- Email: [email protected]
Normalising birth for women with a disability: The challenges facing practitioners
Midwifery 29 (2013) 294–299
Contents lists available at SciVerse ScienceDirect
Midwifery journal homepage: www.elsevier.com/midw
Normalising birth for women with a disability: The challenges facing practitioners Dympna Walsh-Gallagher, PhD, MSc, Postgraduate Diploma in Education, RNT, BSc (hons), RGN, RNID RGNa,n, Roy Mc Conkey, BA, PhD. (Professor of Learning Disability)a, Marlene Sinclair, BSc (Hons) RN RM RNT, PhD, MEd, Postgraduate Diploma in Education (Professor of Midwifery Research)a, Ruth Clarke (Clinical Expert Advisor)b a b
St. John’s; Donegal Rd., Ballybofey, Lifford, Co. Donegal, Republic of Ireland Royal Jubilee Maternity Hospital, Belfast, Ireland
a r t i c l e i n f o
a b s t r a c t
Article history: Received 11 March 2011 Received in revised form 5 October 2011 Accepted 16 October 2011
Previous research on pregnant women with a disability and their experience of maternity care demonstrated that these mothers perceived themselves to be the ‘perennial outsiders’ with midwives automatically categorising them as ‘high risk’ because of their disability. They also felt that their ability to make choices, stay in control and have continuity of care was not considered to be part of the mainstream maternity care for them because they did not fit the ‘normal’ category. Objective: this research was undertaken to explore the perceptions of two multiprofessional teams in Irish hospitals as to how maternity services to these mothers can be improved. Participants: nineteen health-care professionals from midwifery, social work and public health nursing were recruited. Setting: two from two major maternity hospitals, one in the North and one in the South of Ireland. were featured. Design: the method chosen was a qualitative approach, using focus group interviews in which case studies depicting a range and breadth of women’s birthing experiences were presented and discussed. Newell and Burnard’s (2006) six stage approach to thematic content analysis was used. Findings: the professionals found the disabled women’s stories believable, upsetting and challenging. Key conclusions: Staff acknowledged their ‘lack of competence, knowledge and skill’ regarding disability and felt that, on reflection, their failure to consult and collaborate with disabled women contributed to their failing to provide individualised woman centred care to women with a disability. Implications of practice: A series of recommendations for improved practice was agreed. & 2011 Elsevier Ltd. All rights reserved.
Keywords: Maternity care Pregnant with a disability Normalising birth Birthing experience
Introduction Disability has been defined as a consequence of impairments, physical, sensory and intellectual, which affect a person’s ability to perform normal day to day activities (World Health Organisation, 2001). By contrast the social model of disability views it as a consequence of organisational, attitudinal and environmental barriers, which severely limit an impaired person’s participation in society (Thomas and Curtis, 1997). The International Classification of Functioning (World Health Organisation, 2001) embraces both perspectives and provides a framework for optimising as well as assessing a persons participation in ordinary activities. For disabled women this includes child birth.
n
Corresponding author. Current address: Angela’s College, Sligo, Ireland. E-mail address: [email protected] (D. Walsh-Gallagher).
0266-6138/$ - see front matter & 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.midw.2011.10.007
However, there is strong evidence to suggest that the nondisabled population, inclusive of health-care professionals and across the generation gap, have reservations about disabled women becoming mothers (Ash and Fine, 1998; Neville-Jan, 2004). As a group, these women have traditionally been discouraged or even denied the opportunity to bear and rear children (Nosek et al., 2001). Moreover the assumption that disability is a medical condition requiring specialised intervention has profoundly affected the healthcare provided to disabled women, especially in relation to pregnancy and child birth. This minority group is often deemed ‘abnormal’ and consequently, they are likely to be regarded as problematic and in some cases, ‘incompetent’ with regard to having a normal birth and becoming a good mother. Health-care providers who are poorly educated in disability awareness and with minimal relevant training, are ill-equipped to serve the needs and expectations of women with disabilities (Campion, 1990; Kallianes and
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
Rubenfeld, 1997). Consequently, these mothers are perceived as ‘high risk’ and are not offered the same opportunities as their able bodied peers to achieve their optimum birthing experience. Reports continue to be published of disabled women being ‘marginalised’ whilst accessing maternity services and not having their ‘specific and individual’ requirements met, regardless of their level of functioning and aspirations (Aunos and Feldman, 2002; Prilleltensky, 2003; Mac Kay-Moffat, 2007; Walsh et al., this issue). In particular, mothers report that they are subject to constant surveillance (Shackleton and Godard, 1997; Tymchuk, 1999; Walsh et al., this issue) and the custodial rights of mothers with disabilities are frequently questioned before and after birth. Indeed, professional bodies have recognised that modern maternity services are failing to provide the specialist services required by these mothers to enable them to have the much desired ‘woman-centred-care’ (RCM, 2000). Royal College of Midwives (2000), published guidelines advising all midwives with regard to supporting mothers with disabilities. Midwives are advised to know their responsibilities under the Disability Discrimination Act (2005) and to provide flexible, creative and innovative midwifery care to meet individual needs, including choice, control and continuity of care for all women. In its document ‘Maternity Matters’, Department of Health (2007) the UK Government outlines its policy commitment to providing all pregnant women with appropriate and specialist services. However, there is little literature to identify the impact these initiatives have had on midwifery practice. It was against this background that the current research was undertaken and it provides one of the first significant publications in this area. The aim of this study was to gain an insight into the professional barriers to the provision of a normal birth for women with disabilities and how these barriers might be reduced. A particular focus was on the professionals’ views of disabled women making choices, of their being in control and the provision of continuity of care during and after their childbirth experiences. The study drew on the experiences of front line staff, primarily midwives, working in a large maternity hospital in Northern Ireland, which comes under the British National Health Service and another comparable hospital in the Republic of Ireland, which has more devolved service policies and practices. The 19 participants in the study were provided with the main themes arising from the interviews with disabled mothers and illustrated, using anonymous case studies of disabled women’s experiences of ‘high risk’ birth in their respective maternity services (Walsh-Gallagher et al., 2011). They were eager for their stories to be heard and to serve as a catalyst for service reform. The women in the study had congenital and acquired impairments. They included: mild intellectual disability (n¼5); status epilepsy (n¼4); total visual impairment (n¼ 2); mild intellectual disability and visual impairment (n¼1); multiple sclerosis (n¼ 1); spinabifida and hydrocephalus (n¼1); brain tumour (n¼1); cerebral palsy (n¼ 1) and motor neurone disease (n¼1). Their ages ranged from 17–40 years. Extracts from the case studies were used with participants to stimulate discussion and reflection on current practices and, more importantly, to explore how the maternity services in both countries could be developed to improve the future experiences of disabled women entering their respective systems.
