Community management of intellectual disabilities in Pakistan: a mixed methods study.

BACKGROUND: Pakistan has one of the highest reported rates of childhood intellectual disabilities (ID) in the world. Prevalence estimates vary from 19.1/1000 for serious ID to 65/1000 for mild ID. METHODS: We surveyed carers of persons with ID (n = 100) using quantitative and qualitative instruments. We conducted in-depth interviews of carers (n = 16) and key primary health providers (n = 10). We also carried out focus groups (n = 7). Data were triangulated and interpreted in light of peer reviewed literature. RESULTS: There was a delay of 2.92 (95% CI 1.9 to 3.94) to 4.17 (95% CI 2.34 to 6.01) years between detection and seeking of care. Parental stress associated with caring for these children was high (mean Self-Reporting Questionnaire score 8.4; 95% CI 6.80 to 9.91). Home management consisted mainly of physical containment. Stigma associated with ID contributed to decreased opportunity for these children and families to participate in community activities. There was a lack of knowledge about causation and effective interventions for ID. CONCLUSIONS: Our findings suggest that there is significant delay in detection of ID especially in rural setting where more than 70% of population of Pakistan resides. This missed opportunity for rehabilitation in early formative years is a cause of significant distress for the caregivers who rarely receive valid information about course, prognosis and what remedial action to take. There is a need to develop feasible, cost-effective, community level interventions, which can be integrated into existing healthcare systems.

A qualitative study of the experience of treatment for infertility among women who successfully became pregnant.

BACKGROUND: In a study in which 18,503 women who had recently given birth were interviewed, 460 women who had received treatment for infertility (2.6%) were asked to participate in a postal study. The aim was to investigate the experience of women who had undergone treatment for infertility and given birth as a consequence, focusing on perceptions of treatment and care. METHODS: The study relies on responses to open-ended questions about the impact of treatment, how treatment could be improved and advice to policy makers. The text responses to these questions were analysed qualitatively. RESULTS: A total of 230 women responded (50%). Emergent themes related to the treatment process, pain and distress, lack of choice and control, timing, emotional and financial costs, fairness and contrasts in care. CONCLUSIONS: Women wished to be treated with respect and dignity and given appropriate information and support. They wanted their distress recognized, to feel cared for and to have confidence in health professionals in situations where outcomes are uncertain. Women acknowledged receiving care from motivated and skilled health professionals and value the children they have enormously. For many, there is now a sense of being complete, though for some this has been at great emotional and financial cost.

Social and ethnic inequalities in the offer and uptake of prenatal screening and diagnosis in the UK: a systematic review.

OBJECTIVE: To review studies addressing the question of whether there are social inequalities in either the offer or the uptake of prenatal testing in the UK. METHOD: Systematic review of studies assessing the offer or uptake of prenatal screening or diagnosis according to social class or ethnic origin. Electronic databases were searched using a strategy developed for a review of inequalities in access to maternity care supplemented with terms specific to prenatal testing. Further papers were identified from reference lists, citation searches and key organizations. RESULTS: From over 600 identified papers, 41 were potentially relevant. Twenty met the inclusion criteria. The studies included covered screening and/or diagnosis for Down's syndrome, neural tube defects, haemoglobin disorders and HIV. Many studies were limited by small numbers or poor reporting of data and analysis. Six studies reported data on prenatal testing according to women's social class or educational level. None found any significant social inequalities in testing. Some studies suggested that women of South Asian origin might be up to 70% less likely to receive prenatal testing for haemoglobin disorders and Down's syndrome than White women. A small number of studies suggested that South Asian women might be less likely to be offered testing. CONCLUSIONS: This review provides some evidence of ethnic inequalities in access to prenatal testing. Further research is required to improve our understanding of why testing may not be offered, the reasons for failure to take up testing when offered, and to identify whether there are other social inequalities in access to prenatal testing.

Economic implications of assisted reproductive techniques: a systematic review.

BACKGROUND: Approximately one in six couples experiences problems with their fertility at some point in their reproductive lives. The economic implications of the use of assisted reproductive techniques require consideration. Herein, the health economics research in this area are critically appraised. METHODS: Multiple strategies were used to identify relevant studies. Each title and abstract was independently reviewed by two members of the study team and categorized according to perceived relevance. The selected papers were then assessed for quality and data were extracted, converted to UK pounds sterling at 1999/2000 prices, tabulated and critically appraised. RESULTS: A total of 2547 papers was identified through the searches; this resulted in 30 economic evaluations, 22 cost studies and five economic benefit studies that met the selection criteria. The quality of these studies was mixed; many failed to disaggregate costs, discount future costs or conduct sensitivity analyses. Consistent findings included the following: initiating treatment with intrauterine insemination appeared to be more cost-effective than IVF; vasectomy reversal appeared to be more cost-effective than ICSI; factors associated with poor prognosis decreased the cost-effectiveness of interventions. CONCLUSIONS: The cost-effectiveness of different interventions should be considered when making decisions about treatment. Future economic appraisals of assisted reproductive techniques would benefit from more robust methodology than is evident in much of the published literature to date.

Addressing domestic violence through maternity services: policy and practice.

OBJECTIVE: to explore current policies and practices in maternity units that aim to identify, assess and support women experiencing domestic violence. DESIGN AND SETTING: a postal survey, conducted between June and October 1999, of all NHS Trusts in England and Wales that provided maternity services. PARTICIPANTS: Heads of Midwifery or the midwife with expertise or interest in domestic violence in each Trust. MAIN OUTCOME MEASURES: use of written policies and agreed practices for identifying and referring women experiencing domestic violence, such as availability of information, routine questioning of all women and offering women an appointment without their partner. RESULTS: 87% (183) of the 211 NHS Trusts providing maternity care participated in the survey. Twelve per cent of units had written policies for identifying women experiencing domestic violence, and a further 30% had some form of agreed practice. Less than half of maternity units routinely offered women an appointment without their partner, and just over half displayed material about domestic violence in places where women receive maternity care. Only three units had undertaken audit on their domestic violence practices. CONCLUSIONS: there is considerable variability around England and Wales in policies and practices related to domestic violence. It is evident that clear guidelines for identification and referral, training, audit and the integration of domestic violence policies with child protection and other policies are necessary to fully address the issues.

Economic issues in the follow-up of neonates.

Children with conditions requiring neonatal intensive care impose a financial burden on health services, on families and carers, and on society generally. A systematic review of the literature identified 81 studies that conducted primary research on the cost of services as a result of conditions requiring neonatal intensive care. The majority of studies estimated costs incurred during the initial hospital stay. Relatively few studies considered health service costs following discharge from the neonatal intensive care unit, costs to other sectors of the economy or costs to families and carers. It is important that these costs are considered more fully.