J Genet Counsel DOI 10.1007/s10897-014-9782-8

ORIGINAL RESEARCH

Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals Emma Kowal & Lyndon Gallacher & Ivan Macciocca & Margaret Sahhar

Received: 8 May 2013 / Accepted: 29 September 2014 # National Society of Genetic Counselors, Inc. 2014

Abstract Indigenous populations are thought to have particularly low levels of access to genetic health services, and cultural issues may be a contributing factor. This article presents the findings of the first study of genetic health service provision to Indigenous Australians. This qualitative study aimed to identify elements of culturally-competent genetic health service provision in Indigenous Australian contexts. Twelve semi-structured interviews were conducted with genetic counselors and clinical geneticists from around Australia who had delivered services to Indigenous Australians. Participants were asked to describe their experiences and identify any collective cultural needs of Indigenous clients, as well as comment on specific training and resources they had received or used. Interviews were audio-recorded and transcribed with thematic analysis conducted on the data. The findings show that participants were reluctant to generalize the needs of Indigenous peoples. Some participants asserted that Indigenous peoples have needs that differ from the general population, while others felt that there were no collective cultural needs, instead advocating an individualized approach. Being flexible and practical, taking time to build rapport, recognizing different family structures and decisionmaking processes, as well as socio-economic disadvantage were all identified as important factors in participants’ E. Kowal (*) Centre for Citizenship and Globalisation, Deakin University, Burwood, Victoria 3125, Australia e-mail: [email protected] L. Gallacher : M. Sahhar Department of Paediatrics, The University of Melbourne, Royal Children’s Hospital, Parkville, Victoria 3052, Australia I. Macciocca : M. Sahhar Victorian Clinical Genetics Services, Murdoch Childrens Research Institute, Royal Children’s Hospital, Parkville, Victoria 3052, Australia

interactions with Indigenous clients. Indigenous support workers and hospital liaison officers were seen as valuable resources for effective service provision. The implications of this study for training and practice are discussed. Keywords Genetic counseling . Indigenous Australians . Aboriginal and Torres Strait Islanders . Culture . Genetic health services . Access . Cultural competence

Introduction The indigenous Australians are the descendants of precolonial populations of the Australian continent. The current definition of Indigenous Australians are those people that identify as Indigenous, have Indigenous ancestry and are accepted by an Indigenous community. Indigenous Australians, also known as Aboriginal and Torres Strait Islander peoples, comprise 2.5 % of the Australian population and number over 500,000 people. They are the most disadvantaged group in Australia, with high rates of disease, poverty, poor housing and incarceration, and low rates of education and employment (Australian Institute of Health and Welfare and Australian Bureau of Statistics, 2010). Indigenous people live largely in cities and major rural centres, with 24 % living in remote areas and 19 % speaking Indigenous languages at home (with almost all of the latter group living in remote areas, see Australian Institute of Health and Welfare and Australian Bureau of Statistics, 2010). Compared to Indigenous people who live in remote areas, those who live in urban areas are likely to speak English, to be better educated, and to have a non-Indigenous parent or partner. In general, remote-living Indigenous people are recognized as having distinct needs from other Indigenous Australians.

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Many Indigenous peoples have experienced racism accessing health care or have family members negatively affected by government policies, including the ‘stolen generations’ when thousands of Indigenous children were removed from their homes and placed in institutions (Commonwealth of Australia, 1997). As a result, Indigenous people can be reluctant to access state institutions, including health care services, and health care providers can face challenges in building rapport with Indigenous clients. Poor rates of education and linguistic diversity (particularly in remote areas) raise challenges for health literacy. Cultural issues relating to health care, for example restrictions on the discussion of deceased relatives (McGrath & Phillips, 2008), can also pro-vide barriers to providing high quality health care It is imperative to overcome these challenges given the poor health of the Indigenous population. Despite some improvement, there is a significant health gap between Indigenous and non-Indigenous Australians. Life expectancy is 11.5 years lower for Indigenous males, and 9.7 years lower for Indigenous females, than the general population (Australian Bureau of Statistics, 2010). A wide range of Indigenous-specific guidelines, policies and health services exist that aim to reduce Indigenous health inequalities. The contribution of genetic conditions to Australian Indigenous health is not known (Metcalfe et al. 2009), however there have been calls to investigate the potential for genetic medicine to contribute to reducing current health disparities between Indigenous and non-Indigenous populations (Anderson et al. 2006; Baynam 2012; Kowal 2012). There are no specific data available on Indigenous people’s access to genetic health services. However, Indigenous Australians are recognized to have lower levels of healthcare access in general (Australian Institute of Health and Welfare, 2011). Therefore, it is likely that Indigenous people underutilize genetic health services, but potential reasons for this have not been explored in the literature. However, cultural issues may be a contributing factor. Indeed, it is well established that cultural factors impact on the provision of genetic health care in a range of populations (Alliman et al. 2009; Saleh et al. 2009; Wang 2001; Weil 2001). Culture is also recognized as important for the health and wellbeing of Indigenous people, and the topic has received attention in the recent genetic counseling literature (Warren, 2011). Culture is understood to be a “socially transmitted body of values, beliefs, behaviors, social and political institutions … that are shared by a given group of people” (Weil, 2001, p. 143). The concept of ‘cultural competence’ describes a set of behaviors and attitudes that allows a health professional to work effectively with a cultural group different from their own (Genao et al., 2003; Johnstone & Kanitsaki, 2007). At the core of cultural competence are communication skills (Warren,

