This study, part of a 3-part project, was commissioned by the National Disability Authority (NDA), in a joint initiative with the National Women's Council of Ireland (NWCI), to explore the strengths and weaknesses of publicly-funded health services in Ireland provided for women with disabilities in relation to pregnancy, childbirth and early motherhood. The report presents the findings of a nation-wide study and complements the 2 companion documents forming the first 2 sections of the study, also commissioned by the NDA. The first of these was a comprehensive review of Irish and international literature on the challenges facing women with physical, sensory, mental health or intellectual disabilities in accessing health services during pregnancy, childbirth and early motherhood (Begley et al, 2009a). The second (Begley et al, 2009b), presents a review of Irish and international social policies relating to disability and childbirth. Together, these 2 documents outline the legal and practical provision of publicly-funded health services for women with disabilities in Ireland and 9 other countries, and provide the background for this detailed exploration of women's views and experiences of the services they received.
Various authors (Wagner, 2001; Devane et al, 2007; KPMG, 2008) have noted that childbirth in Ireland has become more medicalised, particularly over the past 2 decades and women with disabilities may therefore be at risk of being viewed as having a medical problem solely because of their particular disability. Internationally, the literature relating to the care of women with all types of disabilities shows a history of discrimination. Evidence from the literature sourced for Part 1 of the study (Begley et al, 2009a) suggests that society has undervalued women with disabilities, has exerted control over their sexual and reproductive lives and, in many cases, has exacerbated their difficulties. Mothers with intellectual disabilities or mental health difficulties, in particular, are often considered an antithesis to the stereotypical 'ideal' mother, separated from their children, whether or not there is evidence of risk of harm (Begley et al, 2009a). A review of national policies in 10 countries demonstrated that, with the exception of the UK, all countries lacked definitive policies relating to the care of women with disabilities when accessing maternity services and care (Begley et al, 2009b).
The National Disability Authority (NDA) and National Women's Council of Ireland (NWCI) have previously highlighted the need to improve access to reproductive and sexual health services for women with disabilities in Ireland, as well as the need for disability awareness training among health professionals (NWCI, 2001; NDA, 2007). Evidence from the NDA's second national attitudes survey suggests that people's attitudes towards disability are improving (NDA, 2007) but it is apparent that some negative attitudes persist. At the start of this project, no study had prospectively set out to undertake any detailed exploration of the views and experiences of women with disabilities in Ireland in relation to maternity care.
The starting point for any change in service provision has to be with the individuals seeking that service (Kennedy and Murphy-Lawless, 2002), so if access to health services during childbirth, pregnancy and early motherhood was to be improved for women with disabilities, their experiences had to be documented. This study aimed to address this gap in research by seeking the experiences of women with disabilities in terms of the strengths and weaknesses of publicly-funded Irish health services provided to them in relation to pregnancy, childbirth, and early motherhood, with a view to informing the development and improvement of maternity care services for women with disability in Ireland.
To explore the strengths and weaknesses of publicly-funded Irish health services provided to the following groups of women:
The way in which 'disability' is defined and understood can have implications for how people with disabilities are perceived and treated. Factors such as gender, class, sexuality and age, structure the experience of people with disabilities. There are many definitions of 'disability' but the team has chosen the definition of the International Classification of Functioning Disability and Health (ICF) to guide the study. This definition states: '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' (World Health Organisation, 2001). Within an Irish context the Disability Act (Government of Ireland, 2005: 6), which is informed by the ICF framework, 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.'
A qualitative descriptive design was used to ascertain and explore the views and experiences of women with disabilities throughout Ireland. Rich, in-depth data were gathered from 78 women with a disability who had experience of, or were currently receiving care from, the maternity and early motherhood services. In order to ensure that women with multiple experiences and outcomes were sampled, women from many backgrounds and geographical locations were invited to participate. The views of relevant service providers were also sought through focus groups.
Preliminary attempts to identify the 5 populations of women (women with visual impairment (V), hearing impairment (H), physical disability (P), mental health difficulty (M) or intellectual disability (ID)) revealed that few comprehensive databases exist in this regard. Thus, the populations could not be readily delineated. Furthermore, contacts with individuals and bodies representing people with mental health difficulties and intellectual disabilities suggested that these women might be very difficult to access and, in relation to women with ID, could be few in number. It was proposed to interview 90 women, 30 during pregnancy, 30 during the immediate post-natal period (up to 6 months), and 30 during early motherhood (6 months to 2 years). Each of these groups was to comprise of approximately 6 women with visual impairment, hearing impairment, physical disability, mental health difficulty or intellectual disability, respectively. The National Disability Survey figures (Central Statistics Office, 2008: Table 1.10) show that 9.3% of people in Ireland have a disability, and that 23% of women with a disability are aged 18-44, so approximately 2.2% of women of childbearing age would have a disability. As there were 75,065 births in 2008, the inclusion of 90 women in this study would represent approximately 5.5% of a possible total of 1651 women with disabilities aged 18-44 years who gave birth in 2008.
