7
What Does Community Care Research Tell Us About Community Care in Australia? A. Howe A critical appraisal of 21 srudies of community care conducted in Australia between 1990 and 1995 provides the basis for assessing the account of community care that is presented in recent research. Several aspects of the policy and program context in which the Home and Community Care (HACC) Pmgm operates give rise to great diversity in community care, and the design and metho& of communily care research are also diverse. Review of the coverage of the HACC client population in research, the range of services studied and outcomes investigated shows however, thatjhiings fall short of giving a representative account of community care. The focus on outcomes relrrring to admission to residential care is especialky seen to prescribe too narrow a view of the range of outcomes achieved by commun@y care. The need to recognise a wider range of outcomes is identified as findomed to strengthening the contribution that research can make to the development of community care in Austmlia and in other countries. This review is based on a critical appraisal of studies of community care that was undertaken to inform a consultancy into targeting of services provided through Australia's Home and Community Care Program (HACC). The central question of the consultancy concerned the relationship between the point of intervention by way of provision of community services and outcomes, particularly the effect on entry to residential care. Put another way, the Consultancy sought to clarify the basis of the tension that had emerged between HACC's stated objectives of providing a range of basic services to enable frail aged and younger people with disabilities to remain in the community, thereby avoiding inappropriate or premature admission to residential care, and increasing concentration of services on individuals with higher dependency who were seen to be at greatest risk of admission. Whereas the former orientation implies broad based allocation of services and includes an element of prevention, the latter implies targeting resources on a more narrowly defined, and hence smaller, group of clients. The specific aim of the critical appraisal was to identify consistent findings as to the effectiveness of community care allocated accordingly, and to consider methodological factors affecting comparison of results. The more general question asked here is about the contribution that research has made to our understanding of community care and to providing an information base for advancing policy and program development. POLICY AND PROGRAM CONTEXT Targeting emerged as an issue in HACC in the late 1980s. when the rapid growth of the first five years of the program began to taper. From 1984, the Labour Federal Government made a concerted effort to change the balance of residential and community care, and one measure taken was to bring several fragmented community care programs together under the HACC Act. A summary indicator of success in achieving this policy goal is that by 1995, combined Federal and State expenditure on HACC accounted for some 30 per cent of all outlays on aged care compared to only 10 per cent a decade earlier. An account of the development of community care at that time has been given by Healy (I 990) and the range of 120 planning and financial measures implemented to change the balance of care has been reported elsewhere (Howe 1996). Shifts in policy conceptualisations of HACC and its role vis-a-vis residential care that were emerging by the mid 1990s have also been analysed (Howe 1997). Beyond this history of rapid change, the multi-layered structure and wide scope of HACC pose many challenges for research. First, HACC involves federal, state and local governments. Second, as the program grew, early and well established providers in the public and traditional not-for profit sectors were joined by new community based not- for-profit providers and latterly by some for-profit agencies. Third, the scale of agencies varies enormously. In 1995, the 20 per cent of some 3000 service delivery projects with the largest budgets accounted for more than 75 per cent of total expenditure, while less than one per cent of expenditure went to the 20 per cent with the smallest budgets. Younger people with disabilities come within the scope of HACC as well as the frail aged, and within this overall client population several special needs groups are identified: Aboriginal and Torres Strait Islander people, those of non-English speaking backgrounds, people with dementia, those in rural and remote areas, and carers. The range of services has also expanded, from the basics of home help, home nursing and meals, to eleven service types, including in-home and centre-based respite care, information and advocacy, and assessment. Most recently, Community Options Projects and other sub-programs providing case management to clients with high dependency and complex care needs have added top-up funding to HACC. The outstanding characteristic of HACC is thus its diversity. RESEARCH CONTEXT While the growth of HACC stimulated interest in research into community care, the field was well established, if not extensive, well before the mid 1980s. A 1986 review of five large scale surveys identified them as a second generation of research, following on from several smaller scale, local area studies that were conducted through the 1960s and 1970s (Howe & Sharwood 1989). The continuing growth in the field is evident in the projects detailed in the five triennial editions of the Australian Ageing Research Directory that have appeared from 1984 to 1996 (Office for the Aged 1997). Austruliun Journal on Ageing, Vol. 16. No. 3

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Page 1: What Does Community Care Research Tell Us About Community Care in Australia?

