From the question posed about how the carer thought the individual(s) they supported kept themselves healthy and specific questions about breast awareness and screening (the focus of the main study), three themes emerged that related to health in a general context when supporting people with learning disabilities.
The theme ‘Care within boundaries’ explored how the carers interpreted their role and the influence they had on the health of the individual with learning disabilities whom they supported. The common element shared by the carers was that they had undefined roles in relation to overall responsibility for the health of the person they supported. What emerged was a hierarchy of responsibility for overseeing the client's health, although at times, this intersected with that of other individuals, for example, family members or health professionals who were also seen to have input which might positively or negatively affect health interventions.
The participants had been drawn from paid-carers in the daycentre and residential sector, as well as family-carers. Their roles had obvious differences and each group had different perspectives about where the responsibility for their clients’ health lay. Both the paid-carers who worked in the day centre setting saw ‘health’ as the remit of the residential-setting, but for different reasons. Nelson worked in an independent day centre and was responsible for a workshop that was run as a business to generate income for the centre. In contrast, Margaret's day centre provided activities such as art, music and baking and was partly supported by funding from Social Services. Nelson's views reflected normal working practice, in that health matters would be the remit of the occupational health department; whereas, Margaret identified the cultural differences between Social Care and Health.
“For me there's a real split between social work and health and what one sees as a health problem can very often be left out of a day service provision because it's not seen as appropriate.” (Margaret)
Despite the day-centre staff viewing health as the remit of the residential staff, those working within the residential setting revealed further divisions about the responsibility for health which were firmly rooted in the philosophy of workplace. Six of the eight residential paid-carers saw ensuring the health of their clients as part of their role.
“There's a lot more responsibility on the carers now. It's not just cooking and cleaning but everything. Health is an important part as staff have to ensure the residents are well maintained. It's their job.” (Veronica)
In contrast, Janet and Nicki, who worked in a Social Services funded home, affirmed that health was not seen as part of their responsibilities.
“To be honest health isn't encouraged here. They told me I had to forget all I knew about health as it wasn't something I needed to know. Here it's about helping the person live independently and be independent.” (Janet)
This seems contradictory as many aspects of being independent, such as being able to go out into the community, relied on being in good health. In contrast, the role of the family-carers was the most complicated as they had the relationship of parent or sibling, but were also a carer; hence, the boundaries between these roles were constantly shifting. Despite this, ensuring the health of their family member with learning disabilities was seen as part of their role, although ‘transition’ complicated this role somewhat. Kirsty was a carer for her sister, and her situation was different to that of Heather and Vicki (parent-carers) because she also had learning disabilities and received support from the CLDNs whom she consulted if she had any concerns. The parent-carers had responsibility for all decisions about health until transition, after which the young person legally became an adult and was able to make their own decisions unless there were issues with capacity. Where capacity was an issue, ‘Welfare Guardianship’ could be obtained by the family-carer (and the position is the same for paid-carers) giving the carer a legal right to remain involved in decisions. Both Vicki and Kirsty were Welfare Guardians.
“When the smear test came through they automatically phoned me and said ‘What would you like to do about this’, because I'm still her care-guardian.” (Vicki)
Heather had no Welfare Guardian rights, which meant that her daughter now made her own decisions. Relinquishing this role as decision maker had been difficult for her – she was now left out of the decision-making process and unaware of what decisions her daughter was making.
“When they move into the adult services, they are in charge, and we get to know nothing. We have to ask. We can't interfere.” (Heather)
This identified a dichotomy in making decisions about health, regarding those individuals with learning disabilities who had capacity and those who did not, and between carers with Welfare Guardian responsibilities and those without them. Although family and residential paid-carers were seen as the guardians of health for the people with learning disabilities they supported, all carers identified further layers within the decision-making hierarchy. Paid-carers noted that some family members often remained involved in the person's care. These family members were seen to constitute two groups: those who worked with the paid-carers and trusted their judgement and those who did not. For example, Elaine noted that family members often responded more to health issues raised by health professionals than by paid-carers.
“Parents put more credence on health issues being spoken about by health professionals rather than support-workers.” (Elaine)
However, whether family members saw them as helpful or interfering was dependent upon the paid-carer/family-carer relationship. Despite these problems, other paid-carers reported that family-carers were important sources of information, especially about inherited conditions.
The reasons for these views were not explored with the paid-carers, although they suggested that family-carers differentiate between health roles and care roles. This might have been due to the perception of care work, which is often associated with a low status, limited training and high turnover of staff. In this study, the average length of time that the paid-carers been working in the same post was 5 years but ranged from 1 to 11 years.
