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Health and Social Care in the Community 12(6), 488–503

Patients with advanced cancer and family caregivers’ knowledge of health and

Blackwell Publishing, Ltd.

community services: a longitudinal study Catherine M. Burns1 BA BSASW MPhil, Tracy Dixon2 BMath BSc(Hons), Wayne T. Smith3 FAFPHM PhD and Paul S. Craft4 FRACP MPH 1

Social Work Department, The Canberra Hospital, Canberra, Australian Capital Territory; School of Social Administration and Social Work, Flinders University, Adelaide, South Australia; and The Cancer Council South Australia, Unley, South Australia; 2National Centre for Epidemiology and Population Health, Australian National University, Canberra, Australian Capital Territory; 3Centre for Clinical Epidemiology and Biostatistics, University of Newcastle, Newcastle, New South Wales; and 4Medical Oncology Unit, The Canberra Hospital, Canberra, Australian Capital Territory, Australia

Correspondence

Abstract

Ms Kate Burns The Cancer Council of South Australia PO Box 929 Unley South Australia 5061 Australia E-mail: [email protected]

The present study examines the knowledge of health and community services reported by patients with advanced cancer and their family caregivers, and compares patient-stated use with their knowledge of availability. A longitudinal study of the quality of life of patients with advanced cancer was conducted out of the cancer services of The Canberra Hospital, a teaching service, in Canberra, Australian Capital Territory, Australia. Some 317 subjects were recruited sequentially, comprising patients (n = 181) and their nominated family caregivers (n = 136). Patients were more aware of the available health and community support services compared with their caregivers, and differences were significant for most allied professional services, as well as some key supportive care institutions and community programmes. Knowledge of community support services was variable and low for those specifically associated with terminal care. While congruence of knowledge for dyads was quite low in some areas, overall household knowledge was high. The identified sources were mainly non-medical. Nurses, social workers and alternative practitioners, as well as family, friends and commercial sources were the main categories which were identified. No statistically significant changes in knowledge or sources of information occurred over time. Further longitudinal research would assist healthcare teams to understand the role of health and community services in the advanced cancer setting. The identification of systemic and regional weaknesses in communication may assist in improving family knowledge and improve timely access to important supports in the advanced cancer setting. Keywords: cancer, community health, family caregivers, knowledge, patients Accepted for publication 22 April 2004

Introduction Research into the psychosocial needs of people diagnosed with cancer has been undertaken for over 2 decades, but very little has included the family caregiver as a partner in the continuum of care. A recent report of a European expert group discussed strategies 488

for improving coordination of interdisciplinary cancer care (Evered 2004). The above authors emphasised that further research was required into defining patients’ social and psychological needs, which included families, and in particular, responding to information needs to enable informed choices to be made (Evered 2004). In the USA, research has begun to emphasise the social © 2004 Blackwell Publishing Ltd

Patients with advanced cancer

context of patients with advanced cancer and their family caregivers (Morris & Thomas 2001, Steinhauser et al. 2001, Thomas & Morris 2002). Studies which have explored family needs emphasises their need for information (Grande et al. 1997, Emanuel et al. 1999, Jepson et al. 1999). Needs are known to vary over time because of treatment and the progression of the disease, and can include assistance with daily living (Guadagnoli & Mor 1991, Mor et al. 1987). Studies have demonstrated that unmet needs increase mortality, and place high levels of burden and the greatest strain on the poor, the young and the aged (Siegel et al. 1991, Covinsky et al. 1996). A large-scale, cross-sectional study in an Australian state recruited 1315 patients in order to identify and obtain the prevalence of the unmet needs of patients diagnosed with cancer. Five domains of need were identified using 59 items: psychological; health system and informational; physical and daily living; patient care and support; and sexuality. The 10 items with the highest frequency related to the psychological needs domain (five items), the health system and information domain (three items), and the physical and daily living domain (two items) (Boneveski et al. 2000, Sanson-Fisher et al. 2000). With 60% of patients preferring to die at home, there is an increasing focus on providing appropriate community supportive care (Townsend et al. 1990, Sims et al. 1997, Hunt & McCaul 1998). Health policy analysts have pointed out that caring can be a primary focus of health services delivered to patients with incurable disease (Lewis & Leeder 2001). Many countries have developed support services which include home nursing and allied health support, and home help and personal support, together with transportation (Mor et al. 1992a,b, Addington-Hall et al. 1993). Diversity has been the hallmark of the Australian health system. Federal funds for palliative, respite and child care are provided alongside state and local government and non-government services, as well as private sector services. Current community programmes provide assistance for ‘instrumental needs’ (e.g. transport and home help), supportive care and allied health services. Families require knowledge of available community services to support the patient emotionally and physically (Houts et al. 1991, Nijboer et al. 2001). Studies in the USA have found that patient knowledge of health and community resources is frequently poor (Grobe et al. 1981, Houts et al. 1988, Guadagnoli et al. 1991). Levels of caregiver knowledge of these resources have not previously been reported. The present authors are not aware of any studies which have evaluated household knowledge using matched comparative data from patient and caregiver respondents.

Subjects and methods The present report is part of a larger longitudinal observational study exploring the quality of life of patients with advanced cancer and their family caregivers. The aims of the present paper are: • to describe caregiver features in detail; • to establish the prevalence of patient and caregiver knowledge of available health and community support services, and determine sources of information about these services; • to identify associations between knowledge of services, and selected socio-demographic and clinical characteristics; • to report on patients’ use of health and community services; and • to determine if knowledge or use of services changed over time. Study sample The present study, known as the Canberra Cancer Quality of Life Project (CCQLP), included patients aged 18 years or more presenting sequentially at an Australian teaching hospital. All had a diagnosis of incurable malignant disease, with symptoms attributable to their disease either present or anticipated as likely to develop within the 6-month observation period. It was planned to recruit about 200 subjects, which is a sufficient number of subjects to detect an odds ratio for any variable with at least 20% exposure among controls of 3.5 or greater for the highest compared to the lowest quartile, or an odds ratio of 1.9 for the upper half compared to the lower half. This is also sufficient to calculate point estimates with confidence intervals of ±6% or less for any variable with a prevalence of 10% or less, or to calculate point estimates with confidence intervals of ±7% for any variable with a (worst-case) point estimate of 50%. Survival status was followed up until 31 March 2003, at which time there were only nine surviving patients. Caregivers were described as ‘a carer or support person, e.g. a spouse/partner, other relative or friend who gives you physical and/or emotional support’. All participants gave written informed consent. The Australian Capital Territory (ACT) Health and Community Care Ethics Committee approved the study. Data collection Patients screened from March to August 1996 were enrolled together with their carers. Trained nurse interviewers collected data from both patients and carers