What Does Community Care Research Tell Us About Community Care in Australia?

A. Howe A critical appraisal of 21 srudies of community care conducted in Australia between 1990 and 1995 provides the basis for assessing the account of community care that is presented in recent research. Several aspects of the policy and program context in which the Home and Community Care (HACC) P m g m operates give rise to great diversity in community care, and the design and metho& of communily care research are also diverse. Review of the coverage of the HACC client population in research, the range of services studied and outcomes investigated shows however, thatjhiings fall short of giving a representative account of community care. The focus on outcomes relrrring to admission to residential care is especialky seen to prescribe too narrow a view of the range of outcomes achieved by commun@y care. The need to recognise a wider range of outcomes is identified as f i n d o m e d to strengthening the contribution that research can make to the development of community care in Austmlia and in other countries.

This review is based on a critical appraisal of studies of community care that was undertaken to inform a consultancy into targeting of services provided through Australia's Home and Community Care Program (HACC). The central question of the consultancy concerned the relationship between the point of intervention by way of provision of community services and outcomes, particularly the effect on entry to residential care.

Put another way, the Consultancy sought to clarify the basis of the tension that had emerged between HACC's stated objectives of providing a range of basic services to enable frail aged and younger people with disabilities to remain in the community, thereby avoiding inappropriate or premature admission to residential care, and increasing concentration of services on individuals with higher dependency who were seen to be at greatest risk of admission.

Whereas the former orientation implies broad based allocation of services and includes an element of prevention, the latter implies targeting resources on a more narrowly defined, and hence smaller, group of clients.

The specific aim of the critical appraisal was to identify consistent findings as to the effectiveness of community care allocated accordingly, and to consider methodological factors affecting comparison of results. The more general question asked here is about the contribution that research has made to our understanding of community care and to providing an information base for advancing policy and program development.

POLICY AND PROGRAM CONTEXT Targeting emerged as an issue in HACC in the late

1980s. when the rapid growth of the first five years of the program began to taper. From 1984, the Labour Federal Government made a concerted effort to change the balance of residential and community care, and one measure taken was to bring several fragmented community care programs together under the HACC Act. A summary indicator of success in achieving this policy goal is that by 1995, combined Federal and State expenditure on HACC accounted for some 30 per cent of all outlays on aged care compared to only 10 per cent a decade earlier.

An account of the development of community care at that time has been given by Healy ( I 990) and the range of 120

planning and financial measures implemented to change the balance of care has been reported elsewhere (Howe 1996). Shifts in policy conceptualisations of HACC and its role vis-a-vis residential care that were emerging by the mid 1990s have also been analysed (Howe 1997).

Beyond this history of rapid change, the multi-layered structure and wide scope of HACC pose many challenges for research. First, HACC involves federal, state and local governments. Second, as the program grew, early and well established providers in the public and traditional not-for profit sectors were joined by new community based not- for-profit providers and latterly by some for-profit agencies. Third, the scale of agencies varies enormously. In 1995, the 20 per cent of some 3000 service delivery projects with the largest budgets accounted for more than 75 per cent of total expenditure, while less than one per cent of expenditure went to the 20 per cent with the smallest budgets.

Younger people with disabilities come within the scope of HACC as well as the frail aged, and within this overall client population several special needs groups are identified: Aboriginal and Torres Strait Islander people, those of non-English speaking backgrounds, people with dementia, those in rural and remote areas, and carers. The range of services has also expanded, from the basics of home help, home nursing and meals, to eleven service types, including in-home and centre-based respite care, information and advocacy, and assessment. Most recently, Community Options Projects and other sub-programs providing case management to clients with high dependency and complex care needs have added top-up funding to HACC. The outstanding characteristic of HACC is thus its diversity.

