In addition to the individual face-to-face interviews with women with disabilities, health professionals from relevant disciplines were invited to participate in one of 6 focus group discussions relating to the provision of services for women with disabilities accessing the publicly-funded health services during pregnancy, childbirth and early motherhood.
The aims of the focus groups were:
a) to ascertain the views of health professionals on the quality of current service provision for women with disabilities and
b) to identify how future services can meet the needs of women with disabilities.
Multidisciplinary focus groups were conducted in 4 different regions - Dublin, Donegal, Galway and Waterford. Health professionals including midwives, obstetricians, general practitioners, paediatricians, neonatologists, public health nurses, social workers, physiotherapists, psychiatrists, mental health specialists and maternity care assistants were invited to participate in a focus group located near their place of employment.
The Health Service Executive's local health offices in each county were contacted and they provided the contact details for the general practitioners, public health nurses, social workers and physiotherapists employed in the primary community care services. Letters of invitation were also sent to health professionals working in the 19 publicly-funded maternity units. Over 600 letters of invitation were posted. In addition, health professionals working in a specific mental health service and in intellectual disability service providers from voluntary organisations affiliated to the Federation of Voluntary Bodies of Ireland (FEDVOL) were also invited to participate in 2 disability specific focus groups.
Thirty people participated in the 6 focus group discussions. Four focus groups comprised of a variety of professionals where the focus was on all 5 disability strands of the study, while the remaining 2 focus groups were disability specific; one focused specifically on mental health issues and the other on intellectual disability services. The focus group regarding mental health issues arose because the health professionals involved were unable to attend the multidisciplinary group scheduled for their area, but were very eager to contribute their views (Appendix 2, section 4.7.). The focus group specifically for service providers from voluntary organisations affiliated to FEDVOL was convened to discuss issues relating to women with intellectual disability only (Appendix 2, section 4.10.).
The focus groups held in the Leinster region had the largest number of participants (n=17, 57% (includes the intellectual disability focus group (4), and telephone and email responses (4)); in Ulster there were 9 (30%) (includes mental health specific group (3)); in Connacht 2 (7%); and there were 2 (7%) participants in Munster (Table 6).
|
Region |
Number of Participants |
Percentage |
|---|---|---|
| Leinster |
17 |
57% |
| Ulster |
9 |
30% |
| Connacht |
2 |
7% |
| Munster |
2 |
7% |
| Total n=30 |
|
Eight disciplines/ sectors were represented including midwifery (n=10, 33%), the largest single group represented, nursing (n=3, 10%), mental health specialists (mental health nurses and midwifery specialist) (n=4, 13%), intellectual disability service providers (n=4, 13%), social workers (n=2, 7%), physiotherapists (n=2, 7%) maternity care assistants (n=3, 10%) and medicine (n=2, 7%) (Appendix 2, Table 7). The majority (n=20, 67%) were working in hospital settings and 33% (n=10) worked in the community. The findings of the focus group with intellectual disability service providers are presented separately after those of the other groups.
Four questions were used as a framework for the focus group discussions with health professionals:
The responses to these questions were categorised under 3 of the themes identified in the literature review and interviews with women, namely: accessibility, accommodation, and acceptability. Availability and affordability as themes did not emerge from these discussions.
The participants' words are used to illustrate the themes and categories identified. Words inserted in brackets thus [ ], are the researchers' additions to increase clarity. Words omitted from a direct transcript are indicated by 3 ellipses thus (...). Identifiers are included after each quotation; (FG1) indicates the first interview undertaken and so on.
In relation to women with a physical disability, issues around accessibility to the physical environment, forward planning, support and assistance dominated the focus group discussions. Many of the key points to arise were similar to those identified by the women in their interviews.
'The key is access to and from the hospital, safety and transport to and from the hospital'. (FG1)'Good physical access to the services so they [women with disabilities] need no barriers. Getting people into the hospital, getting them parked up'. (FG2)
Access into and within the maternity unit and health centres were also considered. Participants identified how the provision of a ramp and automatic doors would reduce difficulties for women with a physical disability or visual impairment when accessing the various departments in the maternity unit/hospital.
'Anywhere else in the maternity unit access for anybody with a wheelchair would be good, but at the [antenatal] clinic... all the rooms are actually up steps, ... it's a very old, old building... there is a consulting room that is at ground level and the [midwives] use that so the ladies [with a physical disability] go there and the doctors come down to that room'. (FG4)'[In] the early pregnancy assessment unit there is steps ... it is inaccessible for women with a physical disability and we [maternity unit] need to address that'. (FG1)
The majority of maternity units/hospitals appear to have accessible equipment but the participants spoke of challenges that are encountered by women with physical disabilities when trying to gain access to and navigating the interior environment of some units.
'Access within the maternity department is good because everything is... wheelchair-accessible, we have beds that go up and down, [but] we don't have cots that go up and down. It may be difficult to get into the bath but we do have showers that are accessible and she [the woman] can sit under the big shower ... everything is on wheels except the midwives'. (FG4)'We have adjustable beds and equipment. On the postnatal ward there is a bathroom that is accessible ...there is enough space for a wheelchair'. (FG1)'[We] do have a bathroom that may not be suitable, there are high steps into the shower'. (FG1)
Participants spoke of how some maternity units/hospital are old and because of the external and internal architecture some key departments are inaccessible.
'Lots of our buildings [maternity units] are old buildings so there are steps everywhere, ramps are available but they aren't accessible unless [the woman] gets assistance from somebody like the security or portering staff to come ...the doors are too narrow so even if [the woman] gets into the department she cannot get into the office and that is very difficult'. (FG1)
A purpose-built wheelchair-accessible room is available in some units.
