Patient Education and Counseling 53 (2004) 141–146

The use and acceptability of a one-on-one peer support program forAustralian women with early breast cancer

Nicole Rankina,∗, Philippa Williamsb, Cindy Davisc, Afaf Girgisd

a National Breast Cancer Centre, Locked Bag 16, Camperdown, Sydney, NSW 1450, Australiab Centre for Family Health and Midwifery, University of Technology, P.O. Box 123, Broadway, Sydney, NSW 2007, Australia

c School of Social Work, University of Tennessee, Nashville Campus, 1720 West End Ave, Suite 230, Nashville, TN 37203, USAd Cancer Education Research Program, University of Newcastle, Locked Bag 10, Wallsend, Newcastle, NSW 2287, Australia

Received 3 December 2002; accepted 18 January 2003

Abstract

A population-based survey of Australian women diagnosed with early breast cancer examined the uptake and acceptability of a peersupport program, the Breast Cancer Support Service (BCSS). We examined the characteristics and perceptions of women who did and didnot use the BCSS. More than one-third (36%) had used the BCSS, most of whom first heard of it from hospital staff (36%) or clinicians(16%). Women perceived meeting someone else with similar experiences (53%) as the most beneficial aspect of the program and 89% saidthey would definitely recommend it to others. The findings suggest that uptake is related to provision of information about the BCSS. Peersupport programs appear to be acceptable to both women who do and do not use the BCSS. To ensure that women can choose whetherto participate in peer support programs requires strategies that encourage health professionals to provide comprehensive supportive careinformation.© 2003 Elsevier Ireland Ltd. All rights reserved.

Keywords:Breast cancer; Peer support; Australia

1. Introduction

Social support plays an important role in a woman’s ad-justment to her diagnosis and treatment for breast cancer[1–3]. In Australia, the first evidence-based guidelines forsupportive care were released in 2000, entitledPsychoso-cial clinical practice guidelines: providing information,counselling and support to women with breast cancer[4].The guidelines went through an extensive development pro-cess, including the participation of consumers[5]. Specificrecommendations include that all women receive adequateemotional and social support from the treatment team, thatsupport provided by family and friends should be con-sidered to ensure it is adequate, and a woman should beprovided with information about peer support programs.

Peer support is founded on the belief that newly-diagnosedindividuals who have contact with a former cancer patientcan benefit from meeting someone who has had a similarexperience[6–8]. The earliest and best known example

∗ Corresponding author. Tel.:+61-2-9036-3030; fax:+61-2-9036-3077.E-mail addresses:nicoler@nbcc.org.au (N. Rankin),pip.shan@unsw.edu.au (P. Williams), cynsteve@hotmail.com (C. Davis),afaf.girgis@newcastle.edu.au (A. Girgis).

is Reach to Recovery, established in the United States in1952 [9,10]. Similar programs exist throughout the world[11–13], including the Breast Cancer Support Service(BCSS) in Australia[14,15]. The BCSS offers practical andemotional support through one-on-one visits with volunteerswho have previously experienced breast cancer[14]. Pro-gram administration is the responsibility of each state andterritory-based cancer council and varies somewhat acrossthe country. However, all volunteers receive initial trainingand attend regular in-service courses usually run by localcoordinators. The BCSS relies on volunteers to undertakeall visits to newly-diagnosed women[16], although in onestate (Victoria), the program is administered so that womenare first visited by a breast cancer nurse and meeting with avolunteer is optional[17]. Women are most often providedwith information about the BCSS by a clinician or healthprofessional, who in turn usually contacts the service toarrange a volunteer visit[18]. Alternatively, women mayhear about the service through family, friends, advertisingor telephone-based cancer information services[18].

Despite the positive views among women who use peersupport programs, there have been no randomised controlledtrials to assess the acceptability, benefits or effectiveness of

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142 N. Rankin et al. / Patient Education and Counseling 53 (2004) 141–146

this form of psychosocial support[18]. One criticism of theexisting research is that most studies only include womenwho participate in peer support programs[19]. Few stud-ies describe the uptake of programs in the population or theacceptability of peer support programs. Prior to conductingany intervention trials, descriptive studies are needed to es-tablish the accessibility of peer support programs to differentgroups within the community and to assess their acceptabil-ity to women.

