The importance of communication
Those participants who were able to identify a single health professional with whom they had regular communication demonstrated greater satisfaction with communication than those who could not. Having a health professional who they knew by name, and could contact, provided reassurance and continuity. This health professional may or may not have been the allocated KCP.
‘She rings me after the meeting each week and I’ve kept well up to date with what’s happening in Mum’s care . .. whereas when Mum’s been in hospital before and I’ve rung up, you feel they don’t really know who you’re enquiring about’. (Caroline, daughter).
‘The social worker has been great. She even gave me her direct line and said ‘Ring me any time’ which is amazing — not many people say that to you, and if they do they don’t mean it’! (Natalie, daughter).
Despite the fact that all patients and families are allo- cated a KCP on admission, it appears that some clinicians take on this role with more success than others.
‘I was told there would be a family meeting but it never happened. My daughter and I were quite prepared to go but were never invited to a meeting’. (Sylvia, wife).
‘If you asked John he’d say there’s no communication at all’. (Jan, wife).
Not knowing what is going on with their relative can unnecessarily escalate anxiety in the family carer.
‘I didn’t get a phone call. I had been awake worrying you know because I didn’t think he was well enough (for a home visit). (Jan, wife).
Most of the participants reported that they had had very little communication with the doctors, and mostly their con- tact with them was by chance, but they did not think they were a source of information.
‘I have seen the doctor twice.. . but that was just lucky, he just happened to come in’. (Rhoda, daughter).
‘I have waved to the doctors and said ‘how’s he going?’. .. and that’s about it. I don’t get any contact’. (Jan, wife).
‘No (I haven’t had much contact with the doctors) but I feel well enough informed not to’. (Caroline, daughter).
When talking about nurses, the participants reflected positively on the care and support provided by the nursing staff.
‘The nurses were great and very patient with Dad (Natalie, daughter).
But interestingly, when talking about accessing informa- tion, participants suggested that shift work and the numbers of nurses in the ward meant that nurses were acknowledged for providing care, but they were not seen as a source of information concerning care decisions, or discharge plan- ning. This is also likely due to the fact that nurses were less likely to act as KCP, and thus while the care provided by nurses was acknowledged, they were not regarded as a source of up to date information.
‘.. . if you’re getting a different nurse every day that makes it difficult for the family to sort of ask questions: ‘how’s she going?’ you know. (Marie, daughter).
Those participants who reported spending time each day in the hospital with their relative reported feeling better informed, perhaps because they had more opportunity for contact with the staff.
‘I think if the family wants to involve themselves then they will find out everything. If they don’t and they come once a week well, you know. ..’ (Marie, daughter).
Carer stress
Many of the family carers were older people themselves and consequently may also have health or cognitive problems which impact on their ability to provide care for another. The stress involved with having their relative in hospital was evident, and the level of commitment to their relative was described as a burden, yet they felt compelled to be present for their relative.
‘It’s been bloody hard.. . I was fifteen and he was sixteen when we met.. . we’ve just sort of been us’. (Patricia, wife).
‘It’s been very worrying and very tiring’ (Sylvia).
The younger participants also found the experience stressful in some instances, related not only to the health of their relative but to their concerns about discharge plan- ning and their other responsibilities, such as caring for their families and work.