Barriers to accessing psychosocial support services among men with cancer living in rural Australia: perceptions of men and health professionals.
Medical personnel (Social aspects)
Medical personnel (Psychological aspects)
Cancer (Social aspects)
Cancer (Psychological aspects)
|Publication:||Name: International Journal of Men's Health Publisher: Men's Studies Press Audience: Academic; Professional Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2011 Men's Studies Press ISSN: 1532-6306|
|Issue:||Date: Summer, 2011 Source Volume: 10 Source Issue: 2|
|Topic:||Event Code: 290 Public affairs|
|Product:||Product Code: 8010000 Medical Personnel NAICS Code: 62 Health Care and Social Assistance|
|Persons:||Named Person: Anderson, Robert Morris, Jr.|
|Geographic:||Geographic Scope: Australia Geographic Code: 8AUST Australia|
Little research has investigated formal psychosocial support use
among men with cancer living in rural areas. The current study
investigated perceived barriers to support service use among such men,
within the framework of the Behavioral Model of Health Service Use. In a
mixed methodology study, 82 men with cancer living in rural Australia
were surveyed, and nine of these men, plus three health professionals,
participated in semi-structured interviews. Reasons for not
participating in formal support were sufficient informal support and
subjective judgements about perceived need. Service availability was
rarely endorsed by the men as a reason for non-participation, but was
emphasised by health professionals. Identifying factors that impede or
facilitate service use might enable rural men experiencing
cancer-related distress to seek the extra psychosocial support they
Keywords: cancer, psychosocial aspects, rural healthcare, masculinity, men's health, social support, Australia
A diagnosis of cancer carries with it a significant psychological impact. Men with cancer experience significantly higher levels of psychological distress than men in the general population (Hinz et al., 2010; Zenger et al., 2010). It has long been recognised that cancer-related distress can be addressed through attending to a cancer patient's psychosocial needs, that is, their emotional (psychological, social and spiritual), practical and informational needs (National Breast Cancer Centre and National Cancer Control Initiative, 2003). Psychosocial support available to people with cancer includes services provided by mental health professionals (e.g., psychiatrists, psychologists, social workers). Interventions can be one-on-one or group-based, professionally or peerled, and accessed either face-to face or remotely, via telephone or Internet. The structure and content of these interventions vary. For example, approaches for men with prostate cancer have included educational programs, cognitive behavioural therapy, relaxation training, and support groups (Bloch et al., 2007). Although there has been some recent debate about the efficacy of psychosocial interventions (e.g., Coyne, Lepore, & Palmer, 2006; Manne & Andrykowski, 2006), they have been shown to increase wellbeing, improve adjustment and coping, and reduce distress in people living with cancer (Carlson & Bultz, 2003; Edelman, Craig, & Kidman, 2000; Jefford et al., 2005; Meyer & Mark, 1995).
Despite these benefits the majority of people with cancer (75-98%) never utilise formal psychosocial support services (Carlson et al., 2004; Eakin & Stryker, 2001; Plass & Koch, 2001). Men in particular are reluctant to use support services (Grande, Myers, & Sutton, 2006; Plass & Koch, 2001) even when clinically distressed. For example, Merckaert et al. (2009) found that around 50% of male cancer patients in their study experienced significant levels of anxiety and/or depression, yet only 10% reported a desire to receive psychological support.
HEALTH SERVICES USE
Understanding the factors that influence help-seeking among men with cancer is an important step in increasing service use and improving outcomes for men experiencing cancer-related distress. Factors that facilitate or impede the use of health services have been examined in the health service utilisation literature using The Behavioral Model of Health Services Use (Anderson, 1995). In this model, one of the primary determinants of health behaviour is categorised as Population Characteristics. Under this category, use of health services is seen to be a function of three factors: predisposing characteristics, enabling factors and perceived need for care.
Predisposing characteristics. Predisposing characteristics are individual characteristics, such as age, sex, ethnicity, and attitudes about health and behaviour that influence health service use. For men with cancer living outside of metropolitan areas, predisposing factors likely to influence the use of cancer support services are rural values and health beliefs. In Australia, differences have been documented between rural and urban residents in attitudes towards seeking professional help. Compared to their urban counterparts, rural residents report negative attitudes towards seeking professional help (Outram, Murphy, & Cockburn, 2004), and are less likely to actually seek help for psychological problems (Jorm, 1994; Parslow & Jorm, 2000). Further, greater expressed concern about the stigma associated with seeking help for mental health problems has been reported among residents from rural regions of Australia compared to those in more populated areas (Judd et al., 2006). It has been suggested the greater concern about stigma might be due to lack of privacy in small towns, where residents are more likely to know each other, and there is a greater possibility of other residents finding out about a person's problems (Hoyt, Conger, & Gaffney Valde, 1997). Rural Australians have also been reported as being more self-reliant and stoic than their urban counterparts in dealing with health issues (Wrigley, Jackson, Judd, & Komiti, 2005), preferring to rely on themselves and their informal network rather than seeking professional help (Howat, Veitch, & Cairns, 2006).
