ACTION
Assisting Carers using Telematics Interventions to meet Older persons' Needs

1. Summary

ACTION is a 36-month European project that aims at maintaining or enhancing the autonomy, independence and quality of life for frail older and disabled people and their family carers by giving better information, advice and support in the home. This will be made possible by combining familiar equipment with modern information and communication technology (figure 1).

Figure 1. Training to use the ACTION system

The main purpose of the project is the empowerment of family carers. Both family and professional carers are involved at all stages of the development and decision making process to insure that the project is user driven and user friendly. The project is attempting to explore in a cross-cultural manner, the invisible nature and associated problems of family care giving. The ACTION project is supported and substantially funded by the European Commission DGXIII, Telematics Applications Programme, Disabled and Elderly Sector. The intention of this paper is to give a brief overview of the entire project with emphasis on users needs and programmes related to coping skills, emergency interventions, financial information and economic support for family carers.

2. Introduction

Within the European States the percentage of older people is growing. The traditional dependence on the family as a major source of caring is increasing and becoming more common in all European countries. Current European policy implies transfer of resources to care in the community to facilitate supporting arrangements (OECD, 1994). The demographic changes with this shifting of direction in the delivery of health and social welfare towards more community based care has led to a change in the roles of family and professional carers (O’Reilly, 1997).

Family carers are expected to carry out a range of caring daily life activities. This necessitates knowledge about caring, care planning, respite care, and available financial sources. Carers also have to cope with a variety of emergency caring situations requiring support and enhanced coping skills. Professionals now have to, not only provide direct care, but also take on consultative role of teaching and supervising in order to empower families (Murrow Baines, 1991). Taking on this caring role demands education and training for both cohorts of carers.

3. Objectives

ACTION seeks to meet the following objectives:

• enhance the knowledge, skills and social competence of family carers in order both to improve their caring abilities and reduce existing inequalities of access to services;
• meet carers' own needs for emotional and psychological support, thereby maintaining or improving their own well being and quality of life;
• provide carers with greater scope to develop 'enriching' activities which will improve the quality of life of the cared for person.

4. The needs of family carers

User requirements with respect to caring activities of daily living and attitudes towards technology were explored in the partner countries (Berthold, 1997). Focus group discussions with family and professional carers and 451 completed questionnaires to family carers revealed that family carers undertake many basic caring activities in daily life as well as activities such as wound care, artificial feeding and prevention of pressure sores. The majority of the carers were female, older than 45 years who provided care for a spouse or a parent. Half the family carers had been a carer for one to five years and about 21 % for more than 10 years. Although many had considerable experience, the majority thought they needed more education and advice about how to provide care.

The cared for people were mostly women aged 75 years or above. According to Katz’ index of activities in daily life (Sonn, 1995) the vast majority were in need of help in all six activities (personal hygiene, dressing, toileting, transfer, incontinence, feeding). Moreover, about 37% were in need of help several nights per week and 14% every night. The majority suffered from anxiety, forgetfulness and confusion. The findings from a coping mechanism scale revealed that caring for a dependent family member puts strain on the family resources. It also indicated that carers could cope better if they received more information about the care recipients’ problems, had someone to talk to, could "let off steam", could rely on past experience and remember shared good days.

A need for carers to receive a break from caring was considered important. This was related to the perceived physical and emotional stress of caring. On the other hand, there was no evidence that carers planned for breaks in their care giving activity. Any breaks often occurred following a caring crisis. "Money matters" were regarded as important issues. There was a need for accessible, easy and up to date information to be available to both the family carers in their homes and to the professional carers.

With respect to technology, some of the respondents expressed concerns, but the majority took a pragmatic attitude and believed that modern technology could have a positive impact on their life. Both family and professional carers considered education by interactive multimedia to be a possible tool for active learning. The need for effective communication was a key concern. Contacts both between family carers and professional carers and between a group of family carers or among professional carers was deemed useful. This option has to be regarded as an extended service and must not replace face to face contacts. In summary there were positive attitudes towards the development and use of supportive telematics, if implemented with appropriate education, training and support for carers. The involvement of carers in this process is essential.

5. ACTION products and services

Based on the results obtained the project will develop a prototype including equipment and Intranet system. Software is being produced in areas such as: caring in daily life, planning for respite and long term care, coping and emergency situations and financial information. Video conference links between formal and informal carers to improve communication and provide on-line effective care information will also be developed. The user interface is being designed in co-operation with carers to ensure user friendliness and user acceptance.

Familiar and readily available technical apparatus, such as the carers’ own TV and remote control complemented with a multimedia PC, a camera and ISDN connection, will be used (Emery, 1997). For the family carer a remote control hand set will be used to operate the system, permitting the user to switch between TV and ACTION facilities (figure 2).	Figure 2. Receiving advice about caring
Professional carers may use an ordinary monitor and keyboard complemented by a camera (figure 3). This will broaden the repertoire of professional activity to include video-telephone and Internet access to enhance research and analogous activity (Emery, 1997).	Figure 3. Professional consultation

6. Coping skills and emergency interventions

The role of the family caregiver is demanding, challenging and generally personally satisfying. It centres around meeting the demands of daily living for the cared for person as well as for the caregiver. Coping with meeting these demands is often an understudied dimension. It is the remit of ACTION to construct a theoretical framework and associated telematics instrumentation to assess and enhance carers coping potential and satisfaction.(Chambers, 1998)

Using Social Cognitive Learning Theory (Bandura,1977), together with the work of Folkman and Lazarus’ (1980), an interactional coping model has been constructed which illustrates the interaction between the environment, the carers’ cognitive appraisal and their subsequent physical and emotional behavior. The conceptual framework proposes that such interactions underpins the response that the individual will make towards stress, and their ability to cope. The model also outlines the importance of considering the emotional status of the carers as well as the position of the individual as a member of both family and the wider community.