In general, the women self-reported their disability when presenting for participation in the study and no stringent checks were made to verify their account. However, it was usually obvious that women had the impairment that they described. The defining characteristics identified as guiding the entry criteria for each population group were:
All participants in this study volunteered to take part and self-identified themselves as having a disability in one or more of the above categories. In the case of women self-identifying as having a visual impairment, all were in receipt of the Blind Person's pension. All women in the hearing impairment strand contacted the research team through DeafHear. All those with physical disabilities were obviously disabled by their particular condition. Women volunteering in the mental health strand had a variety of mental health difficulties (section 1.2.5.) and those presenting with intellectual disability were all in receipt of services for those with an intellectual disability.
Inclusion criteria: Women with a disability, as above, and were a) currently pregnant, and/or b) had given birth in the past 6 months and/or c) had given birth in the period 6 months to 2 years ago.
Exclusion criteria: Women who were considered to be unable to give informed consent on the day of the interview..
The inclusion criterion for participants in the focus groups was solely that they have some experience of caring for women with disability during pregnancy, childbirth or early motherhood. The population of relevant service providers from whom a sample was invited to attend a focus group included: general practitioners, midwives, obstetricians, neonatologists, paediatricians, allied health professionals, public health nurses and public health doctors, health care workers, family support workers, and psychiatrists/midwife specialists working in mental health within the maternity care setting.
In the light of the factors outlined above, and guided by the qualitative nature of the study, a key-informant/snowballing approach was employed. Access to the population was via a number of routes including individual women with disabilities, posters advertising the study in 3 maternity hospitals, 2 of which had a specialist service for women with mental health difficulties, and a national advertising campaign using the specialist magazines, newsletters and websites of key representative bodies including:
Information about the study was also submitted and published in Medicine Weekly and the Sunday Times. Trinity College Dublin issued a press release on 10th March 2008, which resulted in the study being advertised and promoted in the national press and on radio including in the Irish Times and Irish Independent, on Newstalk, East Coast Radio, and Outside The Box an RTE One radio production. Information on the study was also posted on a web-link from the TCD homepage.
Posters and information packages were sent to regional support groups linked with all the above national groups and agencies, and to:
An advertisement campaign aimed specifically at women with intellectual disability was also circulated via intellectual disability list-servs, including that provided by the National Council for the Professional Development of Nursing and Midwifery. This was supplemented by posting or emailing advertisements to more than 100 services, self-advocacy groups and individuals across the country. Snow-ball sampling was also employed as a means of maximising exposure. Links were formed with the psychiatric teams and medical social workers in the 2 of the 3 study sites, which provided mental health specialist services. These persons acted as gatekeepers and assisted with the recruitment of women with mental health difficulties during pregnancy and the postnatal period. Members of the research team attended meetings of support groups around the country to promote the study and provide information to potential gatekeepers and participants. Study information was also posted on parenting websites including Rollercoaster, MagicMum and Aims Ireland.
An initial letter and information brochure (Appendix 3) was sent to all women who fulfilled the inclusion criteria, and contacted the team offering to take part. The information brochure (which had been reviewed by the National Adult Literacy Association, and was translated into Braille and an audio version where appropriate) informed potential participants of the purpose, process, potential benefits and harms, the availability of psychological support if upset occurred during the interview, data collection procedures, time commitment, voluntary participation, the right to withdraw without prejudice to care, assurance of confidentiality (including in any publications associated with the study), researchers' contact details and an offer to answer any questions.
Those who indicated their willingness to be interviewed were contacted by a member of the research team, who answered any questions and arranged a suitable time and venue to meet and conduct the interview. Each participant was asked to sign a consent form prior to interview, consenting to be interviewed and the interview being digitally recorded, and a second consent form at the end of the interview consenting for data to be used in the study and publications (a copy of their consent form was given to each participant if they so wished). The demographic questionnaire was administered and completed at this time also.