The health beliefs and values of rural men are also shaped by notions of masculinity. Help-seeking by men is often explained in the health services domain in terms of masculine gender-role socialisation, through which men and women learn different gendered behaviours and attitudes from cultural values, norms and ideologies (Addis & Mahalik, 2003). A social constructionist view of gender recognises multiple masculinities (Connell, 1995), whereby masculine identity is conceptualised as dynamic, socially constructed through interactions with others, and constantly tested and renegotiated across different contexts (Courtenay, 2000). As such, masculinity cannot be seen as a set of immutable traits shared among all men. However, in Australia, as in other parts of the Western world, the dominant or hegemonic masculine ideology promotes domination, aggressiveness, competitiveness, physical strength and control of emotions (Oliffe & Thorne, 2007). These characteristics are all potentially detrimental to the act of seeking help (Addis & Mahlik, 2003).
The diagnosis and treatment of cancer can pose particular threats to masculine identity. First, a man who conforms to a masculine ideology that upholds self-reliance and restrictive emotionality would likely experience difficulty not only in seeking outside help for distress, but also in disclosing feelings in discussion with others (Mahalik, Burns, & Syzdek, 2007). Thus, while not all Australian men will endorse these attitudes and behaviours, as individuals vary in the extent to which they endorse traditional masculinity beliefs (Levant, Wimer, Williams, Bryant Smalley, & Noronha, 2009) support service use is likely problematic for men who adhere closely to hegemonic masculinity ideals.
Second, for men diagnosed with prostate cancer, the most commonly diagnosed registrable cancer among Australian men (Australian Institute of Health and Welfare and Australasian Association of Cancer Registries, 2007), symptoms and treatment can affect the core of masculine identity (Schover et al., 2004). Incontinence and sexual dysfunction pose a threat to dominant notions of masculinity based around phallocentric ideals and sexual virility (Oliffe, 2005). Distress can result from the need to adapt to these changes in, or threats to masculine identity (Maliski, Rivera, Connor, Lopez, & Litwin, 2008). Studies of men with prostate cancer have indicated that a diagnosis of cancer and its subsequent treatment can alter an individual's masculine identity (Fergus, Gray, & Fitch, 2002; Gray, Fitch, Fergus, Mykhalovskiy, & Church, 2002; Oliffe & Thorne, 2007). These studies indicate that the experience of prostate cancer is a threat to traditional masculine ideals, but that men eventually renegotiate or redefine their masculine identities (Oliffe & Thorne, 2007).
Enabling factors. Factors such as service cost, accessibility and availability can either impede or facilitate use. These factors are particularly pertinent for rural men. Rural Australia is characterised by limited access to appropriate services, due to geographic isolation, poor transport links and shortages of healthcare providers (Australian Institute of Health and Welfare, 2005). A rural disadvantage in access to psychosocial support services for cancer patients, including services offered by social workers, psychologists and oncology counselling services, has been documented (Clinical Oncological Society of Australia, 2006). Where available, these support services are often compromised by long waiting times, out-of-pocket expenses, services restricted to inpatients (Clinical Oncological Society of Australia, 2006), lack of clarity regarding the different roles of the various professions, and a shortage of specialised workers (Lee, 2007). Due to the lack of available, co-ordinated support services, travel becomes a necessity for people with cancer living outside of metropolitan areas. In fact, one of the greatest challenges reported by people with cancer living in rural areas is the need to leave home for cancer treatment, support and follow-up services (McGrath et al., 1999).
Social support is another enabling factor. Pescosolido (1992, p. 1096) regarded social networks as the "mechanism (interaction) through which individuals learn about, come to understand, and attempt to handle difficulties". Her approach shifted the focus from individual "choice" of health service utilisation to socially constructed patterns of decisions, including consultation with others. Indeed, family and friends can play a pivotal role. High levels of social support can either facilitate or impede participation in support services. A frequently endorsed reason for not utilising cancer support services has been sufficient support from family and friends (Eakin & Strycker, 2001; Plass & Koch, 2001). Strong social networks are generally seen to have a "stress-buffering function" (Jackson et al., 2007, p.158), through the provision of emotional and practical support. Alternatively, supportive family members can encourage men to seek professional help. For example, Eakin and Stryker (2001) found that higher levels of social support predicted participation in a prostate cancer support group. The authors concluded that the men in their study were open to attend a support group specifically because of support from an encouraging spouse.
Perceived need. Even with support from significant others, participation in a health service is unlikely unless the individual judges that their problem is serious enough to require professional help (Anderson, 1995). Non-participants in psychosocial support services have reported a low perceived need for professional care (Plass & Koch, 2001). The need for services, however, is also externally evaluated. Evaluated need represents professional judgement about an individual's health status and their need for care (Anderson, 1995). The challenge here is that clinicians have been found to be poor at recognising emotional distress in their patients (Fallowfield, Ratcliffe, Jenkins, & Saul, 2002). The treatment team may have a low awareness of the role of psychosocial care and may find it difficult to discuss psychological issues with patients (Carlson & Bultz, 2003). Clinicians also report not having the time to address psychosocial needs (Frost, Brueggen, & Mangen, 1997). As a result, psychosocial support services are often poorly promoted to patients, and patients do not always receive direct referrals to services from doctors (Eakin & Strycker, 2001). Consequently, if need for care is not correctly evaluated then participation in support services is impeded.