2011). However, the process of communicating across cultures may induce stress or anxiety for both patients and professionals (Ulrey & Amason, 2001). Positive patient contact and cultural competence training, promoting knowledge and self-awareness, may help reduce such stress reactions (Genao et al., 2003). Addressing institutional barriers such as clinic location, appearance and access may also be important (Fredericks, 2010; Weil, 2001). Recently, data have emerged that there is an unmet need for genetic health services within the Indigenous populations of Australia. Garvey and Bernardes (2012) identify a demand 130 for genetics services among more than half of the 221 Indigenous cancer patients surveyed. They advocate for the development of guidelines in the area, to facilitate research and service provision (Garvey & Bernardes 2012; Bernardes et al., 2014). A number of studies have explored the genetic counseling needs of Indigenous populations in New Zealand, Canada and the United States of America (Dukepoo, 1998; Kelly, 2009; Port et al., 2008). Key issues for Indigenous peoples internationally involve ownership of genetic information, consent and decision-making, culture and family, and service access (Dukepoo, 1998; Kelly, 2009; Port et al., 2008). While potentially relevant, application of the international literature cannot be assumed an Australian context. This article presents data from the first study of genetic health service provision to Indigenous Australians. This qualitative study aimed to identify if genetic health professions believe that Indigenous Australians have culturally-specific needs that should be taken into account.

Method Recruitment This study received ethics approval from two institutional review boards.1 A purposive sampling strategy was used. It is estimated at the time of publication that there are up to 300 genetic counselors and 70 clinical geneticists in Australia. Recruitment of genetic counselors and clinical geneticists from throughout Australia occurred in two ways. In the first, an email invitation was sent to heads of seventeen genetics services and familial cancer centers around the country who were invited to disseminate an email requesting interested staff who had experience counseling Indigenous Australians to contact the researchers for further information. The second method utilized pre-existing professional networks of the research team to invite genetic health professionals, with known experience of providing services to Indigenous Australians, to participate. Study information was sent by email to interested professionals, and an interview time arranged by phone or email.

Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals

Procedures Given the exploratory nature of the research, a qualitative approach was considered appropriate for this research. Semistructured, in-depth interviews were chosen as the method of data collection, and the interview schedule was informed by the relevant literature (see Appendix for interview schedule). The second author, a Masters student with an existing background in qualitative research, conducted the interviews by telephone or in person at the professional’s request. Participants were asked to describe their experiences and identify any collective cultural needs of Indigenous clients, as well as commenting on specific training and resources they had received or used. Interviewees were encouraged to use de-identified specific client examples to illustrate their points. Interviews were audio-recorded, transcribed and de-identified for analysis. Data Analysis This research used an inductive approach of thematic analysis informed by phenomenology as a theoretical framework (Liamputtong & Ezzy 2005). In this process, statements, words and phrases were coded (Liamputtong 2009). Codes were compared and grouped according to similarities and relationships, resulting in the development of overarching themes. For the purpose of rigor transcripts were coded independently by at least two members of the research team, and discussed (Carter & Little 2007). Similarities and relationships between codes were identified and discussed and overarching themes developed. Common themes are reported.

length of 40 min. Nine interviews were conducted over the telephone with three conducted face-to-face at the health professionals’ place of work. No apparent differences were identified between the two modes of interview. Thematic Analysis Results While many themes emerged from the experiences of participants, in this article we focus on those surrounding issues of culture and difference, as raised by these genetic health professionals. Some collective cultural needs are also identified and discussed, forming eight themes in total. Quotations from the interview transcripts are used as examples of the data upon which the themes were built. Health professional identifiers (HP) are given following each quotation. Theme #1: Reluctance to generalize: needs are individual When discussing the potential specific needs of Indigenous Australians who access genetic health services, the issue of generalization was a theme. Participants often expressed that they did not want to “typify things” (HP1) or “draw too broad a brush” (HP2) about the Indigenous population. This was brought up as consistent with the way health professionals work in general, incorporating a “client-centered approach” (HP6) in genetic counseling. The first was feeling uninformed or even ignorant, and therefore unable to judge: “I’m somewhat embarrassed to say I’ve got no experience or no knowledge of whether these are issues for Indigenous Australians [collectively]” (HP3) The second reason was an assertion that needs are individual, regardless of person’s culture or ethnicity, and therefore