© 2004 Blackwell Publishing Ltd, Health and Social Care in the Community 12(6), 488–503

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Table 1 Classification of Australian supportive cancer care programmes Instrumental support services

Community programmes

Supportive care institutions

Allied health professionals

Transport Community transport Disabled parking

Support groups Home visiting/ hospice volunteers Pastoral care

Nursing Community nursing Palliative nursing Veterans Affairs nursing

Home help Mobile rehabilitation unit Home help Linen service Meals on wheels

Quality-of-life services Wig library Look Good Feel Better programme Mobile library Health farms

Australian Capital Territory Hospice Cancer Society Community Options Home and Community Care Aged Care Assessment Team Nursing homes

Personal caring Personal care Respite care Child care

Allied health Social worker Counsellor Physiotherapist Occupational therapist Speech therapist Dietician CAMS * Acupuncturist Herbalist Chiropractor Naturopath Osteopath

* Complementary and alternative medicines.

during weeks 1 and 12 using a number of survey instruments. The present report describes the findings regarding patients’ and their caregivers’ knowledge of health and community services, as described below. The results presented are for the matched sample of 129 patient–caregiver pairs where both completed the baseline questionnaire and the 87 pairs who completed the follow-up at week 12. Other data collected from carers have been reported elsewhere (Burns et al. 2003). Data sources and measures Data on socio-demographic characteristics and performance status were obtained by patient interview. Clinical data were gained through case-note review at baseline, with a further case-note review by junior medical officers at the end of the study to complete the extraction of treatment details. Death information was retrieved both from case notes and the National Death Index at the Australian Institute of Health and Welfare (Canberra, Australian Capital Territory). No instrument was available to measure knowledge of community services. In an exploratory questionnaire, the present authors sought to identify component parts with a checklist of the main community resources which clinicians knew were available within the city. A literature review was also undertaken, followed by a patient focus-group, and validation of the index of services through a workshop of medical, nursing and social work participants. The final list of 36 resources was classified into four main areas of services for seriously ill patients: instrumental support services, community 490

programmes, supportive care health institutions and allied health professionals (see Table 1). The socio-demographic and clinical variables were designed to ensure a comprehensive picture. The present authors sought to capture the illness course of the patient population who were, in reality, approaching death by using three types of analytic measures: the Eastern Cooperative Oncology Group (ECOG) measure, a time to death measurement and a psychosocial classification. The ECOG indicator is now accepted throughout cancer medicine world-wide (Oken et al. 1982). It uses an ordinal approach for clinical evaluation of physical functioning amongst a cancer patient population, defined as follows: (0) able to carry out normal activities without restriction; (1) ambulatory – capable of light work, restricted with strenuous activity; (2) ambulatory – capable of self-care, but unable to work; (3) resting in bed/chair more than half waking hours, only capable of limited self-care; and (4) totally confined to bed/chair, not capable of any self-care. Time to death was calculated for all respondents by accessing the Australian National Death Index in conjunction with the clinical records within The Canberra Hospital, Canberra, ACT, Australia, and the ACT health system. Length of survival was stratified into four time sequences to capture: the ‘palliative’ phase of the last 6 months of life; the ‘advanced’ phase of one year from death; the ‘serious illness’ phase of 1–2 years from death; and the ‘chronic disease’ phase of more than 2 years from death. In addition, the present authors calculated a psychosocial stage of disease classification that records time



phases in the natural history of disease (Rolland 1994). The variable was constructed by defining the crisis phase as 90 days from diagnosis and the terminal phase as 60 days from date of death. The chronic phase was calculated as the period between these time points. For patients who died within 90 days of diagnosis, the classification was identified as the crisis phase. The characteristics of care-giving captured aspects of primary and secondary care-giving, key details related to household composition, and the impact of caring on employment patterns and social activity. Specific information was sought with regard to whether caregivers accompanied the patient to the clinical consultation, their perception of the amount of average weekly assistance that they provided and some global indices of difficulty in caring. Data analysis These were undertaken using the SPSS Version 10.0 computer program (SPSS 2003). Statistical associations of socio-demographic and clinical variables were tested using the Pearson chi-square (χ2) test and Fisher’s exact test, where necessary, for nominal variables, and the Mann–Whitney U-test for ordinal variables, depending on whether variables were binary or polychotomous. The kappa (K) statistic and McNemar’s test for paired proportions were used to assess agreement between patients’ and caregivers’ knowledge of health services. Wilson’s method (Newcombe 1998) was used to calculate 95% confidence intervals for the percentages for patients’ knowledge and use of local support services at baseline.

Results Out of 237 eligible patients, there were 183 (77%) patients who agreed to participate. One subject withdrew and one died, leaving a study cohort of 181. There were 163 patients who completed the study instrument at week 1 and 122 at week 12. Loss to follow-up was caused by the deaths of 22 subjects, with four more close to death and one seriously ill. Compared to respondents, the remaining 14 non-respondents were more likely to be male, living in the non-metropolitan area, divorced or separated, and with full secondary qualifications. There were 167 patients at enrolment nominating a caregiver (92%), of whom 136 completed the baseline survey and 92 completed the week 12 survey. Loss to follow-up was caused by the death of the patient in 18 cases, and in a further five cases, the patient was seriously ill; the remainder tended to be Australian, living in the non-metropolitan area, were the child

of the patient and were more likely to be aged under 50 years. Patient and caregiver characteristics The socio-demographic, clinical and care characteristics of patients and caregivers who completed the week 1 survey are presented in Tables 2 and 3. Only 14 patients (8%) did not nominate a caregiver. The only distinguishing characteristic between patients not nominating a caregiver and those who did nominate was marital status; only three out of 14 (21%) patients without a caregiver were married compared with 124 out of 167 (74%) patients with caregivers (P < 0.001, Fisher’s exact test). There was a similar proportion of males and females amongst the patient population; one-third were aged over 70 years, and another third were aged between 60 and 70 years. Around one-third were born outside Australia, and around 15% were from the non-metropolitan area. The clinical features revealed that the distribution of disease sites amongst the patients was typical of ambulatory cancer clinics; almost half the patients for this report were from medical oncology, 70% had metastatic involvement, and the treatment therapies for the majority were radiotherapy and chemotherapy in equal proportions. The course of illness indices identified that this patient population was robust for an advanced cancer group, with large numbers ambulatory (ECOG 1 & 2) (Table 2). The psychosocial classification identified that, at the beginning of the study, one-quarter of patients (26%) were in the crisis phase and one-third (34%) were within 6 months of death. The relationships between caregivers and patients were diverse: 71% were the spouse/partner of the patient, 17% were daughters, another 8% either relatives or friends, and 4% were parents. Most caregivers were married (88%), and one-third were male (35%). Onefifth of caregivers did not live in the same household as the patient. A detailed analysis of caregiver characteristics was conducted first with nominal variables using the χ2 test and the Mann–Whitney U-test for ordinal variables, with the exception of age. Although an ordinal variable, the different distribution in the two age groups precluded use of the Mann–Whitney U-test and the χ2 test was used instead. Analysis highlighted some important features among non-spouse caregivers: they were significantly (P < 0.001) more likely to be young (36% were under 40 years of age) or female (89%) compared with the spouses of patients. Only 56% of nonspousal caregivers were married. While many caregivers accompanied the patient to visit the doctor (around 84%), there was a significant difference (P = 0.006) based on the relationship; almost one-third of non-spouses never


