Guidelines to facilitate the involvement of lay carers in the care planning of the person with dementia in hospital.

Walker E, Dewar B, Riddell H (1999)
Queen Margaret University College, Edinburgh

Executive Summary

Background to the study

Over the last fifteen years, a central theme of government health care policy has been to encourage the NHS to change the way it relates to those who use it. The aim is to create a health service which is accountable to users, which is responsive to their needs and in which users have greater control over what happens to them. On a micro level this entails finding ways to involve patients and, where appropriate, carers in decisions about care planning. Where carers provide home based care (as in the case of dementia) their involvement in decision-making and their access to information about their relative’s care is necessary to ensure that their caring role is supported rather than undermined by hospital based care.

However, the literature strongly indicates a gap between policy and practice in relation to involvement. The general experience of carers is reported to be that they are excluded rather than involved in the process of care within hospitals.

The Study

The intention of this nine month, part-time study was to investigate the issue of involvement in a specific health care context with a view to identifying both opportunities for change and practical, realistic ways of bringing about that change.

Aim

The study’s aim was to develop guidelines to facilitate the involvement of carers in the planning of care for an individual with dementia while they are in hospital.To achieve this, five key questions were addressed:

• What involvement do carers have in care planning?
• What processes facilitate or impede the involvement of carers ?
• What involvement would they like to have if the level experienced does not match their preference?
• How do health care professionals perceive the involvement of carers ?
• What are the possible resource implications of such involvement?

Methodology

Field site

The field site selected comprised a respite and assessment (23 bedded) ward and a day hospital within the Psychiatric Unit of a hospital specialising in the care of older people.

Sample

• 20 carers whose relatives were either attending the day hospital for respite, or had been admitted to the ward for respite or assessment.
• 18 qualified and assistant nursing staff from the ward and the day hospital.
• Other members of the multidisciplinary team (n=5 doctors, n=2 occupational therapists [OT], n=2 social workers [SW], n=3 community psychiatric nurses [CPN]).
• Clinical nurse manager.

Data

Multiple methods of data collection were employed. Data comprised:

• Interviews with carers (n=20), nursing staff (n=8), members of the multidisciplinary team (n=12).
• Focus Groups with nursing staff (3 Focus Groups incorporating a total of 9 staff).
• Observation of family meetings (n=10) and multidisciplinary team meetings (n=4).
• Documentation related to admission, discharge and care plans of the patients whose carers were participating in the study and to hospital documentation (Core Nursing Standards, Ward philosophy).
• Field Notes from informal observation and conversations with staff on the ward and in the day hospital.

Data Analysis

The data were analysed using a constant comparative method (Glaser & Strauss 1967) in which the research team continuously compares sections of data (whether interview, documentary, or observation) to identify salient categories and themes and to clarify their characteristics. As themes emerge they then form the basis for exploration in subsequent stages of data collection.

Conclusion

Although carers are involved in decisions relating to care planning both on the ward and in the day hospital, the level and nature of such involvement tends to depend on the practice of individual members of nursing staff.There is no agreed set of principles and procedures, formulated by nursing staff themselves in conjunction with management, to ensure that opportunities for involvement are open to everyone. As a result, involvement often depends on the assertiveness and proaction of carers rather than on the initiative of nursing staff.

Fundamental issues relating to carer involvement have not been addressed. Whose responsibility is it within the context of the multidisciplinary team to provide emotional support to carers, or to ensure that they are kept informed, or to check whether they are satisfied with the outcome of family meetings? If these are the responsibilities of nursing staff, and, specifically, the patient’s named nurse, then time needs to be organised, by both practitioners and management, to support these activities as priorities.

Some members of the nursing staff perceived involvement as a reciprocal relationship in which the expertise of carers and their potential contribution to the quality of care was valued. However, also in evidence was a paternalistic attitude in which involvement was largely seen in terms of providing carers with information and emotional support. This highlights the need for the development of a consensus among practitioners to identify good practice in relation to involvement.

Through such a process the issues which currently serve to inhibit involvement may be identified and addressed. Principally, the attitude of nursing staff to potential complaints and to their own role in dealing with emotionally intense encounters with carers needs to be explored in order to enable nursing staff to develop more positive relationships with carers. In so doing, a culture may emerge which supports empowered staff to take a more proactive approach to changing practice.