'We have a purpose-built room, a 2-bedded ward that is wheelchair-accessible and we have wheelchair-accessible toilets in a number of areas ... and height adjustable beds and the doors are wide'. (FG1)
Regarding the needs of women with a vision impairment, 2 points dominated the discussions, namely access to the structural environment and forward planning. Gaining access to the maternity unit/hospital and orientation to the physical environment was considered important. Participants spoke of how all staff must have some awareness of the importance of orientating the woman to her environment and keeping the environment uncluttered and barrier-free.
'[Midwives] need to point to where everything is in the room so that she [woman] knows actually how many steps she has to take and when her meals are brought in they are actually put beside her and it just makes things easier for her, she knows ...where everything is... an awareness of staff to make sure that things are not moved in the room'. (FG1)'Getting her [woman] to walk the route and getting ... her familiar with the surroundings'. (FG3)'We [maternity care assistant] would be there to help them, keep an eye on them ... support them. The ward is so big but you would always have in the back of your mind an awareness that they are there'. (FG4)'If the woman was to come in... a 6-bedded room would be quite daunting, people are constantly moving chairs, beds and tables and things like that. A single room where she would become familiar with the shape of the room would be better'. (FG4)
Policies and procedures need to be flexible to accommodate the woman if she chooses to have a companion with her.
'Orientation would be difficult if ... they have no sight at all. If a carer wants to stay with them [woman] we would probably accommodate that...we do have people stay if there is problems'. (FG4)
Participants discussed how health professionals should accommodate to the needs common to all women with a disability. First they identified how health professionals should determine what the disability is:
'The number one issue is to see what disability [the woman has]'. (FG1)
Secondly, they felt that each woman should have an individual assessment of needs and an appropriate plan of care developed at the first antenatal booking visit. To facilitate the development of this plan an early appointment and review is necessary. The woman, the multidisciplinary team, and the woman's support person(s) should be involved in planning the woman's care. Interdisciplinary collaboration is necessary and the women may require a referral to other professionals depending on their specific needs.
'[In] the antenatal clinic it [woman's needs] would be identified clarified and a plan put in place'. (FG1)'A plan of care from the very, very start a definite plan of how you [health professionals] would like things to proceed and how you would like things to evolve and that means involving all the persons involved in that person's life be it the GP, be it the family, be it professional carer whoever that may be so that an individual care plan regardless of the disability [can be developed]'. (FG2)'Acknowledge or identify women when they're booking in, in relation to their needs and social work involvement'. (FG3)'There is essentially an individualised care plan done at that stage[antenatal booking visit] so any disabilities or any difficulties that this woman foresee [are identified]'. (FG4)
They emphasised that health professionals need to facilitate and maintain effective communication with the woman, be aware of her expectations, and determine a plan for birth so that essential equipment can be sourced in time.
'[Issues] clarified and planned beforehand so that plans would be clear and depending on the plan and what's in the plan equipment ...would be brought in beforehand to help her'. (FG1)
Participants discussed how good communication is essential. Health professionals need to be aware of the value of the spoken word and to be respectful, empathetic and sensitive when interacting with women with disabilities. Participants discussed how current professional registration, education and training programmes provide some awareness of disability issues and the generic needs of women with disabilities.
'Keeping the communication going on [is important]'. (FG1)'The priority is communication'. (FG1)'There is education programmes [both in midwifery and maternity care assistants] in relation to disability and creating awareness to look at the needs of a mother that have particular problems'. (FG1)
Participants acknowledged the importance of creating collaborative links with other maternity units and general hospitals. Linking with clinical specialists in other areas including the mental health and intellectual disability sectors is necessary. Health professionals need to adopt a multidisciplinary approach from the very outset. This approach should be implemented when the woman first accesses health services during pregnancy, which would facilitate the identification of the woman's specific needs and the mobilisation of resources and services to meet such needs.
'If needed we [maternity unit] would find the resources. Where resources are needed we would make every effort to put in additional resources and you may not be able to guarantee it around the clock but you would try and do your best'. (FG1)'We [midwives] have very good links with [names of 2 general hospitals] and if there are any issues we link with the clinical specialists in the area and we have done that on some occasions when there are certain things we need information on'. (FG1)'[We use] the greater multidisciplinary team that are available to us [midwives] in the hospital like OT [occupational therapist] or physio [physiotherapist]. We work very closely with the community welfare officers and the social welfare services'. (FG2)
Participants discussed the need for health professionals to acknowledge the woman's individual needs and the importance of gaining informed consent. There was a consensus that for women with either an intellectual disability or mental health difficulties health professionals appear to be more aware of the need to gain informed consent from this population.
'A lot of women don't have a lot of choice anyway ... but it's funny, the intellectual disabilities probably do better in terms of choice than the mainstream group because people are more conscious of having consent with them...people are quite conscious that one needs ... to explain this really well and ...make sure that they understand'. (FG3)'With the mental health group we [midwives] are more aware that we have to make damn sure that we're able to say we got consent, it's more of an issue for us with this group, we're better at it with this group than we are with the general population'. (FG3)
Some participants also highlighted the importance of 'not stigmatising or marginalising' (FG5) women just because they have a disability. They believed that health professionals must respect the woman's right to the same health services provided to any woman during pregnancy, childbirth and early motherhood.
'[It's important] you [health professionals] don't stigmatise but you might have to look at the fact that this woman may be in a wheelchair and she may need a special way of bathing the baby so again, individualised care'. (FG2)'Respect for everyone's rights and the right to the same services is important'. (FG2)'It's our attitudes sometimes, you have to guard it [attitude] in speaking to the person and not to the person with them, you need to be conscious of it and how we approach people'. (FG1)
Linking with voluntary agencies was considered important.
