Not just bricks and mortar: planning hospital cancer services for Aboriginal people

Consultation process

The research informing this design project involved a systematic collection of data, including interviews, from a range of individuals where findings were presented in a considered and rigorous manner[9, 15]. Detailed information included efforts to build trust and engage respectfully with Aboriginal community members. Such rich information was unlikely to be gleaned from a two-hour community meeting at which the voices of Aboriginal people may not be adequately heard, even if they did attend and actively participated. However, one-off meetings of this type may not be held at a time or place suited to Aboriginal stakeholders so their insights into cancer services by reason of their own or close family members' personal experience of cancer, may not be forthcoming. What is offered as a genuine opportunity for Aboriginal engagement by health planners might be considered as tokenistic by those concerned about meaningful and respectful Aboriginal consultation.

In responding to the request to provide information, we first advised the planners of the need to have direct input from Aboriginal people. Consulting with key stakeholders in the Aboriginal community is a crucial part of the planning process to identify cultural needs and ensure they are met within the parameters of the service delivery and building project [7]. A daytime meeting was convened, and attended by a number of Aboriginal people (females only) who were all involved in health care delivery, including two who were Indigenous program officers within the population screening programs for cervical and breast cancer. In addition, the planners invited Aboriginal people (along with the general population) to have input through a Community Forum held one evening at a Community Centre where senior officials of the Department of Health involved in the planning process were to attend to listen to community views. Community members were also invited to send comments to the planning group via e-mail. The question posed by the planners was "From the perspective of Aboriginal cancer patients, what are the issues that you believe need to be addressed?" They were also interested in knowing about how the Aboriginal community wanted to be consulted on these issues as the project unfolded, a question that could only be responded to by the Aboriginal community.

The study was approved by four Human Research Ethics Committees, including the Western Australian Aboriginal Health Information and Ethics Committee.

Data collection

The aim of the broad study of which this was part was to identify Aboriginal people's views of the factors affecting Aboriginal participation in cancer care including their beliefs about cancer and experiences of cancer care. Briefly, 30 in-depth interviews with urban, rural and remote Aboriginal people affected by cancer were conducted between March 2006 and September 2007. Recruitment occurred through key contacts of the researchers, community organisations working in Aboriginal health and via health professionals in primary or tertiary care, with snowball recruitment where initial participants recommended others as candidates for the study. Interviewees were adults (7 males, 23 females) from urban (11) and rural (19) areas and included Aboriginal cancer patients and survivors (14) and family members (16) of people with cancer or who had died from cancer. All participants could speak English and gave written informed consent. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers.

Data analysis

NVivo7 software was used to assist data management and analysis. Participants' narratives were divided into broad categories to allow identification of key themes and discussed by the research team. Feedback sessions with available participants assisted clarification of whether emerging themes were an accurate reflection of participants' experiences.

For the purpose of this paper, information from interviews relevant to buildings and other aspects of service planning was extracted, discussed within the research team and presented at a meeting with service planners which included the participation of a number of Aboriginal people. The major themes are presented below and then discussed in the light of existing literature around hospital design features around culturally competent care and only with this report focusing mainly upon how these findings should be interpreted in cancer service planning.

Recurring Themes

It is important firstly to acknowledge the diversity of Aboriginal peoples and therefore that a range of views will be expressed on any topic. Our analysis concentrates on recurring themes expressed by many or a group of participants.

Emerging from the data were five discrete but interrelated themes describing concerns about the hospital environment as expressed by Aboriginal people: (i) being alone and lost in a big, alien and inflexible system; (ii) failure of openness, delays and inefficiency; (iii) practicalities: costs, transportation, community and family responsibilities, (iv) the need for Aboriginal support persons; and (v) connection back to their community. Thus, instrumental drivers in participants' decisions to access and negotiate with the health care system were family and support systems and although the hospital environment was important, it was relationships that emerged as crucial to access.

Potential solutions and currently effective programmes

While it is well documented that environmental factors can increase anxiety and stress [16], buildings and services can be designed to be less intimidating, more culturally respectful and conducive to healing thereby increasing patient satisfaction and attendance rates [7, 19]. Many respondents described the hospital as a big and unfriendly environment - symbolised by the building itself - and a number of people felt alone and lost when they first arrived. In at least one tertiary hospital in another state, an Aboriginal Health Unit, "a place where you can come for a yarn, cuppa or just sit quietly" is centrally located and "committed to providing any support possible in assisting Aboriginal and Torres Strait Islanders and their families" [20]. This service can welcome Aboriginal people from elsewhere, as well as provide a presence and friendly face to assist orientation and direction to the relevant department of service. Its prominent location provides important symbolism that Aboriginal people are welcome and that Aboriginal people work at the hospital, as well as offering a practical service through the availability of advice from people who understand Aboriginal people and the fears that they might be experiencing on such a visit.

