Urban Community Based Rehabilitation (UCBR) and Caregiving in the Family

J Kwok, R Ngan & D Shek+

Abstract
The interest in CBR is spreading fast in the Region, as its multidimensional nature opens up new frontiers in policy and practice. However, the situation and role of family caregivers, who are the major partners of CBR, have not been fully understood and recognized. Based on a territory wide research on family carers in Hong Kong, the authors report a common phenomenon of caring dilemma and strees, feminization of caregiving and ageing of caregivers' challenges have been suggested.

Introduction

In many Asian and Pacific cities, there has been a revival of interests in the dynamics and potentials of the family to provide continual long-term care to its disabled members. The interests are further raised by increased CBR practises in the Region (UNESCAP, 1989; Helander et al., 1989 & 1992; Kwok & Purves; 1992; International Labour Organization, 1994). The practice of CBR is partly based on the assumption that in the family there are members who, after training, can and will deliver effective rehabilitation exercises. However it is not feasible to provide services to a large under-privileged group by relying wholly on community volunteers and family trainers. Helander et al. (1992) therefore considered it necessary to incorporate CBR into national development programmes and a national network of CBR be supported by government. Since then the multi-dimensional nature of CBR strategies has opened up new frontiers in CBR policy and practice. At the same time it also causes difficulty in explaining what CBR actually embraces (ILO, UNESCAP & WHO, 1994; RICAP, 1997). In all these efforts to understand CBR, the situation and role of family caregivers have not been fully recognized, which are more a result of a lack of research studies on this area.

+ Dr. Joseph Kwok and Dr. Raymond Ngan are Associate Professors, Department of Applied Social Studies, City University of Hong Kong. Dr. Daniel Shek is Associate Professor, Department of Social Work, Chinese University of Hong Kong.

The Research Problem

The present research investigated the following aspects of Hong Kong caregivers:

1. the caring involvement;

2. the informal network;

3. use of formal services;

4. opinion towards the informal and formal support;

5. psychological well-being;

6. general mental health; and

7. stresses related to the disability situation and caring tasks.

Sampling Design

The present study focused on caregivers and cared- for persons from the following five disability categories, namely : mental retardation, psychiatric disability, physical handicap and multiple handicap, old people with physical disabilities, and people with chronic illness. Other than the old people category, which specified age group as 60 and above, other groups were chosen from people aged 16 and above. Other than the category of people with chronic illness, the other four categories were further selected according to the following service types: living with family, waiting for residential care, on regular day care programmes, receiving residential care. For the category with chronic illness, they were all living with their families as there were no special rehabilitation services set up for them yet. The sampling design gave a total of 17 subgroups, by disability grouping and by service status of cared-for persons.

Sampling and Data Collection Methods

The study used the full listing of both GOs and NGOs that were concerned with rehabilitation, and all their service units as the population frame. A cluster random sample of service units from all regions in Hong Kong was made. For disabled people waiting for residential care, a random sample was constructed from the government central list of disabled people and old people waiting for admission to residential institutions. For subjects with chronic illness, a random sample was constructed from a membership listing of a NGO. The types of chronic illnesses covered were diabetes, heart diseases, cancer, renal failure terminal stage and stroke.

Data were collected by personal interviews from summer 1994 through February 1995. The response rate of 66 organizations and their service units invited to take part in the research were around 63 percent. A second stage non-response rate, based on those persons consented to interview, was around 30 percent. For subjects on waiting lists for residential care, a random sample of 1,973 participants was selected, and the response rate for this group was around 56 percent. For the entire sample, a total of 775 successful interviews with caregivers, covering 824 cared-for persons, were conducted, representing an average response rate of about 48 percent. (See Table 1)

Discussion of Major Findings

1. Feminization of caregiving and ageing of the caregiver: Females and older persons (56 year and above) prevailed as the primary caregivers. Older female caregivers were likely (p<0.05) to have heavier and long years of caring involvement. In particular, female caregivers who were spouse or parents of cared-for person were likely to report higher frequency of personal problems due to the caring work.

2. Weak informal support network: Support from caregivers' informal support network was low. There were 45.9 percent of the caregivers had only one sibling to help them, while 27.1 percent did not have any family member to help them in their care work.

3. General mental health status and existential well-being of caregivers: Over half (52 percent) of the caregivers felt that their mental health conditions were worse than average or much worse. The findings suggested that the related impairment rate was higher than those reported in previous epidemiological studies. This is an indication of the growing inability of the caregivers to continue in the care involvement, if appropriate help is not forth coming. Although 42 percent of the caregivers reported slightly positive existential well-being scores, another 23 percent felt that their well-being were negative. This, together with their less than promising relationship with their cared-for persons and other family members, tend to suggest a gloomy life for caregivers on the average.

