Health and Cancer Screening in Warrnambool: a community perspective

Transcription

1 Health and Cancer Screening in Warrnambool: a community perspective

2 Introduction Early detection and treatment of cancer goes a long way to improving health outcomes for everyone. Because of this, the Victorian Government undertook research in 2012 to find out what would improve participation rates in cancer screening for cervical, breast and bowel cancer in our state. Part of this process was to talk to the residents of Warrnambool about their experiences of health services in the local community, as well as to find out what they thought about cancer screening. Focus groups in Warrnambool were asked to provide their thoughts on a range of topics, including: the characteristics of the area; local health services and health providers; preventative health strategies they use; awareness of bowel, breast and cervical cancers; what their attitudes to cancer screening were; about their screening experiences; general motivators and barriers to screening; and suggestions for local strategies to improve screening rates Kelly Drennan Associate Professor Dorota Gertig Research Fellow Medical Director Victorian Cervical Cytology Registry Victorian Cervical Cytology Registry kdrennan@vcs.org.au Phone: PO Box 161, Carlton South VIC 3053 This report is a joint publication produced with the assistance of: The Social Research Centre Victorian Cytology Service The McCaughey Centre: VicHealth Centre for the Promotion of Mental Health and Community Wellbeing, School of Population Health, University of Melbourne Acknowledgements: The Victorian Cytology Service would like to thank the Working Group which consisted of key representatives from relevant organisations and who provided guidance to the project. We thank all the participants in Warrnambool for generously helping us in this research. Funding for this project has been provided by the Victorian Department of Health. Research like this helps us improve health services not just in Warrnambool, but all over Victoria. The information gathered through this research will be used by local public health and wellbeing partners, health service providers and the Victorian Government to deliver services. It was fantastic that we got so much help from Warrnambool, and we would like to take this opportunity to thank everyone who participated. This document is for the people of Warrnambool, and provides a summary of what the people we spoke to told us. Disclaimer: The information in this brochure has been provided for feedback purposes for the community of Warrnambool, following qualitative research interviews and focus groups undertaken in Identities of interviewees and details of participation remain strictly confidential. The information and views expressed within this publication reflect those as reported in: Exploring Participation In Population Cancer Screening In Regional Victorian Communities: Report of Qualitative Research in Kyabram and Warrnambool, October 2012 and Community Profiling for Cancer Screening: A Focus on the Areas of Kyabram and Warrnambool, October

3 Where did we get our Information? FOCUS GROUPS: In Warrnambool, we ran seven focus groups with 52 people. Groups were formed based on gender, age, and whether or not they had received adequate cervical, breast or bowel cancer screening based on medical recommendations ( screened and under-screened groups). The mix of groups by age and gender were: The Warrnambool Community Warrnambool is on the south-western coast of Victoria, 263 kilometres from Melbourne. Major industries include retail, tourism, health, dairy, meat processing, education (including a university campus), clothing manufacture and construction. Warrnambool was described in interviews as a fast-growing regional centre with a tight-knit population that expands significantly during the summer period. Females aged 50-70, under-screened; Females aged 50-70, mix of screened and under-screened; Males aged 50-70, mix of screened and under-screened; Males aged 50-70, mix of screened and under-screened; Females aged 35-49, mix of screened and under-screened; Males aged 35-49, ineligible for screening but included in the study; and Females aged 25-34, mix of screened and under-screened. We also interviewed key informants, including health workers and leaders from the local community and sports groups. These people were chosen because of the roles they occupy and their in-depth knowledge of the community. STATISTICS: We combined our interview research with statistical information to develop this report. Statistics were taken from five major sources: the Australian Bureau of Statistics, Community Indicators Victoria, the Victorian Cytology Service, the Victorian Department of Early Education and Childhood Development, and the Victorian Population Health Survey. Statistics from various data pools are for either the City of Warrnambool specifically, or the larger region of Warrnambool Warrnambool is small in area and densely populated; with 281 people per square kilometre, considerably higher than the Victorian average. It had a population of 33,922 people in % of the population are between 20 and 59 years old, concentrated around those of working age. Warrnambool is a major service centre in the South-West region. Interviewees said Warrnambool had been conservative, but has become more diverse recently. There is a strong focus on leisure and tourism due to its location. Whale sighting and the Great Ocean Road are major tourist attractions in the area. 2 3

