This chapter addresses maternity services, and although there is some unavoidable overlap with other chapters, especially Chapter 4, the content explores issues from a broader perspective and links more into professional concerns. The basis of this chapter is formulated from my qualitative and quantitative research project. Qualitative studies were used to elicit the experiences of five mothers accessing maternity services, and eight midwives’ experiences of providing services for mothers with disability. The quantitative part of the study was introduced to discover what amount of experience a greater number of midwives had in providing care for women with disability. Additionally an aim was to discover what their attitudes to people and women were; how confident they felt with communication, midwifery care and parent education; and what their learning needs might include. Examples of some women’s experiences are used to illustrate relevant points in the issues identified as pertinent to the care midwives offer women.
STANDARDS OF CARE
Significant data from the limited number of recent UK (Thomas 1997, McKay-Moffat 2003) and American (Lipson & Rogers 2000) studies indicates a degree of failure in health professionals’ ability to provide an effective maternity service for many women with disabilities. Key factors associated with sub-standard care were professionals’ inadequate knowledge and skills reflected in poor information giving, inappropriate help and ineffective communication; and the negative attitudes of some professionals. For some women these created dissatisfaction with maternity care.
These themes echoed those highlighted earlier by nurse-midwife lecturer Elaine Carty (1995) following her review of mainly American and Canadian literature and some key UK work related to pregnancy and motherhood for women with disabilities. She too had highlighted the negative attitudes of health professionals towards women with disabilities undertaking pregnancy.
An earlier publication offered insight from the consumer’s perspective. Campion’s book ‘The baby challenge’ (1990) was innovative at the time of publication, and still offers mothers and professionals considerable insight into her own experiences of pregnancy and motherhood and those of the many women with whom she had contact. She aimed to raise awareness of women’s concerns in order that the services they received met their needs. In the chapter focusing on health professionals’ support, she identified three main points. First, the negative attitudes that created damaging barriers; second, professionals’ discomfort with and misconceptions about people with disabilities; and finally how people felt intimidated by professionals. Campion’s knowledge and understanding prompted her to highlight the importance of treating women as individuals who possibly need some specialist advice, not as helpless people. As Crow (2003) more recently relates, the maternity services she received gave her the highest as well as the lowest moments in her life.
EVOLVING MATERNITY SERVICES
Midwifery care for women with disabilities in the UK needs to be considered both within the context of maternity services today and how those services have evolved. This enables an appreciation of the circumstances within which mothers find themselves when accessing help during pregnancy and childbirth.
There has been a move away from the medicalisation of childbirth that evolved over the last 100 years, to the present holistic model that focuses on midwifery-led woman-centred care: a key point in the government’s Changing Childbirth report (DoH 1993). The holistic paradigm views pregnancy and child-bearing as a normal life event, encompassing a greater acknowledgment of psychological, social, cultural and religious influences on maternal and infant well-being. Recognition of these elements is clearly defined within the role of midwives (NMC 2004).
A woman’s experiences of accessing and using health services, and life and people in general, will have influenced her attitudes, responses and expectations from midwives and other health professionals. Similarly, midwives’ own attitudes may be influenced not only by their own preconceived ideas but their lack of specific knowledge of the needs of people with disabilities. It could be argued that the recent indications for the need for a specialist midwife to support women with disabilities during their childbirth experience (Brown 2001, Rotheram 2002) implies that midwives in general are not in a position to offer the right type of care. Indeed, even accomplished midwives may have limited experience of providing services for women with disabilities therefore encountering minimal opportunities for experiential learning.
On the other hand, the maternity service in the twenty-first century aims to offer all women respect for their individuality and enable them to have choice in, and take control over the care they receive. Whilst it could be argued that the aims are idealistic and not always achievable, service providers should continue to strive to fulfil those aims for women with or without a disability. Yet even in the highly advanced, sophisticated United States of America ‘…high quality health care for women with disabilities remains inconsistent and difficult to achieve’ (Turk 2004, p 5). However, in the UK there is the advantage over the USA of a National Health Service enabling (in theory) equal opportunities for all to benefit from the whole spectrum of healthcare.