RESEARCH CONTEXT While the growth of HACC stimulated interest in

research into community care, the field was well established, if not extensive, well before the mid 1980s. A 1986 review of five large scale surveys identified them as a second generation of research, following on from several smaller scale, local area studies that were conducted through the 1960s and 1970s (Howe & Sharwood 1989). The continuing growth in the field is evident in the projects detailed in the five triennial editions of the Australian Ageing Research Directory that have appeared from 1984 to 1996 (Office for the Aged 1997).

Austruliun Journal on Ageing, Vol. 16. No. 3

Page 2: What Does Community Care Research Tell Us About Community Care in Australia?

A review of research examining factors affecting outcomes of community care interventions has recently been compiled in Australia, but included few Australian studies primarily because there has been little investigation specifically into outcomes (Fine & Thomson 1995). A recent review of 32 US studies by Weissert and Hendrick (1994) is also of particular relevance to Australian research in showing the importance of well- designed research, the selection and definition of outcomes to be measured and especially the conduct of analyses that can link specific outcome benefits to specific clients or groups of clients, if the effectiveness of community care is to be demonstrated.

SCOPE AND DESIGN OF STUDIES INCLUDED The 21 studies identified for inclusion in this critical

appraisal are set out in Table 1. The studies were not

Place and date of data collection

community care in terms of admission to residential care, but all included empirical data and analyses of varying complexity that it was considered could be brought to bear on issues of targeting. With a view to being inclusive rather than exclusive of potentially relevant studies, the only formal criterion applied for inclusion was recency. Data had to have been collected between 1990 and 1995, so that the studies reflected the later and more stable operation of HACC and associated programs rather than the more dynamic conditions of the late 1980s.

A systematic view of the diversity of the 21 studies was obtained by classifying them into four types on the basis of study designs and methods. Two studies were concerned with service monitoring and review, six were program evaluations, six involved analysis of client databases generated by service providers and seven were

Study type

limited to investigations that reported outcomes of research projects not linked to particular services.

Southern Region. Adelaide Dec 1990-Dec 1994

Table 1: Study designs and methods

Single service Monitoring and review Cross-sectional Internal

Study (First author and date of publbhed repods)

Southern Domiciliary Care and Rehabilitation Service Client Profile (Kalucy 1994)

North East Melbourne. 2 years, 1993-94

~

NS W Home Care Service (Alt Statis & Assoc. 1995)

Single project Evaluation Longitudinal Internal

Bundoora Community Care Project (Gray 1995)

Sydney local area 1990-93

Me1 bourne 1993- 1994

3 years at home (Fine 1995)

Single service Evaluation Longitudinal External

Single service Evaluation Cross-sectional Internal

Impact of Hospital Casemix on Royal District Nursing Service (Maddox) 1995

NSW 1995

National 1991

NSW Home Care High and Low Need Client Survey (Home Care Service of NSW 1995)

Community nursing dependency and resource use (Gliddon 199 1)

Single service Evaluation Cross-sectional Internal

Multiple services Database analysis Cross-sect. with outcomes Internal

Bendigo and Ballarat Linkages

(Charlton 1992) Study (a)

Victoria rural centres 18m. Jan 1989-June 1990

Victoria 1992

Victorian Linkages Evaluation

(Kendig 1992; Wells & Kendig 1996)

(a)

Multiple services Evaluation Longitudinal External

Multiple services Evaluation Cross-sectional (b) External

NSW Community Options Evaluation (Graham 1992)

NS W 1993

Single service Monitoring and review Cross-sectional External

Multiple projects

Cross-sect. with outcomes External

Sample details

537 clients 12.5% random sample of 4.247 clients seen over 4 years

4,081 in sample of 41.500 total clients

160 total. 80 in selected test and control S O U P S

60 ACAT clients at risk of admission to residential care

8,177 clients pre casemix 9,449 clients post casemix

83 Home Care branches 329 clients, 2 highest and 2 lowest service users from each branch

24 community nursing agencies 2,460 clients

40 test and 58 control pairs selected from matched clients in each city

8 Linkages projects 632 clients

~

14 Community Options Projects 1,275 clients

Australian Journal on Ageing, Vol. 16, No. 3 I21

Page 3: What Does Community Care Research Tell Us About Community Care in Australia?