295
through contact with the clinical expert adviser to the Department of Health and one in the Republic of Ireland. Following telephone negotiations with the head of maternity services for each hospital, 19 health-care professionals, were recruited for this study; 11 and eight in each of the two respective hospitals. Focus group One comprised: 1 ward manager, 1 discharge co-ordinator (attached to hospital/community); 1 ward Sister (maternity outpatients department); 1 ward Sister; 3 midwives, 2 social workers, 1 trainee social worker (hospital); 1 practice educator (neonatal intensive care unit). Excluding the trainee, their years of practice ranged from 5–30 years. Focus group Two comprised: 1 clinical midwife specialist (attached to fetal assessment unit); 2 midwives (maternity ward); 1 manager, 1 midwife (delivery unit); 1 social worker (hospital); 2 public health nurses/health visitors (community). Their years of practice ranged from 2–27 years. GPs doctors, gynaecologists and obstetricians were invited to participate in the study, but all declined to do so. Procedure Focus group interviews were conducted in each of the participating hospitals, with one author as facilitator (DWG) and another as note-taker (MS). Participants on duty were released for the interview; those off duty got time off in lieu. Participation was entirely voluntary. After introductions, the first author summarised the main findings from 17 disabled women’s experiences of accessing maternity services within the respective units, collected as part of a doctoral thesis (Walsh-Gallagher, 2009), Extensive use was made of direct quotations to illustrate the main themes. These were presented visually and read aloud. The women were each given a coded identity and their individual care was not discussed. Fig. 1 summarises the findings presented to the groups. Open ended questions were used in the second part of the sessions to explore participants’ perspectives around the women’s experiences of their ante, intra and postnatal care and how they, as carers, felt the women’s experiences could have been improved. In addition, a comment sheet was given to all the participants so that they could communicate in confidence any further insights or reflections to the research team. This served to counterbalance possible monopolisation of the discussion by dominant personalities and to counteract possible pressure for conformity among participants in the group. These sheets were anonymous and left in a pigeon hole within the hospital for the
Methods Ethical issues and recruitment of sample Ethical permission was requested and obtained from University of Ulster Research Committee. Access to participants was gained to two major maternity hospitals, one in Northern Ireland, facilitated
Fig. 1. Diagrammatic representation of the findings, suggesting improvements to service provision.
296
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
researcher to collect, with a two week time deadline for their return. Five responses with incisive comments were received. Data analysis The facilitator and the note-taker summarised and agreed the main themes emerging from the discussions with the participants at the end of each focus group. The group discussions were audio recorded and later transcribed verbatim. They were then analysed, using Newell and Burnard’s (2006) six stage approach to thematic content analysis. This involved six steps: memo writing throughout the focus group, reading of transcripts and making general notes, re-reading of transcripts and conduct coding of categories, collapsing codes into higher order categories, revisiting the data with higher order categories and collating the data for presentation. These analyses largely confirmed the summaries agreed at the two groups but allowed for a richer account to be developed from the main themes. At the end of each focus group, all participants confirmed the themes and later, an independent researcher (J.S.), together with supervisor (R.McC), checked the audit trail and procedures and validated the findings. Of particular note is that the same themes arose in both groups, despite being drawn from two different hospital systems. In part, this may have arisen as the focus of discussion was on mother–professional contacts rather than management and service issues.
Findings As Fig. 1 shows, disabled pregnant women encountered many barriers which prevented them from having a positive pregnancy, birthing and motherhood experience. These difficulties ranged from simple adaptation issues to more complex attitudinal ones with the latter based on professionals’ negative presumptions, possibly arising from their ignorance and lack of education and training in disability awareness. One consequence was that these women were excluded from an individualised plan of care (Walsh et al., this issue). Fig. 1 also summarises the four main themes that emerged from the analysis of the two focus groups. Professionals’ ambivalent attitudes Reflecting on their experiences of providing maternity care to disabled women, the professionals reported feelings of disappointment that women who had accessed their maternity services could have such negative memories of their maternity care provision, but they admitted their stories ‘rang’ true: I suppose it’s so disappointing really. The negative impressionsy (P1FG2) ysome of the quotes, when they are all played back to you, are quite shockingy (P2FG1) However, the professionals asserted that their attitudes were generally positive and very supportive towards women with a disability accessing their maternity care services: ywe take very much a multi disciplinary approach, where, you know, where we’re meeting the mumyand assessing her needsy (P2FG1) And certainly, if there was a need for, say, one to one antenatal classes or whatever, you know, that again, that has been facilitated as welly (P4FG2) I suppose you will have professional concerns aroundy how can we best serve the mother and the babyy (P5FG1)
However, despite these positive expressions towards women with a disability and their aspiration of providing high quality maternity care to them, many of the professionals stated that they were not surprised by many of the negative comments arising from women’s birthing experiences. Some even ‘normalised’ the lonely and isolated birth experience as common, in many cases, to both ‘normal’ and disabled: yyou would probably find that people like the ‘normal’ women still experience a lonely childbirth even though the room would be full of people. So that may not be totally uncommon. (P4FG1) Later, one midwife expressed her belief that a woman with a disability could yet have a normal pregnancy: You could argue that these women are not normal, because of their disability, but their pregnancies arey (i.e. normal) (P2FG1) This perception of abnormality can account for the offensive remarks, reported by some mothers, especially when the midwife is under pressure, and these may go unchallenged by other colleagues. The midwives accepted that such a scenario is inexcusable, but said it was the reality of their everyday work: But the reality is that it probably does happen, it’s not really a surprise to hear ity (P1FG1) ywe can be unkind and it doesn’t matter if you are disabled or not ywe sit here and say we are shocked and all that and to be honest (pause) we need to say, ‘yeah (lowers tone of voice) we are like that, some of the times’. And we know people who are like that and we don’t always challenge them eithery (P6FG1) Lack of knowledge about disabilities The second theme that emerged from the focus group interviews was lack of knowledge about disabilities and the presumption of inadequacy that accompanied this. Participants also concurred with disabled women’s comments about themselves and their need to prove to staff that they were twice as good as their non-disabled peers with regard to their capabilities of becoming mothers and being mothers: You know, maybe disabled women have to prove themselves as twice as good of mothers. And may have come from a lifetime of having to do better and better. It’s hard to get away from that too! (P2FG1) I think that’s something that is ingrained through years and years of limitation on what they could do and people telling them what they could do and the institutionalised. There’s a whole lot of factors there (P2FG2) Professionals were concerned about their lack of knowledge and experience in some aspects of care provision and openly acknowledged their lack of education and training and that they held stereotypical views: I think it’s a human thing is that, people, when people are confronted with a disability as to whatever it is, even as professionals they have a difficulty. People have a difficulty with ity (P4FG1) yIt’s human nature, sometimes to be at a loss maybe, as to how to deal with the women because of their disabilityy we should still be professional in our manner even if we don’t fully understand how to deal with these womeny (P3FG1)
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
