Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

'It's the system working for the system': carers' experiences of learning disability services in Ireland

The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers ( n  = 25) and representatives from national carer organisations ( n  = 6) in Ireland. These were people caring for an adult (18–30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.     

Incidence and pattern of unintentional injuries and resulting disability among children under 5 years of age: results of the National Health Survey of Pakistan

National estimates of injuries for children under 5 years based on population representative surveys are not readily available globally and have not been reported for developing countries. This study estimated the annual incidence, pattern and distribution of unintentional injuries according to age, gender, socio‐economic status, urban/rural residence and disability caused among children aged under 5 years in Pakistan. The National Health Survey of Pakistan (NHSP 1990–94) is a nationally representative survey of households to assess the health profile of the country. A two‐stage stratified design was used to select 3223 children under 5 years of age for interview and examination. Data were used for boys and girls in urban and rural areas over the preceding year. A community development index was developed to assess the relationship between socio‐economic status and injuries. Weighted estimates were computed adjusting for complex survey design using surveyfreq and surveylogistic option of SAS 9.1 software. Post hoc power calculations were made for each variable keeping the design effect at 3.0. The overall annual incidence of unintentional injuries was 47.8 [95% CI 36.6, 59.0] per 1000 per year; 50.2 [95% CI 37.0, 63.4] and 45.2 [95% CI 29.4, 61.0] per 1000 per year among boys and girls under 5 years of age respectively. An estimated 1.1 million unintentional injuries occur in Pakistan annually among these children. Injury rates increase with age among the under‐5s. Urban and rural injuries were 56.1 [95% CI 33.5, 78.7] and 44.1 [95% CI 31.1, 57.1] per 1000 per year respectively. The children living in least developed communities had almost 3 times higher risks of injuries than most developed communities. The annual incidence of types of injuries were: falls 28.7 [95% CI 19.5, 37.9], cuts/bruises 9.7 [95% CI 5.3, 14.1] and burns 6.6 [95% CI 3.0, 10.2] per 1000 per year. Falls were the most common type of injury (60%) followed by cuts/bruises (21%) and burns (14%). The majority of injuries occur at home (85%), with just 10% due to road traffic. Road traffic injuries and injuries to the female child were more likely to result in disability. There is a high burden of unintentional injuries and disability among children under 5 in Pakistan. These results are useful for planning further research and for prioritising prevention programmes nationally and in other developing countries with similar situation.     

Access to therapy services for people with disability in rural Australia: a carers’ perspective

In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban‐dwelling counterparts. This cross‐sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1–69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers’ perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.     

Routes to better health for children in four developing countries

Despite the availability of effective, affordable interventions for the most common causes of death, more than ten million children in developing countries die each year. This article describes the circumstances of four countries whose reductions in child mortality exceeded what might be expected from their poor economic circumstances, and it asks whether they followed common routes to improved health for children. The findings suggest that contextual factors, such as the degree of economic development, good governance, and strong health care systems, matter less than do targeted health intervention, foreign aid, and technical assistance. In general, these findings contradict prevailing U.S. foreign policy regarding the circumstances in which progress toward health goals can be made.     

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS

ABSTRACT

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS. Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS. Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors. Demographic data, caregiving tasks and evaluations were collected. Results: The model is feasible for both youth and therapists. Youth found benefit, skill acquisition, and mastery by asking questions, teaching back skills to the group and engaging with peers. Conclusion: This project demonstrates young caregivers will participate in training, and engage with “like” peer group. Future projects will focus on developing a structured survey and observation, testing efficacy in larger groups.     

Carers and confidentiality in mental health care: considering the role of the carer's assessment: a study of service users', carers' and practitioners' views

Relatives or carers of people with mental health problems have criticised professionals for their failures to share information with them. This article reports on a multiple method study comprising a policy search, a survey of service users, carers and professionals, and stakeholder interviews and group events. The study found few policies that addressed the principles underpinning information sharing with carers. However, examples of good practice in professional involvement of carers that took account of carer rights and responsibilities emerged from the research. This suggests the relevance of the carer's assessment, a carer's right to an assessment of his or her circumstances and wishes in assisting understanding of the care context and enhancing appropriate information sharing between professionals and carers.     

Progressive segmented health insurance: Colombian health reform and access to health services

Equal access for poor populations to health services is a comprehensive objective for any health reform. The Colombian health reform addressed this issue through a segmented progressive social health insurance approach. The strategy was to assure universal coverage expanding the population covered through payroll linked insurance, and implementing a subsidized insurance program for the poorest populations, those not affiliated through formal employment. A prospective study was performed to follow-up health service utilization and out-of-pocket expenses using a cohort design. It was representative of four Colombian cities (Cendex Health Services Use and Expenditure Study, 2001). A four part econometric model was applied. The model related medical service utilization and medication with different socioeconomic, geographic, and risk associated variables. Results showed that subsidized health insurance improves health service utilization and reduces the financial burden for the poorest, as compared to those non-insured. Other social health insurance schemes preserved high utilization with variable out-of-pocket expenditures. Family and age conditions have significant effect on medical service utilization. Geographic variables play a significant role in hospital inpatient service utilization. Both, geographic and income variables also have significant impact on out-of-pocket expenses. Projected utilization rates and a simulation favor a dual policy for two-stage income segmented insurance to progress towards the universal insurance goal.     