Results Table 1 Participant profession and clinic location

Recruitment Results Initial recruitment via heads of genetics services yielded nine participants who agreed to be interviewed. An additional three participants were recruited through professional networks. The key participant demographics are summarized in Table I. Most participants were female (8) and genetic counselors (7), and ranged in experience from 5 to 23 years. Seven participants saw Indigenous clients at least once a month, while five participants saw Indigenous people approximately twice a year. Participants were from Victoria (4), New South Wales (3), Queensland (3), South Australia (1) and Western Australia (1). None of the participants were Indigenous themselves. One participant had Indigenous relatives by marriage. Interviews ranged in length from 15 to 50 min, with a median

Participant

Profession

Metropolitan/Outreach/Both

HP1 HP2 HP3 HP4 HP5 HP6 HP7 HP8 HP9 HP10 HP11 HP12

Genetic Counselor Clinical Geneticist Clinical Geneticist Genetic Counselor Clinical Geneticist Genetic Counselor Clinical Geneticist Genetic Counselor Genetic Counselor Genetic Counselor Genetic Counselor Clinical Geneticist

Both Metropolitan Both Outreach Metropolitan Both Metropolitan Both Metropolitan Both Both Both

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clients need to be approached on a “case-by-case basis” (HP2). This was brought up as consistent with the way health professionals work everyday, including a “client-centered approach” (HP6) in genetic counseling. Theme #2: Difference and sameness Despite the reluctance of many interviewees to generalize, similarities and differences were presented by some. However, the assertion that Indigenous consultations or counseling issues were not different from those of nonIndigenous people was more common than the assertion that differences do exist: “When we’re seeing patients it’s so variable depending on what the condition is, why are we seeing them ..... so I think the things to explore aren’t particularly different to anybody else. We always ask about the family, and the family’s fit, and the family dynamics… that gives them [Indigenous clients] an opportunity to talk.” (HP7) In the same way, some asserted that they “would probably practice similarly for most people” (HP4). When participants gave Indigenous patient examples, they would add qualifiers such as “it happens across all populations” (HP1) or add “as with any other couple” (HP6) after telling the story. Consistent with this was the statement that Indigenous clients react like any other clients: “Years ago… I came to the decision that in the immediate incidence of stress people are human and they act, they all have similar things and they worry about their children and their family. It’s only later that cultural stuff starts to come in… if you’re dealing with people basically as people and are empathic to them.” (HP11) It was also pointed out that the nature of the work of genetic health professionals means that difficult issues will always present themselves, and issues of culture are no more difficult than many other moral or ethical issues: “The truth is we broach all kinds of tricky issues and these are no different” (HP5). Despite these affirmations that Indigenous people were not different from other populations, culture was still identified as something that eventually “come[s] in” (HP11) to genetic health consultations. Some of the specific differences suggested were not discussed as necessities, instead it was specified that they should be kept “in the back of your mind” (HP11). For example, most participants asserted that the needs of Indigenous individuals living in a city, that is urban populations, would

differ greatly to those who live in rural and regional centres or remote communities. The next themes emerged from discussions of existing collective cultural needs. Theme #3: Respecting culture and building rapport Health professionals identified rapport development as something that might require particular attention when working with Indigenous Australians. The most commonly raised cultural issue was related to talking about deceased individuals. Participants often identified that naming and gathering information about deceased family members is a concern for many Indigenous communities and therefore needs to be approached with sensitivity. Most participants suggested careful explanation or to give “a bit more of that background preamble” (HP8) when addressing this. In the context of more remote communities, the need for care when taking blood was raised as well, due to distrust in research resulting from the history of disrespectful Western research on Indigenous living people and on Indigenous human remains (Anderson, 2002; Fforde, 2004): “When you think you’re… taking blood from them or somebody is and it’s being sent somewhere else, see you need to explain [because]… there have been times in the past when things have been removed from these people.” (HP12) Along with this, securing trust was also raised as important: “Yeah I just sort of go ‘Okay, well essentially they’re people and they deserve a level of respect, like everyone does, and that respect encompasses their history and their culture and their perceptions of what I’m here to do.’ So… if it means sitting on the floor, I sit on the floor… if it means talking to somebody while they’re doing the washing (laughs) and looking after kids, I do that, or if it means going back two or three times to actually achieve what you want to achieve you do that because you’ve gotta build that that trust and that relationship and for some people that takes a bit longer.” (HP1) Overall there was emphasis on being respectful and, where possible and necessary, taking time to address specific cultural and historical issues. Theme #4: Clarifying family structure and decision-making Two-thirds of participants made a statement to the effect that drawing out the family tree for

Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals

Indigenous clients “can be tricky” (HP10). Reasons given for this included different “formal and informal guardianship relationships” (HP2), more common in-family adoption, children in foster care, and individuals having multiple sequential partners, called “serial monogamy” (HP12), as well as the issue of naming deceased relatives, discussed above. Participants emphasized taking care to clarify blood relationships: “I guess you often have people looking after children that they’re not biologically related to or they’re the inlaw, so they’re looking after their partner’s sister’s children or that sort of thing so they… consider that family. So if you’re talking about you know, who are your kids and stuff that all comes into that… it’s then about getting that difference there between who actually gave birth to this person, rather than who actually cares for this person.” (HP1) Participants were also aware of different language use in families, particularly the use of words such as “aunty” and “uncle” to describe multiple family members, not just restricted to the sibling of a parent. A few health professionals also discussed how the ‘stolen generations’- the forced removal of some Indigenous children from their families for much of the twentieth century (Commonwealth of Australia, 1997)- might restrict the ability to document the family tree. With regard to decision-making, participants explained that involvement of the extended family or community elders may be an important factor for a couple or family. However, in contrast, the potential for shame surrounding a genetic condition to lead to secrecy in a family was also raised. Theme #5: Perceiving health differently Despite the statements concerning the similarities between Indigenous people and others, some participants (particularly those with experience in rural or remote areas, rather than urban areas) felt that that these perceptions and beliefs of Indigenous Australians may be different to those of other clients. Likewise, some participants believed the expectation to remain healthy may not be the same as in other populations: “The difference in how they perceive their health is something that really shocked me, and the fact that they don’t think that they’ll live a long life.” (HP8) Some thought that as a result of this view, and an “internal cultural fear” (HP1), they might be less likely to engage with health services. Genetic health services were seen by some as particularly difficult to engage with for Indigenous clients as “genetics is complicated medicine” (HP9) that any population

group may struggle to understand. There was a perception among some participants that there are many other more pressing health issues, which the Indigenous population as a whole “would sensibly focus on” (HP4) over genetics. Participants sometimes felt it necessary to employ different strategies for communicating genetic concepts to Indigenous clients. Some had suggestions for specific ways of presenting genetic information, using examples from the clinic. “When I want to talk about genetics [I] say that in white man’s language I’m gonna talk about these things that are in everything that I will call genes but you can think of them as… stories that get passed through generation to generation, and you get stories from your mother and stories from your father and that’s what makes you you, and it makes your eye colour and your skin colour and all the bits… Stories that get passed down the generations.” (HP12) Others felt that “genetics is genetics” (HP9) and therefore did not have an alternative model of presenting the information. It was also highlighted that health professionals should be aware that some health issues might be confined to the domain of women, so-called “women’s business.” Pregnancy and breast cancer were given as examples of issues that only women may be able to discuss in a consultation. Theme #6: Being practical and flexible While participants were often reluctant to name “cultural issues” internal to Indigenous communities as influencing genetic counseling practice, they were generally more comfortable identifying potential “practical” challenges of service provision to this population group. Participants suggested that Indigenous service provision might require extra sensitivity, more energy and possibly extra resources. They readily described the associated “practical stuff” (HP6) such as making contact or finding an appropriate means to communicate: “The main area of difficulty that I’ve had, it’s just getting in touch you know… quite often the families have been difficult to contact and I’m not quite sure the reasons but what I’ve done in the end is just ring up the local sort of Aboriginal service and find out who the health care worker is and invariably… I’ll get a message through and it works, it’s just fantastic, so I’ve learnt that that’s the way.” (HP4) Participants discussed the difficulty their clients had in accessing transport to appointments, and the futility of making