A letter was sent to Directors of Nursing and Midwifery in the 19 publicly-funded maternity hospitals requesting them to nominate a person in the following positions - Director of Nursing/Midwifery, midwife, maternity care assistant, obstetrician, neonatologist, paediatrician, medical social worker, physiotherapist, psychiatrist, and midwife specialist in mental health to participate in a focus group discussion. Replies were received from 8 maternity units. Three maternity units furnished the names of the various health professionals, but 5 maternity units indicated that due to the Health Service Executive's embargo on travel and funding issues the Director of Midwifery, midwife and maternity care assistants would be unable to attend a focus group at this time. A reminder letter was sent to the remaining 11 maternity units requesting them to nominate persons in the various positions identified above.
The HSE's local health offices in each county were also consulted and they provided the contact details for general practitioners, public health nurses, social workers and physiotherapists employed in their respective primary community care services. Information about the focus groups and sites where they were to be held was also disseminated to:
A total of 6 focus groups were conducted. Four multidisciplinary focus groups were held, one each in Dublin, Donegal, Galway and Waterford. At least one representative from each discipline was invited to each group, and if unable to attend, a similarly suitable alternate was invited. Where possible, participants were purposively selected, with assistance from the key contact person in each area, to attend on the basis of a known openness to the support of women with disabilities, or a track record of developing services for such women. Once lists of names of selected representatives of each health professional group were provided, a letter of invitation and an information brochure was sent to each one, seeking their support and attendance (Appendix 3). Similar invitations were issued to other health professionals in the primary care services and, in total, over 600 letters of invitation were issued. In addition to the above, 2 disability specific groups, 1 intellectual disability and 1 mental health were held in Dublin and Donegal respectively. The intellectual disability focus group was held to gather some data from that area of care as there had been so few women included in that strand (section 4.6.3.).
A mental health-specific focus group was convened in the Donegal area to discuss the specialist mental health services and care provided for women with mental health difficulties in the region. Participants in this group had been invited to the multidisciplinary focus group conducted in Donegal but they were unable to attend on the particular day the group was convened. However, they were eager to relay their experiences so the research team decided to conduct a specialist focus group on mental health. During the individual interviews it also emerged that this service was a good example of high quality care.
The length of time it took to recruit participants to the physical and sensory strand of the study was considerable. Recruitment spanned 18 months and a 3-phased recruitment strategy was used. The critical feature was establishing a trusting relationship with the gatekeepers in the study sites and key worker/resource officers in the voluntary organisations and agencies. This relationship evolved from a partnership approach, and the purpose was to maximise the potential of recruiting participants for any strand of the study.
One issue which did arise was the importance of reinforcing the participants' right to anonymity and confidentiality, which proved to be particularly important in the hearing impairment strand of the study. The deaf community is a small, close-knit one and participants were concerned that when they recounted their experiences their identity could be readily deciphered. Meeting with key people in the deaf community, discussing and outlining the purpose and aims of the study was invaluable. Again, establishing a trusting relationship was critical, and it was this personal contact that yielded the most responses.
In relation to the women with mental health problems one issue did arise during the recruitment process. To meet the requirements of the Faculty of Health Sciences ethics committee in Trinity College Dublin a detailed information booklet was sent to women who expressed an interest in the study. During the interviews some women expressed the view that the level of detail in the information booklet was off-putting and may have inhibited women from taking part, due to the mistaken belief that in their contribution they had to be very 'clever' or 'articulate'.
In pursuance of its aim, this study sought to speak with women with intellectual disabilities regarding their experiences of the health services. The research team aimed to undertake 18 interviews with women who had intellectual disabilities. Six semi-structured interviews were to be conducted during pregnancy, 6 during the immediate post-natal period (up to 6 months), and 6 during early motherhood (6 months to 2 years). Following commencement of sampling, it quickly became apparent that this was an ambitious target that would be difficult to attain. The main reason underpinning this issue was not, however, related to the absence of potential participants, nor to any unwillingness on the part of such women to participate. It was, rather, due to significant difficulties which were encountered in actually getting the accessible information on the study to the women, despite widespread advertisement via formal and informal channels (section 2.4.6. above).
To open the study to a larger population, an amendment to the initial ethics approval was agreed by ethics committee and the NDA. This allowed a change to the early motherhood criterion from 2 to 4 years, a change which in fact did not result in any increase in volunteers. It was, however, through an unexpected route that 3 participants finally came forward and contributed their views. This arose from a discussion during one of the focus groups with health professionals, where one of the attendees knew of a Crisis Pregnancy Agency-funded service for women with special needs, including intellectual disability.