4 94% of Warrnambool residents speak English only at home, 88% were born in Australia and of those not born in Australia most were born in the United Kingdom, New Zealand, the Netherlands or Ireland. There is a significant Aboriginal population (1.3%), which is double the Victorian average. The current Sudanese population is estimated at about 100 people. Warrnambool was also described as having a low median income, with pockets of considerable deprivation. Youth unemployment was considered to be high, and it was thought that there were many struggling pensioners and people using the services of welfare organisations. The unemployment rate for the Warrnambool area was over 1% higher than the Victorian average in 2006, but has recently matched the state average and was 0.2% lower than average (at 5.2%) in Warrnambool s median household income is $150 per week lower than the Victorian average, but individual and family incomes approximate the state average. This is possibly attributed to a higher than average number of group households reflecting the university student population in the area. Non-school qualifications in the area are higher than the Victorian average, with are 70% at a Certificate, Advanced Diploma or Diploma level. The most common occupations within Warrnambool are professionals (17%), technician/trades (16%), labourers (14%) and sales workers (13%). The area has a high number of residents with Disability Support Pensions, DVA Pensions and Aged Pensions. Few residents are unemployed and receiving a Newstart Allowance, but 64% of those who do so remain on Newstart for more than one year. There is a strong focus on sport in the community, with football, netball, bowls, cricket and golf reported as the main community activities. Clubs and major events (such as the May Races and a Community Festival) bring people into town. Warrnambool residents report high satisfaction with their connection to their community. In the 2007 Community Indicators Victoria Survey all indicators of social support were high when compared with the rest of Victoria. Males reported 8% higher satisfaction, and females 6% higher satisfaction, with community connection compared with the Victorian average (71% overall). People living in Warrnambool also reported high perceptions of personal safety, felt supported by their family and friends (95%), were involved in their children s school (60%), attended community events (69%), volunteered their time (41%), and participated in citizen engagement activities (58%). According to the older men we spoke to, transport in and out of Warrnambool was good. Women aged 35-49, however, reported that public transport was poor, making it difficult to get to medical appointments without a car. Warrnambool residents reported lower levels of transport limitations than the majority of Victorians, though women living in Warrnambool were more likely to experience difficulties than men. The majority of households had one or two motor vehicles. Household composition and family structure in Warrnambool is similar to the Victorian average. Housing is slightly less expensive compared with the Victorian average, and Warrnambool has a high percentage of public housing. 4 5

5 Warrnambool Health The most common health concerns among people interviewed were chronic illnesses such as diabetes, cardiovascular and mental health problems. One medical key informant said sexual health was a big issue, especially among young people, with a recent high number of Chlamydia diagnoses. Several key informants said alcohol and illicit drug use were problems, with alcohol abuse possibly fuelled by the sports club culture. A couple of key informants said there has been little funding for community and preventative health, with funding channelled into chronic illnesses such as diabetes and heart disease. One medical key informant thought Warrnambool locals often delayed treating health problems due to a lack of education and pro-activeness. Physical exercise was reported to be low among the Aboriginal community, with a reduction in sporting options, such as football, for young Aboriginal people. According to the Sudanese key informant, it was difficult for the community to assimilate their own culture and beliefs into the mainstream health system due to language barriers. When compared with the rest of Victoria, Warrnambool residents are less likely to say their health is very good or excellent (particularly females), are more likely to drink at levels of long term risk, are more likely to be smokers, be obese (particularly males), not engage in adequate physical exercise, have higher incidence of diabetes and have extremely low levels of attendance at maternal and child health visits at the key stage of 3.5 years. People interviewed said Warrnambool was well serviced for education, with schools, TAFE and a university. Some people thought the medical facilities and services were good and provided good access to specialists, however some mentioned that there was a shortage of doctors. The City of Warrnambool has 165 types of funded health activities and 239 funded health services, seven pharmacies and eight general practice sites. Younger women rarely reported going to the doctor for check-ups and tests due to the cost. There have been a few initiatives and events aimed at boosting health and well-being engagement in recent years: Peter s Project, Rotary initiatives, Pink Day and immunisation outreach programs all mentioned in interviews. However, overall, it was reported people hadn t shown a great willingness to engage in health promotion, particularly men. In general, Warrnambool s medical and health needs were considered to be adequately serviced. Noted gaps in health service delivery reported included poor accessibility, long waiting times for doctor appointments, and delays in hospital procedures. Few doctors bulk-billed, so getting into those clinics was also considered difficult. One key informant said there had been a shortage of female doctors. Wait times to see a female doctor remained high according to women interviewed. Wait times were also long for specialists, which caused a number of people to travel for prompt treatment. People reported travelling for dermatology, IVF, free MRIs, and eye specialists. Another outcome of the doctor shortage was for people to avoid seeking help. According to Aboriginal respondents, community members had multiple stresses including financial strain, transport challenges and family responsibilities. For this reason, health including cancer screening received a low priority. The healthcare for the Aboriginal community around Warrnambool is reportedly good, since Aboriginal people have access to both mainstream and local ATSI doctors. Interestingly, the Aboriginal representative said there was too much emphasis on segregation from the mainstream services in the area. I think it s getting worse with the waiting lists, if you want to be able to get into particular doctors and having to go to a new doctor... cause that s a big factor in Warrnambool, sort of having that continuity of care, because there is such a turnover of a lot of the GPs I think there should be programs specific for groups but you shouldn t have something that s a separate system, which seems to exist a little too much down this way 6 7