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Characteristic

Number

Percentage

Sex: female male

86 77

52.8 47.2

Age (years): < 40 40– 49 50–59 60– 69 ≥ 70

6 18 36 49 54

3.7 11.0 22.0 30.1 33.1

Marital status: never married married/cohabiting widowed divorced separated

10 116 20 14 3

6.1 71.2 12.3 8.6 2.3

Place of birth: Australia UK /New Zealand/Canada/ USA Europe Asia Other

104 30 17 9 2

64.2 18.5 10.5 5.6 1.2

Residence: metropolitan non-metropolitan

136 27

83.4 16.6

2 68

1.2 42.9

57 25

34.2 19.3

Performance status: able to carry out normal activities without restriction ambulatory – capable of light work, restricted with strenuous activity ambulatory – capable of self-care, but unable to work resting in bed/chair more than half waking hours, only capable of limited self-care totally confined to bed/chair, not capable of any self-care

9

2.5

Diagnostic groups: breast lung gastrointestinal lymphoma /myeloma/leukaemia prostate ovarian other

40 31 122 18 13 10 29

24.3 19.0 13.5 11.0 8.0 6.1 17.8

Sites of disease: persistent or recurrent local/regional disease metastases

51 112

31.3 68.7

Psychosocial classification: crisis, i.e. 90 days from diagnosis chronic, i.e. > 90 from diagnosis and < 60 days from death terminal, i.e. < 60 days from death

40 106 10

25.6 67.9 6.4

27 20 48 46 22

16.6 12.3 29.4 28.2 13.5

53 102

34.2 65.8

Specific therapy within one month of enrolment: supportive care only chemotherapy and radiotherapy radiotherapy only chemotherapy only hormonal manipulation Time to death: > 6 months < 6 months

492

Table 2 Socio-demographic and clinical characteristics of the patients who responded to survey (n = 163)



Table 3 Socio-demographic characteristics of the caregivers who completed the week 1 survey by relationship to patient

Characteristic Sex: female male Age (years): < 40 40 –49 50 –59 60 –69 ≥ 70 Marital status:† never married married/cohabiting widowed divorced Place of birth: Australia New Zealand/USA / UK/Canada other (Europe) Asia other (unknown) Place of residence: metropolitan non-metropolitan Carers and their recipients relationship to patient:† spouse child other/unknown Living in same household as patient: yes no

All caregivers (n = 136)

Caregiver was spouse* (n = 97)

Caregiver not spouse (n = 36)

Number

Percentage

Number

Percentage

Number

Percentage

65.4 34.6

53 44

54.6 45.4

32 4

88.9 11.1

χ2 = 13.4, d.f. = 1, P < 0.001 88 48

χ2 = 28.1, d.f. = 4, P < 0.001 19 23 36 32 25

13.2 17.1 27.1 24.0 18.6

5 13 29 28 22

5.2 13.4 29.9 28.9 27.7

13 9 7 4 3

36.1 25.0 19.4 11.1 8.3

8 116 5 5

4.7 88.3 3.1 3.9

0 93 1 1

0.0 97.9 1.1 1.1

8 20 4 4

22.2 55.6 11.1 11.1

χ2 = 40.4, d.f. = 3, P < 0.001

χ2 = 6.2, d.f. = 5, P = 0.292 97 19

71.3 14.0

65 17

67.0 17.5

30 1

85.7 2.9

12 5 3

8.8 3.7 2.1

9 4 2

9.3 4.1 2.0

3 1 0

8.6 2.9 0.0

112 21

84.3 15.7

80 14

85.1 14.9

29 7

80.6 19.4

χ2 = 0.6, d.f. = 1, P = 0.507

χ2 = 111.6, d.f. = 2, P < 0.001 96 26 14

70.6 16.9 12.5

94 1 2

96.9 1.0 2.1

0 25 11

0.0 69.4 30.6 χ2 = 74.1, d.f. = 1, P < 0.001

80.2 19.8

96 1

99.0 1.0

12 24

33.3 66.7

Secondary supports for caregiver:‡ no one 23 daughter(s) 70 son(s) 56 sister(s) 22 brother(s) 18 mother 12 father 7 other male relative 22 other female relative 16

16.2 48.5 39.7 19.8 12.5 8.8 5.1 14.7 11.0

19 58 48 18 9 8 3 8 8

19.6 59.8 49.5 18.6 9.3 8.2 3.1 8.2 8.2

4 12 7 4 9 2 3 13 8

11.1 33.3 19.4 11.1 25.0 5.6 8.3 36.1 22.2

Visit doctor together: yes, often yes, a bit no

52.9 30.9 16.2

57 29 11

58.8 29.9 11.3

13 12 11

36.1 33.6 30.6

Impact of caring on employment status retired stopped work to care working

Significance†

110 26

χ2 = 1.3, d.f. = 1, P = 0.310 χ2 = 7.4, d.f. = 1, P = 0.011 χ2 = 9.8, d.f. = 1, P = 0.003 χ2 = 1.0, d.f. = 1, P = 0.432 χ2 = 5.5, d.f. = 1, P = 0.025 χ2 = 0.3, d.f. = 1, P = 0.728 χ2 = 1.7, d.f. = 1, P = 0.343 χ2 = 15.3, d.f. = 1, P < 0.001 χ2 = 4.8, d.f. = 1, P = 0.037 Z = 2.7, P = 0.006