The consultant gynaecologist or the midwife may have little or no knowledge of a particular disability: That person (midwife) might have never looked after somebody with total visual impairment, you know, and it might be difficult for them too! (P7FG2) The need for staff education in relation to disability awareness was further emphasised in the comment sheets: it is difficult to provide education to all staff about all ranges of disabilities. However, there should be an awareness that anyone with a disability needs to have a sympathetic approach (extended to him/her) when dealing with difficult/sensitive issuesy (C.1) The midwives claimed that their disability awareness training was outdated, too general and inappropriate to the specific needs of disabled, pregnant women. It also tended to be randomly administered: I believe that there is a need for practical information and advice to be tailored to individual women’s needsyeducation and training would raise midwives’ awareness of women’s needs with a disability (C.4) yanother down sideythe difference between Hospital X and Hospital Y is the public health nurses/health visitors haven’t training in the use of theypost natal depression skill tool and the counselling that’s required afterwards, whereas in Hospital Z theyyhave all received trainingy (P7FG2) Lack of effective communication Lack of effective communication formed the third theme. Professionals in both focus groups either overtly or implicitly indicated that effective communication both interdisciplinary and with the pregnant women in their care, should, from the initial point of contact, inform key elements in the provision of quality ante, intra and postnatal care. This did not always happen: ywe’re reliant on their (the women’s) G.P.’s and what the referral letter would sayyand thenythe booking process with the midwifeyand then the consultantyas to their additional needs. (P4FG1) yIt’s very important that yonce the booking visit is done that there’s a knock on notification to everybody involved (regarding the women’s additional needs)y (P3FG2) Following from this, in the discussions came the realisation of the need to include the disabled women themselves in their ‘plan of care’ for pregnancy, childbirth and postnatal care: yany disabled mother should have an individualised plan of care for her pregnancy, labour, delivery and postnatal care (C.3) The views of women with a disability can only be of benefit with the planning and implementation of maternity services (C.1) Nevertheless, professionals believed that ineffective and poor communication skills are the ‘biggest reason for complaints’:
297
Lack of resources The lack of resources was the final theme identified by the participants. They were generally concerned about how the services and they themselves as professionals were being ‘stretched’ to the limit due to inadequate funding: ywe do the best we can, but it’s just what we’ve got in our environmentythere has even been the hiring of a hoist for women during their pregnancy, for the bath. I mean the adaptations are made as they arise. (P1FG1) We do have disabled car parking at the front of the hospital, but a few car parking spaces are not enough’’ (with reference to the use of these spaces by others, apart from pregnant women). (P2FG1) But funding is never prioritised for it (education and training) or, if it is, it’s taken awayy so, while we see a lot of deficits, you know, it’s not always our fault, it’s the way it isy (P4FG2) Some antenatal clinics and postnatal wards were located in old buildings, whose design made adaptations for disabilities extremely difficult: ythis is an old building and it wasn’t meant for wheelchairs at all, so we’re having to make do and we are trying to adapt an older building with narrower doors, you don’t have areas that are wheelchair friendly or for any kind of disability. You need extra space even to assist people. y yes, some places it’s impossible to change because of the building. (P4FG1) They reported that they were so overworked that sometimes they were unable to complete their assessments and lived in fear of making mistakes: The services just don’t stretchywe can be at breaking pointy (P2FG2) They reported that because of insufficient time and training, which was poorly regulated, postnatal visits were generally cursory. There was little time to complete the postnatal anti-depression questionnaire and often there was no time to observe the ‘new mother’ and assess her physically and mentally, even if they had been trained to do so: ybecause midwives didn’t pick it up that she was sufferingy Not just documentation. It’s about looking around and having time for the woman. Sitting down and really analysing her answers. That’s what should be getting done but we just don’t have the timey (P3FG2) Professionals, with minimal resources, lacked confidence in their ability to meet disabled pregnant women’s requirements: It’s very difficult for a system that is geared for 99% of sighted women and not very many women coming through that are blind. So, how do we adapt things like appointments to give her in Braille? I do think it’s terrible that we do have things like videos y (referring to a midwife who gave a blind woman a video to help prepare her for giving birth). (P4FG1) Suggestions from the professionals
I suppose communication is the big thing really. Isn’t it? And the lack of communication when, you’re looking at it now in front of you in writingyit’s the big thing reallyy (P1FG2) I also do think that, em, the biggest reason for complaints is y the staff attitude and the way they communicatey So we are obviously not communicating any better with the disabled, than we are with other patients. (P2FG1)
Towards the end of the focus group sessions, participants were invited to note the recommendations they would propose for improving practice in their hospital. The suggestions were:
The standardised maternity record should make provision for entering information concerning the pre, peri and postnatal
298
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
needs of every woman with a disability and for assessing her capabilities and coping mechanisms. Update the current information booklet to indicate the availability and location of disabled parking spaces at the hospital. Make all maternity care information available in Braille, audio, video, web and phone. Staff in one hospital alluded to a proposed purpose built, disability friendly maternity unit that would enable them to enhance the quality of service provided to women with a disability.
Discussion This study is limited in a number of respects: it involved a small number of midwives and social work staff working in two maternity hospitals in Ireland. The views and experiences of the medical team were not included, as they did not attend, so the findings must be viewed cautiously. However, the themes that emerged are ones that are already highlighted in policy statements around improved provision for people with a disability, and they indicate that in maternity services provision, inequitable care and staff attitudinal problems persist. It is also important to note that some staff stated: ‘the numbers of women with disabilities are too small to require major change in service provision’ but we would argue strongly that this position is not acceptable. Even if the numbers of pregnant women who have a disability are small and their impact relatively insignificant, making it easy to discount them in a service that is struggling to deliver mainstream, regulated standards of care to all women, ethically, those who are most vulnerable require targeted and ring-fenced resources. With changing aspirations, the growth of new technologies and more sophisticated treatments, the numbers of women with disabilities, accessing maternity services, will increase, not decrease (Conley-Jung and Olkin, 2001; Prilleltensky, 2003). Perceptions of disability Disabled women interviewed by Walsh et al. (this issue) believed that many of those delivering care did not appear to understand disability and the inherent normality experienced by those who live every day of their lives with a disability. For these women, pregnancy was a normal event and they expected to be given choices, control and continuity of care within the maternity services and be treated equitably, like their ‘normal’ peers. However, they encountered barriers both physical and attitudinal, which prevented them from having a positive pregnancy, birth and motherhood experience. This experience appears to be widespread throughout current maternity services across different countries (Toms Barker and Maralani, 1997; Prilleltensky, 2003; Mac Kay-Moffat, 2007). Professionals, for their part, viewed the women as liabilities and their pregnancies as ‘high risk’ and hence, the latter were not given the opportunity to follow a ‘normal birth-care’ pathway. This further precludes midwives from learning how normal birth-care pathways can be adapted to suit the needs of this client group in accord with the requirements of the Disability Discrimination Act (2005). In addition, physically enabling facilities for pregnant women with disabilities were found to be minimal or almost non-existent in hospitals on both parts of Ireland. Shackle (1994) and Lee and Oh (2005) reported similar findings. In sum, mothers with disabilities were dependent on care provision unsuited to their needs and on carers who, by virtue of their lack of competence, knowledge and skill regarding disability, felt incapable of meeting those needs.