'We would discuss [with women] in the antenatal clinic and then if there is something needed we would follow up on it. Follow up with voluntary agencies is hugely important and there is links with them'. (FG1)
When addressing the woman's specific needs, these health professionals stated that they should be creative with existing resources and flexible with policies, procedures and guidelines. Participants believed that a person-centred approach should be adopted when planning care antenatally, intranatally and postnatally.
'Using the resources that you [maternity unit] have and just extending them a little bit. [In] the ETH [Early Transfer Home[6] services], we had a lady who did not fit the criteria for ETH and stayed her 3 days in hospital to learn the additional care ... but we did extend the criteria and the ETH did take her when she went home to give her the additional support she needed'. (FG1)'If women could have their care at home like the DOMINO or something they could avoid that awful place [maternity unit]'. (FG1)
Health professionals need to incorporate the women's disability, acknowledge and recognise the woman's innate ability to adapt and cope when preparing for or performing parenting skills. Participants believed that women with disabilities might need one-to-one parent education classes, which should be facilitated.
'Antenatal education is very important ... [it] can be done in a one-to-one class'. (FG1)
A particular point of discussion around the perceived needs of women with a physical disability was support and assistance. Participants identified how women may need a companion of choice to accompany them while in the maternity unit/hospital. Women may need support and assistance with the practical aspects of baby care. Practical tools and/or aids, should be sourced and made available to assist women in their parenting role.
'Practical aspects of baby care depending on what the mother needs ...if there are tools or aids which would empower her [mother] to attend her baby'. (FG1)'When she [woman] goes home, the home may not be designed for baby in mind she may need assistance and additional help in terms of additional amendments to her overall environment'. (FG1)
Women with a physical disability may not be known to the public health nurse, who also may not be aware the woman has become a parent until they receive some correspondence from the maternity unit.
'Antenatal mothers with a physical disability may not be necessarily known to the public health nurse in the antenatal period, there is a gap in terms of preparation. As regard the postnatal public health nurse services we would often not know that this particular family were expecting a baby until we hear from the postnatal ward'. (FG4)'[The] public health nurses visit and do the postnatal checks in the woman's home, which will be adapted for her needs as required, and do the care in her own environment which is adapted and usually the mum is very independent in her own environment and self-caring'. (FG4)
When addressing the information needs of women with a vision impairment, the participants identified the need for one-to-one antenatal education classes and an appropriate means to disseminate information.
'They [parent education] don't have tapes or CDs but they can be sourced and accessed if necessary'. (FG1)'... it is a good idea[to have information in Braille], it would be a fantastic idea if you happen to be visually impaired, but the financial cost of it is prohibitive'. (FG3)'The antenatal class provided ... by the public health nurse in rural health centres, there may be a possibility of having difficulty accessing the classes or even knowing the classes are on because the classes are advertised by flyers'. (FG4)
A public health nurse (PHN) identified the importance of linking with the community social worker and other organisations and agencies in relation to infant/child development and parenting of the toddler:
'The needs change as the toddler grows ... so we [PHNs] would often link with other agencies to support and promote independence of the parents and allow the stimulation and development of the toddler'. (FG4)
Participants identified how communication is a priority for women with a hearing impairment.
'[For] a woman who was deaf but could lip read, [health professionals] should ensure to position themselves so that the woman can lip read what was being said'. (FG1)
Participants stated that during any interaction with the woman, health professionals should not ask relatives to act as an interpreter. The services of an impartial third person, a sign language interpreter should be engaged. A small number of maternity units have midwives who have received some training in sign language; however, this is not the case in the majority of units.
'We've trained our midwives in sign language. They keep their skills up, they meet once a month and sign away'. (FG3)'We [maternity unit] have a number of people who speak Polish, Arabic, Irish, Indian and but signing I don't know anyone on the staff who can do signing'. (FG4)'[A] major concern was how ... to communicate with the hospital, we [maternity unit] were thinking how would we do it and actually we use the mobile phone, we text everything and it's great, [women with a hearing impairment] could text in and the midwives used to text out ... so you have to think of ways'. (FG3)
Participants noted that information should be provided in an accessible and appropriate format, which is important if decision making and informed choice are to be facilitated. Women with a hearing impairment may need one-to-one antenatal education classes. In some regions engaging the services of a sign language interpreter was said to be difficult.
'[Name of antenatal educator] organised an individual antenatal class for them [women with a hearing impairment], a one-to-two with a sign language interpreter. [The] biggest problem would be accessing an interpreter if the woman has nobody with them, the vast majority of these women if they are severely impaired can lip read to some extent but actually getting hold of an interpreter is difficult ... it's usually ...organised through the social work department and the Irish Deaf Society'. (FG4)
Participants advocated for support and pointed out that the assessment process should consider the whole family unit i.e. if just the mother or both parents are deaf.
'Parents should be given equity and fairness and a lot of support on site and then the assessment very much will depend on the family unit'. (FG4)
Participants were of the view that community-based health service providers needed to collaborate and link with voluntary organisations and agencies.
'In the community we [PHN] would work quite a lot with DeafHear and they have sent people out with sign language with the PHN'. (FG4)'[The] community social worker department and DeafHear will give you everything and anything as regards person, manpower and equipment and it's great if the link is there antenatally between the maternity unit, parent, and the public health nurse'. (FG4)
A multidisciplinary team approach was said to be vital and should be developed in the antenatal period.
'It's important that we work together as a team, like the social work department, occupational health, midwives, the maternity care assistant as a holistic approach'. (FG1)
Participants in the focus groups suggested that the needs of women with an intellectual disability were more complex and difficult than any of the other populations. They suggested that assessment for this cohort can be difficult depending on the degree of disability. There may be serious difficulties around issues of understanding and consent to treatment.