There are four main studies that have examinedone-on-one peer support programs for women with breastcancer. In 1985, an evaluation of the United States’ (US)Reach to Recovery program in New York state found that73% of a randomly selected sample had met a volunteer[20].However, this study excluded women who had breast con-serving surgery. Comparative data for the remaining womenwho did not meet a volunteer are not provided, although itis reported that 19% of women said they had no opportu-nity to do so, while 8% said they preferred not to meet avolunteer. At the time of the study, a woman’s surgeon hadto give permission for a volunteer visit, so the authors didnot report any data about how women first heard about theprogram. Women reported that they perceived the greatestbenefit of the program had to be meeting a survivor (75%).

The US Reach to Recovery program has also been ex-amined in regards to potential benefit on quality of life andparticipant satisfaction[21]. A case–control methodologywas used, comparing program participants (n = 183) andnon-participants (n = 192). Comparisons of the two groups’characteristics showed that women who did not participatewere more highly educated and more likely to have hadbreast conserving surgery than program participants. Mostwomen perceived the program to be satisfactory (76%) andwere significantly more satisfied if they felt comfortable withthe volunteer, the volunteer was attuned to their needs andif they first met a volunteer shortly after diagnosis.

More recently, Geiger et al.[22] conducted an evalu-ation of an information and support program in the US,which incorporated a breast cancer ‘buddy’, or peer, fornewly-diagnosed women. The program was provided at twosites and was compared to non-program sites. No resultswere reported about the proportion of women who met witha buddy, if women in the non-program group had used otherforms of peer support, nor characteristics or perceptions ofthose who did and did not meet with a buddy.

In Australia, Dunn et al. conducted a two-phase evalu-ation of one state-based BCSS in Australia (administeredby the Queensland Cancer Fund)[14] using a conveniencesample of women who had been visited by a BCSS volun-teer. Regardless of whether they had a mastectomy (71%)or breast conserving surgery (29%), the majority of the 223second phase participants perceived the volunteer visit to bevery helpful and reported feeling less anxious as a result.

It is evident that these studies do not provide compre-hensive and representative data from population-based sur-veys about the uptake of peer support programs, nor have

they adequately identified whether programs are acceptableto women. Given the paucity of data about one-on-one peersupport programs, there is a clear need to further investigatethis aspect of support for women with breast cancer[23].

The aims of this study were to examine the uptake of theBCSS in Australia, using a representative population-basedsample of women with early breast cancer and explore gen-eral acceptability and perceived benefits of this peer supportprogram for women who did and did not use the BCSS forsupport.

2. Method

The study methodology has been previously reported, in-cluding a description of the psychometric testing of the sur-vey instrument[24,25].

2.1. Sample

In Australia, population-based cancer registries recorddata about all women diagnosed with breast cancer. Can-cer registries were asked to identify all women diagnosedwith early breast cancer between March and August 1997and to randomly select 25% of these women for the study(n = 1184), following the approval of the relevant ResearchEthics Committee in each state and territory. One state can-cer registry (Tasmania) did not participate in the study, asethics approval was not granted.

Each woman’s registering doctor (n = 405) was con-tacted by the cancer registries and asked to indicate whetherwomen in the sample were eligible to participate. Twentydoctors responsible for 104 women refused to agree to theparticipation of any of their patients. A further 212 womenwere classified as ineligible by their doctors because theywere too emotionally disturbed (n = 42), too ill (n = 18),had poor English (n = 25), had not been diagnosed withearly breast cancer (n = 37), had died (n = 7) or for anunstated reason. Of the 868 women who were eligible toparticipate, a randomly selected sample of 832 women wasinvited to take part in the study. Women were sent a letterof invitation and non-respondents were followed up by tele-phone; 544 (76%) of the 716 women who could be contactedcompleted a full interview.

2.2. Survey instrument

Participating women completed the survey by answeringa telephone interview between 6 and 12 months after theirdiagnosis. The interview had been previously pilot tested;test–retest reliability was assessed on a sub sample of itemswith agreement of 85% or higher in all items included. Thesurvey instrument consisted of 87 items about women’s per-ceptions of their care, covering topics such as informationprovision, support received during diagnosis and treatmentand demographic items and took approximately 30–45 min

N. Rankin et al. / Patient Education and Counseling 53 (2004) 141–146 143

Table 1Specific survey items about the BCSS

Item 1: Which of the following groups or people did you use for support during the period since you were diagnosed with breast cancer?

If a woman responded‘yes’ to using the BCSS, the following items were read aloud:Item 2: Earlier you said you had used the Breast Cancer Support Service. Could you please tell me how you firstheard about this service?Item 3: When did you have a visit or phone call from a Breast Cancer Support Service volunteer?Item 4: What was the most beneficial part of the Breast Cancer Support Service for you?Item 5: To what extent would you recommend the Breast Cancer Support Service to other women diagnosed with breast cancer?

