There are many definitions of 'disability' (Appendix 1), but the one chosen to guide this review is the definition of the International Classification of Functioning Disability and Health: 'Disability is a decrement in functioning at the body, individual or societal level that arises when an individual with a health condition encounters barriers in the environment' (WHO, 2001). Within an Irish context the Disability Act (Government of Ireland, 2005) defines disability as 'a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the Irish State or to participate in social or cultural life in the Irish State by reason of an enduring physical, sensory, mental health or intellectual impairment (pg. 6).'
This literature review was commissioned by the National Disability Authority in order to identify and analyse Irish and international literature on the challenges facing women with disabilities in accessing health services during pregnancy, childbirth and early motherhood. The review forms the first section of a 3-part study commissioned by the NDA. The second part is composed of a comprehensive review of current policy governing procedure and practice in service provision at the levels of the Health Service Executive (HSE), relevant professional bodies and maternity hospitals or units, for women with disabilities when accessing publicly-funded Irish health services during pregnancy, childbirth and early motherhood. It includes a comparison of the state of such policy development in Ireland vis-à-vis the international situation (Begley et al, 2009).
The third element (Begley et al, 2010) presents the results of a nation-wide study exploring the strengths and weaknesses of publicly-funded Irish health services provided to women with disabilities in relation to pregnancy, childbirth, and early motherhood. The study, which utilises semi-structured interviews, incorporates the experiences of women across the country, from all socio-economic groups, and includes their experiences of care from general practitioners, midwives, obstetricians, paediatricians, and public health nurses, as well as the maternity hospitals. Recommendations are made as to how the experience of engaging with the various publicly-funded Irish health service providers during pregnancy, childbirth and early motherhood can be improved for women with disabilities.
This review, as the introductory part of the complete study, aimed to:
Because the remit of the literature review was to examine the challenges facing women with disabilities in accessing health services for maternity care, there may appear to be a rather negative slant to the report, giving the impression that there is nothing positive in the literature about accessing services for this population. This is neither intentional nor accurate and, indeed, some positive factors are reported under the heading of 'facilitators' to access. However, the main focus has, necessarily, to be on the negative aspects that challenge women with disabilities in their quest for care.
The review did not consider in detail access of women with disabilities to general health services, personal assistance and care issues, the effects of poverty and social exclusion, or women and disability in general as the NDA has previously commissioned reviews in these areas.
A systematic review of the literature, published in English, from 1950 to 2009 was undertaken, with reference to earlier seminal texts or texts providing a historical background, to identify the challenges that women with disabilities encounter when accessing health services during pregnancy, childbirth and early motherhood. Searches were undertaken in the major electronic bibliographic databases and a number of methods were used to identify the relevant literature:
Major organisations and experts in the field were also contacted (Appendix 2). Citation searches were conducted on key papers and the reference lists of included studies were checked for additional references.
A combined free-text and thesaurus approach was adopted for key-word selection. 'Population' search terms included disabil*, disability, physical disability, decreased mobility, immobility, disabled person, visually impaired person, vision disorders, blind, deaf, hearing impaired, hard of hearing, intellectual disability, learning disability, developmental disability; mental retardation, mental health, mental illness, enduring mental health difficulties, severe mental illness, pre/postnatal mental illness, pre/postnatal depression, anxiety, schizophrenia, psychosis, mother and baby units, and child custody. Other key words used included: health services, maternity services, health professional, inequality, equity, barriers, access, challenges, attitudes, pregnancy, childbirth, maternity; motherhood, parenting, parents, social construct, explanation, and definition. No date, study-type or publication-type restrictions were used, apart from non English studies and those imposed by the databases searched.
