Experiences of parents during diagnosis and forward planning for children with Autism Spectrum Disorder.

Background For families of children diagnosed with autism spectrum disorder (ASD) getting a diagnosis is a traumatic experience on which future care and education plans for the child depend. In this paper parental experiences of diagnosis and forward planning for children with ASD are reported. Method This paper is part of a large cross-sectional study conducted in Northern Ireland and the Republic of Ireland that assessed the needs and experiences of parents of children diagnosed with ASD. Questionnaires were designed and completed by 95 parents, reporting on 100 children, as well as 67 multi-disciplinary professionals. Results Findings confirm that diagnostic and planning processes are extremely stressful for parents, that statutory diagnosis takes a long time, that care and education plans do not include full parental participation, and that reviews of plans do not consistently include intervention data. Conclusion Policy and practice implications of these findings are important for future revisions of diagnostic tools and manuals.

Where do parents go for feeding advice in the first year?

Health visiting services have been restructured from being universal for all children to targeting families in need. UK recommendations on infant feeding have also recently changed. With the many sources of information available on feeding babies, it is important to know where parents get feeding advice and which sources they find valuable. In this study, 215 mothers of one-year old infants were interviewed about where they had obtained feeding advice in the first year of their infant’s life and how useful they found this information. The health visitor was the most commonly cited source of information (70%) followed by grandparents (53%), while 10% of mothers relied solely on health visitor advice. This study highlights the importance placed by mothers on health visitors, which may have implications for the service in the midst of the reorganisation of the health visitor’s role.

The silent treatment: Parents’ narratives on sexuality education with their adolescent children

This paper is based on research undertaken in Ireland that sought to understand how parents communicate with their children about sexuality. Forty-three parents were interviewed and data were analysed using analytical induction. Data indicated that while parents tended to pride themselves on the culture of openness to sexuality that prevailed in their home, they often described situations where very little dialogue on the subject actually transpired. However, unlike previous research on the topic that identified parent-related factors (such as ignorance or embarrassment) as the main impediments to parent-young person communication about sex, participants in our study identified the central obstacle to be a reticence on the part of the young person to engage in such dialogue. Participants described various blocking techniques apparently used by the young people, including claims to have full prior knowledge on the issue, physically absenting themselves from the situation, becoming irritated or annoyed, or ridiculing parents' educational efforts. In our analysis, we consider our findings in light of the shifting power of children historically and the new cultural aspiration of maintaining harmonious and democratic relations with one's offspring.

Choice and Welfare Reform: Lone Parents’ Decision Making around Paid Work and Family Life

Welfare-to-work policy in the UK sees ‘choice’ regarding lone parents’ employment decisions increasingly defined in terms of powers of selection between options within active labour market programmes, with constraints on the option of non-market activity progressively tightened. In this paper, we examine the wider choice agenda in public services in relation to lone-parent employment, focusing on the period of welfare reform following the 2007 Freud review of welfare provision. Survey data is used to estimate the extent to which recent policies promoting compulsory job search by youngest dependent child age map onto lone parents' own stated decision-making regarding if and when to enter the labour market. The findings indicate a substantial proportion of lone parents targeted by policy reform currently do not want a job and that their main reported reason is that they are looking after their children. Economically inactive lone mothers also remain more likely to have other chronic employment barriers, which traverse dependent child age categories. Some problems, such as poor health, sickness or disability, are particularly acute among those with older dependent children who are the target of recent activation policy.

The health of children with cerebral palsy and stress in their parents

Aim.  This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents. Background.  Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health. Method.  A cross-sectional survey with home visits using standard questionnaires was administered to parents in 2004–05. A total of 102/199 (51%) children and parents participated. The children were compared with a normative sample. Results.  Children with cerebral palsy had poorer physical health, and 79% of parents reported that their child had moderate to severe pain. Their poorer health, in comparison with the normal sample and measured by the Child Health Questionnaire, was related to feeding problems and seizures, general health perceptions to intellectual and feeding impairment, and family activities with severe motor, intellectual and feeding impairment. Poorer psychological well-being on the hyperactivity domain of the Strengths & Difficulties Questionnaire was related to feeding difficulties, on the prosocial domain to more severe forms of all child impairments, and on the social impairment scale to intellectual impairment. Children with psychological problems had statistically significantly increased odds (OR = 7·2, 95% CIs 2·6–20·3) of having parents with high stress. Conclusion.  Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support.

Living through the death of a child: A qualitative study of bereaved parents’ experiences

Design: Cross-sectional qualitative study.

Data sources: Interviews with purposeful sample of 25 recently bereaved parents.

Methods: Semi-structured in-depth interviews.

Results: Four analytically distinct processes were identified in the responses of parents to the death of a child. These are referred to as ‘piloting’, ‘providing’, ‘protecting’ and ‘preserving’. Regardless of individual circumstances, these processes were integral to all parents’ coping, enabling an active ‘doing’ for their child and family throughout the trajectory of their child's illness and into bereavement.

Conclusions: Facilitating the capacity of parents to ‘do’ is central to coping with the stress and uncertainty of living through the death of a child. The provision of informational, instrumental and emotional support by health care professionals in the context of ‘doing’ is core to quality palliative care.

Keywords: Bereaved parents; Cancer; Dying child; End-of-life; Palliative care; Non-malignant