'We [social worker] have had serious difficulties [with women with an intellectual disability] and I'm sure some patients have had difficulties with us around ... issues like ... understanding, consent to treatment'. (FG1)'Sometimes how they [women] act can be a problem ... it's [intellectual disability] not always disclosed, it's sort of an impression or an assessment [midwives make] and that can be a little bit difficult'. (FG3)
Assessing the woman's ability to parent and the potential of loss of custody can be a stressful and traumatic experience for all involved including the woman and health professionals.
'If the baby is going to be taken from the care of the mother for any reason ... that's all stress ... [it] can be extremely traumatic for the patient as well as for people working with her'. (FG1)
Participants discussed how antenatal education for this cohort needed to be facilitated by persons working or associated with the maternity unit.
'Antenatal preparation and understanding [is important], a lot of people have key workers from other services that they attend and they seem to be doing more and more of that prep work which ... would be better done in the maternity unit'. (FG1)
However, key workers and family need to be involved in the planning of ongoing care for the woman. Establishing a trusting relationship is paramount.
'[For women with an] intellectual disability, you might need more family involvement'. (FG2)'We [midwives] do ask the normal questions but we don't ask too many probing questions, we wait to build up a relationship, trust and whatever and then people just disclose'. (FG3)
Again a multidisciplinary approach and linking with voluntary organisations and agencies were highlighted. The care plan when formulated should be communicated to all members of the multidisciplinary team and documented clearly and accurately in the woman's case notes.
'Good antenatal assessment and a good plan put in place it makes things so much easier ... written communication and documented on charts'. (FG1)'Maybe lay support, voluntary support ... they don't necessarily need more midwifery or clinical midwifery input, they need to be able to access some maternity assistance'. (FG3)'From a midwifery point of view, the physiological and actual physical support is good, midwives are very focused on one-to-one care and psychological support and always involve the maternity care assistant'. (FG4)
Participants spoke of how parent education classes may need to be arranged on a one-to-one basis at the correct level and how maternity units may need to be flexible with policies and procedures.
'The most difficult thing for us [midwives] is pitching the information and teaching at the right level'. (FG4)'We [midwives] always do a one-to-one [antenatal class] and their carer comes with them and you [midwives] get their level of understanding'. (FG3)'Sometimes the main carer might be a family member who wishes to be with her [woman] while in hospital and we do our best to give them a room that they will be comfortable in'. (FG1)
The focus group discussions highlighted the lack of support outside the maternity unit for women with an intellectual disability. The deliberations also highlighted how much support is needed for parents and family of the woman with an intellectual disability.
'Often the support needed is for the parents of the intellectual disability girl who became pregnant. A lot of support is family acceptance and then ... letting them [woman with intellectual disability] know and understand what's happening and it can be quite frightening they don't know what's happening to their body and it's very difficult to communicate'. (FG4)'The lack of support outside the hospital is an issue ... there needs to be some kind of supported accommodation and it's not just for intellectual disability but other disabilities too, just to get enough time to build up the skills and the confidence sometimes just to be able to move on'. (FG1)'There would be social worker involvement in most cases and social worker awareness certainly ... if these mums need to stay in longer while learning child care and parentcraft skills that sort of thing the maternity care assistant going over and over things like bathing, more time is given to them ... we can bend the rules for them and it's individual, the maternity care assistants will do a lot of one-to-one on personal care'. (FG4)
Again the discussions highlighted how health professionals need to build good relationships and links with voluntary organisations and agencies in the community.
'Women with additional needs would be referred to ... a house or home [in the community] for people who need support in and around their pregnancy and they would stay there until the baby would be maybe, oh a good few months old, maybe even up to a year'. (FG3)
In relation to women with mental health difficulties, participants discussed issues around disclosure of the illness, the importance of developing a plan of care in the antenatal period and having an agreed mechanism of referral. Participants emphasised the sensitivity needed and the importance of links with mental health specialist services, where such services exist.
'There's a lot of stigma about mental health ... that comes back to the antenatal period at the antenatal booking visits how it's sold, how the services are sold, how the questions are asked you [all health professionals] have to be very sensitive to someone with mental health issues. It needs to be asked sensitively and if a lady does say 'I do have a history of postnatal depression.' that is followed up'. (FG1)'Women with mental health problems are usually aware of it and aware of their own needs ... [but] we [midwives] have to play it as presented... if she comes in and has being abusing alcohol or drugs or whatever we have to respond to whatever presents. Occasionally mothers do not want to disclose the abuse but you have to play it by ear'. (FG4)
The participants felt that the location of acute psychiatric facilities was a critical determinant in the referral of women with mental health issues. It was suggested that maternity units need to have a clear referral pathway. Specialist mental health services are available in a small number of maternity units. Participants from the mental health specialist services suggested that the number of women with mental health issues is on the increase, so a mechanism of referral and triaging to their services is needed.
'We [maternity unit] have a good referral mechanism if anybody has a history we refer to the mental health specialist and she sees them within 24 hrs'. (FG1)'[If midwives were] aware of somebody with a previous condition [mental health] they will flag it, but they will generally go home routinely and if there is an acute psychotic episode, then it is out of our [midwives'] hands because the person will have to be referred to and seen by the Department of Psychiatry'. (FG2)'Women tend to disclose ... low level disease ... at the clinic and then if problems arise during pregnancy, because we're [maternity unit] on the same site as the acute psychiatric facility, we [midwives] make referrals and they will come and see [the woman]'. (FG3)'Provided the mother is recognising it [mental health illness] and compliant, the support from the psychiatric and/or psychology department is excellent, they will come at any time day or night'. (FG4)'We [mental health specialist] see everyone from those with a planned pregnancy to those with unplanned pregnancy the variety is huge, like ... it's trying to be individual with the person, trying to give them choices and decisions, trying to include the GP, the public health nurses seeing what their [woman's] awareness and understanding of what is going to happening and giving them information and education'. (FG1)
A multidisciplinary team approach is essential.