MIDWIVES’ ATTITUDES TOWARDS PEOPLE WITH DISABILITIES AND THEIR CONFIDENCE IN CARE PROVISION
Either implicit or overtly referred to in the literature, the attitudes of some health professionals towards people and mothers with a disability give cause for concern. There is also some indication that there is a lack of effective helping skills which may reflect inadequate knowledge and confidence in service provision. As midwives in the UK are the lead professionals in the majority of maternity cases, midwives’ attitudes towards people and mothers with disabilities could have a profound influence on the quality of maternity services that women receive. Psychological barriers resulting from mothers’ perceptions of service providers’ negative attitudes towards them may lead to less effective or sub-standard maternity care.
Qualitative study
The importance of midwives’ attitudes as the key service providers was highlighted in my study that involved semi-structured interviews with eight midwives and five mothers with either congenital or acquired physical disabilities (McKay-Moffat 2003, McKay-Moffat & Cunningham 2006) (see Box 6.1 and Box 6.2 for guide questions used as the basis for the interviews).
Box 6.1
Questions used to guide semi-structured interviews with midwives
1) Biographical details
How long have you been a midwife?
What are your qualifications?
Where did you do your midwifery training?
How many hours do you work per week?
What is your main area of practice?
2) General details
During your training were you taught about pregnancy and childbirth for women with disabilities?
Have you attended any in-service education or study days about pregnancy and childbirth for women with disabilities?
3) Experience
How many women with disability have you provided midwifery care for within the last 5 years?
What was the nature of the woman’s disability?
Could you tell me about each case?
4) Prompts to elicit key points
Was there anything you felt was particularly important about the care you gave?
How did you feel about providing care?
How do you feel about women with a disability having babies?
Do you think that all women with a disability should be offered a termination of pregnancy?
How would you feel about offering a woman with a disability antenatal screening for fetal abnormality? (Explore specific conditions e.g. spina bifida and sensory disability when a woman has that condition.)
Where do you consider women with a disability should give birth?
Have you been involved in parent education/classes for disabled women? Have you any thoughts on how midwives can best fulfil their education role for women with disability?
Do you have any ideas that could help improve midwifery services for women with a disability?
Box 6.2
Questions used to guide semi-structured interviews with mothers
1) Biographical details
How old are you?
What type of education have you had?
Do you go out to work? If ‘yes’—occupation and qualifications.
Are you married/have a partner? If ‘yes’— occupation of husband/partner.
2) General details
Could you tell me about your disability?
Prompts: Do you use any special equipment/aids/need any help from an assistant?
Are there any areas that you find particularly difficult with self-care, child-care or as a mother?
3) Obstetric history
How many children do you have and how old are they?
Were your pregnancies planned?
What type of delivery(s) did you have?
Have you had any other pregnancies?
4) Experience(s)
Could you tell me about your pregnancies during the last 5 years?
Could you tell me about your midwifery care for these pregnancies?
Prompts: How did you find your midwifery care?
Did you have the same midwife throughout?
Where did you have the majority of your midwifery care?
Where did you have your baby(s)? Was that your place of choice/did you have a choice?
What information did you receive?
Were you offered screening during pregnancy for fetal abnormalities? How did you feel about having the tests?
Were you offered termination of pregnancy? Explore feelings about.
Did you attend parent education classes? If ‘yes’ were they helpful?
What were your specific needs during pregnancy, labour, postnatal? Were they met?
How could your midwifery care have been improved?
Although the number of women in the study was small, and none of the women had sensory impairment which could have enhanced the quality of data, their experiences were similar to those described in the literature.
Despite the obvious limitations of the study there were five themes that emerged from the mothers’ interviews that midwives need to consider to enhance the quality of maternity care they offer women. First, and similar to evidence from other mothers’ experiences, it was evident that there was a ‘Quest for normality and independence’ by the mothers. They did not wish their disability to be the focus of attention but neither did they want it to be ignored. This resulted in a conflict with their need to acknowledge the disabling aspect of their impairment but unwillingness to do so. This often resulted in attempts to try to conceal or minimise a disability and not ask for help.
The second theme ‘The disability as paramount’, was identified as, without exception, the experiences of each of the mothers was influenced by her disability. They had feelings of self-consciousness and embarrassment as their disabilities drew others’ attention. They all had misgivings about their ability to fulfil their roles as mothers and felt that professionals, family and friends would perceive them as inadequate in that role. One mother was convinced that this had led to her postnatal depression.
Theme three was labelled ‘Midwives lack of knowledge’. This theme echoes much of the existing related literature. The mothers felt that there was a lack of knowledge because their specific needs were not recognised and discussed, therefore they remained unmet. Additional evidence from four mothers indicated that midwives lacked skills to be able to offer practical help with infant care to overcome the disabling effects of their impairment. This appeared to be a contributory factor to the mother’s postnatal depression in her opinion.