6 ...[the Sudanese community] may be reluctant to go to somebody that they don t know. But if they know somebody or if they take from their own community it will be much better and much easier to just talk freely, and with the language also, those understand. Sometimes the language is the main barrier to explain what the patient got... this is not about trust, it is about who can understand what you are talking about There s not many (doctors) that you can actually, you can talk to like a normal person...that you can actually not be judged, or, I don t know... According to Sudanese community representatives, the major concern was having access to doctors who could speak and understand their language, prompting a number of Sudanese Warrnambool residents to travel long distances to see a doctor who speaks Arabic. Participants claimed many of the local doctors were foreign, which made communication and understanding difficult. The majority of groups were dissatisfied with local doctor services. The main issue was a lack of familiarity/trust with the doctors, accessing the doctor of choice and staff turnover. Warrnambool and Cancer Screening Breast, bowel, and prostate cancers were cited as the most worrying cancers by participants, and reportedly received the most coverage in local media. All groups said cancer was prevalent in their community and had become more so over time. The female groups listed cancer as a primary health concern, particularly bowel, breast, skin, lung, ovarian and pancreatic cancers. Heart disease was also listed in these groups as a major health concern; together with cholesterol, fertility (in the year old group), Alzheimers and weight management. Generally, men were concerned with prostate and skin cancer. Self-reported cancer screening was equal or higher than state averages for Pap smears, mammograms and bowel cancer screening. Actual numbers from health registries, however, showed marginally below average breast screening participation, and rates at or above average for cervical and bowel screening. Many of those interviewed suggested that cancer was caused by a range of things including: high ph levels in the body, smoking, genetics, stress, drinking, bad food, and the environment. For some, reducing the risk of cancer meant actively attempting to live healthily through eating well and reducing stress. One participant in the female year old group mentioned everyone knew someone with cancer, and that it s not just an old person s disease anymore. In the female group the prevalence of cancer had the effect of making some women avoid thinking about it. Health professionals claimed there was limited prompting for screening by doctors, but that short consultation times made it hard to discuss everything. I have three immediate family members that have had cancer, and for that reason I deliberately don t think about it, which is I have the tests, but yeah, it s denial 8 9

7 Generally, women believed it was important that doctors actively encourage their patients to have screening tests done. Some women interviewed said their doctors had prompted them about screening. Most people said they were rarely actively encouraged to get screened, and tests were self-driven. There was a view among some that if screening hadn t been raised by their GP, it wasn t a priority. [doctors are] not really going to want to go searching for other things to remind their patient about One female key informant explained her GP had never asked her about her mammogram, Pap or bowel screening history. One woman interviewed (25-34) had never had a Pap test, but said if her doctor had prompted her, she would have had the test. Older women said they often felt they prompted their doctors about tests, including cancer screening, and that they were not reminded when they were due. Older men explained their doctors were good at recommending the digital rectal examination for prostate health, but little had been said about bowel cancer screening. Some key informants suggested screening isn t discussed at a community level, or perceived as a priority. It s just that life stops people screening, a lot of people in disadvantaged communities have chaotic lives For health professionals, screening had not been on the radar as a health priority when there were other more pressing priorities at a community level (for example, sexual health and immunisation). It was also noted many people don t go to the doctors or health clinic unless they are unwell, so there is a limited opportunity to engage in any preventative actions. Screening was reportedly not a concept present in the Sudanese culture (e.g. breast cancer screening is non-existent in Sudan). The very idea of screening to look for disease or a potential health problem was unfamiliar to those interviewed. Among the Aboriginal population, key informants said that the fear of being diagnosed with cancer was a major deterrent, along with a reluctance to seek information about screening or health assessments from a doctor. Most people were aware that the purpose of screening was for early detection of abnormalities when asked. Women s knowledge was high about Pap tests, but specific knowledge of what the test was for was mixed being unclear about whether it was checking for cervical or ovarian abnormalities, or sexually transmitted diseases. There was also confusion regarding the effect of the HPV vaccination on screening requirements, or the effect of the HPV vaccination. Women often talked about their experiences of Pap tests, and the associated awkwardness and embarrassment; they generally felt uncomfortable about the entire process. Reminder letters for Pap tests and breast screenings were considered a useful prompt. Difficulties in getting appointments at the clinics meant obtaining childcare, and taking time off work, reduced the priority given to Pap tests. For mammograms, there was a high level of awareness for all women about what it was, when, and where they should be undertaken. Unlike Pap tests, there was also widespread understanding of its purpose. Women had mixed views on how important it was to have a regular mammogram on reaching 50. Some who had been given a mammogram had experienced considerable pain, although others had not; this experience was for many a predictor of whether they would screen again. For bowel screening, FOBT awareness was mixed in the focus groups. There was a general aversion to the FOBT by those who d received the kit, and those who had not received a kit but were aware of the test. For women it was about the process, for men a key reason against the test appeared to be related to a degree of inevitability or fatalism. There were some cynicism and scepticism about the validity and reliability of the FOBT tests, how the information from tests would be used and how much money was made by the testing companies. If you go looking for trouble, you ll find it 10 11