'If you [mental health specialist midwife] had somebody, that has a mental health problem and they're very stable...they're on the medication, they've had a previous pregnancy and they're fine but you do have concerns about their medication we'll refer to [psychiatric team] to get a review'. (FG1)'Inclusiveness and collaboration amongst professionals, inter-disciplinary teams notifying the maternity hospitals at an early stage [but] there has been occasions where people with quite a severe [mental health] diagnosis and no information was relayed to the maternity hospitals and suddenly it's the postnatal period and it's a very serious problem'. (FG1)'We [maternity care assistant] would be always informed about how to deal with the mother and are always informed by the midwife and even though we don't have much information about mental health the midwives would tell us what needs to be done'. (FG1)
Screening for some mental health illnesses occurs.
'We're [midwives] most conscious of the postnatal depression or risk factors for it, that would be our biggest focus but we don't seem to have a high level of like schizophrenia or anything like that or even severe mental illness'. (FG3)'We're [maternity unit] not actually asking about that [abuse], we are asking about psychiatric illness but at the moment we're not asking about history of sexual abuse or even domestic abuse'. (FG3)
Participants said that, once discharged, the maternity units generally have no contact with women. Usually the social worker will follow up women with mental health illness.
'Once the women get home from here [maternity unit] we[midwives] don't know anything about them, the social worker would, if she has been involved would certainly follow them up'. (FG3)
Locating and accessing community support structures can be the biggest challenge. Lack of social contact can be a problem if the woman is living in a rural area and this raises issues around professional responsibility and accountability for the public health nurse. There is no out-of-hours service available to women, which may 'enhance the woman's sense of isolation' (FG5).
'GPs and the public health nurse are the 2 major sources [of support]. Link into the community that's where we [health professionals] fail'. (FG1)
'Mother and baby unit/beds were also said to be difficult to access.
'That's a problem of a lack of beds in the mental health services for mothers and their babies ... it's a problem accessing beds that provide the services to meet the woman's needs'. (FG1)'There's 2 beds down in [name of city] but they're not accessible because there's nobody to staff them and actually the adolescent service use them'. (FG3)'A mother and baby unit is desperately needed, desperately needed in this county'. (FG4)'More mother and baby units are needed'. (FG5)
In this theme of acceptability the relationship established between women with disabilities and the health service providers was discussed. There was a consensus that health professionals' experience of caring for women with a physical disability during pregnancy, childbirth and early motherhood is limited. When health professionals encounter such women they are learning new types of care and the challenges that arise depend on the degree of impairment experienced by the woman. Many obstacles can impede the assessment of a woman with a physical disability.
'There was limited experience of looking after women with paraplegia and pregnancy so we [midwives] did a search, to see was there any case reports on how they ... are managed. 'We [midwives] went on a big learning curve'. (FG3)'We do have more women coming through with multiple sclerosis and ... they're an increasing kind of challenge depending on the degree of deficit that they have. But they're getting earlier diagnoses now so ... they're not as profound when they come in'. (FG3)
A lot of discussion was generated around the impact that loss of custody may have on the woman with an intellectual disability or mental health difficulties. The need to implement additional monitoring and support services for this cohort in order to ensure the health and safety of the child and the attainment of developmental milestones also generated a lot of discussion. The public health nurses and social workers identified how the needs of the mother and child are considered within the context of current legislation pertaining to the protection and welfare of children. The best environment for the child must be determined and parents may need considerable support.
'The babies invariably have to go to fostering because they [woman with intellectual disability] wouldn't have the wherewithal to look after the baby without huge support and the family sometimes won't provide it for them, that support ... whether they wanted the baby or didn't want it or it was planned or not planned, they are just broken by it, really broken by it'. (FG3)'For the parenting up to 2 years there would be more extensive monitoring and support services put in and possibly social work involvement to ensure the child is safe and being parented correctly and meeting their developmental milestones and an intellectual disability person ... under the Child Care Act you [health professionals] determine which is the best environment for the child and they[parents] possibly need 24 hour support for a moderate disability mum on her own who wants to continue to parent her child so it's the needs of the mum but still keeping within the legislation for the protection and welfare of the child'. (FG4)
Participants were asked to comment on the quality of services that are currently available for women from all 5 disability strands of the study. This question generated much discussion and the consensus is presented below.
'Could do better, like the election posters, we [one maternity unit] have started to use NALA, the adult literacy agency to proof read what we are publishing and asking them is this just plain and simple English so that anyone with English can understand it'. (FG1)
It was noted how the quality of care is guided by professional guidelines and current legislation. There was consensus that the quality of care is good but the quantity of support that women receive could be improved.
'We [midwives] ... we've got our philosophy of nursing we've got our guidelines, we've got the Equality Act, [name of specific HSE area] have their own equality policy we [maternity unit] tend to use those but that does not tell us what the quality of care is like ... the quality of care is as good as it can possibly be given the resources we have got'. (FG4)
The participants identified how in the majority of units, individualised planning of care and one-to-one sessions to facilitate the exchange of information is good. Different models of care such as DOMINO or Early Transfer Home services can be beneficial in helping women with disabilities to manage the transition to their parenting role and to perform parenting skills confidently in an environment adapted to their specific needs. Participants agreed that the provision of services is not uniform; good practice models exist but they are not standardised and often depend on staff having an interest in this specific area.