Other researchers have reported similar issues and challenges in attempting to access people with intellectual disabilities, especially when researching sensitive topics (Stalker, 1998; Lennox et al, 2005; Simpson et al, 2006). In an attempt to understand the above difficulties, and in view of the importance of obtaining experiences of women with intellectual disabilities, it was agreed that a number of further actions would be pursued. This included the organisation of a focus group with the senior management of services. This was arranged via the National Federation of Voluntary Bodies, and provided some contextual understanding of the issues pertaining to women who are service users becoming pregnant. It was also agreed that all service providers would be contacted via the National Federation of Voluntary Bodies to ascertain whether they are providing a service to any women who meet the revised inclusion criteria; any such notification being followed up by enquiry with the service as to whether the woman would be interested in knowing more about the study. No such notification was received. Finally, it was agreed that the research team would engage with groups such as Inclusion Ireland and self-advocacy groups to arrange a study team presence at self-advocacy conferences across Ireland in early 2009 to attempt to recruit interested women at those events. Despite dissemination of information by word of mouth and leaflets at such events, no contacts followed this.
Two months before the end of the study, one service met with the research team, discussed the study proposal, and approved a submission to their ethics committee. Approval from the committee was expedited, information was circulated and one woman with an intellectual disability agreed to take part in an interview.
There were no real challenges experienced when recruiting participants for the focus group discussions, although the planning and organising of each group took 12 weeks. Arranging and booking the venue was uneventful, thanks to the hospitality of the Director of Midwifery, as the focus group discussions were held in a maternity unit/hospital in each region. However, locating and obtaining a list or directory of service providers in each county was difficult so the team reverted to the telephone directory and contacting the Health Service Executive's local health offices in each county, whose help and assistance was invaluable. They provided the contact details for the general practitioners, public health nurses, social workers, managers of disability services and physiotherapists employed in the primary community care services in each of their respective areas. In addition to the unit/hospital based practitioners, health professionals working in the 19 publicly-funded maternity units/hospitals were also invited to participate in the focus group discussions.
The proposed sample size was 90, with 30 interviews at each of the 3 stages of pregnancy, childbirth and early motherhood. Each of the 5 specific disability strands was to have 6 women included at each of the 3 time periods, a total of 18 in each strand.
In the main study, 89 women volunteered to participate but 11 did not meet the criteria and were not interviewed; one was excluded because of a pending legal case, 3 because their children exceeded the age criteria and 7 because they had no disability or mental health difficulty. Thus, 78 women who faced ability challenges were interviewed, 18 each in the physical, vision and hearing impairment groups, 20 in the mental health and 4 in the intellectual disability group. One woman from the mental health strand was interviewed 3 times, at her request, and one from the intellectual disability strand was interviewed twice (chapter 1, section 1.2.), which resulted in a total of 81 interviews. Twenty (25%) of the interviews were conducted during pregnancy, 30 (37%) during the immediate postnatal period and the remaining 31 (38%) in early motherhood.
A total of 656 people were invited to participate in the 4 multidisciplinary focus groups around the country, resulting in the attendance of 19 people (Table 7). Invitations were sent to 227 people to participate in the Dublin focus group; 40 persons sent their apologies and nobody attended on the particular day. A second focus group was arranged for Dublin, 92 health professionals were invited, 11 people sent their apologies and 9 people attended. Information on numbers attending the remaining 3 multidisciplinary focus groups are included in Table 8. Where key informants indicated that they were interested in taking part but were unable to attend the group on the day chosen, telephone interviews were undertaken (n=2). Two people also provided information by e-mail.
|
Galway |
Dublin (1st) |
Dublin (2nd) |
Donegal |
Waterford |
Total |
|
|---|---|---|---|---|---|---|
| Invited to participate |
97 |
227 |
92 |
133 |
107 |
656 |
| Sent apologies |
14 |
40 |
11 |
12 |
30 |
107 |
| Attended |
2 |
0 |
9 |
6 |
2 |
19 |
| Total |
2 (2.1%) |
0 |
9 (9.8%) |
6 (4.5%) |
2 (1.9%) |
19 (2.9%) |
Six people were invited to participate in the focus group in Dublin, 1 sent apologies and 4 attended. A request was sent to intellectual disability service managers in another area, to arrange a second focus group, without response within the study's timeline.
Three people were invited to participate in the mental health focus group held in Donegal, and all 3 attended.