If a woman responded‘no’ to using the BCSS, the following item was read aloud:Item 6: Earlier you said that you had NOT used the Breast Cancer Support Service. Just briefly, the service offers practical and emotional

support on a one-to-one basis, using volunteers who have previously had breast cancer. What was your main reason for not using this service?

to complete. Specific items about BCSS (listed inTable 1)were included in the ‘support’ section of the survey; supportwas defined as “someone to talk with about the problems ordifficulties you were experiencing or about personal issues,such as emotional or relationship difficulties, how you andyour family were coping and so on”.

2.3. Data entry and analysis

The survey format was entered into a ‘Computer AssistedTelephone Information’ (CATI) system, which allows theinterviewer to administer the survey by telephone while si-multaneously typing participants’ responses directly into thecomputerised format. This system avoids the step of data en-try at a later time, increasing reliability and reducing errors.

Frequencies were calculated for each question andchi-square analyses undertaken to compare the responses ofwomen living in urban with those living in rural locations,women under the age of 50 with those 50 and over andthose treated in public with those treated in private facil-ities. Differences were considered to be significant whenP < 0.01, because of multiple comparisons.

3. Results

3.1. Sample characteristics

The mean age of participants was 58.5 years (S.D. 12.2years), with a range of 26–94 years.Table 2shows that themajority of the sample was: married; resided in urban areas;had private health insurance at time of surgery; and had ahigh school equivalency level of education. The majority ofwomen (83%) stayed in hospital for more than 48 h at thetime of surgical treatment (mean= 5.75 days, S.D. = 3.45,median 5 days). The study sample data were compared withdata from the state cancer registries, other surveys and alarge scale survey of treatment of women with breast cancer[26]. No consistent bias in the sample was apparent.

3.2. Women’s uptake of the BCSS and how they firstheard of it

A total of 36% of women indicated that they hadused the BCSS for support during the period since theywere diagnosed with breast cancer. The BCSS was ratedfifth highest from the groups or people used for sup-port during the period since diagnosis (seeTable 3). Thenumber of women who reported using the BCSS forsupport varied considerably across Australian states andterritories (seeTable 4). Chi-square analyses comparingwhether women lived in a rural or urban area within eachstate and if they used the BCSS revealed no significantdifferences.

Of the 36% of women who used the BCSS, most reportedhaving heard about the BCSS from a health professional,that is, a hospital staff member (36%) or a clinician (16%).

Table 2Socio-demographic characteristic of study participants

Characteristic Sample (%)

AgeLess than 50 years 2450 years and over 76

ResidenceUrban 63Rural 37

Patient statusPublic patient—surgery 43Private patient—surgery 57

EducationTertiary 23All other 77

Marital statusMarried/de facto 72Separated/divorced/widowed/never married 28

Treatment—surgeryBreast conserving 60Mastectomy 37

Treatments—additionalRadiotherapy 53Chemotherapy 31Endocrine therapy (tamoxifen) 59

144 N. Rankin et al. / Patient Education and Counseling 53 (2004) 141–146

Table 3Sources of support utilised by women

Source Rank % n

Your surgeon 1 58 313Your general practitioner 2 53 289Some other group or person 2 53 289Your oncologist 4 37 201The Breast Cancer Support Service 5 36 196A breast care nurse 6 24 129A general nurse 7 22 117Community based support groups 8 13 73The Cancer Information Service 9 12 67A counsellor, psychologist or psychiatrist 10 11 60A naturopath or natural therapist 11 8 45A social worker 12 7 36A rural community nurse 13 4 24

Women were first contacted by a volunteer: after surgery(82%), before surgery (21%) or at diagnosis (6%). (Propor-tions equal more than 100% as some women had more thanone visit.)

3.3. What reasons did women give for not using theBCSS?

Of the 64% of women who did not use the BCSS, themajority reported they had enough support from family orfriends (43%); did not know about the service (23%); did

Table 4Proportion of women surveyed in each state who used the BCSS, and chi-square comparisons of women who had breast conserving surgery vs. mastectomyby state of residence

State Survey participants ineach state

Women who usedthe BCSS

Breast conserving surgeryvs. mastectomy

% n % n

New South Wales/Australian Capital Territory 38 204 39 80 χ2 = 2.3, P = 0.13; d.f . = 1Victoria 29 156 21 32 χ2 = 7.9, P = 0.005; d.f . = 1South Australia 12 65 28 18 χ2 = 1.5, P = 0.23; d.f . = 1Queensland 11 61 51 31 χ2 = 2.6, P = 0.11; d.f . = 1Western Australia 10 52 58 30 χ2 = 9.8, P = 0.002; d.f . = 1Northern Territory 1 6 83 5 χ2 = 0.2, P = 1.00; d.f . = 1a

Total 101b 544 36 196 χ2 = 21.2, P < 0.001; d.f . = 1

a Fisher’s exact test used as some cell sizes totalled less than five.b Total equals 101% due to rounding.