72 42 22

Z = −0.2, P = 0.832 40 39 55

29.9 29.1 41.0

31 24 40

32.6 25.3 42.1

9 13 14


25.0 36.1 38.9

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Table 3 Continued

Characteristic Stopped work: full-time part-time special (paid leave) leave without pay not applicable Average weekly assistance over past month (hours): 0–10 11–30 31–100 > 100

All caregivers (n = 136)

Caregiver was spouse* (n = 97)

Caregiver not spouse (n = 36)

Number

Percentage

Number

Percentage

Number

Percentage

8.7 3.2 14.3 4.0 69.8

7 2 14 1 69

7.5 2.2 15.1 1.1 74.2

4 2 4 3 23

11.1 5.6 11.1 8.3 63.9

Significance† Z = −1.1, P = 0.279

11 4 18 6 93

Z = −2.4, P = 0.016 24 31 40 31

17.4 24.0 33.1 25.6

16 18 29 27

17.8 20.0 32.2 30.0

8 12 10 3

24.2 36.3 30.3 9.1

* ‘Spouse’ includes partner or cohabiting. Three caregivers who were identified by the patient as their spouse did not record this as their relationship. † Chi-square or Mann–Whitney U-test. ‡ More than one response was allowed.

accompanied the patient on a visit in comparison with only 11% of spouses (Table 3). Secondary support for caregivers was high, with only 16% indicating that they had no other family member to support them. Caregivers who were the spouses of patients were significantly more likely to indicate that they had support from their adult children, both females and males. Non-spouses were significantly more likely to identify a brother or less immediate relatives (Table 3). Almost one-third of caregivers (29%) had stopped work to care, of whom half were able to take special leave. Caregivers supplied substantial amounts of care; more than 80% had given an average of over 10 hours weekly in the past month, and the majority invested more than 30 hours. Relationship was a significant determinant in the time that caregivers contributed to caring, with almost one-third of spouses indicating that they contributed more than 100 hours per week compared to less than 10% of non-spouses. Knowledge of services In broad terms, allied health professionals were the most well-recognised group: community nursing was very well known, followed by social workers and physiotherapists (Table 4). Complementary and alternative medicine (CAM) services, including acupuncturists and naturopaths, were almost as well known. Institutional recognition was low overall, with the exception of the Cancer Society and nursing homes. The federally 494

funded government programmes Home and Community Care (HACC), the Aged Care Assessment Team (ACAT) and Community Options were identified by only 10–25% in both groups. However, community programmes reported levels of awareness between the above two categories. Between one-third and one half of respondents identified volunteers/home visitors. Knowledge of instrumental support services varied: while community transport, meals on wheels and home help were reasonably well known, some services associated with palliative care in the home were less so; for instance, few patients and caregivers knew of the home linen service. Patients had higher levels of recognition across all 36 items than did family caregivers (Table 4). Significant differences in knowledge were identified amongst allied health services where, with the exception of community nursing, patient knowledge was far more wideranging than that of the caregivers. Similarly patients were significantly more likely to indicate knowledge of key supportive care institutions, namely the ACT Hospice, the Cancer Society and nursing homes. Important instrumental support services, including meals on wheels, respite care, child care and disabled parking motor vehicle registration, were also much more likely to be recognised by patients than caregivers. Congruence of knowledge of services was low between patient–caregiver pairs. Kappa statistics indicate that only the palliative nursing service (K = 0.45) and the Look Good Feel Better programme (K = 0.48) had high levels



Table 4 Percentage of patients and carers who were aware of local support services at baseline (matched sample, n = 129) Australian supportive care programme

Patients (%)

Caregivers (%)

Instrumental support services Home help Community transport Disabled parking Mobile rehabilitation unit Home linen service Meals on wheels Personal care Respite care Child care

75.2 64.3 77.5 17.1 11.6 85.3 19.4 58.1 58.1

57.4 54.3 62.8 13.2 4.7 72.9 14.0 43.4 38.8

Community programmes Pastoral care Support groups Volunteers/home visitors Wig library Look Good Feel Better Mobile library Health farms/retreats

60.5 57.4 47.3 43.4 22.5 41.1 51.9

Supportive care institutions Australian Capital Territory Hospice Cancer Society Community Options Home and Community Care Aged Care Assessment Team Nursing homes Allied health professionals Community nursing Palliative nursing Veterans Affairs nursing Social worker Counselling service Physiotherapist Occupational therapist Speech therapist Dietician/nutritionist Acupuncturist Herbalist Chiropractor Naturopath Osteopath

McNemar’s test exact P-value*

Both knew of services (%)

Kappa Statistic

Either knew of services (%)

0.001 0.092 0.003 0.383 0.064 0.009 0.311 0.008 0.001

48.8 39.5 55.0 7.0 0.8 65.9 3.1 32.6 27.9

0.25 0.19 0.30 0.37 0.03 0.22 0.03 0.29 0.21

83.7 79.1 85.3 23.3 15.5 92.2 30.2 69.0 69.0

44.2 50.4 36.4 33.3 13.2 39.5 38.0

0.005 0.281 0.098 0.053 0.012 0.892 0.011

32.6 32.6 17.8 23.3 10.1 19.4 27.1

0.23 0.15 0.02 0.37 0.48 0.13 0.29

72.1 75.2 65.9 53.5 25.6 61.2 62.8

58.1 83.7 10.1 24.8 24.8 74.4

44.2 70.5 10.9 24.0 21.7 51.2

0.015 0.006 > 0.999 > 0.999 0.608 0.001

31.8 63.6 1.6 12.4 10.1 45.7

0.24 0.25 0.05 0.35 0.26 0.31

70.5 90.7 19.4 36.4 36.4 79.8

88.4 63.6 34.1 80.6 75.2 78.3 59.7 48.1 71.3 75.2 72.1 77.5 70.5 56.6

89.9 53.5 16.3 65.9 56.6 61.2 45.0 37.2 53.5 52.7 48.1 55.8 52.7 39.5

0.815 0.041 0.001 0.004 0.001 0.003 0.004 0.059 0.001 0.001 0.001 0.001 0.001 0.002

82.2 45.0 10.9 57.4 45.7 51.9 36.4 24.0 46.5 46.5 41.1 49.5 42.6 30.2

0.28 0.45 0.27 0.21 0.14 0.18 0.38 0.25 0.35 0.28 0.25 0.27 0.22 0.30

96.1 72.1 39.5 89.1 86.0 87.6 68.2 61.2 78.3 81.4 79.1 83.7 80.6 65.9

* Values in bold indicate a significant difference in the proportion of patients and caregivers aware of a service.