In summary, Anderson (1995) has identified three categories of factors that may act as impediments to service use by men with cancer living in rural areas. Impediments to service use are often referred to as barriers. Glasgow (2008, p. 1) defines a perceived barrier as "a person's estimation of the level of challenge of social, personal, environmental, and economic obstacles to a specified behavior or their desired goal status on that behavior." Consequently, what might be a barrier to participating in a psychosocial support service for one man might not be perceived as a barrier by other men.
In the current study, we were interested in examining whether rural men with cancer had shared perceptions of barriers to participating in a psychosocial support service, and whether these perceived barriers were also reported by health professionals who worked in the region. The current study used a mixed methodology by surveying and interviewing a sample of rural men with cancer. Inclusion of interviews with health professionals allowed triangulation with the men's survey findings and interview data, to determine complementarity or disparity in the findings. It was anticipated that barriers to men's use of psychosocial support services would be related to enabling factors like access to services and levels of social support in rural areas. It was also anticipated that predisposing characteristics and perceived need for services would be influenced by rural values and socially constructed notions of masculinity.
Participants were 82 men diagnosed with cancer recruited through their medical specialist, oncology clinic or support group. Three-quarters of the group of men had genito-urinary cancer, which includes cancer of the prostate, bladder, kidney or testis. Of these 61 men, 58 specified that they had prostate cancer. For over half of the men in the sample, their cancer diagnosis had occurred more than two years previous to their participation in this study. In terms of treatment, 19 men were currently undergoing chemotherapy. The most frequent treatment received in the past by the current sample was surgery (n = 33), followed by radiotherapy (n = 28). Eleven men had not undergone any treatment for their cancer.
The mean age of the participants was 69.78 years (SD = 10.18), and 85% of the sample was married or in a defacto relationship. A secondary school qualification was the most frequently reported highest level of education, and over three quarters of men were not in paid employment. More than two-thirds of the sample had been retired from paid employment for an average of 13 years.
Of the sample of 82 men, nine participated in individual semi-structured interviews with the researcher. The average age of the men interviewed was similar to that of the overall sample (M = 69.00, SD = 9.31), and each of the nine men reported having prostate cancer. All nine men were married. Two men were currently employed, one was on leave due to illness and the remaining six men were retired.
Five health professionals who acted as third party recruiters for the study were approached to participate in an interview. Time and budgetary constraints limited the number of potential interviewees approached. Three health professionals, including an urologist, a community health nurse, and a hospital oncology social worker agreed to be interviewed. The urologist practised from a clinic located in an inner regional city, but visited outer regional and remote areas on a weekly basis. The community health nurse worked in a clinic located in an outer regional city, and the oncology social worker was based at an inner regional city hospital that serviced patients from inner and outer regional areas, and remote areas.
Place of residence. All men surveyed and interviewed were living in non-metropolitan areas within the state of Victoria, Australia. The Accessibility/Remoteness Index of Australia (ARIA+) was used to classify each participant according to their postcode (ARIA+, 2006). The ARIA+ provides a widely accepted measure of remoteness for locations within Australia and is based upon measures of road distance between populated localities and service centres (there are five categories of service centre based on population size). ARIA+ provides an index rating from 0 (high accessibility) to 15 (high remoteness).
Approximately half of the sample of men surveyed lived in an accessible area; 45% lived in moderately accessible area; and 6% lived in a remote area. Those participants who lived outside of a township were an average of 23.34 (SD = 15.36) kilometres from the nearest town. Participants travelled an average of 14.40 (SD = 27.36) kilometres (one way) to visit their general practitioner, and 82.70 (SD = 100.32) kilometres (one way) to visit their treating specialist. Of the nine participants interviewed, five lived in an accessible area, and four were from a moderately accessible area. Although non-metropolitan areas of Australia are diverse in structure and population, for the purpose of this study, and based on a rural/urban dichotomy, men living outside of metropolitan areas will be referred to as rural men.
Each survey participant received a questionnaire package consisting of a cover letter, a Psychosocial Support Questionnaire and a reply paid envelope. The questionnaire consisted of items about participation in psychosocial support. Participants were asked to indicate whether they had participated in various services offering emotional support (services such as that provided by a psychologist, social worker, counsellor, self-help group, telephone-based counselling, Cancer Council of Victoria, or other cancer organisation). The questionnaire also included items regarding psychosocial support and reasons for participation (and non-participation) in formal support services.
The final section of the questionnaire consisted of a list of demographic questions relating to age, place of residence, relationship status, education level, employment status, household income and ownership, and number of children. Participants were also asked about their cancer illness, specifically location or type of cancer, time since diagnosis, and types of treatment undergone. Additional questions addressed travel related to their cancer, including distances travelled to visit their general practitioner and their treating specialists.
Following ethics approval from the relevant Human Research Ethics Committees, questionnaire packages were collated and delivered to the participating specialists, and support group facilitators, who began distributing them to cancer patients attending their regular appointments.
Survey participants who indicated on their returned questionnaire their willingness to participate in an interview were telephoned by the researcher, and a time and place convenient to the participant was arranged. In all cases the interviews took place in the participant's home. Three of the five professionals approached agreed to participate in an interview. Prior to the interview the participant was given a written overview of the study and an informed consent form to read and sign. Interviews ranged from 50 to 75 minutes, and were recorded using an audio device supplemented by hand written notes.