The label for theme four was ‘Disability awareness and positive attitudes’. Disability awareness and positive attitudes towards the women was demonstrated by receipt of care that was sensitive and respectful, and privacy and dignity was assured. This resulted in satisfaction with maternity care. But this did not always take place and there were some examples of incidences demonstrating poor awareness and negative attitudes. This occurred when disability was not acknowledged or when a woman felt watched because of her disability; when essential medication to alleviate symptoms from the condition was not given on time; and when there was insensitivity or intolerance of the mother’s inability to do things. This latter element of interaction with midwives caused some mothers distress.
Of particular note was the postnatal experience of a mother with multiple sclerosis (MS) during her hospital stay. Because her ‘invisible’ condition caused her to have poor muscle strength she had difficulty in pushing her baby in the heavy cot cabinet. Unwilling to leave her baby unattended, she carried her baby a few yards out of the four-bed ward to the staff work station to ask for a formula feed. She received angry chastisement from a midwife because she had failed to push the baby in the cot: a procedure recommended to all mothers to minimise the risk of dropping a baby. She felt humiliated and angry by such insensitivity and felt that there was a lack of understanding about the consequences of her condition.
Conversely, a mother who had a leg amputated below the knee during early pregnancy had felt midwives were very positive in their approach and offered her sensitive care that met her needs for the majority of the childbirth continuum. This resulted in her feeling very satisfied with the care she received. These examples indicate that there is difficulty in achieving the right balance between acknowledging and disregarding a mother’s impairment. If someone is not overtly disabled i.e. the impairment is invisible, it is possible, as Lipson & Rogers (2000) postulate, that they are more likely to receive insensitive care because their disability goes unrecognised or unacknowledged. Nevertheless, reflecting on their experiences the majority of mothers in the study indicated that they had, on the whole, actually felt that they had been treated the same as other mothers, rather than being singled out as different. They appreciated this approach.
The final theme ‘Effective communication’, indicates how vital this process is to successful and satisfying maternity care. When midwives communicated well with mothers they were less likely to be afraid or anxious and individual needs were recognised and met. When interdisciplinary communication was evident, particularly over information about a mother’s history and especially about her disability, then there was less embarrassment and frustration for the mother. However, this process did not always take place and three mothers felt that if an occupational therapist or specialist midwife/disability advisor had been contacted their expertise would have enhanced the quality of their care and additional needs would have been more effectively met.
Midwives’ results
Despite the small number of midwives, their experiences of providing care for mothers with disability offered an insight into how midwives feel about their ability and confidence to provide this group of women with maternity services, and their attitudes towards the mothers and people with disability in general.
Three themes emerged from the interviews. Theme one was ‘Midwives’ lack of knowledge’. Although the midwives had provided care for between two and six mothers with a variety of mobility and sensory disabilities, they were concerned about their lack of knowledge and experience in some aspects of care provision. This led to feelings of inadequacy in some cases and anxieties about their ability to provide women with the services and care they needed. One said she felt out of her depth.
‘Midwives’ attitudes’ formed the second theme. Reflecting on their experiences, the professionals demonstrated that their attitudes were generally positive towards mothers with disability. It was clear from what they said that care they offered was sensitive, respectful and individualised. They also believed that every woman with a disability should receive the same high standard of service as other women. Additionally words like partnership in care, choice, advocacy, flexibility, adaptability and sensitivity were indicators of underlying attitudes. Furthermore, all midwives who participated in the interviews were adamant that every woman whether disabled or non-disabled has the right to choose to have a baby if she wishes. Termination of pregnancy just because of a mother’s disability was judged not to be something that should be considered. This is in stark contrast to the experiences of some mothers in the past where the attitudes of professionals (and often a woman’s family and friends) were negative. This presented as opinions that women with a disability were incapable of being effective mothers or that having a child would be a burden to the family and society.