of agreement (Table 4). There was a small cluster of items with a moderate level of agreement; for instance, reasonable numbers both knew of disabled parking (K = 0.30) and the mobile rehabilitation unit (K = 0.37) amongst nine instrumental support services identified. Nevertheless, only one service in each of the community programmes (the wig library) and the supportive care institutions (nursing homes) had even moderate levels of agreement. However, analysis of household knowledge was found to be reasonably high. Using the measure of

either patient or the caregiver knowledge of a service, 27 services out of 36 were recognised by over two-thirds of households (Table 4). Factors associated with knowledge of community services Analysis of socio-demographic factors demonstrated some important differences in knowledge across the span of services and programmes: for patients, the


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Table 5 Percentage of patients who were aware of local support services at baseline, by residence Patients (n = 163) Australian supportive care programme

Metropolitan (%)


72.1 66.9 79.4 19.1 14.7 86.0 20.6 58.8 60.3

66.7 59.3 59.3 3.7 0.0 74.1 7.4 37.0 51.9

χ2 = 0.31, d.f. = 1, P = 0.572 χ2 = 0.58, d.f. = 1, P = 0.444 χ2 = 5.02, d.f. = 1, P = 0.025 χ2 = 3.87, d.f. = 1, P = 0.049 χ2 = 4.52, d.f. = 1, P = 0 .033 χ2 = 2.40, d.f. = 1, P = 0.121 χ2 = 2.60, d.f. = 1, P = 0.106 χ2 = 4.32, d.f. = 1, P = 0.038 χ2 = 0.66, d.f. = 1, P = 0.415

Community programmes Pastoral care Support groups Volunteers/home visitors Wig library Look Good Feel Better Mobile library Health farms

85.9 59.6 48.5 46.3 19.9 41.9 53.7

14.1 57.9 29.6 22.2 22.2 29.6 25.9

χ2 = 1.07, d.f. = 1 P = 0.0301 χ2 = 0.55, d.f. = 1 P = 0.458 χ2 = 3.24, d.f. = 1, P = 0.072 χ2 = 5.36, d.f. = 1, P = 0.021 χ2 = 0.07, d.f. = 1 P = 0.780 χ2 = 1.41, d.f. = 1, P = 0.234 χ2 = 6.94, d.f. = 1, P = 0.008

Supportive care institutions Australian Capital Territory Hospice Cancer Society Community Options Aged Care Assessment Team Home and Community Care Nursing homes

61.0 84.6 77.3 28.7 24.3 74.3

18.5 66.7 22.7 14.8 25.9 63.0

χ2 = 16.38, d.f. = 1, P < 0.001 χ2 = 4.80, d.f. = 1, P = 0.028 χ2 = 0.69, d.f. = 1, P = 0.403 χ2 = 2.22, d.f. = 1, P = 0.135 χ2 = 0.03, d.f. = 1, P = 0.855 χ2 = 1.44, d.f. = 1, P = 0.230

Allied healthcare professionals Community nursing Palliative nursing Veterans Affairs nursing Social worker Counselling services Physiotherapy Occupational therapy Speech therapist Dietician/nutritionist Acupuncturist Chiropractor Naturopath Herbalist Osteopath

89.0 64.0 31.6 85.1 77.9 78.7 61.0 50.7 71.3 76.5 79.4 72.1 72.8 58.8

74.1 44.4 33.3 74.1 59.3 704 44.4 29.6 51.9 63.0 63.0 48.1 55.6 37.0

χ2 = 4.28, d.f. = 1, P = 0.039 χ2 = 3.60, d.f. = 1, P = 0.058 χ2 = 0.03, d.f. = 1, P = 0.861 χ2 = 1.46, d.f. = 1, P = 0.226 χ2 = 4.17, d.f. = 1, P = 0.041 χ2 = 0.88, d.f. = 1, P = 0.347 χ2 = 2.54, d.f. = 1, P = 0.110 χ2 = 4.02, d.f. = 1, P = 0.045 χ2 = 3.93, d.f. = 1, P = 0.047 χ2 = 2.14, d.f. = 1, P = 0.143 χ2 = 3.40, d.f. = 1, P = 0.065 χ2 = 5.92, d.f. = 1, P = 0.015 χ2 = 3.14, d.f. = 1, P = 0.074 χ2 = 4.32, d.f. = 1, P = 0.038

greatest difference occurred between country and metropolitan respondents (Table 5), and for caregivers, employment status was significantly associated with knowledge (Table 6). Clinical factors were far less relevant. Patients Non-metropolitan patients, comprising 17% of the total patient sample, were significantly less likely to know about professional care, including community nursing services, and a number of other instrumental support services (Table 5). 496

Non-metropolitan (%)

Chi-square test

Services specially developed for women showed significant differences in knowledge by gender; for example, the wig library, which was recognised by 61% of women but only 22% of men (χ2 = 24.5, d.f. = 1, P < 0.001), and the Look Good Feel Better programme, known by 33% of women but only 7% of men (χ2 = 17.1, d.f. = 1, P < 0.001). Significant gender differences were also seen in knowledge of support groups (χ2 = 6.3, d.f. = 1, P = 0.012), of which 67% of women but only 48% of men were aware, and the Cancer Society (χ2 = 7.6, d.f. = 1, P = 0.006), which was identified by 90% of females but only 63% of males. Among allied health



Table 6 Percentage of caregivers who were aware of local support services at baseline, by employment status Caregivers (n = 136) Australian supportive care programme

Retired

Working

Stopped work

P-value*


75.0 70.0 77.5 27.5 15.0 87.5 25.0 55.0 47.5

51.3 43.6 61.5 7.7 2.6 74.4 5.1 43.6 33.3

54.5 56.4 60.0 9.1 1.8 67.3 14.5 41.8 34.5

χ2 = 5.64, d.f. = 2, P = 0.059 χ2 = 5.61, d.f. = 2, P = 0.060 χ2 = 3.56, d.f. = 2, P = 0.168 χ2 = 8.35, d.f. = 2, P = 0.015 P = 0.034 (Fisher’s exact test) χ2 = 5.13, d.f. = 2, P = 0.077 χ2 = 6.15, d.f. = 2, P = 0.016 χ2 = 1.77, d.f. = 2, P = 0.411 χ2 = 2.17, d.f. = 2, P = 0.338


55.0 57.5 50.5 45.0 17.5 60.0 42.5

38.5 43.6 33.3 43.6 20.5 30.8 35.9

41.8 50.9 32.7 18.2 5.5 36.4 36.4

χ2 = 2.51, d.f. = 2, P = 0.284 χ2 = 1.53, d.f. = 2, P = 0.465 χ2 = 3.45, d.f. = 2, P = 0.178 χ2 = 9.93, d.f. = 2, P = 0.007 χ2 = 5.26, d.f. = 2, P = 0.072 χ2 = 8.06, d.f. = 2, P = 0.018 χ2 = 0.47, d.f. = 2, P = 0.787