4. The caring dilemma and stress: About two-third (66 percent) of the caregivers had a wish to place institutions, while close to half (47.4 percent) of their caregivers did have such a wish. Apparently, the community based day care service was not so well appreciated by the family caregiver. Furthermore, among those caregivers who had already put their cared-for persons on waiting list for institutional placements, 33 percent of them did not wish to send them to institutions, another reflection of the caring dilemma.

Implications for CBR Practice

1. Building the substance for the informal network: The present study shows clearly that a functioning informal network hardly exists, and the caregiver is practically the only effective player in the so-called informal network. Worse still, informal network resistance is taking a toll on the psychological well-being of the caregiver. Effective community based rehabilitation policies should promote a collective responsibility which protects the welfare of the vulnerable group, as well as supports the family caregivers. Concrete measures to develop the helping substance of the informal network should include: a. tangible help to the caregivers; b. setting up of self-help groups in the neighbourhood for sharing of emotional support, as well as practical knowledge and skills in rendering effective care; and c. different forms of respite service so that the caregivers can have breaks in their life.

2. Dealing with the gender biased caregiving role : CBR should be aware of unduly reinforcing the women gender biased caregiving role. CBR practice should involve the whole family, including as far as possible the immediate support network in working out a balanced involvement in continued caregiving.

3. Reforming formal day care services: Over half of the caregivers in this study considered the help by formal social services not satisfactory and inadequate. The problem is that such services are mostly not home-based or appropriate to the long-term care needs of cared-for persons at home. For example, home help services can only meet the meals-on-wheels needs of such dependent members in the community but not their long-term personal nursing and cleansing needs. Formal day care services should therefore organize to become user friendly, particularly to those assuming dual role as the caregiver and the breadwinner, so as to change their preference for institutional placement. For example, day care organizations may have to consider flexible hours of operation on weekdays and holidays, as well as to minimize travelling time of the caregivers. Such changes would unavoidably incur additional resources, but the increase would certainly be offset by corresponding decrease in demand for the more costly institutional services.

4. Empowering caregivers: The voice of family caregivers is rarely heard in policy debate forums. When they speak, they use to speak on the special needs of their cared-for persons. The caregivers should be empowered to adovate their rights of choice and their legitimate demands for adequate support to fulfil their caring roles. They should not be soley bounded by normative obligations without realistic help. The ultimate goal is for caregivers to find a sense of fulfilment and well-being from caregiving, so as to replace the sense of disruption in personal, family and social relationships.

5. The role of CBR in urban cities: CBR projects are introduced only recently in urban cities, where there is already a proliferation of usually uncoordinated formal services. While CBR is not expected to duplicate the work of other formal services, they can perform the role of a co-ordinating unit at the neighbourhood level for all available community based services. So that the caregiver is required to apply to only one office for comprehensive and individualized help and support. The CBR co-ordinating role should attempt to achieve a seamless networking among formal services, and between formal and informal support. The CBR team should also carry out community development functions with a dual focus, i.e. community and family foci. The community-focused function is to mobilize and develop local leadership to support community based disability measures, to organize public education programmes and facilitate interfacing between specialist rehabilitation organizations and general social services organizations. The family-focused function is to render care management services so as to facilitate and support the family caregivers, to enlarge their informal support networks, and to assist the family in an equitable division of responsibilities in care work.

Conclusion

While generalizability of the findings should be interpreted with care because of the limitations in the sampling methods, the present study has contributed to understand the complex factors affecting the caregivers in providing quality and long term care. It is clear that the future of programmes and policies concerning CBR and formal support services relies on the development of an effective informal caring networks, as well as a seamless interface between the informal care sector and formal care services in the society.

References

Helander, E. (1992). Prejudice and dignity: An introduction to community-based rehabilitation. New York: United Nations Development Programme.

Helander, E., Mendis, P. Nelson, G. and Goerdt, A. (1989). Training in the community for people with disabilities. Geneva: World Health Organization.

ILO, UNESCAP & WHO. (1994). Community-based Rehabilitation for and with people with disabilities, 1994 Joint Position Paper.

International Labour Office Regional Office for Asia and the Pacific. (1994). Towards equalizing opportunities for disabled people in Asia: A guide. Bangkok: International Labour Office.

Kwok, J. & S. Purves (eds). (1992). Proceedings of Asia-Pacific regional seminar on urban and rural community based rehabilitation. Hong Kong: Rehabilitation International Regional Committee on Asia and the Pacific.

Regional Inter-agency Committee for Asia and the Pacific, UNESCAO (RICAP). (1997). Understanding Community-based Rehabilitation. Paper adopted at the RICAP meeting held in May 1997. Bangkok.

United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP). (1989). Community-based disability prevention and rehabilitation: Guidelines for planning and management. New York: United Nations.

ASIA & PACIFIC JOURNAL ON DISABILITY

Vol.1, No. 1, September 1997

Published by the Asia and Pacific Regional Committee of Rehabilitation International (RI) and the Regional NGO Network (RNN)