In total, 26 people attended a focus group, 2 were interviewed by telephone and 2 contributed their response by e-mail (total 30). The breakdown of types of personnel included are shown in Table 8, with midwives, including Directors of Nursing and Midwifery, making up the largest single professional group involved (n=14, 47%).
|
Personnel |
Number (%) |
|---|---|
| Midwives |
5 (17%) |
| Maternity care assistant |
3 (10%) |
| Obstetrician |
1 (3%) |
| Paediatrician |
1 (3%) |
| Medical social worker |
2 (7%) |
| Physiotherapist |
2 (7%) |
| Psychiatrist |
0 |
| Directors of Nursing/Midwifery |
5 (17%) |
| Mental health specialists |
4 (13%) |
| Public health nurses |
3 (10%) |
| Intellectual disability specialists |
4 (13%) |
| Total |
30 |
A small pilot study of the individual interviews, involving 4 women (2 women with a physical disability, 1 with a vision impairment and 1 with mental health difficulties), took place. The contact methods, consent procedures and draft interview schedule were tested and researchers developed familiarity with the tools and process. Small changes were made to the interview schedule in preparation for the main study. In general, data from this pilot were not used in the final analysis, but one exemplar is quoted from the woman with a mental health difficulty as her experience added useful information to the findings.
Demographic data (age, education, ethnicity etc.) were, with participants' consent, collected at the first interview to assess the socio-economic and geographical spread of participants.
A flexible interview guide, developed from a comprehensive literature review, and modified in response to individual and group specific needs, was used (Appendix 4). Positively phrased open questions, paraphrases and prompts were used in addition to elicit maximum information from the women and seek clarity.
Interviews were conducted by team members, all of whom were experienced researchers with specific expertise in the areas of midwifery, mental health and intellectual disability, and were digitally recorded (with the women's consent) and transcribed. The face-to-face interviews provided high-quality, in-depth data, with rich, personal detail.
Women were interviewed in their own homes or at an agreed, accessible venue (hotel, health centre, maternity centre etc.) at a time of their choosing. The duration and format was woman-led and interviews lasted from to 30-90 minutes, with a mean of 54.83 minutes, (SD15.60). The language used was adapted to be understood by the individual. Communication aids, as appropriate, included: written, Irish Sign Language, symbols and pictures. Women with a hearing impairment were offered the opportunity to have a sign language interpreter present for the duration of the interview and 9 women availed of this opportunity. Each woman was interviewed once but women who were pregnant at the point of recruitment were invited to participate in subsequent interviews either within 6 months of the birth or 2 years following the birth.
The interviews commenced with a brief re-introduction of the topic and obtaining written consent from the participant. Then the opening question was asked and the interview continued and was led by the participant. Subsequent interviews were informed by ongoing data collection and analysis (Glaser, 2005).
A flexible interview guide, developed from the literature and policy document reviews, and modified in response to the results of the telephone survey of all maternity hospitals (Begley et al, 2009b), was used (Appendix 5). Positively phrased open questions, paraphrases and prompts were used to elicit maximum information and seek clarity from the participants. Attention was paid to the participants' non-verbal cues to ensure they were comfortable and the moderators ensured that all had the opportunity to take part in the discussion
Six focus groups were conducted, lasting from 60 minutes to 90 minutes (mean 64 minutes, SD 5.47minutes). The venues were all located in maternity units/hospitals in the different regions and light refreshments were offered to participants on arrival. The seating was arranged in a circle to maximise participation, and the recording device was placed in the centre. The discussion commenced with an icebreaker, a brief introduction from the researchers and participants, a reminder of the topic and purpose of the session and obtaining written consent from all participants. The opening question was then asked and the discussion continued, with prompts and/or comments posed by the researchers as necessary. When all components of the interview guide had been covered, the moderator asked for any last comments and then drew the session to a close, thanking all participants for their contributions. Follow-up telephone interviews were conducted with some key individuals who were unable to attend the focus groups, and other participants gave their views on the draft findings of the focus groups by e-mail.
All data from the individual interviews and focus groups were transcribed in full and any names that could identify the participant were removed. To ensure accuracy during the transcribing process the digitally recorded interview and written transcript were listened to, and read, simultaneously a number of times. The computer software package NVivo 8 was used to assist in the management of the qualitative data and SPSS (Statistical Package for Social Scientists) to conduct descriptive analysis on the demographic data. Written transcripts were examined systematically, and coded line by line. Categories of analysis were developed, from which the main themes emerged. When a number of interviews were completed from each strand of the study, the transcripts were examined by other members of the research team. Themes emerging following this analysis were then compared to those that were generated by the research assistants, in the process of peer debriefing. The themes were generally consistent and consensus was reached.
