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 . 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.
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.
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.
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.
Alone and Lost: A Big, Alien and Inflexible System
Aboriginal participants reported finding the medical system cold, indifferent and as unwilling to tolerate approaches to treatment that were considered different to the traditional biomedical model. Many reported the absence of warm interpersonal interaction which left them feeling that staff were insensitive and lacking in warmth. Comments made in relation to cancer services were the need for big hospitals to have more understanding and compassion about people's situation. The current services were considered too inflexible and formal to function well for Aboriginal people. For example, being "moved around" by the medical system contributed to the environment being considered cold and isolating. This accentuated the disconnection from 'place' and cultural places that was associated with the hospital and therefore isolation from country and home.
The alienating environment reported by most participants was felt most acutely by those from rural and remote areas and contrasted with their sense of belonging in the bush and close bond to country. The sheer size of cancer treatment services in tertiary hospital settings was unfamiliar and overwhelming to people from rural and remote areas and created difficulties:
The first time they have probably even been to Perth [capital city of Western Australia] is to go down to a big square hospital, a big cement building. Is it any wonder they die? (Rural female family member)
Another participant described the hospital as one big grey building stating that "We were just about crying and so was he [my dad]. He wanted to get back to the bush." Being given a map of the hospital was not helpful; to rural participants, the tertiary hospital itself was a big city.
Low literacy was acknowledged as another challenge observed by participants, even when it didn't directly impact upon them. For example, one participant described that although she felt she was okay because she could read, it was difficult for others without these skills. She considered that hospital staff were often unaware of these challenges:
... you know some of the elders and some young people who are stressed out and walking around trying to find B block or whatever, the radiation centre, yeah; it's hard. If the line is not there or the name is not there, you can't find the place. This is the hospital. (Urban female family member)
The hospital was thus seen as symbolising white dominance, where Aboriginal cultural needs were neither recognized nor met. The absence of a welcoming environment was evident from the time participants first arrived, lacking symbols that showed respect of Aboriginal culture such as appropriate photos, flags, and signage.
Many criticisms of current services were that they did not cater for visits from a big family nor did staff understand the importance of this, a theme reiterated by most participants. The importance of family support and having children and grandchildren around at a time of great stress was in conflict with hospital policies such as only allowing two visitors at a time and being generally unwelcoming of big families and was not reflected in the design of the building. For patients, this often meant they did not feel comfortable or secure there and that hospitals were not adequately supportive of their needs:
Imagine if that was, you know, an Aboriginal women from one of the remote communities who couldn't have her family down by her side, you know, to be with her and to talk with doctors and, you know, to explain what was happening. (Urban, female family member)
The problems encountered in hospitals were in contrast to that described by one participant who was appreciative of the arrangements of a particular hospice and how it embraced family involvement:
They supported us as a family in every way. For if we wanted to stay over, we could stay over. They have got a kitchen...every family member of the patient ...they could use that any time day and night, 24 hour services. There was no restriction. All you have to do is go and ring the bell at 2 o'clock and you are in...and my family in the last two weeks of her life basically lived there and had rosters off. She was never left alone. (Urban, female family member)
This suggests that a design that enables family members to be self catering and cook for themselves enables a familiarity and homeliness that helped with them feeling more comfortable and welcome.
The importance of family involvement was frequently reiterated:
"Yeah, well, that's our culture. Like, when someone is close to passing away the whole extended family will come. That's been like that for years and years. You can't change that, you know" (Urban, female patient).
At a time of great stress and uncertainty about their future, Aboriginal people with a cancer diagnosis expressed that they wanted their family close. Enabling large Aboriginal families to be involved in providing care and support to their family member was a key issue raised in relation to hospital-based care. While hospital design and policy could help with this, broader inter-sectoral collaboration is needed to ensure health services respectful of Aboriginal cultural needs .
Participants also commented on frequent staff turnover. Personal relationships are important for Aboriginal people, and multiple changes of staff and lack of continuity of care was considered to indicate a lack of caring. Other comments were that there was too much writing, that the care was too systematic rather than personal "you are treated as numbers", and that the approach was theory-based rather than person-centred.
While not universally discussed, a number of participants mentioned the desire for traditional Aboriginal medicine and healers as playing an important role alongside more "western" medical interventions. The separation from country and those with similar cultural beliefs contributed to this, but opportunities to use ceremonies such a smoking to cleanse the spirit and access to gardens in which plants considered to have medicinal or other significance could be considered. Not liking the food was often raised, and again both design and service arrangements could be adopted that helped address this issue.