Two levels of qualitative data analysis were used to explicate themes, utilising a procedure outlined by Auerbach and Silverstein (2003). After all interviews had been conducted, and the texts of each had been transcribed, the texts were read over and segments of each text that were deemed relevant to the basic research questions were selected. Selection of these segments of relevant text revealed repeated ideas, or concepts, that many interview participants discussed. The analysis involved developing text-driven categories and coherence-driven categories. Text-driven categories develop as a result of interview participants using relatively equivalent words and phrases. As these categories develop, they begin to stand in logical or conceptual relation to each other, and can therefore be organised into coherence-based categories, which are referred to as sensitising concepts (Auerbach & Silverstein, 2003). Once these sensitising concepts were identified, they were analysed within the framework of The Behavioral Model of Health Services Use (Anderson, 1995), with specific reference to population characteristics (i.e., predisposing characteristics, enabling factors and perceived need for care). The following findings are discussed within this framework. Identification codes after each quote identifies the different informants.
RESULTS AND DISCUSSION
Survey data revealed that the level of awareness of psychosocial services offering emotional support was high, with nearly 82% of men in the sample reporting their awareness of at least one such service. The sample was evenly divided between participation in a formal service offering emotional support (n = 37,48.7%) and non-participation (n = 39, 51.3%). Men who had not participated in a psychosocial support service endorsed various reasons for non-participation (Table 1).
The survey findings and analysis of interview transcripts revealed specific factors that impeded or facilitated participation in psychosocial support services. The findings are discussed under the framework of The Behavioral Model of Health Services Use (Anderson, 1995). Table 2 outlines the sensitising concepts, based on this model, using quotes from participants as headings for the text-based categories.
Demographic. In the current study men who used a psychosocial support service were significantly younger (M = 65.1, SD = 11.15) than those men who did not use a support service (M = 73.05, SD = 7.68), t (74) = -3.63, p < .001. A possible explanation of this finding was provided by some of the men interviewed. They believed that younger men with prostate cancer are indeed in more need of support than older men, especially in regard to dealing with changes in sexual functioning associated with prostate cancer. One respondent (ID: P009) noted that "my child raising days are over--it would be fairly bad for a younger man than myself." Another (ID: P126) stated that the impact of a prostate cancer diagnosis was bad enough for an older man, "but for younger people, and there are younger people, my God, they must be going through hell." These responses are consistent with Maliski et al.'s (2008) findings regarding masculine identity and the renegotiating process men with prostate cancer undertake. The authors noted that the men in their study normalised the symptoms of prostate cancer. They did not view incontinence and erectile dysfunction as a threat to their masculine identity, but re-framed these symptoms as a normal and expected aspect of the aging process. Re-negotiation of masculinity also occurred through shifting priorities. Similar to the respondents in the current study, the men in Maliski et al.'s study noted a shift from sex as a high priority in their lives to something that had little impact on their lives as older men. As a consequence, re-framing the symptoms of cancer as a younger man's problem altered the older men's perceived need for support.
Social structure. Respondents gave varying accounts of their ability to garner resources. Despite the survey finding that awareness of services was generally high, some men and health professionals reported that access to appropriate resources was difficult due to lack of awareness. One man (ID: P004) reported a lack of information about services, "I just had to go feeling my way along." Health professionals too, noted that there are resources available, but that cancer patients are just unaware of how to access them. According to one health professional:
In contrast, other men reported being able to command the resources they needed through their own efforts or with the help of someone in the health system. One respondent reported being disappointed with the information given him by his treating specialist. This led him to conduct his own research:
One of the health professionals reflected on some people's ability to garner resources, and how this enables them to cope well:
Oliffe and Thorne (2007) highlighted a system-generated necessity for men with prostate cancer to garner their own information and resources. The public health system was seen by the men in their study as dictating the amount of time a physician could spend with patients. Consequently, similar to some of the men in the current study, their participants engaged in self-directed learning; accessing information via the Internet, cancer agencies and survivors (Oliffe & Thorne, 2007). The authors also noted that self-directed learning helped to reinstate some independence in a situation where control is often handed over to the medical team.