- -

Study (Fhl .O* M d date d PlWrrPorlh) Transition Care Packages (Charlton 1996)

Place and date of data collection

6 States 1993-95

National x States 1995

National 1994-95

Client Information. Assessment and Referral Record (CXARR) (Elton 1995)

Study type

Multiple projects Evaluation Cross-sect. with outcomes External

Multiple services Evaluation Cross-sectional External

Multiple services Database analysis Cross-sectional External

Community Home Nursing Groups (Donelly 1995)

7 Home Care Branches 237 clients, I I I in intervention and 1126 in control groups

18 ACATs 16,710 clients from MDS (2.428 Hostel Care Plan) 520 clients in survey ( 148 Hostel Care Plan)

976 carers. random sample of 26,000 c households

Sample details

Victoria July-Dec 1995

NS W July-Dec 1995

6 Transition Care Projects I ,5 12 clients

Multiple services Database analysis Cross-sect. with outcomes External

Multiple services Database analysis Cross-sect. with outcomes External

296 HACC services 1,500 clients (5 from each agency)

States and Territories 1994-95

States and Territories National x States

NSW 1994-96

Victoria 1995

23 community nursing agencies 6.658 clients

Multiple services Database analysis Cross-sectional External

Multiple services Database analysis Cross sectional External

Multiple services Evaluation Retrospective External

Multiple services Evaluation Cross-sect. with outcomes External

~ ~~

Victorian ACAT Monitoring (Aged Care Research Group 1995)

Victoria 1992-96

NSW rural 1994-96

-

NSW ACAT Monitoring (NSW Evaluation Unit 1996)