Table 5Cross-tabulation and chi-square comparison of women who did and did not access the BCSS and socio-demographic and treatment variables

Demographic characteristic Proportion of women who used BCSS for support (%) Chi-square analyses

Age 42 (younger) 34 (older) χ2 = 2.25, P = 0.13; d.f . = 1Residence 35 (rural) 37 (urban) χ2 = 0.21, P = 0.64; d.f . = 1Patient status 34 (public) 38 (private) χ2 = 0.70, P = 0.40; d.f . = 1Education 38 (tertiary) 35 (non-tertiary) χ2 = 0.33, P = 0.57; d.f . = 1Martial status 37 (married/de facto) 34 (other)a χ2 = 0.32, P = 0.57; d.f . = 1Discharge 24 (<48 h) 38 (≥48 h) χ2 = 6.23, P < 0.01; d.f . = 1Surgical type 29 (conserving) 49 (mastectomy) χ2 = 21.2, P < 0.001; d.f . = 1Radiotherapy 34 (yes) 39 (no) χ2 = 1.36, P = 0.24; d.f . = 1Chemotherapy 41 (yes) 34 (no) χ2 = 2.45, P = 0.12; d.f . = 1Hormone therapy 36 (yes) 37 (no) χ2 = 0.07, P = 0.80; d.f . = 1

a Other indicates separated, divorced, widowed or never married.

not think it would be useful (20%); tried but could not gethelp (4%); other reasons (8%) or could not say (2%).

3.4. Were there any differences between the women whodid or did not use the BCSS?

There were no significant differences in use of the BCSSbetween younger and older women, rural and urban dwellers,public and private status at surgery, tertiary or non-tertiaryeducated women or women who were married or living witha partner and those who were not (seeTable 5). Separateanalyses for these variables in each state and territory re-vealed no variations. Type of surgical treatment was foundto be significantly associated with whether women had usedthe BCSS for support. Women who had a mastectomy weresignificantly more likely to have used the BCSS than womenwho had breast conserving surgery (49% versus 29%,χ2 =21.1, d.f . = 1, P < 0.01). However, when examining re-sults separately for each state and territory, significant differ-ences were detected only in the states of Victoria and West-ern Australia (seeTable 4). Women who were dischargedwithin 48 h of surgery were significantly less likely to havemet a BCSS volunteer than women who remained in hos-pital for routine admission times (24% versus 38%,χ2 =6.23, d.f . = 1, P < 0.01). Chi-square analyses revealed nosignificant differences in using the BCSS and undergoingother types of treatment (radiotherapy, chemotherapy, hor-mone therapy) (seeTable 5).

N. Rankin et al. / Patient Education and Counseling 53 (2004) 141–146 145

3.5. What were women’s perceptions of the BCSS?

Women who used the service reported the following ben-efits: talking to a woman with similar experiences (53%);emotional support (15%); practical advice (12%); and infor-mation (10%). Eight percent reported it was not beneficialand 2% could not say. A total of 85% of women who usedthe service said that they would definitely recommend theBCSS to other women, 10% would probably recommend it,3% would probably not recommend it, 1% would definitelynot recommend it, while 2% could not say.

4. Discussion

This study examined the uptake and acceptability ofthe BCSS, a one-on-one peer support program, using apopulation-based sample, and to the best of our knowl-edge, is the first study to do so. The findings reveal that theBCSS is one of the most commonly used support servicesfor women with breast cancer, ranked fifth highest froma list of 13 health professionals or services. These signif-icant findings provide the necessary baseline data for anyplanned intervention trials to test the potential benefits andeffectiveness of one-on-one peer support programs.

The findings also suggest that uptake of the service islikely to be related to how informed women are about theBCSS, rather than being attributed to any difference in thedemographic characteristics of women with breast cancer.There were no significant differences in use of the BCSSbetween women of different ages, education, marital status,rural and urban dwellers, or being publicly or privately in-sured at time of surgery. Although there were some differ-ences in program use and following mastectomy or breastconserving surgery, these differences were significant in onlytwo states, one of which (Victoria) involves an initial visitfrom a breast cancer nurse. Some women may have beenunaware that the nurse was part of the service, and thereforeresponded that they did not use the service, as the volunteervisit is optional. Furthermore, women who were dischargedfrom hospital within 48 h were significantly less likely tomeet a volunteer. This suggests inadequate time for womento either receive information from a clinician or health pro-fessional or to contact the service and request a visit. If thegrowing trend of early discharge from hospital continues, itwill be necessary to ensure that information provision aboutsupportive care programs, including peer support, is welltimed and tailored to suit women’s individual needs.