Other men in the current study noted that access to information and services was easier if you knew someone in the health system. For example, one man stated:
Health beliefs. It was evident that the rural context influenced the beliefs about the benefits and disadvantages of using psychosocial support services. When asked to comment on how living in a small town might affect professional help-seeking, three men indicated that small town residents can be unsupportive. One man (ID: P003) reported that people in his town were very judgmental about his choice to use alternative medicines: "You see the way they look at you ... It was the talk of the town." Another discussed the notion that small town residents feel entitled to know everybody's business:
Both the men and the health professionals noted that there was a stigma attached to seeking psychosocial support. One health professional noted that:
Another health professional (ID: H003) believed that seeking help for medical reasons was accepted, but not for psychological reasons: "that sense of what is wrong with me, to have to need to speak to a social worker?" Similarly, men commented on stigma through what they saw as the trivialisation of prostate cancer by others. They remarked that others failed to understand the seriousness of the cancer, let alone the emotional impact:
This last comment highlights the influence on health beliefs of notions of masculinity, and what is considered to be normative behaviour. The health professionals interviewed spoke of the difficulty in engaging men. Without wanting to stereotype, the respondents commented on the difficulty men might have in handing control of a situation over to someone else. For example,
When asked about the reluctance of men to discuss their emotional concerns, the same health professional replied, "I would be fairly confident in saying that men are probably not expressing their real concerns ... I get the feeling that the men don't talk about it even though they want to." Many of the men interviewed also endorsed these traditional views about men's help-seeking, and how masculine traits like remaining silent and in control can act as a barrier to using a support service. "To get people to talk about it, the average man, it's not like a lady, they shut themselves off." (ID: P003). Much of this reluctance to talk about emotional issues associated with prostate cancer was attributed to its association with sexual functioning; a topic that can cause embarrassment. One respondent stated:
This respondent, while saying that men are reluctant to talk about specific issues related to prostate cancer, believed that there were myths involved in men's health. He stated that men are interested in their health and given the opportunity would happily discuss it. Broom (2004) reported similar findings in his interviews with men with prostate cancer. He noted that one man viewed societal and media constructed "male approaches" to dealing with illness, which included being non-communicative and reluctant to talk, as propaganda. This respondent's experience, like that of the above respondent, was that men were actually quite willing to discuss sensitive issues. Indeed, all nine men in the current study were surprisingly open in discussing a variety of sensitive emotional and physical problems with the researcher. Broom questioned whether the "male approach" was the result of men's unwillingness to discuss their health problems. He contended that it actually resulted from the lack of institutional support networks for men, which limits the forums available for men to address their health problems. This notion was also apparent in the views of one of the health professionals interviewed for the current study:
These findings indicate that there might be specific settings in which men feel comfortable discussing emotional distress, provided that they are able retain their masculine identity. This may be possible through promoting specific traditional masculine traits. As suggested by Oliffe and Thorne (2007), many masculine ideals have the potential to work for a man in the context of prostate cancer. Oliffe (2005) reported that competitiveness, physical prowess, and problem-solving ability could assist men to conceptualise and recover from prostate cancer and its treatments. The men interviewed in the current study demonstrated how self-reliance and control were useful tools in dealing with distress. One respondent commented:
Health beliefs also incorporate judgements about how effective a service might be. Although the four men who had used a psychosocial support service were convinced of the benefits involved; "they (telephone helplines) stop you from going around the bend!" (ID: P002), and "It's (a support group) people in a similar situation. Yes, I think we all benefit one way or another." (ID: P005). Others indicated that they were uncertain of the benefits. There were particular concerns expressed about participating in a support group. Although the two support group members interviewed were convinced of the effectiveness, and had actively tried to recruit men to the groups, one respondent noted:
Another was concerned with the quality of information presented at support groups:
This concern was echoed by one of the health professionals who commented that, "people can get misinformation at support groups." (ID: H001). The negative attitudes towards support services evident here are consistent with Schover et al.'s (2004) findings. In that study, positive attitudes towards help seeking for erectile dysfunction after prostate cancer were significant predictors of intentions to seek help. Studies across other groups of cancer patients have also reported a relationship between negative attitudes to psychosocial services and non-participation in such services (Grande et al., 2006; Steginga et al., 2008).
Personal/family. The cost of psychosocial services for the men in the current study was not seen as a barrier to participation. Less than 10% of survey respondents indicated that the cost associated with accessing a service made it prohibitive. For the men interviewed, having someone to drive them to appointments was important, and this role was performed predominantly by the men's spouses or in some cases by adult daughters or daughters-in-law. One respondent reported that his daughter moved back home to care for him. As he lived in a small town, she was able to drive him to appointments in larger regional centres, for which he expressed appreciation:
The support of informal networks can be critical to service use. Anderson (1995) saw social relationships as fitting into the category of enabling resources. However, support from an informal social network not only facilitates support service use, it can act as a barrier to use. Jackson et al. (2007) describe strong social networks as cohesive and group-like, and therefore susceptible to effects of conformity, shared opinions and accepted behaviours. As a result, if those in an individual's informal network have a negative attitude to seeking help from health and mental health professionals, then the individual might be discouraged from using formal support services.
In the current study, the most frequently reported reason for non-participation in a psychosocial support service was that they already felt sufficiently supported (see Table 1). Family members and friends were the main sources of support, and this was highlighted in interviews both with health professionals and with men with cancer. One health professional stated "I think the blokes rely very heavily on their partner, very heavily." (ID: H002), and another highlighted the importance of the role of adult daughters:
The men interviewed also saw their family members, particularly their wives, as a buffer to stress. One respondent noted:
The views of these respondents reflect a reliance on females as gate-keeper and provider of men's health, which is seen as a characteristic of men's health behaviour (Lee & Owens, 2002).