Population based Research Longitudinal External

Population based Evaluation Longitudinal External

I8 ACATs 22.000 clients

53 ACATs 27,000 clients

~~~~

Community Care Statistics (Commonwealth Dept. of Human Services and Health 1996a)

Community Options Client Characteristics Survey (Commonwealth Dept. of Human Services and Health I996b) Community Care: The Impact of Low Levels of Service Use (Turvey 1996)

Hostel or Home? Hostel Care Plan Study (Charlton 1996)

Victorian Carers Project (Schofield 1997; Howe et al. 1997)

Hospital and Home: a longitudinal study in Dubbo, NS W (McCallum 1994; 1995)

(a) Linkages is the Victorian name for Community Options Projects

There were consistent relationships between these study types and other attributes. Five of the six database analyses and nine of the 1 1 evaluations were conducted by external research bodies. This attribute was in turn associated with collection of data from multiple services rather than a single agency. The six longitudinal studies were either program evaluations that involved follow-up of clients, or research studies using population based samples and reported outcomes over periods of up to three years. Eight of the cross sectional studies reported a variety of point-in-time outcomes related to community

I22

2.400 HACC provider organisations estimated 220.000 clients at any time

122 Community Options Projects 6,726 clients

2.805 clients admitted to hospital in study period

service use, such as recommended care plans following assessment or client satisfaction and impact on quality of life, and some followed up clients for short periods.

While many of the research designs were appropriate for the specific purposes of individual studies, the critical appraisal of methodologies highlighted the extent to which findings and conclusions were shaped by these considerations. The very diversity of research designs combined with some methodological shortcomings to pose some major limitations on the capacity to generalise from these 21 studies to the wider community care field.

Austrulinn lournul on Ageing, Vol. 16, No. 3

Page 4: What Does Community Care Research Tell Us About Community Care in Australia?

COVERAGE OF THE HACC CLIENT POPULATION

The coverage of the HACC client population in community care research ranges from the broad but shallow to the deep but narrow. The Community Care Statistics. which cover 220,000 clients estimated to be receiving a HACC service at any one time, report only aggregate data on a limited range of characteristics (DHHS 1996), while another study that followed 60 clients of an Aged Care Assessment Team (ACAT) over three years of care at home reported very detailed findings (Fine & Thomson 1995). Between these extremes, most studies covered clients receiving only one or another type of service, or clients of particular provider agencies.

Almost all studies reported demographic profiles of clients and detailed their social characteristics, dependencies and care needs. The presentation of results was however often limited to frequencies of single variables. Only 1 1 studies reported the proponion of men and women and 14 gave an age distribution, sometimes only as proportions aged under or over 65 or 70.

Differences in reported age structures reflect the age selectivity of the different services under study, and only some very broad conclusions could be drawn about two critical questions for targeting, namely the representation of younger people with a disability in the HACC client population and the correspondence between the populations served by community services and residential care. Following on from the finding that the community care client population is substantially younger than the residential care population, it is apparent that while community care may provide an alternative to residential care for a segment of the old-old population, it has other functions for others, and for the majority of the young-old and even younger people with disabilities who are very unlikely to enter residential care.

Findings on dependency presented a similarly diverse picture, with differences in measurement and analyses posing difficulties in identifying underlying similarities or differences in findings. Dependency was variously described in terms of single dependencies in activities of daily living (ADL) and instrumental activities of daily living (IADL), presence of mental impairment, number of dependencies, and overall dependency rating on one or other standard instrument or on scales constructed for particular studies. One aspect of dependency that was consistently identified in studies focusing on high need clients was the high proportions of such clients reported as having a mental impairment.

One aspect of dependency that was consistently identijied in studies focusing

on high need clients was the high proportions of such clients reported as

having a mental impaiment.

Description of clients in terms of presence of physical or mental dependency only, or both, would provide a very succinct yet comprehensive account of dependency that could usefully precede the measurement and reporting of a larger array of dependencies in greater detail.

A first step that would enable a fuller account of community care clients to be compiled from the findings of existing and future research, and facilitate comparison Australion Journal on Ageing, Vol. 16, No. 3

between studies, is disaggregation into some standard sub-groups defined, for example, by age, sex and living arrangements, or by combinations of dependency characteristics. Reporting of the HACC client population in this way would provide a useful means for assessing the extent to which clients covered in smaller studies were representative of the overall HACC population, or typified selected groups within it. and for establishing the distribution of dependencies across demographic groups. Such groups are easily constructed, economical of data and practically meaningful.