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specific appointment times rather than simply indicating a particular day. Many participants made a point of being flexible in their approach to working with Indigenous Australians. In practice this meant being prepared to see patients opportunistically rather than by appointment and seeing patients outside the clinic setting, such as in their homes. “I always say you leave your city white person way that you run the clinic in [the city], and once you get on the plane you just you do it their way and it works. You know we run an efficient clinic, we see a lot of people which is good… you’ve just got to be a bit more flexible.” (HP8) Other examples of flexible procedures included using telemedicine, seeing clients in the home, admitting individuals as inpatients in order to ensure they access “outpatient” appointments and investigations, or seeing clients outside of normal clinic times. The crucial role of Aboriginal health and liaison workers in service provision was emphasized. Theme #7: Getting help: health workers, support workers and liaisons Aboriginal health workers, community support workers and hospital liaison officers were all described as valuable means of support for health professionals providing genetics services to Indigenous Australians. The practical roles described included helping to contact families or “track people down” (HP11), coordinating appointments with other specialties and arranging transport for clients. Some participants described occasionally having liaison or health workers attend their consultations to help explain concepts to the patient, “almost like interpreting” (HP6) but also serving to educate the workers themselves. Health workers were seen by many as useful for their local knowledge and for teaching them about culture or explaining particular behaviors: “The Aboriginal health workers seem to be sort of so attuned to the community that I think even having them involved is probably a helpful thing anyway, ‘cause I think it sort of helps with the translation of… why the child has been referred or why the person’s been referred, so you know I think it’s a really nice for us; it’s a very supportive thing” (HP4). Theme #8: Thinking about training Indigenous cultural awareness programs were often reported to be available through professionals’ local service or hospital, and many participants had actively participated in such programs:

“They go through a series of two days of formal and informal discussions, talks, topics about… the past, how Aboriginals fit into society, the issues that they’ve dealt with, and then sort of current thoughts on how Aboriginal people see themselves and how they work in a family context… and various other things you know about the racial discrimination that goes on.” (HP7) Conversely, many had not had specific training that they could recall. When asked about this, many participants were ambivalent. On the one hand, they did express a desire for more education on matters such as Indigenous peoples’ views about termination of pregnancy, and the stigma or shame associated with genetic conditions. While the idea of more education was appealing, participants were aware it would be competing with many other training needs. Moreover, health professionals pointed out that their existing training equipped them with skills for managing sensitive issues, including cultural issues, and that you must “learn by doing” to become aware of the specific values and practices of their clients: “I think situation practice makes you more confident and experience makes you more confident, so I guess probably seeing any particular cultural group for the first time I guess… it’s always on my mind ‘Am I going to meet their cultural needs?’ and until you become familiar with the particular culture then you probably don’t. I don’t know if I felt so confident but with experience… now I feel much more confident working with Aboriginal families because I’ve been involved with a number.” (HP6) Alongside this was the implication that general cultural training may be limited in its application. The learning process was often said to be ongoing and some health professionals highlighted the importance of not making assumptions or relying on preconceived ideas, even after many years of experience. Others were aware that knowledge gained through the media and the Internet might influence their practice.

Discussion A question of Difference The findings address the specific genetic counseling needs of Indigenous Australians, as experienced by genetic health professionals in this study. It is important here to define the meaning of the term “specific genetic counseling needs.” The term is used here in reference to a distinctive set of collective cultural needs that would be expected to apply to all or at least most Indigenous clients. The collective cultural

Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals

needs of Indigenous Australians in relation to health care are widely recognized in many culturally-specific policies, guidelines and services. One rationale for this study was to explore whether such guidelines, policies or services were justified in the area of genetic health services (an area where none currently exist). There was reluctance on the part of participants to generalize the needs of their clients to that of the Indigenous population as a whole. In light of this, there are a number of points to consider. The first is the question of whether some of the needs described are indeed specific to all, or at least most, Indigenous clients despite individual health professionals being reluctant to make such generalizing claims. One reason for their reluctance may be a fear of appearing “politically incorrect.” The goal of political correctness is to avoid language that may offend or connote negativity (O’Neill, 2011). Political correctness in this context is understood to relate to sensitivity on the part of nonIndigenous people when discussing Indigenous issues for fear of being, and being perceived as, racist. It may be that to declare that Indigenous people as a whole have specific counseling needs is perceived by health professionals as a potentially racist statement, and is thus avoided. This would explain the apparent contradiction between general statements that Indigenous people do not have specific counseling needs, and the many examples of such specific needs raised by nearly all participants, reported and discussed here. It could also be that professionals are more comfortable talking about the specific needs themselves rather than the meta-observation that such specific needs exist. An alternative reason for participants’ reluctance to generalize could be that health professionals do not know whether the issues they experience in their practice are group specific, or may apply to all marginalized groups that experience structural barriers to accessing health services. The purpose of this discussion is not to argue for one or the other, but to simply flag both ideas following Saleh and colleagues who have suggested that “there is more risk in not acknowledging a cultural issue than acknowledging it” (Saleh et al., 2009, p.444). The literature calls for caution to be taken to prevent negatively stereotyping cultural minorities, including Indigenous peoples, in such discussions (Browne & Varcoe, 2006; McMurray, 2008). Indeed, it has been argued that culture has too easily become synonymous with difference, with people being defined by their culture alone, and not recognizing individual nuance and identity (Strathern, 1997). Strathern (1997) invites us to look at the specifics of an individual and be alert to underlying assumptions. This is a helpful framework for discussing health professionals’ perceptions of difference. Within the data there were assertions that there are different counseling needs for Indigenous clients. But there were also