'The [quality of service is] patchy ... you have really good practice but they're not standard across the country they're not standard regionally not standard even within a hospital and it's often down to personalities who have an active interest in this area'. (FG1)'People are well intentioned but it hasn't been a focus for services and the delivering of services'. (FG1)
Participants noted how service providers tend to adopt a generic approach to service provision, so for women with disabilities it can be difficult to provide appropriate services because they do not conform to the status quo. The availability of information in alternative and appropriate formats is minimal. Disability training and awareness programmes are provided but are sporadic.
'We try to normalise everything we keep trying to provide the broadest services for the most number of people and for the ones that have other needs it's very hard because you're trying to match the square peg to the round hole and it doesn't quite work'. (FG1)'Not good for information [provision] we are not terribly well set up for information. We need to have awareness training for midwives, information in Braille or in audio or CD or something so we can give it out and ... mothers can keep it and look at it over and over again'. (FG4)
Health service managers spoke of the challenges they encountered when trying to attain and use resources to best effect.
'There is so many competing resources, [the maternity unit] is competing with pressure from the HSE or the DoHC [Department of Health and Children], to meet the targets for this year and you're [midwifery administration] watching where the resources are going and you are very focused ... everybody has come across a woman with some kind of disability that might be far greater than estimated and you try and get one thing that fits everybody, meets most needs and ticks the box'. (FG1)
Support services in the local community appeared better.
'In terms of family support services in the local community ... the support is excellent where we [social worker] have gone and looked for support for somebody who has gone home we have found that to be forthcoming'. (FG1)
The public health nurses commented on the needs of women with a hearing impairment in the community and the challenges involved.
'I'm sure the quality of care is excellent ... I would imagine they [women with hearing impairment] need far more public health nurse support visits than they are getting ... with regard to the quality of care and follow up visits they should be getting more than resource and caseloads allow'. (FG4)'The voluntary agencies' links with the public health nurse is excellent, both as a resource and as a support. DeafHear is excellent, fantastic but the public health nurse could do more and would like to do more but the resources are not there'. (FG4)
For persons with an intellectual disability there are a lot of resources and supports available in the community in conjunction with intellectual disability services.
'In the community for persons with an intellectual disability who have had a baby there are a lot of resources and supports accessed in co [company] with community intellectual disability trained nurses who work alongside the public health nurse. They have a core of staff and resources that the public health nurse taps into'. (FG4)
The public health nurse provides very practical support for women with mental health difficulties. However, the psychiatric team do not always communicate the woman's treatment programme to the public health nurse so in some cases the care can be fragmented and disjointed.
'Quite often it [care plan] is not communicated to the public health nurse what programme they [women with mental health difficulties] are offered or need'. (FG4)
One core issue that dominated the discussions was the lack of out-of-hours services for women with mental health difficulties. Participants noted how in the evenings and at weekends, responsibility with regard to the woman's safety reverts to family members.
'We [PHN] are operating a 9 to 5, Monday to Friday service; we haven't a plan to extend to out-of-hours services'. (FG2)'Often in the community you have mothers who have attempted OD [overdose] or attempted suicide and the public health nurse is there she can only access NowDoc [GP out-of-hours service], casualty, or the GP or social worker and often they don't come or the hours have passed. Our [PHN] closest and best colleagues are often the Gardaí that get the child and mum out of there so it's a big worry and a big gap. Public health nurse services just work 9.30 to 5.30... not nights or weekends, so it's the out-of-hours where a lot of responsibility is put on the family unit'. (FG4)
Participants were asked to identify the greatest challenges in delivering services to women with disabilities. The following is an accumulation of the core challenges identified. There was a perception that there was insufficient legislation governing the provision of services for women with disabilities. Participants suggested that legislation is required to ensure the physical environment is accessible to all.
'We [maternity units] are all doing bits of building works in all our hospitals but if it [universal access for all] was somehow built into building requirements, it is in a lot of things ... but meeting the needs of all people is not there. Then we have a lost opportunity at architectural and contractual level and it's not just physical [disability] but all other disabilities as well'. (FG1)'Legislation, you can have report after report but you need legislation ... you could address some issues but not all, like in relation to access and things like that but for the things we are trying to achieve [assessment of needs] there needs to be specific legislation for it'. (FG1)
Participants described the current services as fragmented. They identified the key challenges as; a lack of collaboration between professionals, 'attitudes of health professionals' (FG5), a lack of disability awareness and training, insufficient information in appropriate formats, competing resources, increased workload or caseload and a lack of continuity of carer. Participants discussed the difficulties in accessing sign language interpreters and spoke about the need to develop professional guidelines and policies that could be implemented in all maternity units.
'Leaflets and information tends to be quite generic. The provision of adequate information would be a challenge'. (FG2)'No Braille ... that's one of the biggest problems, there's no Braille and the other thing ... which may be good for antenatal teaching is to have a CD on antenatal teaching'. (FG4)
Participants identified specific challenges to women with mental health difficulties. These include no available data on the effects and consequences of mental health and a limited number of mother and baby units. The main challenge for the public health nurse is the lack of out-of-hours services, which is a source of anxiety and stress. The lack of collaboration or interdisciplinary approach to care between the community psychiatric nurse (CPN) and the public health nurse was also considered a major challenge.
