it also had the capacity to exacerbate ongoing uncertainties about their disclosure decision (or lack of one), worries about establishing their child within the extended family, and apprehension that insensitive remarks could make the child feel different from other family members. As a result, many couples spent considerable energy developing a variety of strategies for managing resemblance talk that included genetic plausibility arguments, "passing", and strategic silence. We conclude that parents of children conceived with a donor address and contest normative definitions of kinship and family, including stigma and otherness, resist challenges to the family they have created, and, to some extent, rework their allegiance to cultural norms to suit their own needs. Because resemblance talk and disclosure decisions are frequently tied to each other, it is likely that if the public were more accepting of difference, parents would likely feel more comfortable with disclosure. Yet resemblance talk may make it more difficult for parents to disclose, not easier, as long as attitudes about the implicit primacy of genetic connectedness prevail.     

22q11 deletion syndrome – the meaning of a diagnosis. A qualitative study on parental perspectives

Background The 22q11 deletion syndrome (22q11DS) is one of the most common multiple anomaly syndromes, with an incidence of approximately one per 4000 newborns. Although a patient may have several not too severe symptoms, the cumulative effect may be substantial disability. The aim of this study was to explore and describe parents' experiences of the diagnostic process and of being parents of a child with 22q11DS. Methods Open, tape‐recorded interviews were carried out with 12 parents. The interviews were analysed in accordance with classical grounded theory. Results The analysis show that parents describe the disclosure of their child's medical diagnosis as two‐sided, ambivalence between relief and sorrow, and the differences between these two aspects were related to the age of the child at time of diagnosis as well as to the problems and symptoms that had led to the diagnosis. Different strategies for handling this ambivalence are presented in the categories. Conclusions Our conclusions are that information must be individually tailored, and there is no standard format for how to describe the syndrome to the parents. After disclosure, scheduled appointments for follow‐up on diagnosis‐related information is essential.     

Cost-benefit analysis of the early detection program for metabolic diseases in the Autonomous Basque Community

The efficiency of an early screening and treatment Programme for two Metabolic disorders, phenylketonuria and congenital hypothyroidism running since November 1982 in the Basque Country, is analysed. The cost-benefit analysis technique is used. The social costs of screening and treatment are compared with the social benefits for the prevention of mental handicap (1984-1985). Benefit-cost ratios and the net present value shows the social efficiency of the programme except when high discount rates have been used for discounting future costs and benefits. That conclusion is consistent with the results of other cost-benefit studies. In terms of cost-effectiveness the cost per child with mental handicap prevented was estimated on 3,300.000 ptas. That could be seen as the lowest social value for the prevention of a child with mental handicap.     

HIV-negative children’s experiences and opinions towards parental HIV disclosure: a qualitative study in China

In HIV/AIDS research, few studies to date have evaluated ways to improve parental HIV disclosure practices using feedback from HIV-negative children who have recently experienced this event. We conducted semi-structured in-depth interviews with 20 children (aged 6–15) who were partially to fully aware of their parents’ HIV status in rural Guangxi, China. Of the 20 children, eight children who were of older age (11.38 years in average) endorsed parental HIV disclosure, five discouraged it and seven expressed uncertainty. Children’s different experiences and attitudes towards disclosure were seen to be associated with their family dynamics (especially the parent–child relationship), social support and care, experiences of stigma and discrimination, psychosocial suffering, comprehension of the disease and the children’s age. Our study contributes to building a child-centered comprehensive understanding for Chinese parental HIV disclosure. It is imperative that counselors and community advocates assess and help parents achieve optimal readiness preceding disclosure of their illness to their HIV-negative children.     

PRENTAL RESPONSES TO THER DEVELOPMENTALLY DELAYED CHILDREN AND THE SOUTH GLAMORGAN HOME ADVISORY SERVICE

Summary This study was undertaken to investigate how parents who have a child with some degree of handicap describe their child's behaviour and their own feelings and adjustment to having such a child. Their response was compared with that of parents of age-matched children without any known development difficulties. The parents and children were grouped according to the manifested handicap of the child (Down's syndrome, developmental quotient (DQ) greater than 65, DQ less than 65 with/without limb dysfunction and normal controls). The children's ages ranged from 4 to 126 months and they all had received the South Glamorgan Home Advisory Service (HAS) at some time. Sixty-one families completed attitude and behaviour rating scales and parents were asked to express their preferences for prescribed services. The attitude and rating scales were also completed by twenty-five control families with normal children.
A consistent trend was revealed towards increasingly favourable attitudes and feelings from past to future, and the DQ less than 65, with/without limb dysfunction, group was found to require further investigation in terms of provision of appropriate services. A distinct preference was shown for the South Glamorgan Home Advisory Service.     

Parents' stories of sensitive and insensitive care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child

This study explored parents' experiences of care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child. RESEARCH METHODS: Qualitative exploration using in depth interviews with a purposive sample of 30 families whose child was diagnosed with a life-limiting condition. RESULTS: Parents' stories centred upon their need to have their concerns and needs as parents validated by paediatricians. Demonstrable qualitative differences were shown to exist between the sensitive and insensitive clinical practices of paediatricians. Parents' stories identify the need for clinical practice to be based upon a humanistic approach to care. These also identify how sensitive paediatricians achieved this ideal through meeting the 'double obligation' of combining technical skills with an understanding of their needs as parents.     

Parents'' report of family life with a developmentally delayed child

This study was undertaken to investigate how parents who have a child with some degree of handicap perceive the effect of the child on family life. Also, a measure of parental health was taken. The parents' response was compared with that of parents of age-matched children without any known developmental difficulties. The parents and children were grouped according to the manifested handicap of the child [Down's syndrome, developmental quotient (DQ) greater than 65, DQ less than 65 with/without limb dysfunction and normal controls]. The children's ages ranged from 4 to 126 months and they all had received the South Galmorgan Home Advisory Service (HAS) at some time. Sixty-one families completed a questionnaire concerning family life and activities and Rutter's Malaise Inventory (Rutter et al. 1971). Thirty-one control families also completed the questionnaire and Malaise Inventory. The findings showed very little difference between the control group and handicapped groups and suggested that the presence of a delayed child in the family unit does not appear to change the family routine to any large extent. Parents of handicapped children were not found to suffer from significantly greater ill health when compared with the parents of normal children. The implication of the results is that provision should be made available for both fathers and mothers to play an equal part in the support facilities and guidance offered.     

Managing medical advice seeking in calls to Child Health Line

Child Health Line is a 24-hour Australian helpline that offers information and support for parents and families on child development and parenting. The helpline guidelines suggest that nurses should not offer medical advice; they do, however, regularly receive calls seeking such advice. This paper examines how the service guidelines are talked into being through the nurses' management of callers' requests for medical advice and information, and shows how nurses orient to the boundaries of their professional role and institutionally regulated authority. Three ways in which the child health nurses manage medical advice and information seeking are discussed: using membership as a nurse to establish boundaries of expertise, privileging parental authority regarding decision making about seeking treatment for their child, and respecifying a 'medical' problem as a child development issue. The paper contributes to research on medical authority, and nurse authority in particular, by demonstrating the impact of institutional roles and guidelines on displays of knowledge and expertise. More generally, it contributes to an understanding of the interactional enactment and consequences of service guidelines for telehealth practice, with implications for training, policy and service delivery.