Professional practice Professionals admitted that these women largely gave a ‘true and honest’ account of their service provision and tended to excuse its limitations rather than deny the women’s experiences. Staff blamed the ‘reality of their everyday work’ for what could be termed ‘totally unacceptable professional behaviour’. Unacceptable practice and abusive behaviour were partially attributed to work pressure, but, more fundamentally, could arise from prejudiced perceptions. Rudeness or offensiveness often went unchallenged among colleagues. Individuals, however, recognised that they should be professional in their manner. Staff acknowledgement of such unacceptable professional behaviour as part of their practice has rarely been reported in the literature. The Changing Childbirth Report (Department of Health, 1993, p. 53) highlighted the potential for ‘the prejudice and ignorance of the able-bodied professionals’ to constitute ‘daunting barriers’ for disabled women. Yet, ingrained and long established societal attitudes still appear to underlie professionals’ inappropriate management of the care provided to women with disabilities. These women were not perceived to be ‘normal’ mothers and their pregnancies were labelled as high risk for the mother and the baby, so, they were deemed ineligible for ‘midwifery led care’ irrespective of whether they had previously delivered successfully. This meant that unlike ‘normal’ women, they perceived that they had very little or no control over decisions relating to their ante, intra and postnatal care. This is despite The ‘Maternity Matters’ Report (Department of Health, 2007), which explicitly confirmed that women should be the focus of maternity care, with an emphasis on providing choice, easy access and continuity of care. Although in-service education about disability was offered in both countries, it was viewed as too general and non-specific in relation to maternity services. Professionals, in consequence, reported that their ability to provide appropriate woman centred care for disabled mothers was severely hampered by their lack of training and education. Similar findings were reported by Culley and Genders (1999) and Mac Kay-Moffat and Cunningham (2006). Therefore, a real commitment is needed to delivering high quality training opportunities in disability awareness within a nationally recognised accredited training programme for maternity care professionals. Modern curriculum planning for health-care professions would benefit from the involvement of women with disabilities at the table, discussing the planning of the basic training, including course design, content and evaluation. Moreover, Saxton (1996) and Becker et al. (1997) argue that increasing the number of women with disabilities who are themselves healthcare providers will heighten professionals’ sensitivity to disabled women’s perspectives on maternity care provision and lead to change both within and without the traditional health-care system. Yet to date no guidance identifies the need to include women with a disability in the maternity services liaison committees (designed to improve service provision and the pregnancy and childbirth experience), that have been established in the UK. In summary, this study demonstrated a serious lack of communication, inflexible regimes, lack of support and non-individualised care programmes for pregnant women with disabilities within two large maternity hospitals that may be atypical of others in the UK and Ireland, but we suspect they are not. Professional and statutory bodies may find challenges ahead, if women with disabilities claim discrimination or inhumane treatment, and we believe due care and consideration need to be given to the, albeit, limited findings of this research study. Nonetheless we were pleased to note staff acknowledgement of their need to change and fully support their emphasis on the need for adequate resources to achieve this (see Fig. 1).
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
Improving practice Overall, the findings indicated a predominantly medicalised agenda, with the professionals, accordingly, in control of maternity care delivery throughout. The health and social care professionals’ inadequate and fragmented education and training in relation to disabilities left them unprepared and ill equipped to empathise with and to meet the many and varied requirements, holistically, of disabled pregnant women. There is an urgent need for the development of protocols for health service providers to ensure that pregnant women with disabilities have access to appropriate support and maternity treatment. The involvement of disabled women in this initiative would help bring this about. Within the midwifery care services, professionals should respect their clients’ individuality, seeing them as women first, disabled second. When this happens, the pregnant woman, as pivot of a joint maternity care plan, can receive the necessary support to grow in confidence and competence while taking control of her pregnancy, birthing and motherhood. Further research is required to ascertain a deeper understanding of how all relevant professionals such as G.P.s, midwives, obstetricians, social workers and public health nurses/health visitors make decisions with regard to caring strategies for women who are pregnant and for mothers who are living with a disability. An effective multi-disciplinary referral mechanism needs to be established to ensure continuity of care. References Ash, A., Fine, M., 1998. Women with Disabilities: Essays in Psychology, Culture and Politics. Temple University Press, Philadelphia. Aunos, S.M., Feldman, M.A., 2002. Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 15, 285–296. Becker, H., Stuifberger, A., Tinkle, M., 1997. Reproductive health care experiences of women with disabilities: a qualitative study. Journal of Physical Medical Rehabilitation 78, 26–33. Campion, M.J., 1990. The Baby Challenge. A Handbook on Pregnancy for Women with a Physical Disability. Routledge, London. Conley-Jung, C., Olkin, R., 2001. Mothers with visual impairments or blindness raising young children. Journal of Visual Impairment and Blindness 91 (1), 14–29.
299
Culley, L., Genders, N., 1999. Parenting by people with learning disabilities: the educational needs of the community nurse. Nurse Education Today 19, 502–508. Department of Health, 1993. Changing Childbirth. Report of the Expert Maternity Group. HMSO, London. Department of Health, 2007. Maternity Matters: Choice, Access and Continuity of Care in a Safe Service. NHS. Disability Discrimination Act, 2005. London: HMSO. Kallianes, V., Rubenfeld, P., 1997. Disabled women and reproductive rights. Disability and Society 12 (2), 203–221. Lee, E.K.O., Oh, H., 2005. A wise wife and good mother: reproductive health and maternity among women with disability in South Korea. Sexuality and Disability 23 (3), 121–144. Mac Kay-Moffat, S., 2007. Disability in Pregnancy and Childbirth. Churchill Livingstone, London. Mac Kay-Moffat, S., Cunningham, C., 2006. Services for women with disabilities: mothers’ and midwives’ experiences. British Journal of Midwifery 14 (8), 472–477. Neville-Jan, A., 2004. Selling your soul to the devil: an autoethnography of pain, pleasure and the quest for a child. Disability and Society 19 (2), 113–127. Newell, P., Burnard, P., 2006. Introduction to Nursing Research: Incorporating Evidence Based Practice. Blackwell Publishing, London. Nosek, M.A., Howland, B.A., Rinalta, D.H., Young, M.M., Chanpong, M.S., 2001. National Study of Women with Physical Disabilities: Achieving and Maintaining Health and Wellbeing. Prilleltensky, O., 2003. A ramp to motherhood: the experiences of mothers with physical disabilities. Sexuality and Disability 21 (1), 21–47. Royal College of Midwives, 2000. Maternity care for women with disabilities. Stationary Office, RCM, London. Saxton, M., 1996. Teaching providers to become our allies. In: Krotoski, D.M., Nosek, M.A., Tuurk, M.A. (Eds.), Women with Physical Disabilities, Brookes, Baltimore. Shackle, M., 1994. I thought I was the only one. A Report from a Conference ‘Disabled People, Pregnancy and Early Parenthood’. Part of the Maternity Alliance Working Group Pack. Maternity Alliance, London. Shackleton, P., Godard, L., 1997. Pregnancy and disability. Birth Issues 6 (4), 5–10. Thomas, C., Curtis, P., 1997. Having a baby: some disabled women’s reproductive experiences. Midwifery 13, 202–209. Toms Barker, L.T., Maralani, V., 1997. Challenges and Strategies of Disabled Parents: Findings from a National Survey of Parents with Disabilities. Berkely Planning Associates, Oakland. Tymchuk, A.J., 1999. Moving towards integration of services for parents with intellectual disabilities. Journal of Intellectual Disabilities 24 (1), 59–74. Walsh-Gallagher, D., 2009. The Lived Experiences of Women with Disabilities facing the Challenges of Pregnancy, Childbirth and Motherhood (2009): An Interpretative Phenomenological Study’. Walsh, D., Sinclair, M., McConkey, R. The ambiguity of disabled women’s experiences of pregnancy, childbirth and motherhood: a phenomenological study. Midwifery, doi 10.1016/j.midw.2011.01.003, in press. World Health Organisation, 2001. International Classification of Functioning, Disability and Health. WHO, Geneva, Switzerland.