'It's still a little alarming that there isn't an agreed minimum standard around the country. There's no kind of agreed strategy [mental health] or anything like that. We have no kind of national plan or regional plan'. (FG3)'[With the] 2 strategies, a Vision of Change and a Transformation programme and primary care, there was no cross over at all. [They are there] in parallel pathways and nobody decided well listen I think that we better talk to this group over here'. (FG2)'We don't know how it affects our women either in terms of how many of them suffer severe illness and what are the consequences in terms of even suicide. We don't gather that information. It's not reported ... that's very alarming'. (FG3)
Some health professionals lack education in the area of mental health care, have limited experience of engaging therapeutically with women who experience mental distress and lack awareness of the impact of mental health difficulties on women and mothers lives. The use of screening tools such as the Edinburgh Postnatal Depression Scale is not widespread and, despite the existence of agreed local referral pathways in some areas, the public health nurses have experienced challenges when attempting to implement referrals to specialist services. Often women are unaware of the services available and where to access these services.
'If the mother is non-compliant with her [treatment plan] or does not recognise her illness then we [midwives] have bigger challenges and our challenges would be staffing. You have to monitor mother and you have to be careful of baby care and the safety of the baby. You watch the mother who is apparently sliding into a psychosis of some kind and you think what is she capable of and it can be very frightening, very frightening. Very few midwives would have any psychiatric training'. (FG4)'[The] Edinburgh Postnatal Depression Scale (EPDS) ... we[PHN] have tried to roll that out, in some areas in the country they have been successful ... but we are actually coming up against barriers, the actual psychiatric consultants themselves ... we have trained our public health nurses on the use of the Edinburgh Postnatal Scale, we have written up a policy on how to implement and all the rest of it but when the key player, the consultant psychiatrists, are not playing with us, it is very difficult'. (FG2)'[The] referral pathway for us [PHN] in the community is to the GP and, with the greatest respect to the GPs, that depends entirely on the GP that you are referring to'. (FG2)
The challenges for women with an intellectual disability focused on the necessity to monitor parenting skills. The importance of sexual health education for these women was also discussed.
'The amount of sexual health education some of these young people receive [requires review] ... most of them are no longer in religious institutions, they're in voluntary institutions funded by the state but they have not made that transition to providing sexual health education for these young people'. (FG3)'The challenges for mum with an intellectual disability can be so extreme from mild to severe there isn't enough resources there, isn't 24/7 from the public health nurse department. It's very much you [PHN] are going to walk out the door and you have the child welfare to think of and without the support of the family unit the challenges tend to be greater'. (FG4)'The HSE, and HSE support and voluntary agencies all give a lot but all shut off at 5.30pm Monday to Friday and at the weekends there is [name of parenting supports], but social workers, nurses, all there Monday to Friday 9 to 5 but come nights at 8 or 9 or the weekend there is no one'. (FG4)
Participants were asked to suggest measures to address the challenges encountered when providing care and services for women with disabilities. To enhance service provision for women with disabilities when accessing the publicly-funded health services during pregnancy, childbirth and early motherhood the following suggestions were made by the participants.
'There is a huge responsibility on the HSE corporate to acknowledge that this is a challenge [service provision] ... that we need to be supported in as frontline workers. The HSE corporate and the HSE have to look at this. This is an area that they have actually never sat down and looked at and started to ask questions about how can we [health professionals] start delivering a service to this particular client group if it is something that has not been reviewed'. (FG2)'Integrated care pathways would be the best way to address physical issues when she [woman with disability] accesses services'. (FG1)
'Looking at this [provision of services] in a very structured way. A lot of challenges can be overcome if there is links with particular services. Interdisciplinary communication within the hospital setting goes a long way to overcoming the challenges'. (FG2)
'Accessibility to our existing HSE buildings is not good'. (FG2)
They [women with mental health issues] have so little services out there [community], what else can [midwives] do if they don't have somewhere that they can send this woman, if they don't have the therapy within the GP service, if they don't have counsellors, if there is one community nurse to cover half of [name of rural area]'. (FG3)
'It's a challenge for the public health nurse. It's such a worry and a stress, wondering if mum and baby are going to be alright until tomorrow ... another challenge from the public health nurse perspective would be the lack of communication and interdisciplinary work between the CPN [community psychiatric nurse] and public health nurse - it's good in some areas but not in others. The CPN may not know the public health nurse was in or vice versa or what treatment the woman is on, each discipline is working in their own kind of professionalism without linking with the other'. (FG4)
'[Health professionals] support them [women with disabilities] but they go out that door very quickly, so really their life is in the community and that is where the difficulties really are'. (FG2)'[Women with disabilities should] be able to access a little bit of help. Nothing fancy, nothing very high tech, no masters, PhD people, just somebody to help them learn mothering skills, like a big sister project or something like that'. (FG3)
'Be very mindful that without the voluntary organisations and agencies out there we [public health nurses] would not be able to survive'. (FG2)
'Doing everything that we can to support them [women with disabilities] and to facilitate them and to make their journey as easy as possible... the disability teams that are established in all of the Local Health Offices it would be a good way of linking in with them to look at providing in-house training, not necessarily training at huge expense'. (FG2)
In early September 2009, 6 services were invited by the National Federation of Voluntary Bodies to attend a focus group to discuss the challenges that pregnancy and early motherhood posed for intellectual disability (ID) services. Representatives of 4 services attended. These services were all from Leinster and comprised both campus and community residential, day and vocational services. Two of the representatives were social workers, one was a senior nurse and the other a service administrator.
The specific aims of this focus group were:
It was clear from the discussion that in the professional experience of the focus group participants the occurrence of pregnancy, childbirth and early motherhood is not common across the services. Whereas 3 individuals spoke of their experience of having to address this issue, one stated that no such incident had taken place in that service. It was agreed, though, that sexual relationships and pregnancy, in particular, posed complex challenges to all services at a number of levels: legal requirements; mother and child support; finances; and child protection.