The Victorian Carers Project illustrates the gains from this kind of disaggregation in its use of relationship groups - parents caring for handicapped children, spouse carers, adult children caring for older parents or carers with other relationships to the care recipient - in analysing a wide range of carer and recipient characteristics. This framework of relationship groups identified significant differences between the groups that would not have been revealed had the carer population been treated only as an aggregate entity.

Such groupings would also assist in relating client populations of particular services to the total population, or populations with different levels of handicap, as defined by the Australian Bureau of Statistics. Across the studies, there was surprisingly little reference to the wider populations from which those who use services are drawn, yet such comparisons are a necessary step in understanding factors associated with need and propensity to use services, as demonstrated by Mawby et al. (1996).

RANGE OF SERVICES STUDIED Patterns of service use were most often described in

terms of the types and numbers of services used by clients and detailed simply as the proportions of clients using one or another service. The most commonly reported services were community nursing, home help and meals services, but few studies reported all of these let alone the range of other services such as aids and appliances and in-home, day centre or residential respite. A useful further identifier, but one that was rarely used, was whether the client received only standard HACC services or was enrolled in one of the sub-programs providing intensive case managed support.

Reports of the mix and levels of services used were extremely limited and the more common indicator of intensity or complexity of service use was the number of services used. Some of the single provider studies were restricted to describing users of that service or only services provided by that agency and did not always take account of services provided by other agencies. It is of particular note that while some studies gave accounts of resource use in terms of hours of service, only four attempted to cost service use (McCallum et al. 1994; Home Care Service of NSW 1995; Kendig et al. 1992; Graham, Ross & Payne 1992).

Although there was some similarity in findings of around one third of clients using only one service and one quarter using four or more services, several qualifications have to be made in comparing these figures. Not the least of these is the definition of “a service” for counting purposes. Separate counting of linked services, such as day care and transport, inflated multiple service use in

123

Page 5: What Does Community Care Research Tell Us About Community Care in Australia?

some cases. The studies based on a single service agency also began with a selective client population, counting additional service use only among clients already using that service. Such studies overestimate multiple service use in the HACC population as a whole as clients who use only one service, but a service other than the service under study, are not counted.

The most general limitation in the reporting of service use is the lack of analyses relating client characteristics to service use to show which clients used which services. Where systematic analyses of this kind were made, increasing dependency was not consistently associated with increasing service use. Rather, the NSW Home Care study (Alt Statis & Associates 1995) found that the most dependent clients were spread across the full range of hours of service use and, among the clients admitted to Community Options Projects on the basis of their high dependency and complex care needs, there were conspicuous variations in levels, mixes and costs of services used (Kendig et al. 1992; Graham, Ross & Payne 1992).

A number of studies report a variant on the inverse law of health service use, whereby clients with more informal support used fewer services and were less likely to be admitted to lower levels of residential care, but remained at home until a high level of dependency was reached and admission to nursing home care was required. Service use can variously be interpreted as a preventor of admission to residential care, or a predictor of this outcome, in different circumstances. Considerable further analysis of the varying relationships between dependency and service use, and of the factors mediating these relationships, is required before a targeting strategy of allocating resources on the basis of dependency, however defined and measured, could be supported.

Further basic analysis of service use by client groups defined in terms of demographic, social and dependency characteristics is also a prerequisite to the development of more complex classifications of clients for funding purposes, an area of emerging interest in community care research (Donelly et al. 1995; Maddox 1996). Thus, the simple step of reporting client profiles in terms of age and sex groups for the ACAT database for Victoria and Western Australia has shown fully 40 per cent were women aged 80 years and over, of whom two out of three lived alone. This finding prompts questions about contemporary norms regarding how very old women should live in the community. From this perspective. the provision of services may be more readily seen as a part of ordinary everyday life rather than only a response to extraordinary circumstances associated with disability and dependency. OUTCOMES INVESTIGATED

The intention of the HACC program to prevent premature or inappropriate admission to residential care has made this a main outcome of interest in evaluations of community care. Fully 13 of the 21 studies reported the proportion of clients who were admitted to residential care, or for whom such an outcome was recommended or expected.

In six studies, this proportion was around 20 to 25 per cent of clients, with higher figures reported when studies focused on high need clients or had longer follow-up periods. In contrast, the two population based studies showed low rates of admission, the lowest being an I24