The final theme was ‘Effective communication’. As an aid to care planning, all midwives, either overtly or implicitly, indicated that effective communication with mothers and the multidisciplinary team were key elements in the process. Only two actually mentioned liaison with other professionals or support agencies. Communication with mothers in every situation was recognised as not always easy. They were generally concerned with the possibility of causing offence by either what they said or did not say, and what or how to ask a woman about her disability. Discussing screening for fetal abnormality, and the subsequent implications for termination of pregnancy because of an abnormality, gave some cause for concern as they did not wish to be seen as devaluing people with a disability. There was appreciation of the challenges with communicating with women who were deaf and the potential frustration for all concerned. Four of the group pointed out that sign language skill for midwives would be beneficial in some cases.
Summary of the findings
Evidence from these interviews indicates that positive attitudes and effective two-way communication are pivotal elements in the successful provision of maternity services for women with disability. Negative attitudes appear to stem from a lack of knowledge, understanding and confidence on the part of professionals. This could be alleviated initially by more open communication. However, there seems almost to be mutual collusion between women and midwives to avoid highlighting a woman’s disability and address the pertinent issues that underlie impairment. Therefore it is important that women and midwives are not afraid to be both honest and receptive in their approach to a woman’s disability. With this approach, successful identification of additional or alternative ways of meeting specific individual needs is more assured. Midwives need to remember, nevertheless, that women may be reluctant to highlight concerns, therefore they need to be proactive in identifying and addressing the issues. There is, though, a fine line between offering help and making someone feel different and it is not always easy to obtain the correct balance.
Quantitative study
A quantitative approach was used to gain further insight into the unresearched phenomena of midwives’ attitudes, and to elicit information about their experiences of providing maternity services for women with disability. The responses of 224 north-west of England midwives to a postal survey were analysed (McKay-Moffat 2003). Background data were gathered to obtain a picture of their experiences and to ascertain any correlations between attitudes and experience or education as Gething (1992) had evidence that these variables were influential on individuals’ attitudes. Data included:
▪ years of practice as a midwife;
▪ amount of disability-centred education (either as a student or since qualification);
▪ the number of mothers with disability cared for during the childbirth continuum (either as a student or since qualification) (see Box 6.3 for general list of disabilities);
Box 6.3
List of general disabilities used with questions in Box 6.4
▪ Visual impairment.
▪ Hearing impairment.
▪ Upper limb.
▪ Lower limb.
▪ Wheelchair user.
▪ Learning difficulty.
▪ experience of being with or caring for anyone with a disability outside of midwifery practice.
Participants in the study had been in practice for a wide range of years giving a diverse group of respondents (see Table 6.1). Years of experience as a midwife ranged from 1 to 38: those over 25 years were in the minority. The mean was 13.15 years, the mode (i.e. most common) being 2 years, with 5 and 12 the next most common lengths of experience.
| No. | Years |
|---|---|
| 44 | 0–4 |
| 39 | 5–9 |
| 52 | 10–14 |
| 25 | 15–19 |
| 31 | 20–24 |
| 7 | 25–29 |
| 13 | 30–38 |
| 3 | not stated |
| 224 | total |
Lectures related to midwifery care for mothers with disability were rarely given during midwives’ training for those midwives qualified over 10 years. Since qualification, almost two-thirds had made some effort to learn about pregnancy and childbirth for women with disability. Most of this had been by reading although the quality of the literature was not ascertained. Few had received any formal education, for example study days, since qualification.
Experience of people and mothers with disability was generally limited. Over a third of midwives had never had any interaction with people with disability outside of midwifery. Approximately 12% of the midwives had never provided midwifery services for women with disability. In the majority of cases those midwives who had provided care for women did so for just one woman during one aspect of the childbirth continuum. These data indicate a lack of experiential learning opportunities to develop knowledge and expertise to offer skilled help.
Attitudes
To elicit midwives’ general attitudes towards people with disability, the initial part of the survey comprised of an Australian questionnaire developed during the 1980s (Gething 1994). This internationally validated questionnaire measures discomfort, anxiety and uncertainty when interacting with people with disability (the Interaction with Disabled Persons (IDP) scale). The second section of the questionnaire contained questions that were formulated to focus specifically on midwifery and to ascertain respondents’ attitudes towards mothers with disability and their confidence in providing this small group of women with maternity services (see Box 6.4). Answers to both of these sections and the background information were then correlated with the results of the IDP to identify relationships.
Box 6.4
Additional midwifery-focused questions
▪ I would feel confident in providing midwifery care.
▪ I would find communication with the mother difficult.
▪ I would be afraid of doing or saying the wrong thing.
▪ I feel I would be able to offer effective parent education.
▪ I would find it difficult to see beyond a mother’s disability.