In terms of hospital care planning, Aboriginal families want to be able to support their loved ones when they are sick and away from their home - particularly important given the reputation that many mainstream hospitals have for not providing culturally safe care [21]. These sentiments echo those reported by others [22, 23] and are not unique to Aboriginal patients [24, 25]. It is institutional policies, organisational culture and personal interaction as much as space that make Aboriginal families feel unwelcome. However, incorporating cultural elements into the design process is also important as many hospital rooms may currently be too small to accommodate extended Aboriginal families. In the course of the research many participants commented that non-Aboriginal service providers may not understand the significance of restricting visits to the immediate family given that an Aboriginal person might have raised nieces and nephews who are considered as his or her kids too. Our findings suggest that restricted visiting add to the stress of family illness and can create friction in the family. Moreover, there is no service that assists with finding accommodation for visiting Aboriginal families, many of whom have travelled considerable distances by car over several days to provide the emotional and caring support for the person affected by cancer. Even if provision of accommodation for extended family is beyond the remit of a hospital Cancer Unit, it is important for Aboriginal patients' cancer care to plan for co-location of reasonable and affordable accommodation for families so they can help support the patient in their cancer treatment. In discussion with people who have been involved in planning new hospitals about these findings, concerns were expressed that even when the need for more room is recognised early on in the hospital planning process, a preoccupation with escalating hospital building costs may see room sizes reduced back to the bare functional minimum. Such changes neglect important aspects of psychosocial care in a way that impacts particularly hard upon Aboriginal patients. It highlights the tension between the economic bottom line with a 'functional minimum', and creating a hospital environment that promotes healing for Aboriginal patients -the irony being that in the longer term it may add to health care costs and accentuate disparities in health outcomes.

Recurring direct and oblique references were made by many participants about their love of the bush and its importance to them. Often this was related with the area from which they had come and the association of bush with home, even for those currently living in urban areas. However, given Aboriginal people's connection to and love of Australian landscape, it would seem reasonable to plan for services that allow patients visual and physical access to an inviting bush landscape. Wilcannia Hospital in New South Wales has been designed to suit local Aboriginal people, and has been lauded as effectively engaging the community in planning and building. The building has worked to effectively to incorporate the Darling River which has spiritual and cultural significance for the local Barkindji people both in its architecture and by views of the river patients have from their rooms [26]. Aboriginal-focussed design was undoubtedly not the only remit of those involved in this Hospital Cancer Unit planning, but possibilities for a design that embraces nature and is sympathetic with the natural environment should be considered, arguably for the benefit of all patients not just for Aboriginal people [19]. There is good evidence that access to views of the natural environment can help reduce hospital stays and the need for potent drug relief.

The literature provides evidence for the physical space in which health care is practiced - including factors such as light, music, architecture and colour - influencing the impact of the healing environment. Aesthetically pleasing and appropriately constructed buildings have been shown to help reduce anxiety, pain and infection rates in patients. The use of colour, texture and form to create pleasing environments and the creation of more homelike environments are recognised as important components of treatment and healing [20] and potential environments in which to promote health promoting behaviours. Despite the considerable research supporting both the benefits of affirmative design in the internal and external environments of health care facilities, there is sparse data relating to Australian Aboriginals. Further, based on the findings of this study, it is evident that the physical environment is only a part of the solution in improving health care for Aboriginal people [9, 11]. Others have commented upon consumers identifying a need for changes in attitude and roles with a need to shift from one-off paternalistic attitudes of staff towards partnerships that really engage patients effectively in their care [24]. The attitudes expressed by our Aboriginal participants are not unique to them, but reflected broadly in other literature.

A way forward

In order to address health disparities, a dedicated effort to engage Aboriginal people in sustainable and culturally appropriate cancer service planning is needed, an initiative successful in other areas of Aboriginal health care [7, 26]. This raises the question of whether it requires that Aboriginal people have a better understanding of western views of cancer and modern cancer treatments. Given the Aboriginal view of health as extending beyond the individual and encompassing: "spiritual, cultural, emotional and social well-being (achieved through)... healthy, interdependent relationships between families, communities, land, sea and spirit" (quoted in, the views of participants are not surprising. Participants' responses also pose the question whether non-Aboriginal health care providers engage sufficiently with an Aboriginal approach to health care. Geffen argues that optimal cancer care balances the need for scientific knowledge and rational thought with the need for wisdom, kindness, compassion and love - "what people ultimately want most from their healing environment is meticulous medical care delivered with genuine love, caring and compassion. They want to be seen, respected, and accepted for who they are as individuals. These factors are far more important than the physical trappings of the centre...". Geffen's comments were not made in relation to Aboriginal people, but emphasize that improved provision of care for Aboriginal people will have flow-on benefits for all patients. It is perhaps unsurprising that so many of the issues raised by participants are already documented as design principles which impact on psychosocial and physical health outcomes [19].

The context of service planning to establish or expand a service, inevitably comes with a focus on issues related to architecture and building. Critical issues did emerge in our analysis that could be addressed by hospital planners: hospital rooms that accommodated large families; the opportunity for families to stay in safe, low cost accommodation close to the treatment centre and ready accessibility by public transport and parking; the location of an Aboriginal Welcome Reception Area at the entrance to the hospital with Aboriginal staff available to assist patients and family members effectively negotiate the hospital system; improved signage; considerations around privacy and sensitivity to gender issues. There was also a case for a building aesthetic that is more sympathetic to Aboriginal people in ambience, enabling views over or connection to Australian bushland. Many issues that relate to the buildings where cancer treatments occurred were raised in interviews, but they were overwhelmed by those that related to the social, family and human aspects of caring, including better linkages to primary care. It will remain essential to ensure good links and transition with primary health services and appropriate cancer support. The more recent announcement by the Australian Government of regional cancer units to provide care closer to home for rural citizens is very welcome and particularly likely to benefit Aboriginal people provided the design and service aspects incorporate the aspects of design and service delivery as described by them and captured here.