8 Ideas To Improve Screening in Warrnambool The general view in Warrnambool was that cancer screening promotion needs to be community-based, and delivered via existing community networks. These could include sports-related organisations and activities. There are a number of sporting events and social activities which attract large numbers of people, and two regional sporting leagues based in Warrnambool (netball and football). Other groups such as the Bowls Club, the Rotary, the Lions Club, the Umpires Association and the Returned and Services League of Australia were also recommended to remind people about screening. This was suggested as preferable to organising a dedicated event about cancer screening, attended by the health-aware. Working with schools, so that young people are more aware of the importance of screening, was also mentioned. The local newspapers The Warrnambool Standard and the Warrnambool Extra were said to be read widely and suggested as effective in raising awareness of events. If you re going to deliver a cancer-specific message... it s going to be very hard to find an indigenous person that s going to go and speak on behalf or to be knowledgeable about the subject, that s just the fact of the matter, so you re going to have to partner up with the mainstream organisation to do it...they need to be educated, they need to be, how you say, having education sessions about the health issues Increasing knowledge and access to information through existing local channels was advocated. This could be done through neighbourhood houses or Centrelink to target the most economically disadvantaged groups. Aboriginal participants thought cancer awareness in their community low; suggesting it would be difficult to find an aboriginal person who could talk knowledgeably about cancer screening. In the Sudanese community, knowledge about screening was said to be low, with most not acknowledging the value of screening. The most common suggestion from women was to increase the opening hours of screening clinics to make them accessible outside work hours or on weekends. Women also suggested a specialised clinic or health event for women staffed by female practitioners and advertised in the local media, ideally including childcare. The cost of screening, particularly for Paps, was mentioned by women; i.e. seeing the doctor for a Pap test could be prohibitive, as they were paying for a full consultation when only a Pap test was needed. Many suggested that FOBT tests should be free, and if they were this would encourage more people to do them. Most respondents favoured community based strategies, built around the sports, recreational and social activities in Warrnambool. Workplace campaigns were suggested as a possibility by a few respondents, particularly with larger employers which predominantly employ males. Key informants suggested the Community Health Centre should include screening questions on their new patient health needs assessments, and provide FOBT kits. Others recognised that more needed to be done to remind patients about the importance, and benefits, of screening. Prompts from GPs about screening were seen as influential, and should be done routinely. Respondents took their doctor s opinion and encouragement very seriously. One key informant suggested working with professional bodies such as the Pharmacy Guild or the Pharmaceutical Society, to encourage pharmacies to become involved in screening activities or promotion at a local level. What s Next? You re not gonna pay to go to the doctor to get a Pap smear When it comes to screening, something like ambassador programs might work quite well here... Many thanks for your interest in this program. The research outlined in this summary report, including focus group discussions and statistical analysis, will be used by the Victorian Government to improve health services in Warrnambool and to inform a community-based approach to improving cancer screening participation in other Victorian communities. The suggestions made about how to improve cancer screening are being actively discussed and an effort made to incorporate them into routine screening processes. We would like to extend our appreciation, once again, to everyone involved. Information For more information about this research please contact: Kelly Drennan Phone: (03) kdrennan@vcs.org.au This report can be download from the internet at

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