For the majority of carers the hospital setting is an alien environment. They do not know what role to play or where they might fit in or what opportunities for involvement there might be (Laitinen 1992). Consequently, they are reliant on nursing staff, as their main point of contact, to guide them. Nursing staff can only do this if they themselves have a clear focus for involvement.

The views of carers participating in this study suggest four markers of a satisfactory level of involvement:

• feeling that information is shared
• feeling included in the decision-making process
• feeling that there is someone you can contact when you need to
• feeling that the service is responsive to your needs.

People with dementia and their carers may not be referred to an OT, or to a CPN or to a SW. However, if they are within the hospital setting (receiving day or residential respite services or assessment services) nursing staff are their main point of contact. Previous research highlights the importance for carers of having a key contact (Sheard 1998). This is further endorsed by the present study. Currently, the named nurse system seems to function well in the day hospital in providing a key contact for carers. However, in the ward, shift working and time constraints mean that carers may have no key contact. This affects how information is shared, the availability of support, how carers are involved in the decision-making process and, ultimately, how responsive they feel the service is to their needs.

What constitutes a satisfactory level of involvement will vary from individual to individual. Therefore, a fundamental way of facilitating carer involvement, is for nurses and carers to openly discuss and negotiate a framework within which involvement can operate a) in a way that they both feel comfortable with and b) in a way that endorses the principles of good practice already established (Callery & Smith 1991, Kenny 1990). This process needs to be supported by the organisational and professional structures within which nurses practice (Kirk 1998).

Importantly, if, as is currently the case, there are no agreed objectives for carer involvement, then there is no basis on which it can be evaluated either by the carers themselves or by nursing staff and management. Such evaluation provides opportunities for practice and service development as well as for assuring the quality of care (see Nolan & Grant 1993).

Since the early eighties, researchers, carers’ organisations and other interested groups have argued for the need for change within the NHS and community care services to value and provide adequate support for carers. By investigating the concept of carer involvement in one hospital setting, this study enabled a deeper exploration of some of the main issues highlighted repeatedly in the literature, in particular, the lack of information given to carers and their exclusion from the decision-making process. A greater understanding of the barriers to involvement provides us with the means to begin to develop some very practical and realistic strategies to improve and extend carers’ involvement.

Guidelines

Team Philosophy

The multidisciplinary team should develop a team philosophy which expresses a genuine commitment to involving carers in decision-making by identifying

• how does the involvement of carers benefit patients, carers and health care professionals?
• what are the goals for involvement?
• how can these be achieved?

Key Contact

• Treat as priority the provision of a key contact for carers (using the named nurse system if appropriate). Nominate a deputy (e.g. a care assistant) to act in the absence of the key contact. This arrangement would recognise the role that care assistants play, under supervision, in providing patient care.
• Support the availability of that key contact for admissions, meetings etc through the duty rota (where shift work is in operation).
• Designate time during the week for the key contact to have contact with the carers of her/his patients either through phone calls, domiciliary visits, or by having an ‘open surgery’ once a week where carers can come and talk specifically about their relative. Once designated, this time needs to be given priority.
• Ensure that if there are any changes in personnel (e.g. the key contact retires or leaves) the carer is informed.
• Ensure that if a carer phones up to speak to the key contact and neither s/he nor the deputy are available, then they take the next available opportunity to contact the carer.
• Ensure that the key contact or deputy are proactive in contacting the carer to keep them informed about matters which have previously been agreed between them (e.g. of critical incidents, of changes in behaviour, of changes in medication).
• Ensure that the key contact or the deputy gets in touch with the carer before a family meeting to address any concerns, questions etc. they may have, and also afterwards to check whether the carer is satisfied with the outcome and, if they are not, to take appropriate action (e.g. arranging phone call with consultant).

Partnership

• Review the nursing models currently available to identify the model or models which best support carer involvement. Alternatives to be explored may include the Carer-led Assessment Process (CLASP) (Keady & Nolan 1994) and the Care Needs Assessment Package for Dementia (CarenapD).
• Review documentation to see to what extent it reflects carer involvement.
• Develop documentation which supports carer involvement in a way that is simple, meaningful and auditable and which can be used by both multidisciplinary team members and carers.
• Ensure that the key contact together with the carer plan the patient’s care so that it promotes their enjoyment and physical and emotional well-being, maintains their existing level of skills, and supports their continuity of care.
• Provide an agenda in advance for all those expected to participate in a family meeting.
• Ensure that the key contact together with the carer develop a framework of care which also lays out how the carer would like to be involved in the care process.