assertions that there are no differences, that is, professionals practice in the same way they do for other groups. It is important to recognize that the second of these assertions does not exclude the idea that there are differences between individual clients. Rather it relates to the previous discussion of generalizing needs, and the imperative to avoid stereotyping cultural groups. Aside from the various geographical groups (urban, rural and remote), Indigenous clients will have experienced different levels of exposure to cultural heritage and practices, guiding their identity formation (Caple et al. 2012). Similarly they will have a variety of other cultural influences such as experience of disability, sexuality, racism and family, which are significant in the context of genetic counseling (Warren, 2011). The key message from these discussions is that difficult issues may present themselves, regardless of who the client is, and that situations need to be approached from the client perspective. This is consistent with the client-centred approach that participants identified, an adaptation of Rogers (1949, 1992) person-centered counseling in the context of genetic counseling (Kessler, 1979; McCarthy Veach et al. 2007). Kelly (2009) reports on a similar qualitative study with genetic counselors and nurses working with Alaska Native and Canadian First Nations peoples. A number of findings reported by Kelly have been replicated, with remarkable consistency, in our work. For example, the themes of being practical, issues with appointment attendance and the perception of health among Indigenous clients are found in both studies. However, it was their finding that there were two opposing positions that professionals may hold regarding difference in their consultations with Indigenous peoples that is perhaps most notable. The study quantified the number of professionals holding the “difference” position, compared to the “no difference” position, with a roughly equal number occupying each (Kelly, 2009). The results of our study are less clear-cut as many individuals were conflicted or asserted both positions. Regardless, the consensus between studies does once again call into question whether collective cultural difference does or does not exist. It also calls for international discussion about links between Indigenous status and specific genetic health needs. In light of this discussion, we pose the question: ‘Do Indigenous Australians have specific counseling needs, which cannot be met through the standard individualized approach?’ Given health professionals’ reluctance to generalize and the ongoing question of collective cultural difference, we recognize there may be a level of presumption in beginning to discuss specific counseling needs. However, as these themes were found throughout the interviews they are likely to be meaningful. They can be regarded in the context of health professionals’

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statements that they “keep them in the back of their mind” when preparing for a consultation. Collective Cultural Needs Participants’ views that developing rapport may require extra time is consistent with broader evidence that historical distrust of governing organizations persists, extending to the health care system (Cox, 2007). Recognition of history, respect and trust are recognized as facilitators in health care access for Indigenous peoples (Lau et al., 2012). Likewise, the importance of building meaningful social relationships has also been identified by Indigenous people (McBain-Rigg & Veitch, 2011). It is understandable that these experienced health professionals are cognizant of such issues, and this theme portrays the concept of cultural competence as it applies for them. Due to the familial nature of genetic medicine it is unsurprising that clarifying family structure and decision-making was an issue for participants, particularly in the context of pedigree documentation. The combined responses suggest that family structure varies among Indigenous peoples seen in genetics clinics around the country. Such variation, and difference from mainstream Australia, has been noted previously (Caple et al. 2012; Morphy, 2006). Social factors will likely determine guardianship circumstances, as with any population. The potential impact of the Stolen Generation is specific to the Indigenous population, and requires sensitivity, according to some participants. Once again, taking time was emphasized as essential, in this case for determining the nature of relationships and genetic risk. Moreover, translation of Indigenous language terms for specific relationships into English may not be possible (Morphy, 2006). Being mindful of this when eliciting family history appears important. Australian Indigenous peoples are more likely to involve community elders or family members when making decisions (Caple et al. 2012). This is not restricted to Indigenous cultures only, and the culturally competent genetic health professional must balance this with client autonomy. Participants in this study who encountered such family involvement were comfortable engaging family members in decision-making in dialogue with clients, in keeping with the best means of approaching the issue of autonomy (Hodgson & Spriggs, 2005). Regarding participants’ accounts of differing perceptions of health and the relevance of genetics for Indigenous clients, it is important to acknowledge that health beliefs are likely to vary between clients. However, exploring and recognizing the health beliefs of a patient before proceeding to explain the western biomedical understanding of a condition was considered helpful for participants. Culture is recognized as important for the health and wellbeing of Indigenous peoples (Priest et al. 2012). Incorporating ideas of story into genetic