It appears that services differ significantly in how they address sexuality for service users. It was acknowledged that, for 2 of the services, this was shaped by the Criminal Law (Sexual Offences Act) 1993, which identified sexual intercourse with a person who has a 'mental impairment' as a basis for possible conviction. Thus, in those services, any sexual activity between service users was prohibited. This immediately placed an occurrence of pregnancy firmly within the context of breach of policy and, possibly, of criminal law. The other 2 services had developed policies that were focused on individual needs and preferences and the representatives confirmed that these could be constituted by some as potentially placing them in contravention of the above law.
It is clear though, that in one of the services that prohibited sexual activity, pregnancy had occurred and this was managed in a supportive, individualised manner. However supportive services can be, however, they appear to be caught in a difficult situation, balancing the rights and needs of the women in their care with legislation-based child protection issues. It was in this regard that the participants suggested that the foci of ID and public health services differed. This was most evident during the discussion of the HSE community childcare services that had been perceived in a negative light by the small number of women with ID who participated in this study. The service representatives similarly described their experiences of such services to be negative but noted that social services were often informed in their decisions by their experiences of managing child protection issues that arose in respect of women with ID who were not in receipt of specialist ID services, and who were not coping well. It was suggested that time and, in particular, financial resources were central to decisions to remove children from their mothers, and that this was a significant difference between them and the ID social workers. Social workers employed in ID settings are able to give time to women and children on their caseload, but this is not the situation for those working within general social services who are often under-resourced and who must, therefore, make decisions on the basis of 'child-first'. It was clearly noted though, that ID social workers' attempts to prevent crises by contacting HSE social services early in the pregnancy were often not responded to. Thus, there was inadequate interagency communication and the involvement of social services occurred at a late stage when they realised the situation and considered the pregnancy to be a crisis pregnancy. The ID services, however, despite their ability to dedicate greater time to their caseload, are also limited in their ability to address the particular needs of mothers and children, as these are not accounted for within the finite financial resources that are made available for adult ID services.
Some services are attempting to address sexuality and its consequences through the provision of sex education, but much of this appears to be preventive in nature. Others have acquired living accommodation for couples but, despite the progressiveness of this, they acknowledge that they may not be in a position to support the inevitable need for accommodating family units. It was suggested that potential service user responses to prevention through prohibition was for sexual activity to 'go underground' or for service users to discharge themselves from service.
There was agreement that the general needs of the women with ID who had attended maternity services were well addressed, prior to involvement of the child protection team. It was identified, though, that care was not always individualised to the specific needs of these women and that the extra support was expected to have been provided by the ID services. Information, therefore, was not made accessible, and there was no commitment to give the women the time that they required to understand information, choices and decisions; this was left to the ID staff. Similarly, during the hospital stay, it was expected that ID services would provide personnel on a 24-hour basis to attend to the women's needs. It would appear from this, therefore, that continuity of care between ID and public services was lacking. This suggestion is reinforced by the fact that none of the focus group participants were aware of the fact that maternity services offer parent-craft classes to pregnant women, and by the reality that none of the women in their services had availed of them. Parenting skills were, however, offered locally by at least one ID service.
In remediation of the above issues, the participants proposed that many of the problems were grounded in the training/preparation of professionals and in the need for clear guidelines regarding the care of women with ID. Furthermore, it was suggested that there was a need to move towards more individualised services for women and mothers who have ID, and to move away from an overtly legalistic interpretation of this issue. In order for such individualisation to occur, it was suggested that there was a need for increased and individualised budgets to meet the needs of individual women.
When the focus groups were concluding participants were asked to identify one aspect that they would consider most important in the provision of services for women with disabilities. For women with a physical and sensory disability, the most important issue was access to, from and within the maternity unit/hospital.
'One-to-ones and recognising that people have difficulties, that's quite good ... [but] more in signage. We haven't really done anything about it because it's a resource issue. On the entrance to maternity [unit] there is a door bell, somebody speaks, they're [women with hearing impairment] not able to speak back, ... a second bell that will actually light up ... we haven't got that yet'. (FG3)
Participants highlighted the importance of developing and implementing an individual plan of care for all women regardless of their disability. An appropriate referral mechanism needs to be established and current services remodelled to facilitate better, efficient use of available resources.
'We [maternity services] have a lot of remodelling of current services [which] we could be doing better. We have and we could be using our resources much more effectively than we currently do. We have grown up with a medicalised model of care and we have been slow to move despite an abundance of evidence and the pressure on our resources will actually be the catalyst to change that ... [we need] better use of resources not losing anything but gaining a lot'. (FG1)
Participants considered the community-based models of care as evidence of good practice when addressing the individual needs of women with disabilities. There was an overwhelming sense that current resources could be used more creatively and efficiently to meet the needs of women with disabilities but the out-of-hours services and a lack of community-based support structures and/or mother and baby units were considered a deficit that required immediate attention. Given that the women interviewed in the mental health strand identified the community support services as being of greatest help to them, that would appear to be the area that should receive most attention.
The education of professionals was identified as an urgent need and the need for clear guidelines regarding the care of women with disability, particularly intellectual disability, was noted. It was suggested that there was a need to move towards more individualised services for all women with disability, with concomitant increased and individualised budgets to meet the needs of women with intellectual disability living in supported accommodation.
[6] The Early Transfer Home (ETH) scheme is implemented in the majority of large maternity hospitals in Ireland. Women who meet certain criteria of normality are, with their consent, transferred to the care of the ETH team. A midwife from the team assess the woman’s needs, she and her baby return home within 24 hours of the birth, and are visited by a team midwife daily for (usually) 2-5 days.