Half the paid-carers in this study also noted the poor communication within and between the care sectors and the family homes. Not knowing the health problems of their clients was potentially dangerous and could have an impact on the individual:
“They don't tell us that they have diabetes or epilepsy.” (Nelson)
This was noted by Heather, the family-carer:
“When the nurse came to tell her about her breasts….They went upstairs, and made it clear it's Holly they were here to see. So if we don't know, how can we help?” (Heather)
This disempowered Heather in supporting her daughter in this activity. This resonated within the care sector, as there appeared to be a number of unspoken boundaries about raising health issues with other sectors which might be construed as interfering or checking up on the other sector.
“There are boundary issues, do you approach a carer when you first notice something or do you wait until they say something to you about them not feeling unwell.” (Elaine)
The examples above identified a number of boundary problems for carers in terms of ensuring the health of people with learning disabilities.
The second theme, ‘Doing the best we can’, examined how the carers attempted to monitor health and the challenges that this presented. All the carers acknowledged the difficulty that people with learning disabilities have in keeping healthy due to their limited insight into their health. Consequently, all carers said that they undertook some form of surveillance of their client's health, including those who said that health was not their remit. Knowing the person well was advantageous as the carer would be better placed to monitor any changes in health or behaviour. However, unlike family-carers, some carers noted that continuity was a concern within the care sector and could inadvertently place people with learning disabilities at risk:
“The residents appreciate continuity and know who's looking after them. You can also monitor how they are doing. In other places you can't and things get missed.” (Veronica)
Within the discussions, it was noted that clients with severe/profound learning disability received closer surveillance because they were more dependent on carers for their care and less able to communicate problems. Those with mild-moderate learning disability were seen to be disadvantaged because they did not need assistance with personal hygiene which limited surveillance and placed more reliance on them discussing problems.
“We don't know what their skin is like, whether there is a rash or it is dry. Things like that that could be important.” (Fergi)
This was a concern because there seemed to be no consistent means for clients to obtain health information, with Margaret suggesting it was ‘pot luck’. Despite this, television soap operas or advertisements were identified as potential sources of information for people with learning disabilities. For example, Nelson suggested that “They are really influenced by the TV ….This is where they get the information from.” The remaining carers spoke about more formal channels such as attending groups at the daycentre, talking to the doctor and carers. No carer mentioned talking to their friends about any health problems, although some disclosed that clients often saw ‘staff’ as friends. This indicated that there were few independent sources of support outside the home.
A noteworthy finding was that Kirsty was informed about how to keep her breasts healthy from her sister, Honey, who had attended a daycentre course.
The third theme, ‘The problem is…’, reflected the difficulties of explaining health interventions to clients. A generic difficulty mentioned by all the carers was in ensuring people with learning disabilities understand what was being said. This meant that all the carers had become skilled communicators, in that they knew how to get the balance right, that is, not frightening their clients and tailoring what was being discussed to the level of their disability. The key to this skill, mentioned by over half the carers, was the importance of knowing the client.
“The longer you work with the guys, you get to know them, inside out, but it's the communication that's the hardest part.” (Emma)
Carers used different approaches to convey the health message – for example, pictures were seen as very useful because clients could visualise the procedures, whilst a quarter spoke about getting other people to talk to them or finding other resources to help explain things.
Those carers who worked with people who had severe/profound learning disabilities often had to make decisions on behalf of their client because these clients would not have capacity to consent. Sandra and Maureen worked exclusively with people with severe and profound learning disabilities. They explained that in their workplace, decisions on health were based on the following criteria: ‘best interests’, the level of distress that would be caused and the need to sedate their clients. This was in contrast to Vicki (family-carer), who would the first to be consulted about health decisions about her daughter as her Welfare Guardian. During the interviews, a further contention was identified by some of the paid-carers working in the social care sector who said that it was up to the woman to choose whether she wanted to discuss health matters.
“We have to ask them, we have to give them the right to choose if they want to talk about certain aspects of health.” (Nicki)
If the woman did not want to listen or talk, then discussion of the subject was terminated. Nicki also intimated that it was up to the client then to pick up the discussion, but this again presented difficulties such as remembering the topic or realising that there was a problem; this resonates with the point Heather (family-carer) made earlier regarding her daughter's breast awareness. Several carers also acknowledged that some people with learning disabilities would always do what their carers or parents wanted them to do just to please them. Despite this, carers consistently demonstrated awareness that people with learning disabilities were autonomous decision-makers and that they should not make the decision on their behalf.