Contents lists available at SciVerse ScienceDirect
Midwifery journal homepage: www.elsevier.com/midw
Normalising birth for women with a disability: The challenges facing practitioners Dympna Walsh-Gallagher, PhD, MSc, Postgraduate Diploma in Education, RNT, BSc (hons), RGN, RNID RGNa,n, Roy Mc Conkey, BA, PhD. (Professor of Learning Disability)a, Marlene Sinclair, BSc (Hons) RN RM RNT, PhD, MEd, Postgraduate Diploma in Education (Professor of Midwifery Research)a, Ruth Clarke (Clinical Expert Advisor)b a b
St. John’s; Donegal Rd., Ballybofey, Lifford, Co. Donegal, Republic of Ireland Royal Jubilee Maternity Hospital, Belfast, Ireland
a r t i c l e i n f o
a b s t r a c t
Article history: Received 11 March 2011 Received in revised form 5 October 2011 Accepted 16 October 2011
Previous research on pregnant women with a disability and their experience of maternity care demonstrated that these mothers perceived themselves to be the ‘perennial outsiders’ with midwives automatically categorising them as ‘high risk’ because of their disability. They also felt that their ability to make choices, stay in control and have continuity of care was not considered to be part of the mainstream maternity care for them because they did not fit the ‘normal’ category. Objective: this research was undertaken to explore the perceptions of two multiprofessional teams in Irish hospitals as to how maternity services to these mothers can be improved. Participants: nineteen health-care professionals from midwifery, social work and public health nursing were recruited. Setting: two from two major maternity hospitals, one in the North and one in the South of Ireland. were featured. Design: the method chosen was a qualitative approach, using focus group interviews in which case studies depicting a range and breadth of women’s birthing experiences were presented and discussed. Newell and Burnard’s (2006) six stage approach to thematic content analysis was used. Findings: the professionals found the disabled women’s stories believable, upsetting and challenging. Key conclusions: Staff acknowledged their ‘lack of competence, knowledge and skill’ regarding disability and felt that, on reflection, their failure to consult and collaborate with disabled women contributed to their failing to provide individualised woman centred care to women with a disability. Implications of practice: A series of recommendations for improved practice was agreed. & 2011 Elsevier Ltd. All rights reserved.
Keywords: Maternity care Pregnant with a disability Normalising birth Birthing experience
Introduction Disability has been defined as a consequence of impairments, physical, sensory and intellectual, which affect a person’s ability to perform normal day to day activities (World Health Organisation, 2001). By contrast the social model of disability views it as a consequence of organisational, attitudinal and environmental barriers, which severely limit an impaired person’s participation in society (Thomas and Curtis, 1997). The International Classification of Functioning (World Health Organisation, 2001) embraces both perspectives and provides a framework for optimising as well as assessing a persons participation in ordinary activities. For disabled women this includes child birth.
n
Corresponding author. Current address: Angela’s College, Sligo, Ireland. E-mail address: [email protected] (D. Walsh-Gallagher).
0266-6138/$ - see front matter & 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.midw.2011.10.007
However, there is strong evidence to suggest that the nondisabled population, inclusive of health-care professionals and across the generation gap, have reservations about disabled women becoming mothers (Ash and Fine, 1998; Neville-Jan, 2004). As a group, these women have traditionally been discouraged or even denied the opportunity to bear and rear children (Nosek et al., 2001). Moreover the assumption that disability is a medical condition requiring specialised intervention has profoundly affected the healthcare provided to disabled women, especially in relation to pregnancy and child birth. This minority group is often deemed ‘abnormal’ and consequently, they are likely to be regarded as problematic and in some cases, ‘incompetent’ with regard to having a normal birth and becoming a good mother. Health-care providers who are poorly educated in disability awareness and with minimal relevant training, are ill-equipped to serve the needs and expectations of women with disabilities (Campion, 1990; Kallianes and
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
Rubenfeld, 1997). Consequently, these mothers are perceived as ‘high risk’ and are not offered the same opportunities as their able bodied peers to achieve their optimum birthing experience. Reports continue to be published of disabled women being ‘marginalised’ whilst accessing maternity services and not having their ‘specific and individual’ requirements met, regardless of their level of functioning and aspirations (Aunos and Feldman, 2002; Prilleltensky, 2003; Mac Kay-Moffat, 2007; Walsh et al., this issue). In particular, mothers report that they are subject to constant surveillance (Shackleton and Godard, 1997; Tymchuk, 1999; Walsh et al., this issue) and the custodial rights of mothers with disabilities are frequently questioned before and after birth. Indeed, professional bodies have recognised that modern maternity services are failing to provide the specialist services required by these mothers to enable them to have the much desired ‘woman-centred-care’ (RCM, 2000). Royal College of Midwives (2000), published guidelines advising all midwives with regard to supporting mothers with disabilities. Midwives are advised to know their responsibilities under the Disability Discrimination Act (2005) and to provide flexible, creative and innovative midwifery care to meet individual needs, including choice, control and continuity of care for all women. In its document ‘Maternity Matters’, Department of Health (2007) the UK Government outlines its policy commitment to providing all pregnant women with appropriate and specialist services. However, there is little literature to identify the impact these initiatives have had on midwifery practice. It was against this background that the current research was undertaken and it provides one of the first significant publications in this area. The aim of this study was to gain an insight into the professional barriers to the provision of a normal birth for women with disabilities and how these barriers might be reduced. A particular focus was on the professionals’ views of disabled women making choices, of their being in control and the provision of continuity of care during and after their childbirth experiences. The study drew on the experiences of front line staff, primarily midwives, working in a large maternity hospital in Northern Ireland, which comes under the British National Health Service and another comparable hospital in the Republic of Ireland, which has more devolved service policies and practices. The 19 participants in the study were provided with the main themes arising from the interviews with disabled mothers and illustrated, using anonymous case studies of disabled women’s experiences of ‘high risk’ birth in their respective maternity services (Walsh-Gallagher et al., 2011). They were eager for their stories to be heard and to serve as a catalyst for service reform. The women in the study had congenital and acquired impairments. They included: mild intellectual disability (n¼5); status epilepsy (n¼4); total visual impairment (n¼ 2); mild intellectual disability and visual impairment (n¼1); multiple sclerosis (n¼ 1); spinabifida and hydrocephalus (n¼1); brain tumour (n¼1); cerebral palsy (n¼ 1) and motor neurone disease (n¼1). Their ages ranged from 17–40 years. Extracts from the case studies were used with participants to stimulate discussion and reflection on current practices and, more importantly, to explore how the maternity services in both countries could be developed to improve the future experiences of disabled women entering their respective systems.