The questionnaire consists of a set of 18 statements that require a response on a Likert scale i.e. from strongly agree to strongly disagree and is suitable for people from all walks of life, although it appears never to have been used with midwives before this study. As with previous studies, to make sense of results and discover their meaning a factor analysis was applied to data (Robson 2002). This correlated and grouped statements together depending on the answers obtained and was undertaken with the aid of computer software called the Statistical Package for Social Sciences (SPSS).
Results of analysis indicated the 12 statements that grouped into factors 1, 2 and 5 were the most reliable (see Table 6.2 with the list of these statements and factors) and therefore only these will be included here for discussion. The strongest correlation of statements formed factor 1 in both Gething’s (1994) study and my own, and is labelled ‘Discomfort in social interaction’. Additional groupings although not exactly the same as Gething’s led to similar labels reflecting knowledge, sensitivity, coping and vulnerability. The meaning of the factors can be summarised. Factor 1 suggests that midwives would not find interacting with people with disability a major problem. This in turn points to positive attitudes. Factor 2 indicates that midwives felt knowledgeable about disability, and they had sensitivity to the situation of the person with the disability. Factor 5 indicates that although midwives may have had a sense of vulnerability about the possibility of becoming disabled themselves, they felt able to cope with the disability of other people.
| Factor 1. Discomfort in social interaction | Factor 2. Knowledge and sensitivity | Factor 5. Vulnerable/coping |
|---|---|---|
| I am afraid to look the person straight in the face | I feel frustrated because I don’t know how to help | After frequent contact I notice the person not the disability |
| I tend to make contacts only brief and finish them as quickly as possible | It hurts me when someone wants to do something and can’t | I wonder how I would feel if I had this disability |
| I feel overwhelmed with discomfort about my own lack of disability | I feel ignorant about disabled people | Contact with a disabled person reminds me of my own vulnerability |
| I feel uncomfortable and find it hard to relax | ||
| I feel unsure because I don’t know how to behave | ||
| I can’t help staring at them |
The key factor that relates to comfort interacting with people with disability (factor 1) correlates with positive attitudes towards them. Gething (1992) argued that ‘……negative attitudes stem from a perception of people as being strange or unfamiliar and that this creates the uncertainty or anxiety’ (p 26). The higher an individual’s score, the greater the discomfort and therefore the negativity towards people with disability.
Over 90% of midwives in the study appeared to hold positive attitudes towards people with disabilities. When results of the IDP from midwives were compared with a range of community and professional groups from Gething’s study (Gething 1994) (see Table 6.3) there were fewer midwives with extreme negative attitudes or feelings of discomfort as represented by the lower standard deviation scores. Additionally it is clear that the overall mean (average) score of midwives in the study group was lower (the lower the score the more positive the attitudes). They were even lower than that of physical therapists and rehabilitation professionals who would be dealing with people with disabilities as part of their daily work. Caution must be used when interpreting these data as it must be noted that Gething’s data were gathered some time ago between 1988 and 1992. Therefore the present study results may point to changes over time in the general attitudes of society and professionals towards people with disabilities, rather than necessarily that midwives have more positive attitudes than other groups.
| aMean = average score. The lower the number the more positive the attitudes. | |||
| bSD = standard deviation. The smaller the number the greater the similarity of responses i.e. less extreme opinions. | |||
| Sample | Sample no. | Meana | SDb |
|---|---|---|---|
| General population | 4180 | 64.1 | 12.2 |
| Members of the judicial system | 59 | 67.5 | 12.2 |
| Government employees | 541 | 63.0 | 12.5 |
| High school students | 181 | 69.3 | 11.3 |
| University education students | 272 | 72.8 | 10.8 |
| University nursing students (1st year) | 104 | 67.3 | 10.1 |
| University nursing students (2nd year) | 136 | 65.5 | 9.8 |
| University nursing students (3rd year) | 372 | 63.3 | 10.4 |
| Registered nurses | 376 | 62.3 | 10.3 |
| Enrolled nurses | 123 | 60.0 | 11.0 |
| Physical therapists | 121 | 58.6 | 9.7 |
| Medical physicians | 171 | 61.1 | 10.2 |
| Rehabilitation professionals | 351 | 58.8 | 12.3 |
| Members of disability agencies | 63 | 60.8 | 12.8 |
| The present study | |||
| Midwives | 224 | 54.6 | 6.3 |
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