55.0 77.5 25.0 37.5 35.0 72.5

48.7 74.4 2.6 15.4 17.9 41.0

38.2 61.8 7.3 16.4 21.8 49.1

χ2 = 2.76, d.f. = 2, P = 0.251 χ2 = 3.18, d.f. = 2, P = 0.203 P = 0.005 (Fisher’s exact test) χ2 = 7.50, d.f. = 2 P = 0.023 χ2 = 3.49, d.f. = 2 P = 0.175 χ2 = 8.67, d.f. = 2, P = 0.013

Allied healthcare professionals Community nursing Palliative nursing Veterans Affairs nursing Social worker Counselling services Physiotherapy Occupational therapy Speech therapist Dietician/nutritionist Acupuncturist Chiropractor Naturopath Herbalist Osteopath

95.0 60.0 35.0 70.0 60.0 70.7 55.0 50.0 65.0 65.0 65.0 62.5 60.0 52.5

92.3 53.8 0.0 66.7 56.4 61.5 43.6 30.8 51.3 46.2 59.0 46.2 41.0 38.5

89.1 56.4 18.2 65.6 58.2 58.2 41.8 34.5 50.9 52.7 52.7 52.7 47.3 34.5

P = 0.624 (Fisher’s exact test) χ2 = 0.31, d.f. = 2, P = 0.857 χ2 = 16.45, d.f. = 2, P < 0.001 χ2 = 0.22, d.f. = 2, P = 0.894 χ2 = 0.10, d.f. = 2, P = 0.949 χ2 = 1.41, d.f. = 2, P = 0.493 χ2 = 1.77, d.f. = 2, P = 0.411 χ2 = 3.58, d.f. = 2, P = 0.166 χ2 = 2.20, d.f. = 2, P = 0.332 χ2 = 2.94, d.f. = 2, P = 0.230 χ2 = 1.44, d.f. = 2, P = 0.485 χ2 = 2.16, d.f. = 2, P = 0.340 χ2 = 2.99, d.f. = 2, P = 0.244 χ2 = 3.23, d.f. = 2, P = 0.198

* Chi-squared test or Fisher’s exact test where expected cell counts were less than five.

professionals, social workers were significantly more likely (χ2 = 4.7, d.f. = 1, P = 0.030) to be known by women (88%) than men (75%). Older patients were more likely to know about home help (χ2 = 7.6, d.f. = 3, P = 0.055), with 83% of those over 70 compared to 58% of those under 50 indicating that they knew of this service. Knowledge of the mobile library was dependant upon both age and marital status: very few (17%) of the younger subjects (those aged under 50 years) knew of its existence (χ2 = 9.0, d.f. = 3,

P = 0.029); and those who were unmarried were much less likely to know than married patients, i.e. 28% compared with 45% (χ2 = 4.1, d.f. = 1, P = 0.043). Education was a significant factor in whether patients knew of the palliative nursing service, with 77% of those with a higher degree in contrast to only 44% of those with less than secondary education aware of its existence (χ2 = 8.9, d.f. = 3, P = 0.031), and the ACT Hospice, where 65% and 28%, respectively, indicated that they knew of this service (χ2 = 11.1, d.f. = 3, P = 0.011).


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The occupational category showed an inverse trend, with a significant difference (χ2 = 11.1, d.f. = 4, P = 0.026) in knowledge of the Veterans Affairs nursing service: 53% of clerical workers, salesmen and labourers, but only 15% of professional patients knew of this service. Australian-born patients were significantly more likely to know of Veterans Affairs nursing than those not born in the country, i.e. 40% compared with 17% (χ2 = 9.2, d.f. = 1, P = 0.002). They were also more likely to know of the ACAT, i.e. 32% compared with 17% (χ2 = 4.0, d.f. = 1, P = 0.045), and disabled parking vehicle registration stickers, i.e. 82% compared with 66% (χ2 = 5.4, d.f. = 1, P = 0.021). Clinical factors were not major predictors of knowledge of community services, but the source of the selection of patients for the study did indicate some important differences. More patients from Medical Oncology (91%) and Inpatients (95%) were aware of community nursing than those recruited through Radiation Oncology (78%); the difference was significant (χ2 = 6.8, d.f. = 2, P = 0.033). Patients from Medical Oncology were also more likely than those from Radiation Oncology to know of naturopaths, i.e. 78% compared with 54% (χ2 = 9.5, d.f. = 2, P = 0.008), and herbalists, i.e. 79% compared with 57% (χ2 = 8.2, d.f. = 2, P = 0.017). Social workers were significantly more likely (χ2 = 10.4, d.f. = 2, P = 0.005) to be known by those patients in a chronic phase of their illness course. Caregivers Employment status was the most important factor associated with caregiver knowledge. Retired caregivers

were much more likely to know of a range of instrumental support services, including community transport, home help, meals on wheels, the mobile rehabilitation unit and the mobile library, as well as services more directly related to palliative care, namely personal care and the home linen services (Table 6). The retired caregivers were also markedly more knowledgeable about the ACAT, nursing homes and the Veterans Affairs nursing service; each of these also showed agerelated trends. Bi-variate analysis confirmed caregiver age to be a predictor of knowledge home help (χ2 = 4.3, d.f. = 1, P = 0.056). Male caregivers were significantly more likely to know of both the wig library (χ2 = 7.4, d.f. = 1, P = 0.007) and the Look Good Feel Better programme (χ2 = 12.4, d.f. = 1, P < 0.001). These programmes, which featured a special response to women’s needs, were significantly less likely to be recognised by those caregivers who had stopped work to care (Table 6). Caregivers from the non-metropolitan area were significantly less likely to know of the ACT Hospice (χ2 = 13.3, d.f. = 1, P < 0.001). Sources of information Medical practitioners were not identified as key sources of information about health and community services for many patients or their family caregivers, with the exception of general practitioners for family caregivers (37%) (Table 7). Large numbers relied upon the other health professionals, and over time, the number who identified this source as important increased from 40%

Table 7 Sources of information about health and community services compared over time* Patients

Caregivers

Source

Week 1 (%) (n = 163)

Week 12† (%) (n = 122)

Kappa statistic (weeks 1 and 12)

McNemar’s test‡ exact P-value

Week 1 (%) (n = 136)

