Despite the rhetoric, carers are often required to look after sick and disabled people with a lack of information no professional would tolerate.
Hilary Arksey and colleagues explain
Hospital discharge and continuing healthcare raise difficulties for both health and social services, problems which subsequently have an impact on service users and family carers.1
Our research among carers and patients with physical and complex disabilities has found that providing information is a crucial indicator of the perceived effectiveness of, and satisfaction with, hospital discharge.2 Carers' main advice to others about to take on a similar role is 'ask, ask, ask for information'. Lack of readily accessible information and poor communication added to people's burdens.
The emphasis on the role and needs of carers in the community care reforms, culminating in the Carers (Recognition and Services) Act 1995, implies the need to give better support to carers. But our evidence suggests that familiar and long-standing problems are still not resolved.
We have recently completed a project focusing on carers' views of hospital discharge procedures for 18-65-year-old adults with physical and complex disabilities. These included stroke, spinal and head injuries, multiple sclerosis, Parkinson's disease and those recovering from major surgery. Interviews were conducted with 22 carers, and 13 of the patients they cared for who were well enough to be interviewed, between four weeks and three months after discharge from hospital.
In addition, 15 managers and practitioners from health and social services were interviewed. The work took place in four sites, including two younger disabled units (YDUs), hospital wards and specialist units at hospitals in the north of England. Patients generally have longer stays in YDUs than people in acute wards so there is much more time available for discharge planning. But we found dissatisfaction among all groups of carers.
What mattered to carers was good quality information on everything to help prepare them for when the patient returned home for good, and indications of what the future might hold (see box). In comparison, patients seem less concerned with information issues, but this might be explained by the patient-focused nature of hospital services.
Many carers' concerns revolved around medical issues. They wanted general information about the patient's condition or disease, as well as how it affected the patient. Equally important was information about the different stages of the patient's condition and chances of improvement. Many carers had prime responsibility for the patient after discharge from hospital, and some felt they needed to know about indicators signalling a deterioration in the patient's condition.
Some of what carers want to know conflicts with confidentiality. If the patient does not give consent to the disclosure of confidential information, doctors must honour this. But upholding this fundamental principle, which is set out in the General Medical Council's guidance on good medical practice and enlarged in a booklet on confidentiality, may well conflict with carers' needs.3
From the carer's point of view, this stance shows little understanding of their new role. In comparison with doctors and nurses, who generally would not go into this sort of situation without full information, carers have a higher number of contact hours, are responsible for a good deal of the day-to-day care, yet can be ignorant of many aspects of the patient's condition. Reconciling these conflicting interests is something policy makers, managers and practitioners ought to address if carers' needs are to be met.
Carers' questions concerning the nature of the patient's illness and recovery are also problematic. Very often doctors do not have definitive answers and cannot provide the reassurance that carers seek. Doctors often suggest that lay people are unable to deal with risk and uncertainty, but studies have shown that this is not necessarily the case.4 In view of this, consideration should be given to providing carers with information detailing a range of possible outcomes, with caveats.
Carers expressed the desire for information to be given in face-to-face interviews, leaflets and audio cassettes. Some also expressed the need for hands-on training in areas such as lifting. Common sense might suggest it is sensible to give information verbally, and to back it up with written details. Some people found the information difficult to understand as professionals used jargon and technical language. And clearly it is important to remember that, for members of some ethnic minority groups, translated material is necessary.
We found that the timing of information was as important as the format. It is not appropriate to present too much information at the outset, a point recognised by some of the practitioners we spoke to. In the early stages, people may still be in a state of shock, or be angry, or in denial. Some doctors operated an open-door policy whereby carers could access them when they wished. But it seemed that many carers did not feel particularly comfortable with this sort of system, fearing that they would be seen as somehow being a nuisance.
Perhaps it is necessary for professionals to take the lead, giving information in stages, according to carers' needs at the time.
There were clear disadvantages to using informal mechanisms for giving information. The same information could be provided several times, or not at all, and providers of information sometimes assumed that information given to the patient would subsequently be passed on to the carer. Several carers reported suspicions that their patient was acting as gatekeeper, not passing on information which staff believed would find its way to the carer. All these are important issues which need to be addressed by managers. One solution would be to implement systematic monitoring to record information-giving activities. This would remind practitioners of the need to record when, what and to whom information was given. Greater clarity in defining professional roles would reduce confusion about whose responsibility it is to provide information on particular topics.
What implications do these findings have for policy and practice? There is consensus that the provision of information and good communication is a vital element in hospital discharge planning. This emphasis is evident in policy statements at national and local levels, as well as guidance aimed at improving procedures.5
But these documents tend to compound terms such as 'patient/carer' or 'patients and their families and/or carers'. Such an approach fails to clarify the specific position of carers with respect to information, advice and consultation. This can pose difficulties for practitioners.
Despite the policy's implied priority of informing carers, we have found shortcomings. On the basis of the evidence, there is a need for written and verbal information which is relevant, accurate, tailored to individual needs, and given at appropriate times; information about the roles of different agencies; encouragement to ask questions; and skills training, particularly in lifting and transfer techniques.
Systematic monitoring is required to ensure carers are kept informed and involved during the discharge process. Clarification is needed on which professionals should give what information.
Ensuring carers are better informed would enable them to be more involved in the discharge process and lead to more effective caring. The significance of information has long been recognised by the Carers National Association. One of the eight key principles of the carers' code of good practice for health and social care providers is that staff understand they have responsibility to signpost carers to appropriate information sources, as well as provide information before, during and after caring.6
Unless the availability of information, and its delivery and distribution, become more methodical, carers are likely to remain critical of health and social care services.
1 Henwood M. Discharge account. Community Care 1997; 6-12 November: 28- 29.
2 Arksey H, Heaton J, Sloper P. Carers' Perspectives on Hospital Discharge Procedures for Young Adults with Physical and Complex Disabilities. York University, social policy research unit, 1997.
3 General Medical Council. Confidentiality. London: 1995.
4 Irwin A, Wynne B (eds). Misunderstanding Science? The public reconstruction of science and technology. Cambridge: Cambridge University Press, 1996.
5 Henwood M (ed). Hospital Discharge Workbook: a manual on hospital discharge practice . London: Department of Health, 1994.
6 Carers National Association. Carers Code: eight key principles for health and social care providers. 1994.