annual rate of two per cent from the total population aged 65 years and over covered in the Dubbo study (McCallum et al. 1994, 1995).

The Victorian Carers Roject which dealt with a more selected population, but covered all age groups, reported that seven per cent of care recipients were admitted over a year. As none of the younger care recipients were admitted, the rate of admission was higher among older care recipients (Howe et al. 1997). These differences illustrate very well the need to take account of methodologies in interpreting findings of individual studies and in comparing findings across studies.

The findings suggest that even small amounts of support had beneficial

eflects.

Four studies used comparison or control groups to investigate relationships between use of community services and outcomes at different points of contact with community care, from initial take up of services to exit to nursing home care. A comparison of a group of clients who received a minimal amount of home care and a control group who were not admitted to the service on grounds of having a lower level of need found that at 12 months, the control group experienced more adverse outcomes on several indicators: a higher proportion could not be traced, more were admitted to residential care, more died, more were hospitalised and had longer stays (Turvey & Fine 1996). The findings suggest that even small amounts of support had beneficial effects, although it is difficult to establish whether the differences in hospital use are attributable to the intervention or whether poorer health status of the control group precipitated greater hospital use. Nonetheless, it appears that service providers found it difficult to differentiate between clients with low needs and those with even lower needs and to assess the potential benefits of service provision vis-a-vis the consequence of non-provision. Mis-targeting is apparent to the extent that some recipients may have managed as well as non-recipients had they not received services, at the same time as some non-recipients would have fared better had they received services.

A second study of clients assessed by ACATs that compared those recommended to remain in. the community with those recommended for hostel care found prior service use to be only one of many factors that had a significant relationship with either outcome (Charlton, Humphries & Russell 1996). There were few significant differences between the groups in dependency, suggesting that dependency alone would be an ineffective basis for targeting services to those most likely to enter hostels. The greatest differences between the groups were rather in informal support and psychosocial factors, including loss of confidence and motivation to remain in the community, preference to enter a hostel and the carer wanting the client to enter; significantly higher and large proportions of clients recommended for hostel care also reported depression, insecurity, loneliness, client stress and family anxiety. These findings prompt questions about whether, and what kinds of, community services could address these needs as effectively as admission to a hoste I.

The effectiveness of intensive case managed care was examined in two evaluations of Community Options

Australian Journal on Ageing. Vol. 16, No. 3

Page 6: What Does Community Care Research Tell Us About Community Care in Australia?

Projects (Gray et al. 1995; Charlton et al. 1992). Notwithstanding different methods of client recruitment and measures, similar factors were found to differentiate clients admitted to residential care from those remaining in the community, namely low Barthel Index score, presence of dementia, behavioural problems and living alone. One study found no significant difference in the . proportions of the experimental and control group surviving in the community over two years, and the significant difference found in the other study at 9 months disappeared thereafter. The clients in the former study were more dependent at entry and the convergence in outcomes observed in the latter study could be explained by early attrition of the initially most dependent and increasing dependency of the remainder, making it increasingly difficult for services to have an effect.

Taken together, the findings on outcomes of community care point to three conclusions. First, the window of opportunity for effective community care interventions appears to come earlier rather than later in the course of dependency. Community services emerge as a relatively weak, and diminishing, intervention in the face of marked increases in physical and mental dependency and especially where clients had been hospitalised. Second, recognition of the varying thresholds of admission to different forms of residential care for those living alone and those living with others implies not only that differential interventions will be required to counter these outcomes for different client groups, but that the personal and financial desirability of alternative outcomes will also vary.

~~

The focus on admission to residential care prescribes an unduly narrow view

of outcomes of community care.

Finally, it is evident that the focus on admission to residential care prescribes an unduly narrow view of outcomes of community care. The failure to find that community care has a significant effect on admission rates runs the risk that programs will be curtailed on this ground without recognition of many other outcomes that may have been achieved. These benefits extend beyond the performance of the specific tasks that each service accomplishes to the general reassurance that comes from help being available. The disbenefits of not receiving a service similarly come not only from continuing unmet need to have a task done, but also from the possibly much more adverse effects of feeling that no help is available and the discouragement of further requests for help. Because these outcomes may be small and diffused across many areas of daily life, and hence harder to measure and attribute to service interventions than more specific effects, is not a reason to neglect them.