explanations may help health professionals present information, particularly for Indigenous clients who are more influenced by traditional health beliefs. The role of gender in such health beliefs is important to recognize - so called “women’s business” or “men’s business” - and is supported by the literature (Maher, 1999). The perception among participants that other acute health conditions and social disadvantages are likely to have greater importance for the Australian Indigenous population as a whole, rather than genetic medicine, has been echoed in the work of Kelly (2009). Indeed, tackling social disadvantage has been argued as the priority in Indigenous health care, particularly in light of the higher incidence of chronic health issues (McMurray, 2008). Therefore it may be that research into those areas should be prioritized. However, a counter-argument would be that Indigenous people who do seek genetic health care are entitled to services that are culturally competent, making research such as this necessary (Genao et al., 2003). Emphasis was given to being practical and flexible to help address the social or logistical issues encountered by participants. For example, the issue of transport has previously been recognized as a barrier to service access, and an explanation for non-attendance at appointments (Lau et al., 2012). Suggested measures such as provision of community buses, outreach services, home visits or telemedicine have been used in other areas of health and may facilitate genetic health service provision for Indigenous clients (Elliot et al., 2010; Lau et al., 2012). While these measures will be constrained by resources, the authors encourage services to consider discussing the specific access issues for Indigenous peoples in their own areas. Participants also emphasized flexibility in their approach, which has been advocated in qualitative research with Indigenous peoples, as well as case reports by health professionals (Lau et al., 2012; Schofield et al. 2011). Participants tended to be ambivalent about Indigenousspecific cultural training. Many acknowledged the value of such cultural awareness training for highlighting particular attitudes or beliefs of Indigenous clients. But conversely, there was a strong sense that real learning only occurs through the experience of doing multicultural genetic counseling. It could be that this parallels the ambivalence participants had towards the question of difference. Perhaps identifying a need for Indigenous-specific training programs comes with a similar level of discomfort with identifying specific counseling needs. Regardless, it is important for health professionals to be confident in the training they have already received to manage sensitive (cultural) issues, such that they can learn on the job, but also to engage with specific training where it is available. Where professionals felt ill equipped to manage a cultural or practical issue, they presented the most valuable resource as Aboriginal health professionals, namely Aboriginal health workers, community support workers and hospital liaison officers. An Aboriginal health worker is a para-professional

Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals

role designed for Indigenous people providing health services primarily in community-controlled health services. “Indigenous support workers” refers to a range of roles within hospitals and community-controlled health services with titles such as “Indigenous cancer support worker” and “Indigenous mental health support officer.” All participants were aware of teams in their workplaces that provided such support, and recognized the potential value for facilitating service provision. Aboriginal health and liaison workers’ ability to minimize cultural and communication barriers in health care settings, due to community belonging, has been previously documented (Abbott et al. 2008; Read, 2006). We recommend collaboration between genetic health professionals and such support workers to assist with both the practical and cultural needs of Indigenous clients. Practice Implications As well as contributing to the genetic counseling literature, this research has broad and important implications for genetic counseling practice. It highlights various aspects of working with Indigenous clients that genetic health professionals may need to be aware of. It is not intended to be prescriptive; instead it is intended to encourage genetic health professionals to engage with ideas of culture, difference and individual variation in their work, particularly for Indigenous Australians as a population group. Likewise we have shown that engaging with Indigenous support workers and liaison officers may assist professionals in their practice. This research could also help inform policy or development of bestpractice guidelines for working with Indigenous Australians. Study Limitations This study used a qualitative approach with a small sample. The goal was to understand a range of experiences in depth. Therefore caution should be taken to not generalize the results too broadly. The method of recruitment made it difficult to calculate the proportion of Australian genetic health professionals who participated, or to know whether other genetic health professionals with experience working with Indigenous clients were missed. However, given Indigenous Australians make up 2.5 % of the Australian population (Australian Bureau of Statistics, 2010) it would be reasonable to expect that a similar proportion of genetic health professionals would have experience working with them. At the time of publication there are 370 genetic health professionals and associated members (including students, researchers and social workers) registered with the Human Genetics Society of Australasia, the main professional body for human genetics health practitioners in the country. Therefore the expected number of professionals with such contact would be approximately 10. This is consistent with the results of recruitment detailed above. Although the definition of

Indigenous people is widely understood as a combination of selfidentification, Indigenous ancestry and community acceptance, the interview schedule did not specifically assess whether researchers and interviewees were drawing on the same definition. The authors also acknowledge that all data presented are from the viewpoint of westernized health professionals and utilized western methodologies. Empirical research on genetic health services from the perspective of Australian Indigenous patients has not yet occurred and this study does not address that. Research Recommendations This study may provide a basis for a tailored approach to future research of genetic health service provision for Indigenous Australians. Future research should address this topic from the perspective of Indigenous clients themselves. Another avenue for research would be to compare Indigenous populations with other marginalized populations, and with populations that have not experienced discrimination, in order to understand the interaction between population history and context and the provision of genetic health services. Future research could also include investigating the use of genetic literacy tools for Indigenous people on a local and international level.