295
through contact with the clinical expert adviser to the Department of Health and one in the Republic of Ireland. Following telephone negotiations with the head of maternity services for each hospital, 19 health-care professionals, were recruited for this study; 11 and eight in each of the two respective hospitals. Focus group One comprised: 1 ward manager, 1 discharge co-ordinator (attached to hospital/community); 1 ward Sister (maternity outpatients department); 1 ward Sister; 3 midwives, 2 social workers, 1 trainee social worker (hospital); 1 practice educator (neonatal intensive care unit). Excluding the trainee, their years of practice ranged from 5–30 years. Focus group Two comprised: 1 clinical midwife specialist (attached to fetal assessment unit); 2 midwives (maternity ward); 1 manager, 1 midwife (delivery unit); 1 social worker (hospital); 2 public health nurses/health visitors (community). Their years of practice ranged from 2–27 years. GPs doctors, gynaecologists and obstetricians were invited to participate in the study, but all declined to do so. Procedure Focus group interviews were conducted in each of the participating hospitals, with one author as facilitator (DWG) and another as note-taker (MS). Participants on duty were released for the interview; those off duty got time off in lieu. Participation was entirely voluntary. After introductions, the first author summarised the main findings from 17 disabled women’s experiences of accessing maternity services within the respective units, collected as part of a doctoral thesis (Walsh-Gallagher, 2009), Extensive use was made of direct quotations to illustrate the main themes. These were presented visually and read aloud. The women were each given a coded identity and their individual care was not discussed. Fig. 1 summarises the findings presented to the groups. Open ended questions were used in the second part of the sessions to explore participants’ perspectives around the women’s experiences of their ante, intra and postnatal care and how they, as carers, felt the women’s experiences could have been improved. In addition, a comment sheet was given to all the participants so that they could communicate in confidence any further insights or reflections to the research team. This served to counterbalance possible monopolisation of the discussion by dominant personalities and to counteract possible pressure for conformity among participants in the group. These sheets were anonymous and left in a pigeon hole within the hospital for the
Methods Ethical issues and recruitment of sample Ethical permission was requested and obtained from University of Ulster Research Committee. Access to participants was gained to two major maternity hospitals, one in Northern Ireland, facilitated
Fig. 1. Diagrammatic representation of the findings, suggesting improvements to service provision.
296
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
researcher to collect, with a two week time deadline for their return. Five responses with incisive comments were received. Data analysis The facilitator and the note-taker summarised and agreed the main themes emerging from the discussions with the participants at the end of each focus group. The group discussions were audio recorded and later transcribed verbatim. They were then analysed, using Newell and Burnard’s (2006) six stage approach to thematic content analysis. This involved six steps: memo writing throughout the focus group, reading of transcripts and making general notes, re-reading of transcripts and conduct coding of categories, collapsing codes into higher order categories, revisiting the data with higher order categories and collating the data for presentation. These analyses largely confirmed the summaries agreed at the two groups but allowed for a richer account to be developed from the main themes. At the end of each focus group, all participants confirmed the themes and later, an independent researcher (J.S.), together with supervisor (R.McC), checked the audit trail and procedures and validated the findings. Of particular note is that the same themes arose in both groups, despite being drawn from two different hospital systems. In part, this may have arisen as the focus of discussion was on mother–professional contacts rather than management and service issues.
Findings As Fig. 1 shows, disabled pregnant women encountered many barriers which prevented them from having a positive pregnancy, birthing and motherhood experience. These difficulties ranged from simple adaptation issues to more complex attitudinal ones with the latter based on professionals’ negative presumptions, possibly arising from their ignorance and lack of education and training in disability awareness. One consequence was that these women were excluded from an individualised plan of care (Walsh et al., this issue). Fig. 1 also summarises the four main themes that emerged from the analysis of the two focus groups. Professionals’ ambivalent attitudes Reflecting on their experiences of providing maternity care to disabled women, the professionals reported feelings of disappointment that women who had accessed their maternity services could have such negative memories of their maternity care provision, but they admitted their stories ‘rang’ true: I suppose it’s so disappointing really. The negative impressionsy (P1FG2) ysome of the quotes, when they are all played back to you, are quite shockingy (P2FG1) However, the professionals asserted that their attitudes were generally positive and very supportive towards women with a disability accessing their maternity care services: ywe take very much a multi disciplinary approach, where, you know, where we’re meeting the mumyand assessing her needsy (P2FG1) And certainly, if there was a need for, say, one to one antenatal classes or whatever, you know, that again, that has been facilitated as welly (P4FG2) I suppose you will have professional concerns aroundy how can we best serve the mother and the babyy (P5FG1)
However, despite these positive expressions towards women with a disability and their aspiration of providing high quality maternity care to them, many of the professionals stated that they were not surprised by many of the negative comments arising from women’s birthing experiences. Some even ‘normalised’ the lonely and isolated birth experience as common, in many cases, to both ‘normal’ and disabled: yyou would probably find that people like the ‘normal’ women still experience a lonely childbirth even though the room would be full of people. So that may not be totally uncommon. (P4FG1) Later, one midwife expressed her belief that a woman with a disability could yet have a normal pregnancy: You could argue that these women are not normal, because of their disability, but their pregnancies arey (i.e. normal) (P2FG1) This perception of abnormality can account for the offensive remarks, reported by some mothers, especially when the midwife is under pressure, and these may go unchallenged by other colleagues. The midwives accepted that such a scenario is inexcusable, but said it was the reality of their everyday work: But the reality is that it probably does happen, it’s not really a surprise to hear ity (P1FG1) ywe can be unkind and it doesn’t matter if you are disabled or not ywe sit here and say we are shocked and all that and to be honest (pause) we need to say, ‘yeah (lowers tone of voice) we are like that, some of the times’. And we know people who are like that and we don’t always challenge them eithery (P6FG1) Lack of knowledge about disabilities The second theme that emerged from the focus group interviews was lack of knowledge about disabilities and the presumption of inadequacy that accompanied this. Participants also concurred with disabled women’s comments about themselves and their need to prove to staff that they were twice as good as their non-disabled peers with regard to their capabilities of becoming mothers and being mothers: You know, maybe disabled women have to prove themselves as twice as good of mothers. And may have come from a lifetime of having to do better and better. It’s hard to get away from that too! (P2FG1) I think that’s something that is ingrained through years and years of limitation on what they could do and people telling them what they could do and the institutionalised. There’s a whole lot of factors there (P2FG2) Professionals were concerned about their lack of knowledge and experience in some aspects of care provision and openly acknowledged their lack of education and training and that they held stereotypical views: I think it’s a human thing is that, people, when people are confronted with a disability as to whatever it is, even as professionals they have a difficulty. People have a difficulty with ity (P4FG1) yIt’s human nature, sometimes to be at a loss maybe, as to how to deal with the women because of their disabilityy we should still be professional in our manner even if we don’t fully understand how to deal with these womeny (P3FG1)
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