Week 12† (%) (n = 92)

Kappa statistic (weeks 1 and 12)

McNemar’s test‡ exact P-value

Formal Specialist General practitioner Other health professionals

19.6 25.8 39.9

20.5 26.2 49.2

0.41 0.37 0.59

1.000 0.711 0.043

19.9 36.8 33.1

22.8 42.4 48.9

0.32 0.41 0.52

1.000 0.557 0.052

Informal Family/friends Commercial Educational Other Don’t remember

38.0 44.2 19.6 6.1 20.5

42.6 49.2 27.0 5.7 17.2

0.35 0.28 0.27 0.39 0.62

1.000 0.880 0.296 1.000 0.424

41.9 45.6 27.2 5.1 12.5

38.0 38.0 22.8 92.2 14.1

0.37 0.48 0.36 0.31 0.09

0.572 0.023 0.523 0.625 0.332

* More than one response could be made. † Subjects who also answered questionnaire at week 1. ‡ McNemar’s test of significance.

498



Table 8 Percentage of patients who knew and used local support services at baseline: (95% CI) 95% confidence interval Patients who knew (n = 163)

Patients who used (n = 163)*

Australian supportive care programme

Percentage

95% CI

Percentage

95% CI

Instrumental support services Home linen service Community transport Disabled parking* Mobile rehabilitation unit Home help Meals on wheels Personal care Respite care Child care

12.3 65.6 76.1 16.6 71.2 84.0 18.4 55.2 58.9

8.1–18.2 58.1–72.3 69.0 – 82.0 11.6 – 23.0 63.8 –77.6 77.6 – 88.9 13.2 – 25.0 47.5 – 62.6 51.2 – 66.1

0.6 9.8 16.6 1.8 7.4 4.9 0.6 0.6 1.2

0.1 – 3.4 6.1 –15.3 11.6 –23.0 0.6 – 5.3 4.3 – 12.4 2.5 – 9.4 0.1– 3.4 0.1– 3.4 0.3 – 4.4


69.7 58.3 45.4 42.3 20.2 39.9 49.1

53.1 – 68.0 50.6 – 65.6 38.0 – 53.1 35.0 – 50.0 14.8 – 27.1 32.7 – 47.5 41.5 – 56.7

6.1 3.7 3.1 8.6 3.7 3.7 3.1

3.4 –10.9 1.7 – 7.8 1.3 –7.0 5.2 –13.9 1.7 –7.8 1.7 – 7.8 3.1 – 7.0


54.0 81.6 13.5 26.4 24.5 72.4

46.3 – 61.4 75.0 – 86.8 9.1 –19.6 20.2 – 33.6 18.6 – 31.7 65.1–78.7

3.7 7.4 0.6 1.2 1.2 0.6

1.7 – 7.8 4.3 –12.4 0.1 – 3.4 0.3 – 4.4 0.3 – 4.4 0.1 – 3.4

Allied healthcare professionals Community nursing service Palliative nursing service Veterans Affairs nursing Social worker Counselling service Physiotherapist Occupational therapist Speech therapist Dietician/nutritionist Acupuncturist Herbalist Chiropractor Naturopath Osteopath

86.5 60.7 31.9 82.2 74.8 77.3 58.3 47.2 68.1 74.2 69.9 76.7 68.1 55.2

80.4 – 91.0 53.1– 68.0 25.2 – 39.4 75.6 – 87.3 68.0 – 81.0 70.3 – 83.0 50.6 – 65.6 39.7 – 54.9 60.6 – 74.8 67.0 – 80.3 62.5 –76.4 69.6 – 82.5 60.6 –74.8 47.5 – 62.6

47.9 12.3 3.1 19.0 4.3 14.1 2.5 0.6 10.4 6.1 6.1 6.7 6.1 1.8

40.3 – 55.5 8.1 –18.2 1.3 –7.0 13.7 – 25.7 2.1– 8.6 9.6 –20.3 0.9 – 6.1 0.1 –3.4 6.6 –16.1 3.4 –11.0 3.4 –11.0 3.8 –11.7 3.4 – 10.9 0.6 – 5.3

* Use of disabled parking was the only service that recorded significant change over time (P < 0.05).

at week 1 to 49% at week 12 amongst patients and from 33% to 49% amongst their caregivers (Table 7). Information about most community services mainly came from informal sources: from family and friends for 38% of patients and 42% of caregivers, and from commercial sources for similar proportions. Few patients (20%) drew upon educational material, but higher numbers of caregivers did so (27%). One-fifth of patients could not remember from where they had obtained information about the services of which they were aware.

Patient use of community services At baseline and week 12, the present authors sought to obtain an overall view of patient use of the services. An index matching the prior question of knowledge asked patients at weeks 1 and 12 whether they had used any of the services. The results showed that overall usage of local support services was low (Table 8). Allied healthcare professionals were the most frequently used. Of these, almost half the patients (48%) with advanced cancer had used community nursing, but only 12% had used the


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palliative nursing service at baseline. Given the ratio of social workers/counsellors to medical and nursing staff, their usage by patients was high; almost one-quarter had used one of these services. Fourteen per cent of patients had seen a physiotherapist and 10% had consulted a dietician/nutritionist. While the majority of patients knew of the CAMs, this was not reflected in their usage level, with around 6% for each of the key services being used. Usage of services amongst the supportive care institutions was low, and community programmes were used by only around 4% of the patient population, although higher numbers had used the wig library. Despite the high proportion of elderly people in the present study, only 5% had used the well-known meals on wheels services and 7% the home help. Only 10% had used community transport in the ACT and surrounding districts. Most patients did not report an increase in use of services over time. The only service to record a significant difference over time (P < 0.05) was disabled parking, which thereby enables patients close access to the outpatient clinic. It is likely that fatigue or a general reduction in performance status would have encouraged the use of this entitlement. Research undertaken in the same Australian hospital used in the present study has shown that 60% of patients with cancer were receiving some form of active medical treatment at the time of their death (Middlewood et al. 2001). Some services, in particular allied health professionals, social workers and physiotherapists, indicated a small trend towards decreased use, while nursing services showed little change.