The methods used to enhance the robustness of the study included using data collection from multiple sources, the constant comparative method process (comparing each interview with previous interviews, and each emerging category with previous ones, which ensures that new data collection is more targeted as the process continues), and the use of women's narratives to substantiate claims made about data (Beck, 1992; Jasper, 1994). 'Negative' case analysis (highlighting any comments that are in disagreement with the prevailing trend) and peer debriefing (disinterested researchers reviewing transcripts 'blind' and comparing with the initial researcher's view) (Denzin and Lincoln, 2005; Holloway and Wheeler, 2002) were also employed. In keeping with the idea of women as experts in, and owners of, their own experience, the emerging themes, interpretations and a synopsis of the final report were sent to all women and focus group participants, if they requested it at the time of interview. Reliability (or auditability) was achieved by inclusion of a systematic account of examples of the data analysis process (Hall and Callery, 2001) in the appendices of this report (Appendix 6).
The involvement in this study of perceived vulnerable groups of people required particular consideration. It is acknowledged by the research team that avoidance of harm requires the researcher to strike a balance between the rights of the women, the risk of exploitation and the wider purposes of the research. It is argued that involving those most affected by an issue in qualitative research is an ethically appropriate way to proceed, as it promotes their interest by maximising autonomy in the research process and illuminates aspects of care that might otherwise be hidden.
Ethical approval for the study was received from the Research Ethics Committee of the Faculty of Health Sciences, Trinity College Dublin on 9th November 2007. In addition, ethical approval was required and obtained from the 3 study sites.
All team members conducting individual interviews had obtained the usual Garda clearance checks required for health professionals, particularly in relation to child protection issues and were bound by national and international codes of good practice in research, and by professional standards within nursing and midwifery. In addition, all interviewers were provided with appropriate disability equality training prior to undertaking the relevant interviews. The rights and dignity of women were respected throughout by adherence to models of good practice related to recruitment, voluntary inclusion, informed consent, privacy, confidentiality and notice of withdrawal without prejudice.
The prevention of psychological harm and the physical well-being of the women were also considered in all aspects of the study. At all times their well-being took priority over the research study - if a participant became upset, the interview was stopped and only continued if the participant preferred to continue. In addition, the name and contact details of people within the service who were willing to give follow up emotional support were given to women, if required, in addition to an information sheet of contact details for support groups, services, web-site information etc., relevant to their particular circumstances. The team had access to a registered clinical psychologist who acted as a mechanism of referral for any woman who might require such a service; this service was not, in fact, required.
Consent was viewed as an ongoing process, which was re-negotiated at all stages of the interview process. Each woman partaking in the individual interviews was asked to sign a consent form prior to the interview, consenting to be interviewed, the interview being digitally-recorded and for the data to be used in publications arising from the study. A copy of their consent form was offered to all participants and given to those who wished to keep it. The same process was followed for all participants in the focus groups. Ground rules such as group confidentiality were also negotiated at the start of the focus group interviews.
The recordings, transcripts and questionnaires were given code numbers, prior to submission to the transcriber (who also signed a confidentiality agreement). The code numbers were employed to protect the identity of participants in the final report. The master list of participants' names with these numeric identifiers was stored securely away from all other data. Data held on computer were password protected and stored in accordance with the Data Protection (Amendment) Act 2003.
It was accepted that women with intellectual disabilities might wish to be accompanied by an advocate, to facilitate them in arriving at an informed decision regarding participation; all 4 of the participants availed of this opportunity. Women and their advocates were informed of the passive role of the advocate once consent was obtained. It was recognised that some women with intellectual disabilities might benefit from counselling services as a result of issues, such as the baby being taken from them, that could emerge during the course of the research process. The research team ensured that an appropriate counselling service was available for women with intellectual disabilities, and each woman was informed of the availability of this service prior to interview. None of the women required this service following interview. The research was conducted at all times in terms that women understood.
The usual 'lone researcher' safety steps were taken for all interviews (researcher carries a mobile, another person is aware of their whereabouts, researcher 'calls in' prior to and at the end of the interview). Psychological support in the form of debriefing was available for all researchers and the transcriber, if it was necessary.
The study began on 10th March 2008 and recruitment ceased on 10th November 2009, with 78 women included. A total of 81 individual interviews, 4 focus groups with multidisciplinary health professionals, one with mental healthcare professionals and one with key personnel in the intellectual disability services were undertaken.