The consultant gynaecologist or the midwife may have little or no knowledge of a particular disability: That person (midwife) might have never looked after somebody with total visual impairment, you know, and it might be difficult for them too! (P7FG2) The need for staff education in relation to disability awareness was further emphasised in the comment sheets: it is difficult to provide education to all staff about all ranges of disabilities. However, there should be an awareness that anyone with a disability needs to have a sympathetic approach (extended to him/her) when dealing with difficult/sensitive issuesy (C.1) The midwives claimed that their disability awareness training was outdated, too general and inappropriate to the specific needs of disabled, pregnant women. It also tended to be randomly administered: I believe that there is a need for practical information and advice to be tailored to individual women’s needsyeducation and training would raise midwives’ awareness of women’s needs with a disability (C.4) yanother down sideythe difference between Hospital X and Hospital Y is the public health nurses/health visitors haven’t training in the use of theypost natal depression skill tool and the counselling that’s required afterwards, whereas in Hospital Z theyyhave all received trainingy (P7FG2) Lack of effective communication Lack of effective communication formed the third theme. Professionals in both focus groups either overtly or implicitly indicated that effective communication both interdisciplinary and with the pregnant women in their care, should, from the initial point of contact, inform key elements in the provision of quality ante, intra and postnatal care. This did not always happen: ywe’re reliant on their (the women’s) G.P.’s and what the referral letter would sayyand thenythe booking process with the midwifeyand then the consultantyas to their additional needs. (P4FG1) yIt’s very important that yonce the booking visit is done that there’s a knock on notification to everybody involved (regarding the women’s additional needs)y (P3FG2) Following from this, in the discussions came the realisation of the need to include the disabled women themselves in their ‘plan of care’ for pregnancy, childbirth and postnatal care: yany disabled mother should have an individualised plan of care for her pregnancy, labour, delivery and postnatal care (C.3) The views of women with a disability can only be of benefit with the planning and implementation of maternity services (C.1) Nevertheless, professionals believed that ineffective and poor communication skills are the ‘biggest reason for complaints’:
297
Lack of resources The lack of resources was the final theme identified by the participants. They were generally concerned about how the services and they themselves as professionals were being ‘stretched’ to the limit due to inadequate funding: ywe do the best we can, but it’s just what we’ve got in our environmentythere has even been the hiring of a hoist for women during their pregnancy, for the bath. I mean the adaptations are made as they arise. (P1FG1) We do have disabled car parking at the front of the hospital, but a few car parking spaces are not enough’’ (with reference to the use of these spaces by others, apart from pregnant women). (P2FG1) But funding is never prioritised for it (education and training) or, if it is, it’s taken awayy so, while we see a lot of deficits, you know, it’s not always our fault, it’s the way it isy (P4FG2) Some antenatal clinics and postnatal wards were located in old buildings, whose design made adaptations for disabilities extremely difficult: ythis is an old building and it wasn’t meant for wheelchairs at all, so we’re having to make do and we are trying to adapt an older building with narrower doors, you don’t have areas that are wheelchair friendly or for any kind of disability. You need extra space even to assist people. y yes, some places it’s impossible to change because of the building. (P4FG1) They reported that they were so overworked that sometimes they were unable to complete their assessments and lived in fear of making mistakes: The services just don’t stretchywe can be at breaking pointy (P2FG2) They reported that because of insufficient time and training, which was poorly regulated, postnatal visits were generally cursory. There was little time to complete the postnatal anti-depression questionnaire and often there was no time to observe the ‘new mother’ and assess her physically and mentally, even if they had been trained to do so: ybecause midwives didn’t pick it up that she was sufferingy Not just documentation. It’s about looking around and having time for the woman. Sitting down and really analysing her answers. That’s what should be getting done but we just don’t have the timey (P3FG2) Professionals, with minimal resources, lacked confidence in their ability to meet disabled pregnant women’s requirements: It’s very difficult for a system that is geared for 99% of sighted women and not very many women coming through that are blind. So, how do we adapt things like appointments to give her in Braille? I do think it’s terrible that we do have things like videos y (referring to a midwife who gave a blind woman a video to help prepare her for giving birth). (P4FG1) Suggestions from the professionals
I suppose communication is the big thing really. Isn’t it? And the lack of communication when, you’re looking at it now in front of you in writingyit’s the big thing reallyy (P1FG2) I also do think that, em, the biggest reason for complaints is y the staff attitude and the way they communicatey So we are obviously not communicating any better with the disabled, than we are with other patients. (P2FG1)
Towards the end of the focus group sessions, participants were invited to note the recommendations they would propose for improving practice in their hospital. The suggestions were:
The standardised maternity record should make provision for entering information concerning the pre, peri and postnatal
298
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
needs of every woman with a disability and for assessing her capabilities and coping mechanisms. Update the current information booklet to indicate the availability and location of disabled parking spaces at the hospital. Make all maternity care information available in Braille, audio, video, web and phone. Staff in one hospital alluded to a proposed purpose built, disability friendly maternity unit that would enable them to enhance the quality of service provided to women with a disability.
Discussion This study is limited in a number of respects: it involved a small number of midwives and social work staff working in two maternity hospitals in Ireland. The views and experiences of the medical team were not included, as they did not attend, so the findings must be viewed cautiously. However, the themes that emerged are ones that are already highlighted in policy statements around improved provision for people with a disability, and they indicate that in maternity services provision, inequitable care and staff attitudinal problems persist. It is also important to note that some staff stated: ‘the numbers of women with disabilities are too small to require major change in service provision’ but we would argue strongly that this position is not acceptable. Even if the numbers of pregnant women who have a disability are small and their impact relatively insignificant, making it easy to discount them in a service that is struggling to deliver mainstream, regulated standards of care to all women, ethically, those who are most vulnerable require targeted and ring-fenced resources. With changing aspirations, the growth of new technologies and more sophisticated treatments, the numbers of women with disabilities, accessing maternity services, will increase, not decrease (Conley-Jung and Olkin, 2001; Prilleltensky, 2003). Perceptions of disability Disabled women interviewed by Walsh et al. (this issue) believed that many of those delivering care did not appear to understand disability and the inherent normality experienced by those who live every day of their lives with a disability. For these women, pregnancy was a normal event and they expected to be given choices, control and continuity of care within the maternity services and be treated equitably, like their ‘normal’ peers. However, they encountered barriers both physical and attitudinal, which prevented them from having a positive pregnancy, birth and motherhood experience. This experience appears to be widespread throughout current maternity services across different countries (Toms Barker and Maralani, 1997; Prilleltensky, 2003; Mac Kay-Moffat, 2007). Professionals, for their part, viewed the women as liabilities and their pregnancies as ‘high risk’ and hence, the latter were not given the opportunity to follow a ‘normal birth-care’ pathway. This further precludes midwives from learning how normal birth-care pathways can be adapted to suit the needs of this client group in accord with the requirements of the Disability Discrimination Act (2005). In addition, physically enabling facilities for pregnant women with disabilities were found to be minimal or almost non-existent in hospitals on both parts of Ireland. Shackle (1994) and Lee and Oh (2005) reported similar findings. In sum, mothers with disabilities were dependent on care provision unsuited to their needs and on carers who, by virtue of their lack of competence, knowledge and skill regarding disability, felt incapable of meeting those needs.
