What three things are most important in your life? Most people who respond to this question will name good health as fundamental to a life of quality. The expectation of longer life, especially in Europe, no doubt heightens the value placed on health. But, like the pursuit of many glittering prizes, gaining health is not a simple matter. An ecological approach suggests that good health depends not on luck, nor the individual’s characteristics alone; rather, there are many interwoven strands that influence health: early experiences, family upbringing, the social environment, available health systems and the wider environment.
Gender, too, determines health; not only do men and women incur different health risks, behaviours and outcomes, but the social, political, economic and global environments exert different influences on men and women. Many citizens in the developing countries—where most of the world’s people with disabilities live—cannot rely on peaceful stability, clean air and wholesome water, and as a result their children’s lives are compromised from the start. Some girls grow to be women in cultures where their gender devalues them all their lives, and the presence of disability is exacerbated by being poor, without a spouse, without income and with scant access to health care.
Most of the evidence about health disparities for women with intellectual disabilities reflects patterns in the more developed countries. Women in these countries face risks to their physical and mental health that are common to all throughout the lifespan—childhood ailments, accidents, skin complaints, chronic conditions like pain or diabetes, hearing loss, traumatic events such as falls and the onset of depression. Surprisingly, there have been few attempts to develop measures that reflect women’s experiences of health, well-being, illness and disability (Eckermann 2000). We know much more about the distribution of the conditions reported than their impact on the lives of individual women and their families.
People with intellectual disabilities prize their own good health: your health is your wealth, commented one woman in her sixties living in a group home in northern Europe (Walsh and LeRoy 2004). But they experience additional risks, as people with disabilities in general are likely to incur secondary conditions, that is, health conditions that are more likely to arise given the presence of disability. People with intellectual disabilities have more health problems than their peers. Evidence from more developed countries suggests higher prevalence rates for epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures, among people with intellectual disabilities. A recent study in the Netherlands found that patients who had intellectual disabilities reported more than twice the number of health problems than their peers, matched for gender and age, on the same GP register. Closer to home, health screening carried out by a community nursing service in Northern Ireland revealed the need for further action in relation to cardiovascular status, sensory deficits, mobility and aspects of sexual health among people with intellectual disabilities (Barr, et al.1999).
Fresh thinking about the health of people with disabilities has turned away from a view that equated ‘disability’ with ‘disease’, and toward strategies to promote health and to prevent secondary conditions throughout the life course (Rimmer 1999). What are the implications for women with intellectual disabilities, their families and professionals in promoting good health?
In health promotion, as in other domains, individual preferences are paramount. For many women with intellectual disabilities, whether living with their families or in supported residences, the tools they need to make healthier decisions may not be to hand. They may ask for support to identify what changes are optimal, how to make desired changes step by step in everyday routines and what resources—personal, instrumental, financial—are available. However achieved, experts agree that an ounce (or for metrically adept women, 28.4 grams) of prevention is worth a harvest of health benefits.
Two topics have immediate resonance for women’s health. A sharper focus on promoting good mental health is indicated. One study found that Canadian women with intellectual disabilities reported higher levels of depression than men. Individuals with higher depression scores were lonelier and had higher stress levels than individuals with lower scores (Lunsky 2003). Further studies in this area will help to tease out the complex factors related to women’s reports of depression and thus help to shape practical interventions promoting their mental health. In some quarters, older notions that intellectual disability is itself a form of mental illness persist, with a result that women—and men—may suffer needlessly without recourse to appropriate treatment specifically targeting a mental health difficulty.
A second topic relates to many strands of women’s sexual and reproductive health: management of menstruation, intimacy and relationships; advice on contraception; and information about the menopause. A recent study in the UK concluded that women with intellectual disabilities are at least as likely to incur problems with menstruation as other women. However, it was evident that the women would benefit from information, help with management— especially those women who had male carers—and support in defining the very problems they experienced so they might determine how to construe and respond appropriately to problems.
Evidence has emerged about the influence of the person’s environment on health. A study of risk factors for health of people living in different residential settings in the UK found a high prevalence of obesity among women (Robertson, et al. 2000), for example. Individuals living in larger residential campus settings reported lower levels of physical activity. These authors argued that increasing levels of moderate or vigorous physical activity among people with intellectual disabilities would be the single most effective way of improving their health. Health promotion strategies address lifestyle changes for all—more physical exercise, better nutrition and satisfying social supports. Generic strategies must be carefully honed to meet the particular needs of women with intellectual disabilities at different stages of the life course, and in different living environments.
Health screening is important in preventing disease and promoting good health. For example, breast cancer is one of the commonest cancers to affect women. Investigators in Australia examined patterns of participation in breast-screening and found that failure to use screening services was highest in women who were unmarried, and was positively associated with severity of intellectual disability, presence of physical disabilities, and urban residence. These authors (Sullivan et al. 2003) commented that while women with intellectual disabilities may be at lowered risk of breast cancer than their peers, efforts must be made to ensure that they have regular access to screening programmes, particularly those in the group aged 50-69 years. Elsewhere, two recommendations were that primary health care professionals should endeavour to recognise health promotion opportunities among older women with intellectual disabilities, and that support services for women living in community group homes could be provided with better training and resources to improve breast cancer screening in this vulnerable group (Davies and Duff 2001).
When women seek health care, access hinges on adequate information for them, their families and carers. Health professionals are typically responsible for information about critical or long-term health care. It is widely recommended that training programmes for professionals should target competence in this area. In practical terms, GPs, nurses, therapists and careworkers may have to make allowance for the longer consultation time involved (Grover 2002), and making equipment accessible to people with disabilities.
Health information: European context
The European Union has responsibility for public health policy at Community level, yet citizens with intellectual disabilities (an estimated 4.5 million persons) are invisible in public health initiatives. The Pomona project, funded by the European Communities DG-Public Health, takes its name from the Roman goddess of fruitfulness. From 2002–2004, partners developed a set of 18 evidence-based health indicators for people with intellectual disabilities, grouped under four categories: demographic information, health status, health determinants and health systems. First steps were to review scientific evidence and consult with self-advocates, family members and health professionals to develop indicators about aspects of the health status, health determinants and health systems relevant to women and men with intellectual disabilities. Currently, the Pomona-2 project (2005-2008) involves partners from 14 countries of Europe. The list of indicators is at the core of a detailed survey instrument, now translated into 13 languages, including Slovenian and Lithuanian. The pilot study has been completed, and partners will gather health information in their countries during 2007. One outcome is a reliable and valid tool that will yield information on the health of people with intellectual disabilities so that any negative disparities may be identified and addressed, and their healthy aging may be monitored over time.
Some pathways to improving health among women with intellectual disabilities have been charted, if not fully explored. Core elements are lifelong education about health, good communication with health professionals, responsive living and working environments, effective health promotion strategies and better access to health systems. Service providers might adapt environments, both physical and social, by working in collaboration with women themselves. At systems level, health professionals are urged to examine how to embed certain competences in training—such as taking time and communicating effectively with women who have distinctive needs. Policymakers in Ireland and throughout Europe will benefit from robust health information that will enable them to chart trends, make comparisons and measure the impact of interventions.