Science and technology for wealth and health in developing countries

Abstract

It is now widely accepted that the developing world needs to invest in science and technology or risk falling behind as the technology gap between the North and South widens. However, these investments must be balanced by continued investment in basic population-wide services, such as healthcare and water supply and sanitation. Achieving this balance is a matter of ongoing debate in policy circles, and leaders and policy-makers in developing countries often have to make difficult decisions that pit investment in new technologies and capacity-building in science and technology against basic population-wide services such as healthcare and water supply and sanitation. The tension is underscored by evidence which suggests that rapidly industrializing economies, like in China, India and Brazil, are actually experiencing a rise in economic and health disparities among their populations. The fact that poor people in an industrializing country must fall behind while the rest of the country marches ahead does not have to be an inevitable outcome of industrialization. This article shows that science and technology can make an important and vital contribution to development, using public health as an example. It suggests the need to focus investments in science and technology in such a way that they can have a positive impact on public health. For instance, the use of simple, hand-held molecular diagnostic tools can help unskilled health workers rapidly and accurately diagnose diseases, thus helping to reduce healthcare costs due to delayed or incorrect diagnoses. Recombinant vaccines can mitigate the risk of infection associated with live or attenuated vaccines, while needle-less delivery methods can help contain the spread of blood-borne infections.

Critical to making technology investments work for population health are government policies and strategies that align public health goals and technology priorities. Such policies can include cross-sectoral training programs to improve dialogue between the technology and health sectors, setting up technology transfer cells to increase commercialization of health research relevant to local needs, and leveraging the phenomenon of low-margin high-volume marketing for health products.     

Difficulties for mothers in using an early intervention service for children with cerebral palsy in Bangladesh

Given the numbers of disabled children in Bangladesh and the lack of trained professionals, innovative forms of service delivery are required. The Bangladesh Protibondhi Foundation has developed an outreach parent training service based at two centres, one urban and one rural. Mothers are shown how to use pictorially based Distance Training Packages (DTP), which they take home. This paper presents findings concerning factors which seem to affect mothers' attendance with their children at DTP advisory sessions. The study followed 47 children with cerebral palsy, aged between 2 and 5.5 years, over a period of around 18 months. The main factors predicting higher attendance were the child's sex (i.e. boys were brought back more often), particularly in the rural area, and lower adaptation to the child reported by the mother. The problems described by mothers in using the DTP advisory service were economic (such as transport costs), cultural (such as mothers not being permitted out alone), and medical (such as the child having repeated fits). The implications for future service development are discussed.     

Creating equitable healthcare quality and safety for children with intellectual disability in hospital

Children with intellectual disability are susceptible to poor experiences of care and treatment outcomes, and this may compound existing health inequities. Evidence to date indicates three priority areas that must be addressed in order to reduce these inequities in the safety and quality of care for children with intellectual disability. Firstly, we need reliable methods to identify children with intellectual disability so that healthcare organizations understand their needs. Secondly, we need to develop quality metrics that can assess care quality and unwarranted care variation for children with intellectual disability in hospital. Finally, for a comprehensive understanding of the safety and quality of care for these children, and how to improve, it is critical that healthcare organizations partner with parents/carers and enable children with intellectual disability to voice their experiences of care. Children with intellectual disability have higher healthcare utilization than their peers; yet, their voice is rarely sought to optimize the safety and quality of their healthcare experience. Patient experience narratives enhance our understanding of the genesis of adverse events. By addressing these priorities, children with intellectual disability will be identified, and health services will measure and understand the problematic and beneficial variations in care delivery and can then effectively partner with children and their parents/carers to address the inequities in care quality and create safer healthcare.     

Brain death determination: the imperative for policy and legal initiatives in Sub-Saharan Africa

The concept of brain death (BD), defined as irreversible loss of function of the brain including the brainstem, is accepted in the medical literature and in legislative policy worldwide. However, in most of Sub-Saharan Africa (SSA) there are no legal guidelines regarding BD. Hypothetical scenarios based on our collective experience are presented which underscore the consequences of the absence of BD policies in resource-limited countries (RLCs). Barriers to the development of BD laws exist in an RLC such as Kenya. Cultural, ethnic, and religious diversity creates a complex perspective about death challenging the development of uniform guidelines for BD. The history of the medical legal process in the USA provides a potential way forward. Uniform guidelines for legislation at the state level included special consideration for ethnic or religious preferences in specific states. In SSA, medical and social consensus on the definition of BD is a prerequisite for the development BD legislation. Legislative policy will (1) limit prolonged and futile interventions; (2) mitigate the suffering of families; (3) standardise clinical practice; and (4) facilitate better allocation of scarce critical care resources in RLCs. There is a clear-cut need for these policies, and previous successful policies can serve to guide these efforts.     

ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners

Two per cent of people in Australia have intellectual disability and the adults in this population often have poor health status. This poor health can be partly attributed to communication difficulties encountered by people with intellectual disability and also health professionals in consultation settings. The design and development processes of an educational intervention to improve communication between patients, general practitioners (GPs) and also advocates in a population of adults with intellectual disability are described. The design process was collaborative and involved adults with intellectual disability, GPs, parents, support workers and other professionals. It was a nine-step development process and led to the final communication tool package, the ask (advocacy skills kit) 5-year health diary and educational session. As a result of the collaborative design and development processes, this diary included qualities not found in most other medical record keeping systems: visual appeal, advice on how to be a health advocate, utility for a range of users, privacy, portability and sufficient capacity to record personal patient information which enhanced communication between doctor, patient and advocate. It is proving to be very popular. Clear implications were found for applying established criteria and incorporating the needs of users in the design of educational interventions in the intellectually disabled population. Health promotion tools aiming to improve the current poor health status of adults with intellectual disability should be developed further.