(It will be recognised that the extent to which carers can engage in this process will vary considerably depending on their own physical and mental health.) In establishing this partnership several issues need to be addressed in an open and honest way:

• what are the priorities and concerns of the nursing/medical staff and the carer with regards to the patient’s care?
• what can both parties realistically expect in relation to care?
• what should the care plan promote, maintain and prevent in relation to this individual’s care?
• what action needs to be taken in order to realise this care plan?
• what information does each side need in order to take this action? For example, what do the nursing staff need to learn from the carer about the patient; what does the carer need to know about formal procedures (family meetings), about who’s who in the multidisciplinary team?
• what support does the carer need? What information might be useful to them, e.g. information about the services offered by their local carers’ organisation.
• what level of involvement does they carer want? (They may need to be facilitated to be explicit and direct about this.)
• what are the constraints and priorities for the carer’s involvement? For example, it may not be appropriate for the carer to be involved in the medical decisions that are made. However, they may want to be told the reasons for those decisions and to feel able to challenge them if necessary.
• how will the key contact liaise with other members of multidisciplinary team with regards to this partnership?
• how will this agreement be reviewed and updated?

Practice Development

Issues for nursing staff

• Develop a proactive response to carers’ expressions of dissatisfaction. (Once the partnership contract is agreed between the carer and the multidisciplinary team [represented by the key contact], it provides a context in which either side can express dissatisfaction with what is happening.)
• Develop a means of supporting staff to manage emotionally intense encounters with relatives (or physical or verbal aggression from patients).
• Evaluate the extent to which the decisions relating to care planning, which were developed in partnership with the carer, have been carried out.
• Liaise with local carers’ organisations to facilitate the partnership between carers and nursing staff.

Issues for senior nurse management

• Support the development of a culture within the formal care setting in which nursing staff are valued and empowered and where there is a genuine commitment to service development through collaborative working. More specifically:
  (a) Contribute to, and be supportive of, the team philosophy with regards to carer involvement.
  (b) Develop a system by which problems identified by carers result in practice development for staff.
  (c) Consider how to increase the autonomy of ward based nursing staff (and thus to support their empowerment), in particular by enabling them to assign a period of time each week to developing their contact with carers.
• Identify a way to document carer involvement which is meaningful, which can be shared by health professionals and carers, and which enables involvement to be audited.
• Recognise the concept of carer involvement within management audit.
• Identify key practice areas where initiatives have been taken to facilitate carer involvement and consequently which demonstrate ‘best practice’, and to support the cross fertilisation of these across practice areas and Trusts.
• Re-examine the way that time is managed within the care context with a view to ensuring that carer involvement is treated as a priority in time allocation.

Issues for education/staff development

• Debate the concept of carer involvement early on in pre-registration and post-registration nursing courses.
• Form a partnership between education and service staff to devise education initiatives for practice development.
• Adopt education initiatives which enable students to develop the skills necessary for experiential learning (e.g. action learning, work based learning).
• Adopt education initiatives which make explicit and which challenge students’ attitudes and values as nurses and how that impacts on the relationships they develop with patients and carers.

Resource Implications

• Challenge staff and carers’ perceptions of the resource implications of involvement by evaluating the actual time required to implement the guidelines and the benefits gained as a result.

Future Work

• Implement and evaluate these guidelines in several sites.
• Use these guidelines to develop a set of guidelines for carers which enable them to seek partnerships in care.
• Investigate the process of implementing guidelines to develop practice using appropriate methodologies, for example, Action Research.
• Develop a framework to enable practitioners and researchers to work in partnership on projects.

This study was funded by Alzheimer Scotland

For further details and copies of the full report please contact:

Belinda Dewar

The Royal Bank of Scotland Centre for the Older Person's Agenda

Queen Margaret University College

Edinburgh

Telephone: 0131 317 3575

e-mail: bdewar@qmu.ac.uk

© Copyright The Royal Bank of Scotland Centre for the Older Person's Agenda, 2007