The uptake of the program across Australian states andterritories was quite varied. More than half the survey par-ticipants living in Western Australia (58%) and Queensland(51%) used the BCSS for support compared, for example,with a smaller proportion of women living in South Aus-tralia (28%). Reasons for this variation in uptake requirefurther investigation and the strategies used by each stateand territory cancer council to actively promote and dis-

seminate information about the BCSS should be examined.This could reveal opportunities to better inform health pro-fessionals about the BCSS.

The findings suggest that there is general acceptanceamong Australian women with breast cancer for this peersupport program. There is a high level of acceptance amongwomen who used the BCSS for support, with nearly 9 outof 10 women saying they would recommend the serviceto other women diagnosed with breast cancer. Further, themajority of women reported that meeting another womanwho had experienced breast cancer was most beneficial.This is consistent with the findings of the overseas researchconcerned with one-on-one peer support programs[21],and with the underlying themes of peer support[8].

In the group who did not use the service (64%), the major-ity of women said they already had adequate support fromfamily or friends, while one fifth of this group indicatedthat they did not think the service would be useful. There islikely to always be a proportion of women who are not in-terested in this form of support, which raises considerationsfor any randomised trials. Other data suggest when womendiagnosed with early breast cancer in NSW who did not usethe service were told that a BCSS volunteer provided prac-tical and emotional support, more than half said they wouldhave liked to have met a volunteer[18].

These findings suggest that while peer support is not ofinterest to some women, they are not opposed to it as aform of support. Well designed intervention studies wouldassist in testing the effectiveness of peer support programs,given that the majority of women do perceive that there arebenefits of this type of support.

In review of these findings, it appears that informationabout the BCSS would be most appropriately provided towomen either before or immediately after surgery. This sug-gestion for the timely provision of information about theBCSS has been supported by a large proportion of surgeonsand other health professionals caring for women with breastcancer across NSW[18]. The NSW study found provisionof information about the BCSS was directly related to clini-cian breast cancer caseload. Surgeons working in NSW witha high breast cancer caseload (40 or more per year) weresignificantly more likely to tell women about the BCSS, aswere health professionals working in NSW public and pri-vate hospitals where more than 50 women per year receivedtreatment for breast cancer[18]. Strategies for improving in-formation provision should be planned by the cancer organi-sations responsible for administering the service and shouldconsider first targeting clinicians and health professionalswho treat smaller numbers of women with breast cancer toencourage consistent provision of information about sup-portive care services.

It is evident that a coordinated approach is lacking in theprovision of information about the BCSS to women diag-nosed with early breast cancer in Australia. Fourteen percentof the total sample had never heard of the BCSS, meaningthat more than 1000 Australian women diagnosed with early

146 N. Rankin et al. / Patient Education and Counseling 53 (2004) 141–146

breast cancer each year will not receive any informationabout the most widely implemented peer support programin the country. Ideally, women should be given informationwith adequate time to choose if and when they would like tomeet a volunteer. These findings should be used to influencepolicy and delivery of peer support programs, as managedby each state and territory cancer council. It will also as-sist in providing baseline data for any planned randomisedcontrolled trial to measure the effectiveness of peer support.

5. Practice implications

The results of this study should be considered for the de-velopment and delivery of the BCSS across all states andterritories of Australia. It is pertinent to inform cliniciansand other health professionals about the uptake and accept-ability of the BCSS to women with breast cancer. Givenits acceptability, the timely provision of information aboutthe BCSS by health professionals will help to ensure thatwomen with breast cancer can make informed choices aboutwhether to participate in such a program.

Acknowledgements

This research was part of a large national study on womenwith early breast cancer in Australia, and funding for thisresearch was provided by the National Breast Cancer Centrein Sydney, Australia. The authors would like to acknowl-edge the valuable contributions of Professor Bruce Arm-strong, University of Sydney, and Mr. Peter Malycha, RoyalAustralasian College of Surgeons, in the design and imple-mentation of this research. Requests for reprints should beaddressed to the National Breast Cancer Centre, Locked Bag16, Camperdown, NSW 1450, Australia.

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