The review identified that there was a paucity of literature in relation to the challenges that women with disabilities encounter when accessing health care services during pregnancy, childbirth and early motherhood. A substantive volume of literature was sourced in relation to the debate surrounding women with disabilities, their right to reproductive technologies, and their effort to be recognised as women who can fulfil the traditional roles society affords to women. This literature, details of which are given in section 1.6 and Appendices 3-6, can be categorised into 2 distinctive types; the first is the existential lived experiences of women with disabilities while the second is formed by theoretical papers, written mainly by academics, which attempt to offer an analysis of these women's experiences (Tilley, 1998). A discussion of this body of work is presented in the second chapter of this review to provide a background and context for the substantive review.
In the absence of any breadth of literature on women's experiences of accessing the health services during pregnancy, childbirth and early motherhood, some additional material was sourced and reviewed in relation to the experiences of people with certain disabilities accessing the general health services.
Papers were assessed for quality and only those demonstrating rigorous empirical research findings (as assessed by unbiased sampling methods, data collection, analysis and presentation of results based on empirical data), were used in the review. Opinion pieces or news items, however, were read and included where relevant. In addition, historical texts and papers were used to provide a historical background, particularly when discussing mental health and intellectual disabilities.
The literature fell into 3 categories, the first emerging from the qualitative domain. Here face to face interviews or focus groups were the primary methods of data collection. These studies identified a multitude of environmental, structural, and process challenges encountered by women with disabilities that impacted significantly on the person's ability to access and avail of quality health care. However, the small sample sizes associated with qualitative designs means that the findings cannot be taken as representative of the entire population of people with disabilities. The second body of literature emanates from the quantitative domain. Here data are generated from probability samples participating in large, national surveys using postal questionnaires or telephone surveys. Response rates tended to be low, however, so representativeness is, again, questionable. The third category of research is of the case study variety, which tends to focus on the challenges encountered by people with a single impairment, for example, deafness or mobility/physical disabilities. Again, sample sizes are small so that findings are not always representative of the entire population with the specific impairment.
Studies that inform the review are mainly from America, Canada, Australia and the United Kingdom, as countries comparable to Ireland in terms of cultural, economic and social settings, with a very small number of studies from the Irish perspective. A few studies from other cultural settings such as China and Malaysia are mentioned when appropriate, or in the absence of literature from our own or comparable societies.
The introductory background in Chapter 2, which provided a context for the review, used literature on historical developments in the care of women with disabilities, their sexuality and reproductive rights, and the effect of disabilities on pregnancy. A total of 161 papers on women with physical disabilities were sourced, 114 of which were relevant; 18 papers (14 relevant) were sourced on women with hearing impairment, 9 (6 of which were relevant) on women with visual impairment, 3 papers on ethnicity, 97 on women with mental health difficulties and 52 on women with intellectual disability. Papers relating to barriers and facilitators to accessing services during pregnancy, childbirth and early motherhood were identified for women with all disabilities. Twenty-eight papers for women with physical disabilities, 20 referring to vision and/or hearing impairment, 23 relating to mental health disorders, and 26 in the area of intellectual disability were assessed and selected for detailed analysis and inclusion in the review. Salient facts such as aim, sample size, research approach and main findings were noted and are presented in tabular format in Appendices 3 - 6. The main findings from papers in each category were combined and are presented in Chapters 3 to 6.
Chapter 1 introduces the review, sets out the aims and purpose, describes the methodology and gives an overview of the content. Chapter 2 provides the background and context for the main sections, including a brief introduction to childbirth and motherhood in Ireland. Definitions of disability and a historical background of the different disabilities and their relationship to pregnancy, childbirth and motherhood are also reported. Chapter 3 outlines the barriers and facilitators for women with physical disabilities in accessing services during pregnancy, childbirth and early motherhood. Chapter 4 describes how women with vision or hearing impairment experience barriers and facilitators in accessing these services. Chapter 5 examines the barriers and facilitators for women with mental health difficulties in accessing services and professional help during pregnancy, childbirth and early motherhood. Chapter 6 explores how women with intellectual disabilities encounter barriers and facilitators to accessing these services. A summary of key findings, with identification of the major research gaps, concludes each of these chapters. Chapter 7 provides a summary overview and Chapter 8 lists key research findings and identifies research gaps.