This framework and model will guide the development of the assessment instrument to measure carers’ coping capacity; and provide a range of cognitive and behavioral coping strategies to enhance their day-to-day coping and their ability to deal with crisis situations. The instrument will be developed using a knowledge based system and will offer a range of question types and employ a variety of multimedia applications with coping and emergency interventions. The concept of carers being able to carry out a systematic self assessment and select adjuncts to coping from a range of options has not yet been explored. The purpose and function of the Carers Assessment and Telematics Intervention instrument is to address this deficit.

Carers’ stress is often accentuated when faced with a crisis situation. The structure, will include a knowledge based system to facilitate carers’ decision making in relation to crisis situations. This will be developed using critical incident technique involving carers and professionals, and information from phase one of the study. An on-line "first aid" programme will also be incorporated as an option for carers to access for education and information.

7. Financial information and economic support for the family carers

While on the one hand the costs of medical and social assistance are constantly rising, older people normally suffer a loss of social status and income when they leave the labor force and retire. Increasing disability, coupled with reduced financial and emotional family resources, raises the difficult question of institutionalization as a solution to long term-care needs. It is quite clear that the social and economic circumstances of dependent persons and their family carers may seriously affect their ability to actively participate in solving their problems and remaining autonomous and independent. Therefore, the financial information multimedia programme developed within ACTION, aims at enabling carers to clearly understand and use the governmental, voluntary and local financial resources available, helping them to make informed choices regarding care needs.

Based on the users’ needs and taking into account the different health and care systems, the guidelines for collecting financial information in all partner countries were designed by and discussed with all partners and their users groups (family carers and professionals) in order to determine the main and common areas, categories and items considered relevant to the aims of the programme.

Following those guidelines, a report was prepared using the information gathered by the partner countries, supported by local personnel with expertise in social administration systems (Grácio and Brito, 1998). That report, along with the functional specification of the database constitute the basis for the multimedia information database and manual which is now being developed. During this process, several groups of users are being consulted in each partner country, so that even complex data about financial and economic aspects can be displayed and presented in a clear and understandable manner.

8. Validation

Future project activity will concentrate on validation of the ACTION-system in all partner countries. The entire ACTION products and services will be tested and evaluated in 40 private homes, nursing and residential homes, hospitals and health care centres, resulting in total 64 sites and approximately 600 individuals (figure 4).

Figure 4. Validation involving family carers in their homes and professionals

9. Concluding remarks

Throughout the life span of a research and development project such as ACTION, a number of issues and questions continually arise, some of an ethical nature. From the perspective of the family carers and care recipients, the question of utility is of vital importance. Technical applications have to be of service to people and guided by their expressed needs. The caring role may be made easier if carers know where to get information from, have access to educational and training programmes to improve skills, and have the opportunity for regular contact with formal carers, as well as family members and friends.

It is anticipated that the most important carer benefits will be:

• direct access to care information and practical advice which will improve the carers’ competence and their ability to provide care,
• opportunities for older people and their family carers to plan for long term care
  and acquire information about the local respite facilities available,
• clarification and help, so that family carers realise the financial benefits and economic support that they can claim,
• links which will help bring about emergency intervention when needed,
• direct access to the individual’s health care centres by using two-way video communication facilities,
• help to professional carers in assessing and prioritising needs for intervention.

By development and implementation of information and communication technology the confidence and competence in the family care setting can increase and the nursing and social service work can be further developed. Besides that, an opportunity and challenge to increase the quality of life for the disabled and elderly and their family carers is provided.

References

Bandura, A. (1997), Social learning theory. Prentice Hall. Englewood Cliffs, New Jersey.

Berthold, H. (1997), Users’ needs and priorities. Deliverable D 04.1, Project DE3001, ACTION. European Commission DGXIII, Telematics Applications Programme, Disabled and Elderly Sector.

Emery, D. (1997), Technical Standards and Specifications. Deliverable D 05.1, Project DE3001, ACTION. European Commission DGXIII, Telematics Applications Programme, Disabled and Elderly Sector.

Folkman, S. and Lazarus, R. S. (1980) An Analysis of Coping in a Middle Aged Community Sample. Journal of Health and Social Behaviour,21 pp 219-239 cited in Carver, C. S., Scheier, M.F. and Weintraub,J.K.(1989) Assessing Coping Strategies: A Theoretically Based Approach. Journal of Personality and Social Psychology. Vol. 56 No 2 pp267-283.

Grácio, E. and Brito, L. (1998), Financial resources available in England, Ireland, Northern Ireland, Portugal and Sweden. Deliverable 09.1, Project DE3001, ACTION. European Commission DGXIII, Telematics Applications Programme, Disabled and Elderly Sector.

McCammon C. and Chambers. M. (1998), Report on a Theoretical Framework to influence Instrument Development. Deliverable 08.1, Project DE3001, ACTION. European Commission DGXIII, Telematics Applications Programme, Disabled and Elderly Sector.

Murrow Baines, E. (1991), Perspectives on Gerontological Nursing, SAGE publications, USA

OECD.(1994), Caring for Frail Elderly People. New Directions in Care. Social Policy Studies,

No. 14.

O’Reilly, A. (1997), Report describing the health care- formal and informal systems in Ireland, Portugal, Sweden and United Kingdom. Deliverable D 03.1, Project DE3001, ACTION. European Commission DGXIII, Telematics Applications Programme, Disabled and Elderly Sector.

Sonn, U. (1995). Longitudinal Studies of Dependency in Daily Life Activities among the Elderly. Methodological development, use of assistive devices and relation to impairment and functional limitations. Göteborg. Sweden.