Discussion The socio-demographic profile used by the present authors, which is characteristic of many cancer clinics, also sought to characterise the caregiver more fully, including the secondary supports which underpin their role. Just over one-third of the patients in this study had died within 6 months of enrolment, and another third lived for between 2 and 5 years. The authors found that caregivers were part of the healthcare triad in the advanced cancer setting. Most attended some medical consultations and 52% did so often. Furthermore, 30% had stopped work to care and many spent long hours providing assistance to the patient. While quite a number of patients and their caregivers had not been born in Australia (28%), the English language skills of the 15% who were from a non-English-speaking background were good. This is the first study to measure both patients’ and their caregivers’ knowledge of the range of community and health services available in an Australian city and its rural surroundings. For those with advanced cancer, 500

the knowledge of local health and community services held by the family unit was very high. Key services were well recognised. Caregivers’ knowledge across all 36 items was lower than that of patients. The present analysis identified important differences in awareness between the metropolitan patient group and the non-metropolitan one. They ranged across support services, community quality of life programmes, significant supportive care institutions including the ACT Hospice, and an array of allied healthcare professionals. A number of the services not recognised by respondents were specific to the city of Canberra, which is a separate legal and fiscal entity to the surrounding rural areas within New South Wales (NSW). However, there is an expectation that professionals with The Canberra Hospital will provide an inclusive service for patients travelling from rural NSW, and they are expected to ensure that referrals are made to appropriate rural, community-based services in NSW. That caregivers from non-metropolitan areas knew of so few services is a problem. In particular, the finding that those who were retired were more likely to be aware of an important range of health and community services emphasises the vulnerability of the working family caregiver. This group may well have multiple needs and competing role claims, and they need further attention, including more research and more effective targeting of existing services. The socio-demographic differences in knowledge of community services could be a marker of appropriate knowledge transfer, particularly in the case of age, but they might also be highlighting anomalies; for example, country of birth was significantly associated with knowledge of the ACAT and of disabled parking. The finding that education was a significant factor in knowledge of the palliative nursing service and the ACT Hospice reflects similar findings from the UK, where those with higher levels of education were more aware of dying and were more likely to use hospice services (Addington-Hall & McCarthy 1995a, b, Seale et al. 1997). While some gender differences, such as knowledge of the wig library, are to be expected, and others, such as knowledge of support groups, have been noted in the US literature (Taylor et al. 1986), there is no explanation as to why more women knew of the Cancer Society. The highest level of agreement between patient and caregiver knowledge occurred amongst all those services provided on an outreach basis from the hospital. This indicates an efficient identification of patientcommunity need when filtered through hospital services. The socio-demographic profile of the present study uncovered an important subgroup of young, unmarried caregivers who demonstrated low recognition of available services. A larger sample could well identify further



important characteristics which could assist programme planning through more thorough needs evaluation underpinned by normative socio-demographic and socio-economic data. Needs research has posed a problem in defining need as ‘the perception of a discrepancy between the resources available and those required’ (Hinds 1985). However, a baseline prevalence figure of supportive care service provision has not yet been identified. While a series of investigations throughout the 1990s in Australia confirmed high levels of unmet need (Liang et al. 1990, Newell et al. 1998, Sanson-Fisher et al. 2000), the research question – ‘How wide is the gap between need and service provision?’ – has not been answered. Underlying the present report is an assumption that need is a concept comprising both awareness and availability of resources. However, the authors are unable to indicate the direction of causality. Do patients and caregivers within the ACT have high levels of awareness because of high service provision or because of sociodemographic factors, or because of effective communication between the health teams? Some of the present results indicate that, where there is a high prevalence of an available service (e.g. nursing and social work), response to need appeared strong. Caregivers undertaking more than 100 hours of caring, and those caregivers who were either retired/on pensions or who had stopped work to care were more aware of community nursing. Sources of information highlighted the important role of the multidisciplinary health team, particularly the physiotherapist, social worker, dietician and alternative therapists. In this cancer unit, patients have been able to draw upon the resources of community and oncology nurse specialists, together with palliative and Veterans Affairs nurses, a designated pharmacist and specialist oncology social workers. Amongst the health professionals, the significant recognition levels of social workers were indicative of their long-standing integration into the hospital-based cancer services in Canberra. The present authors’ index of service usage has to be viewed with reservations. While their study incorporated a patient-held diary as an evaluation tool, preliminary analysis found high usage with regard to medical services, but many gaps for allied health practitioners. What the authors were able to identify in this report was that patient perception of their usage in a simple index that provided a swift and cheap, albeit crude, measure. The patient medical record and data linkage to governmentheld health data is a complex and expensive analysis that may be able to be produced in due course. Overall, there were low levels of knowledge among patients and their caregivers for many services relevant

to the oncology patient treated with palliative intent. The performance status of the present sample, which at baseline was quite high, may have been responsible for the low numbers who knew of the palliative care nursing team, who are generally introduced as appropriate by the oncology health team. Therefore, the knowledge levels may be a reflection of the low need of the survey participants for many of the services at the time of responding. However, it may also represent an inadequate transfer of information to an appropriate client group. A longer period of observation, possibly 2– 3 years with a number of waves of data collection, could clarify this question. Health and community services comprise the glue that now enables the seriously ill cancer patient to spend most of their time at home. Lewis & Leeder (2001) emphasised that, when caring becomes a primary task of health services, it binds the sick and disabled to their community in the face of their alienation from everyday life, and forestalls a sense of abandonment. The patient with advanced cancer now lives with their disease for longer periods of time because of improved medical treatments. Patients and their families need timely assistance in planning their palliative care. The complexity of the current health system creates the possibility that knowledge of relevant services is not available to the seriously ill patient and their family caregivers at the time of most need. Timely referral to palliative care remains a problem in many health systems. The recent predictions by the World Health Organization (2003) that a quantum leap in cancer deaths is predicted worldwide in the next 15 years signals the need for further research on the nature of communication between hospital-based cancer services and the communitybased care team. Three strategies could help to address this problem. First, research using a more rigorous case ascertainment approach, using population frames and epidemiological methods to identify higher risk groups, would help social workers to identify families in need and target their services more effectively. Secondly, a consideration of successful models of preventive public health strategies for translation into the palliative care setting – ‘health promoting palliative care’ – may improve timely care planning (Kellehear 1999). Health services research is in its infancy in the ambulatory cancer care setting. Defining the problem together with large-scale population research commensurate with the nature of the service challenge (where one-third of deaths are related to cancer) offers investigators a major focus for the next 10–20 years. Finally, the issue of resources for palliative care services has to continue to take centre stage in any recommendation for advanced cancer-care patients.


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Acknowledgements This study was undertaken as part of the Canberra Cancer Quality of Life Project, funded by the Australian Commonwealth Department of Health and Community Services. The first author (C.M.B.) received additional funding from The Canberra Hospital’s Medical Practitioners’ Fund. The authors wish to thank the patients and their caregivers for their participation in this project.

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