Community. Appropriate health services and facilities must be available in the community to enable service use (Anderson, 1995). As rural areas of Australia are characterised by shortages of services and health personnel, those interviewed were asked how living in a rural area might impact on psychosocial support service use. Three of the nine men interviewed noted that while services were available, accessing them could involve significant travel or delays in receiving an appointment. "I didn't go for a support group because it was too far to drive." (ID: P009). Interestingly, this man lived in an inner regional area, where distances to major service centres are shorter, compared to those living in outer regional areas. The two other men who indicated that place of residence impacted on use of services did live in an outer regional area. They noted that, "as for actual services here (in small town), there's none...you need to travel to (larger town)" (ID: P003), and "it is a disadvantage in terms of getting (a service) as quickly as you want it, that's the trouble." (ID: P008)
When asked about access to services and service availability, two of the three the health professionals interviewed agreed with the men that access in rural areas is a problem, and described workforce shortages and travel as barriers to service utilisation. One respondent reported a lack of access to support services in the area:
Another health professional reported that travel was a major burden on people with cancer in rural areas:
In contrast to this view, six of the nine men interviewed indicated that access was not a major concern. Either the facilities in their region were adequate, or it was possible to access services via telephone or simply by driving to a larger regional centre. One respondent, who lived in an inner regional area, stated that there was:
Another, who lived in an outer regional area, reported that place of residence was not a barrier to service use as he was easily able to access psychosocial support via the telephone:
Furthermore, another respondent from an outer regional area downplayed the inconvenience of travelling to access services:
Survey responses also indicated that living in a rural area was not considered a barrier to accessing psychosocial support services. Travel and lack of choice of services were endorsed as reasons for non-participation by only 6% and 5% of the men, respectively. Of the four men who indicated that travelling too far to access professional services was a reason for not using such services, two were from a remote area, and two lived in an outer regional area. Only one of the five men living in a remote area endorsed lack of choice of professional services in his area as a reason for not using such services. The other men who endorsed this reason resided in inner or outer regional areas. Thus, there was no evidence a clear relationship between increasing remoteness and lack of access to services.
Perceived. In the current study, perceptions of need were frequently endorsed as reasons to not participate in a support service. Table 1 shows that reasons such as 'I can cope on my own', 'I have no emotional problems', and 'Other patients are more in need of support than I am' were, after sufficient support from family and friends, the most frequently endorsed. The desire to cope without assistance was evident in the interviews. Comments by the men suggested the importance of traditional masculine traits such as independence and a certain amount of stoicism. One respondent quite proudly noted that he:
The health professionals also expressed the belief that a certain amount of stoicism prevented men from accessing support services. One stated that:
This view was echoed by another health professional, who stated:
Perceived need for support was also judged comparatively. Judgements were made by the men about how serious their problems were compared to others. There was a common perception that other people were in more need of services (22% of survey respondents endorsed this as a reason for non-participation). The men typically expressed a concern for others in a less fortunate position. Four men reported that they felt fortunate compared to others. For example, "I don't know how older people than me cope." (ID: P007), and "You know I haven't been that unlucky, compared to some." (ID: P002). The men also tended to downplay and minimise their own problems. Some respondents spoke of their cancer as they would a less serious ailment, like a common cold: "I got a touch of cancer on my spine" (ID: P003), and "You wonder where you pick it (cancer) up!" (ID: P002). These views present further evidence of renegotiating masculine identity. Although diagnosed with a potentially debilitating disease, the men positioned themselves as strong, through downplaying the seriousness of prostate cancer and minimising their need for help in dealing with it.
Evaluated. Need is not only judged subjectively, it is also judged professionally. When questioned about determining who needs to use a psychosocial support service, health professionals acknowledged some difficulty in this area. There was a general consensus among the health professionals that the need for psychosocial support varies from individual to individual. It was reported that people differ in the amount and type of support they need, and that it can often be difficult determining the level of support an individual requires. It was also noted that there are certain times during an individual's cancer illness where they might require more support than at other times. One respondent stated that there was always some uncertainty involved in understanding how much extra psychosocial support a patient might need:
Determining who needs extra support might be clouded by a lack of discussion in consultations about emotional issues. Many of the men interviewed noted that they tended to discuss "mainly procedural things I guess" (ID: P009), "physical symptoms, treatments and what's going on with the disease" (ID: P004), rather than psychosocial concerns. Other studies have reported system-based barriers to addressing the emotional needs of cancer patients (Broom, 2007; Carlson & Bultz, 2003). Communication between prostate cancer patients and their physicians have been characterised as business-like, hierarchical, time-limited transactions that focus on information provision (Oliffe & Thorne, 2007). Oliffe & Thorne note that gender dynamics are at play here, particularly in regard to subordinated masculinities. However, consultations may also be conducted within the context of the biomedical model, in which physical wellbeing takes precedence over psychological or emotional wellbeing. The likely consequence is a lack of discussion about emotional distress, and subsequent referral onto psychosocial support services for distressed patients.
The results of this study indicate that the perceived barriers to support service use by men with cancer living in rural areas differ between the men themselves and their health professionals. Health professionals who worked in the public health system paid particular heed to access, travel and service availability as barriers to psychosocial support service use. This emphasis on logistical barriers might be due to a number of reasons. First, two of the health professionals were working in a government system where policy is likely to be based on action to address clear and measurable targets, for example, increasing services. Second, these health workers reported working with large case loads and/or with limited resources. Therefore, any increase in available services or resources would presumably alleviate some of the pressure experienced by local health personnel. Third, the health professionals interviewed were aware that the study was funded by an Integrated Cancer Service whose aims include developing integrated cancer care and defined referral pathways for the populations they serve. This perceived emphasis on service provision might have influenced the views stated during the interviews.