Conclusion The findings of this research have provided insight into Australian genetic health professionals’ perceptions of culture and difference in their work with Indigenous Australians. While there were assertions that the counseling needs of Indigenous clients differ, there were also assertions that they are the same. Many participants were reluctant to generalize the needs of their Indigenous clients, instead advocating an individualized approach, consistent with the basic tenets of genetic counseling (Evans, 2006; Veach et al. 2003; Weil, 2000). However, taking time to build rapport, recognizing different family structures and decision-making processes, as well as socio-economic disadvantage were all identified as important factors. Overall, participants encouraged practicality and flexibility when providing genetic health services to Indigenous Australians. Indigenous support workers and hospital liaison officers were seen as valuable resources for effective service provision.

Note 1. The University of Melbourne: 28.02.2012, Ethics ID 1136767. Royal Brisbane and Women’s Hospital: 06.04.2012.

Kowal et al. Acknowledgments This study was completed in partial fulfillment of the requirement for the Master of Genetic Counselling at The University of Melbourne/Murdoch Children’s Research Institute. This research was supported by the Victorian Government’s Operational Infrastructure Support Program. Emma Kowal is supported by an Australian Research Council Discovery Early Career Researcher Award (DE120100394). Conflict of Interest Authors Emma Kowal, Margaret Sahhar, Ivan Macciocca, and Lyndon Gallacher declare that they no conflict of interest. Human Studies and Informed Consent All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (The University of Melbourne, the Royal Brisbane and Women’s Hospital) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants included in the study Animal studies No animal studies were carried out by the authors for this article.

Appendix: Interview protocol Participants will be given the opportunity to share all aspects of their experience of working with Indigenous Australians. Therefore the flow of the interview will be dictated largely by the participant. The interviewer will use the following prompts, in no particular order, to guide the interview as necessary. The interviewer will begin by discussing the purpose of the interview and gain audio-recorded verbal consent for the interview to take place and be recorded. Introduction • So, what is your position? (Genetic Counselor or Clinical Geneticist) • How long have you been practicing? Where are you currently practicing? What fields/sub-specialties do you/have you practiced in? (eg. general, cancer, pediatrics, prenatal) • Can you tell me a bit about any experience you have had working with Indigenous Australians? • In what contexts have you provided genetics services to Aboriginal and Torres Strait Islander people? (Hospital, general clinic or Indigenous-specific, town, state, rural/regional/ remote) Topic 1: Do Indigenous Australians have specific genetic counseling needs? • Thinking about the consultations you have had can you tell me about similarities and differences compared to other consultations? Do you consider that Indigenous Australians have specific counseling needs? Can you give me a/some specific examples? Were there any challenges associated with those consultations? If so, can you tell me about them? • Are there particular aspects of Indigenous culture that you find yourself needing to attend to in the context of genetics? Are there any particular considerations you need to take into account?

• What do you understand by the term ‘cultural competency’? What do you think it means in the context of genetic counseling for Indigenous Australians? • What is your perception of your Aboriginal and Torres Strait Islander clients’ feelings about the usefulness/relevance of genetics for their health? We are looking for a range of experiences so don’t feel that you need to generalize. Topic 2: Are Genetic Health Professionals adequately trained and resourced to provide services to Aboriginal and Torres Strait Islander peoples? • Thinking about the first time you worked with Indigenous Australians, did you feel prepared to provide appropriate care? How well/able do you currently think you are to give such care? Can you give me an example. • Do/did you use any tools or resources to assist you with providing these genetics services? If so, what are they? If not, what resources would you consider helpful? • Have you ever undertaken any specific training in relation to working with Aboriginal and Torres Strait Islanders? If so, can you tell me about it? If not, what type of training do you think should be offered? By whom should this training be offered? • How do you feel about this research being conducted? The interviewer will close by thanking the participant and making them aware of the available debriefing options.

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Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals.

Indigenous populations are thought to have particularly low levels of access to genetic health services, and cultural issues may be a contributing fac...
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