STRENGTHENING COMMUNITY CARE RESEARCH

The diversity of community care research in Australia reflects the diversity of HACC, but as i t is not representative of that diversity, it cannot provide an adequate information base for policy and program development, Although the results of the studies covered in the appraisal have informed policy development and can inform it further, three sets of factors that have limited this contribution need to be addressed if future community care research' is to make a greater Austruliun Journal on Ageing. Vol. 16, No. 3

contribution. These shortcomings are not unique to Australian communuty care research.

The first, and most readily addressed limitations, are the lack of standardisation in data collection and unsophisticated research designs and analyses. The former problems are being tackled by the Australian Institute of Health and Welfare (1995, 1996; Rickwood 1995) in aligning various administrative collections from which much research data can be drawn and that set standards and conventions for other collections. Improving the tools of research will not, however, address the more basic question as to what should be measured and why.

Development of research designs might be advanced by the establishment of a national reference centre to coordinate an organised effort in community care research as an adjunct to the HACC Program. The imminent release of the 1996 census data and proposed changes in both community and residential aged care at federal level makes the development of such an organised research effort all the more timely.

The second area in which gains could be derived is the more systematic integration of findings of separate studies that would, in turn, assist in identifying areas in need of investigation. The research coverage of community care is very patchy, with intense scrutiny of small scale experimental subprograms contrasting with the dearth of investigation of HACC overall. The paradoxical result is that it is difficult to interpret findings relating to the minority of clients selected into various special programs when. there is very little information available on the majority who receive services through the core HACC program. As this core determines the baselines at which add-on programs take effect, it is necessary to know whether a sound base of good community care presents small margins for further achievement, or whether the base is too weak a foundation for other services to build on.

Studies at different scales also need to be better integrated to assess how far patterns of service use and outcomes found in analyses of large scale databases aggregated over many services are apparent in studies in individual agencies with small numbers of clients. Identifying sentinel areas or services would enable the typicality or otherwise of local area or single service studies to be established and provide a means for translating between studies at different scales. It would also enable findings to be interpreted with reference to variations in other factors in local settings that affect outcomes; not the least important of these is the level of provision of residential care. Generalisation from qualitative information collected in smaller scale studies would also be facilitated when case studies could be viewed as cases of more general phenomena.

The third necessary development is a stronger theoretical framework for community care research that would generate relevant hypotheses, structure analyses to test them, and extend the search for explanations into the contexts in which community care operates. Community care research has been isolated from other areas of gerontological research and has been undertaken largely without reference to sociological theory that has informed studies of informal care and intergenerational exchange, or to the political economy paradigms of policy analysis.

I25

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Public health theory and models of population-based and high risk intervention strategies Seem especially pertinent to community care research. Unlike that field, community care research has been largely devoid of reference to the marked variations in health status and well-being associated with social class that characterise the older population in Australia (Mathers 1994). Yet these factors are highly likely to affect access to community care, the role of services in clients' every day lives, expectations of care and actual outcomes.

When viewed in this wider context, HACC might best be seen as a program that makes a little difference to the lives of many people, and a lot of difference to the lives of a few. Outcomes for individuals, for services and for the program as a whole need to be measured accordingly. It is this totality of outcomes that has to be considered in evaluating the effectiveness of the multiplicity of services and their interactions with informal care and with other health and welfare services, that comprise community care.

The outcome of HACC as a whole is much more than the sum of the parts that have been the subject of research, and until more thought is given to researching the full range of outcomes to which community care contributes, we are likely to mistake what is measured for what is important, and fail to see that it is what is as yet unmeasured that may be invaluable. ACKNOWLEDGMENT

The research on which this paper is based was carried out as part of a consultancy commissioned by the Commonwealth Department of Health and Family Services, in conjunction with State and Territory Government Departments administering the Home and Community Care Program. The consultancy has been carried out jointly with the Bundoon Extended Care Centre and the contributions of Lorraine Beyer, Senior Research Fellow, and Len Gray, Executive Director, to the critical appraisal referred to in this paper are gratefully acknowledged. Addmrs rnrmspmdrnce to Dr Anna Howe. Deputy Directus Nutiunul AyeinR Rexearch Imtirure. PO Box 31. Parkville. Kc 3052.

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