In contrast, men surveyed rarely endorsed limited availability and access to services as reasons for not participating in formal support. The majority of men indicated that travel is an accepted part of living in a rural area, and were generally not concerned by distance to or availability of services. The current findings indicate that a focus on increasing service utilisation through the removal of logistical barriers, such as providing more services in rural areas, might be misplaced. This is not to say that availability and access to psychosocial support services should not be maintained or improved, but that attitudes towards using support services may also need to be addressed.
The current study indicated that predisposing characteristics and perceived need were considerable barriers to participating in a psychosocial support service. Of particular note was the continuance of the gendered practice of female relatives taking on the nurturing role, and the men's acceptance and appreciation of this support. Men commented on the stress-buffering effect of their informal network that rendered professional help unnecessary. In addition, both health professionals and men interviewed commented on men's tendency to remain silent and stoic in the face of adversity, which influenced their perceived need for help. There was also evidence of a tendency to normalise and downplay symptoms, and minimise the need for help. While these behaviours may be important in renegotiating masculine identity, they may result in denying any distress, rather than resolving it. The challenge associated with denying a need for support is that it impacts on how need is evaluated by professionals. A level of uncertainty involved in determining who needs extra psychosocial support was reported. Indeed, there were shared perceptions between the physician interviewed and the men that emotional issues were not often addressed in consultations. In light of the current participants' level of disclosure to the researcher, and the opinion expressed by one participant that men are actually willing to discuss sensitive health issues, it appears that a lack of discussion of emotional concerns might be the result of limited opportunity rather than any unwillingness on the men's behalf to do so.
It is evident from the current study that any opportunities for rural men to discuss emotional issues need to be offered with privacy in mind. Privacy was particularly important where there was evidence of stigmatisation of help seeking for emotional problems. Some of this stigma might result from a lack of understanding of what is actually offered in a psychosocial support service. Although the men in the current study reported a high level of awareness of support services, this does not necessarily translate into an understanding about how the services operate and what they offer. Health professionals have a role to play here, particularly male health professionals. Help seeking is facilitated if both the health problem and the act of getting help for that problem is normalised by other men (Addis & Mahalik, 2003). Health professionals working in rural areas should be aware of the importance of normalising cancer-related emotional distress among men, and discussing the various types and benefits of psychosocial support services that can assist with emotional distress. This type of directed discussion would potentially provide an acceptable forum to discuss psychosocial issues, and may prove a fruitful way of altering health beliefs and attitudes towards using support services. Further, it might be possible to alter attitudes to using such services by capitalising on traditional masculine traits like independence, and regaining strength and control. Refraining support service use as a way of demonstrating these traditional masculine traits has the potential to increase the acceptability of formal support service for men experiencing distress.
The current study needs to be viewed in the light of some limitations. First, the sample size was small, and men under the age of 60 years and men with cancer in tumour streams other than prostrate cancer were under-represented. In addition, the cancer patients were from one region of one Australian state. A further limitation relates to the retrospective nature of the questions. It is probable that patients' needs and reasons for (non)participation in formal psychosocial support varied over the course of their illness, and the frequency and duration and of the support service used was not addressed.
Despite these limitations, the strength of this study is in the mixed methodology used to investigate formal psychosocial service use by an under-researched population-rural men with cancer. Not all men with cancer will need to access a formal support service, but those who do may perceive barriers related to attitudes towards support services rather than logistics. Offering acceptable forums for men to discuss their needs in a way that fits with their masculine identity might enable rural men experiencing cancer-related distress to seek the extra psychosocial support they need.
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DENISE CORBOY (a), JOHN McDONALD (a), and SUZANNE MCLAREN (a)
(a) University of Ballarat, Victoria, Australia.
The authors are grateful to the men with cancer and the health professionals who participated in this study.
This work was supported by Grampians Integrated Cancer Services, Victoria, Australia.