Professional practice Professionals admitted that these women largely gave a ‘true and honest’ account of their service provision and tended to excuse its limitations rather than deny the women’s experiences. Staff blamed the ‘reality of their everyday work’ for what could be termed ‘totally unacceptable professional behaviour’. Unacceptable practice and abusive behaviour were partially attributed to work pressure, but, more fundamentally, could arise from prejudiced perceptions. Rudeness or offensiveness often went unchallenged among colleagues. Individuals, however, recognised that they should be professional in their manner. Staff acknowledgement of such unacceptable professional behaviour as part of their practice has rarely been reported in the literature. The Changing Childbirth Report (Department of Health, 1993, p. 53) highlighted the potential for ‘the prejudice and ignorance of the able-bodied professionals’ to constitute ‘daunting barriers’ for disabled women. Yet, ingrained and long established societal attitudes still appear to underlie professionals’ inappropriate management of the care provided to women with disabilities. These women were not perceived to be ‘normal’ mothers and their pregnancies were labelled as high risk for the mother and the baby, so, they were deemed ineligible for ‘midwifery led care’ irrespective of whether they had previously delivered successfully. This meant that unlike ‘normal’ women, they perceived that they had very little or no control over decisions relating to their ante, intra and postnatal care. This is despite The ‘Maternity Matters’ Report (Department of Health, 2007), which explicitly confirmed that women should be the focus of maternity care, with an emphasis on providing choice, easy access and continuity of care. Although in-service education about disability was offered in both countries, it was viewed as too general and non-specific in relation to maternity services. Professionals, in consequence, reported that their ability to provide appropriate woman centred care for disabled mothers was severely hampered by their lack of training and education. Similar findings were reported by Culley and Genders (1999) and Mac Kay-Moffat and Cunningham (2006). Therefore, a real commitment is needed to delivering high quality training opportunities in disability awareness within a nationally recognised accredited training programme for maternity care professionals. Modern curriculum planning for health-care professions would benefit from the involvement of women with disabilities at the table, discussing the planning of the basic training, including course design, content and evaluation. Moreover, Saxton (1996) and Becker et al. (1997) argue that increasing the number of women with disabilities who are themselves healthcare providers will heighten professionals’ sensitivity to disabled women’s perspectives on maternity care provision and lead to change both within and without the traditional health-care system. Yet to date no guidance identifies the need to include women with a disability in the maternity services liaison committees (designed to improve service provision and the pregnancy and childbirth experience), that have been established in the UK. In summary, this study demonstrated a serious lack of communication, inflexible regimes, lack of support and non-individualised care programmes for pregnant women with disabilities within two large maternity hospitals that may be atypical of others in the UK and Ireland, but we suspect they are not. Professional and statutory bodies may find challenges ahead, if women with disabilities claim discrimination or inhumane treatment, and we believe due care and consideration need to be given to the, albeit, limited findings of this research study. Nonetheless we were pleased to note staff acknowledgement of their need to change and fully support their emphasis on the need for adequate resources to achieve this (see Fig. 1).
D. Walsh-Gallagher et al. / Midwifery 29 (2013) 294–299
Improving practice Overall, the findings indicated a predominantly medicalised agenda, with the professionals, accordingly, in control of maternity care delivery throughout. The health and social care professionals’ inadequate and fragmented education and training in relation to disabilities left them unprepared and ill equipped to empathise with and to meet the many and varied requirements, holistically, of disabled pregnant women. There is an urgent need for the development of protocols for health service providers to ensure that pregnant women with disabilities have access to appropriate support and maternity treatment. The involvement of disabled women in this initiative would help bring this about. Within the midwifery care services, professionals should respect their clients’ individuality, seeing them as women first, disabled second. When this happens, the pregnant woman, as pivot of a joint maternity care plan, can receive the necessary support to grow in confidence and competence while taking control of her pregnancy, birthing and motherhood. Further research is required to ascertain a deeper understanding of how all relevant professionals such as G.P.s, midwives, obstetricians, social workers and public health nurses/health visitors make decisions with regard to caring strategies for women who are pregnant and for mothers who are living with a disability. An effective multi-disciplinary referral mechanism needs to be established to ensure continuity of care. References Ash, A., Fine, M., 1998. Women with Disabilities: Essays in Psychology, Culture and Politics. Temple University Press, Philadelphia. Aunos, S.M., Feldman, M.A., 2002. Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 15, 285–296. Becker, H., Stuifberger, A., Tinkle, M., 1997. Reproductive health care experiences of women with disabilities: a qualitative study. Journal of Physical Medical Rehabilitation 78, 26–33. Campion, M.J., 1990. The Baby Challenge. A Handbook on Pregnancy for Women with a Physical Disability. Routledge, London. Conley-Jung, C., Olkin, R., 2001. Mothers with visual impairments or blindness raising young children. Journal of Visual Impairment and Blindness 91 (1), 14–29.
299
Culley, L., Genders, N., 1999. Parenting by people with learning disabilities: the educational needs of the community nurse. Nurse Education Today 19, 502–508. Department of Health, 1993. Changing Childbirth. Report of the Expert Maternity Group. HMSO, London. Department of Health, 2007. Maternity Matters: Choice, Access and Continuity of Care in a Safe Service. NHS. Disability Discrimination Act, 2005. London: HMSO. Kallianes, V., Rubenfeld, P., 1997. Disabled women and reproductive rights. Disability and Society 12 (2), 203–221. Lee, E.K.O., Oh, H., 2005. A wise wife and good mother: reproductive health and maternity among women with disability in South Korea. Sexuality and Disability 23 (3), 121–144. Mac Kay-Moffat, S., 2007. Disability in Pregnancy and Childbirth. Churchill Livingstone, London. Mac Kay-Moffat, S., Cunningham, C., 2006. Services for women with disabilities: mothers’ and midwives’ experiences. British Journal of Midwifery 14 (8), 472–477. Neville-Jan, A., 2004. Selling your soul to the devil: an autoethnography of pain, pleasure and the quest for a child. Disability and Society 19 (2), 113–127. Newell, P., Burnard, P., 2006. Introduction to Nursing Research: Incorporating Evidence Based Practice. Blackwell Publishing, London. Nosek, M.A., Howland, B.A., Rinalta, D.H., Young, M.M., Chanpong, M.S., 2001. National Study of Women with Physical Disabilities: Achieving and Maintaining Health and Wellbeing. Prilleltensky, O., 2003. A ramp to motherhood: the experiences of mothers with physical disabilities. Sexuality and Disability 21 (1), 21–47. Royal College of Midwives, 2000. Maternity care for women with disabilities. Stationary Office, RCM, London. Saxton, M., 1996. Teaching providers to become our allies. In: Krotoski, D.M., Nosek, M.A., Tuurk, M.A. (Eds.), Women with Physical Disabilities, Brookes, Baltimore. Shackle, M., 1994. I thought I was the only one. A Report from a Conference ‘Disabled People, Pregnancy and Early Parenthood’. Part of the Maternity Alliance Working Group Pack. Maternity Alliance, London. Shackleton, P., Godard, L., 1997. Pregnancy and disability. Birth Issues 6 (4), 5–10. Thomas, C., Curtis, P., 1997. Having a baby: some disabled women’s reproductive experiences. Midwifery 13, 202–209. Toms Barker, L.T., Maralani, V., 1997. Challenges and Strategies of Disabled Parents: Findings from a National Survey of Parents with Disabilities. Berkely Planning Associates, Oakland. Tymchuk, A.J., 1999. Moving towards integration of services for parents with intellectual disabilities. Journal of Intellectual Disabilities 24 (1), 59–74. Walsh-Gallagher, D., 2009. The Lived Experiences of Women with Disabilities facing the Challenges of Pregnancy, Childbirth and Motherhood (2009): An Interpretative Phenomenological Study’. Walsh, D., Sinclair, M., McConkey, R. The ambiguity of disabled women’s experiences of pregnancy, childbirth and motherhood: a phenomenological study. Midwifery, doi 10.1016/j.midw.2011.01.003, in press. World Health Organisation, 2001. International Classification of Functioning, Disability and Health. WHO, Geneva, Switzerland.