Correspondence concerning this article should be sent to John McDonald, School of Behavioural & Social Sciences & Humanities, University of Ballarat, University Drive, Mt Helen Vic 3353, Australia. Email: firstname.lastname@example.org
Out there in the community people really don't know where to start looking, and I know there's some terrific stuff out there ... but the point is you had to know that it's there. (ID: H003)
I had to do something, so I researched it.... I actually found the most useful source I had was the internet. It was more useful than the urologist. The urologist was always pushed for time, he was a scarce resource. (ID: P004)
They have their own ways of getting things done, or they know somebody, or they already have a knowledge base, you know they're professionals like you or I, they know how to work the system. (ID: H003)
Luckily my daughter works in the hospital system and she was able to access a lot of information for me (ID:P002)
But I'm very fortunate that the doctor friend, urn, I can ask him anything ... that sort of thing I think has probably built my confidence up a bit too, to help the whole situation. (ID:P007)
In a country town the word gets round.... Yeah, you don't have to tell too many ... If they (the community) get the right message it's probably a good thing, but if they haven't been told correctly, um, see there was a woman came in the shop not long after I got sick and argued the point with her (my wife) that she'd been told that I've only got two weeks to go, all this sort of thing, so you can imagine how that went down. (ID: P007)
There is still a stigma attached with it (emotional support), and I think people only really approach looking for facts and figures and services that are available." (ID: H002)
The guys at work didn't appreciate the seriousness of my illness; they thought I was being a sook. (ID: P004)
I guess particularly for those people who have always been in charge it's difficult to put themselves in a position when they're no longer in charge, and to take instructions would be difficult." (ID: H001)
I think this is a bit of a furphy [an Australian colloquial term for a false report or rumour] that men won't talk about their health issues ... men's health issues deal with men's bits, and a lot of people feel really uncomfortable about it, because men's bits do what men's bits do, and if you're not talking about men's bits then your just talking about general health issues. (ID: P004)
Look, a lot of guys, once they get to know you are the same as women, they do like to talk, but they've got to feel safe, they've got to feel that you're not judging them, that they're weak because they get emotional. (ID: H003)
I've been told I'm a control freak (laughs) and this is something I can't control, I can't do anything to control it.... Without them [telephone helplines] you'd be pretty hyped up for a while, with these things you don't sleep.... I guess that's just me trying to get some sort of control. (ID: P002)
Some people all they want to do is sit there and whinge and moan about their problem and not talk about anybody else, so I tend to steer clear of that one. (ID: P007)
There's a danger zone there that someone might go overboard and be giving advice that they shouldn't be. It would probably be better to come from a qualified person than from me ... you know there's a danger there that I might be telling them too much. (ID: P002)
When I was diagnosed my daughter took leave from her job, came home, she said, you know, I had her full support and everything ... which was nice. (ID: P009)
I think it's an advantage for all men to have daughters, because very often that's the sort of support that's offered. (ID: H001)
Obviously you discuss it (the emotional impact of cancer) with the wife; otherwise I could see that you could become depressed very, very easily. (ID: P007)
No, there's not (enough services in rural areas). I mean its minimalist at best, and that's not for lack of effort, that's just lack of resources. You know you could double our services and they would be sucked up just like that ...Certainly that's the thing that I harp on the most, you know, you have these government reviews but really they don't listen to people on the ground ... You've got very good workers doing their best to meet the need with very few resources. (ID: H003)
Lots of our rural families travel long distances. We can get (travel reimbursements) for them, but it's not an adequate recompense for the travel that's involved in the care. (ID: H002)
No disadvantage by not being in (large city), I don't think ... Living in (small town) is not a disadvantage, no; the services are actually quite good. (ID: P006)
Well, I haven't sourced any (emotional support services) from people in (town of residence). It's always been the telephone. (ID: P002)
Oh, you can handle going to (major regional city) for services ... it wasn't a major problem. Plus it's only two hours (driving). (ID: P004)
never dropped the bundle, I always thought positive, even though I was in a lot of pain at the time, I still didn't drop my bundle. (ID: P006)
No, I don't have to use them (support services), and I'm not going to use them until I have to. (ID: P008).
A lot of them (men) just think that they should just be able to tough it out and do it, that's very much the go. (ID: H002)
Some of it could be pig-headedness, you know, it could be a false belief that they (men) can cope when they can't.... Maybe a concession of an unmet need is a show of weakness. (ID: H001)
Those people who don't have those supports, look, I'm not really sure of how much extra they need. As a doctor I can say that people often behave well for the doctor and protect us from bad news, so its easy to assume that if people say that they are well supported and their day to day life is running along, and they're coping, I tend to believe it, but I don't know, it may be a front. (ID: H001)
Table 1 Reasons for Not Using a Psychosocial Support Service Reasons n % I have sufficient support from my family 48 72.7 I can cope on my own 33 50.0 I have sufficient support from my friends 31 47.0 I have no emotional problems 25 37.9 Other patients are in more need of support than I am 15 22.7 I cannot afford the cost of professional support services 6 9.1 I have not been given any information about support 6 9.1 services I would have to travel too far to access professional 4 6.1 support services There is a lack of choice of professional support 3 4.5 services in my area I do not want help from strangers 3 4.5 I have no confidence in the staff at support agencies 1 1.5 I am overwhelmed by too many people wanting to help me 1 1.5 Other (not specified) 1 1.5 I prefer to talk with clergy about my problems 0 0.0 Professional psychosocial support cannot help me 0 0.0 I do not think that the support staff would understand me 0 0.0 Seeking outside support is a burden for my family 0 0.0 Multiple responses were possible. Table 2 Sensitising Concepts and Text-based Categories PREDISPOSING CHARACTERISTICS Demographic/Social Structure It would be fairly bad for a younger man. I just had to go feeling my way along. I had to do something so I researched it. It helped to have someone in the system. Health Beliefs We don't want everyone in town to know our business. There is still a stigma attached. If a man gets sick he doesn't go looking for help. I think this is a bit of a furphy that men won't talk about their health issues. I guess that's just me trying to get some control ENABLING RESOURCES Personal/Family The blokes rely very heavily on their partner. It's an advantage for all men to have daughters. Community Very good workers doing their best to meet the need with very few resources. You've gotta go out of town. We are not sitting at the end of the world. NEED Perceived I didn't think I had the need for them at the time. You know I haven't been so unlucky. That sense of 'I should be coping'. Evaluated I'm always left with some uncertainty
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