Failure to be Open, Delays and Inefficiency
It is important to appreciate the context of distrust and dislike many Aboriginal people have of western institutions . Many participants reported their frustration with delays in the hospital system. Given the aversion that most people expressed to being in hospital, their distrust of them and desire to return home to family and country, delays in treatment and discharge were considered particularly significant. Participants commented that they felt their own and their family members' concerns were not listened to or acknowledged by staff, with some reporting an unwillingness of medical staff to be forthcoming about the severity and prognosis of their illness:
They would upset her and she would ring us and say, 'Can you come in? The doctor has just been in'. Then we would ask her, 'Well, what's wrong? You know, what did the doctor say?' 'Oh, I don't know; I can't remember', yeah, because they talk in technical terms, you know, medical terms. Patients can't understand medical terms. (Urban, female family member)
Communication emerged as a major issue in the context of cancer care in the hospital setting and has been reported in detail elsewhere . While for a proportion of Aboriginal people English is not their first language, the above extract highlights that jargon is yet another barrier to communication. Given the dislike that many Aboriginal people expressed of being in an alien hospital environment and their desire to return to family and country, communication issues are of heightened importance. For example, what may be considered within modern hospital practice as risk management and good care in terms of checking and re-checking was reported by some participants as being "inefficient staff" and "management problems". This epitomises a risk management approach in which the priorities of management are dominant, with failure to consult or act upon the priorities of Aboriginal people. The experience of hospital based care in such instances, is unlikely to be addressed by hospital "design" in a conventional sense, and requires a different approach to improving the Aboriginal person's experience of cancer treatment. This approach needs to be at multiple levels to improve many aspects of an Aboriginal person's experience of cancer treatment and include design measures that ensure the hospital environment is more conducive to healing.
Practicalities: Cost, Transportation, Community and Family Responsibilities
Managing the practical issues of daily life such as money, transportation, community responsibilities and child care needs affected people's ability to attend clinics and follow up on treatment. Financial issues and the expense of treatment were other concerns raised by all participants, as was cultural safety. The cost and availability of safe and Aboriginal-friendly accommodation was also important for rural patients. Negotiating getting to and within the hospital system, understanding what is happening and likely treatment options were regarded as vital to addressing the key barriers to Aboriginal people entering the hospital system:
...especially a lot of people when they come from the community, they don't know what they are gonna face. Yeah, like... where they are gonna stay, how they are gonna support themselves for six weeks, and if their family is gonna come. And...A lot of support should come from within the hospital as well, especially social workers, if people need it. (Remote, male patient)
A consequence of not addressing these needs may be failure of Aboriginal people to take up or continue with treatment. As one female family member living in Perth said, "I know of Aboriginal women like from remote communities who have made decisions not to come down to Perth for treatment because of the way that they are treated here." This illustrates the way that stories about bad experiences of Aboriginal people are talked about and shared.
The Need for Aboriginal Support Persons
Another recurring theme raised by Aboriginal people was the need to have Aboriginal support people among the health care team - simply the inclusion of Aboriginal people in the health care team would equate the service as being more welcoming. Participants spoke of how alienating and disempowering the hospital environments was for Aboriginal people, with them often lacking the confidence to speak up. The health care team was seen as only treating the disease and not adapting the model of care to suit Aboriginal patients "they want us to fit into their culture. They want to take us from our box and put us in their box" (urban, female family member), yet participants craved understanding about their needs, in an environment that was caring and friendly. It was believed that Aboriginal staff would have sensitivity and understanding and that simply spending time with them would show empathy. Underlying this was a belief that relationship is important and Aboriginal patients want one-to-one contact with someone who genuinely cares about them. Aboriginal liaison officers were seen as facilitating logistical aspects of care and assisting Aboriginal patients with negotiating the hospital system, understanding what is happening and likely treatment options, and addressing the key barriers to Aboriginal people entering the hospital system, a theme that has been identified in other research [12, 13, 17, 18]. Aboriginal support staff could also advise about resources that were available and help with the logistical needs of people coming to the city for treatment. The importance of an Aboriginal staff member within the health care team and the many different roles that they can fulfil includes ensuring that patients understand treatment plans, possible outcomes and responsibilities and that medical staff are culturally sensitised and can deal with patients and their families sensitively and with compassion.
Connection to the Community
Many respondents felt that hospital treatment should be more connected with the community as part of a broader Aboriginal outreach program incorporating communication, support, community contact and relationship-building activities and initiatives. A presence in the community was seen as an important component of educating people about available services. Involving the Aboriginal community would help spread the word and being seen actively doing something was important in gaining the trust of the Aboriginal people. Part of increasing people's willingness to use and access the hospital was likely to be increased by hearing stories about individuals' experiences in the hospitals, and that their treatment was good. A major message was to make time for people and to use information from local sources to ensure appropriate supportive care. Having staff who worked between the hospital and the community was proposed, with providing resources and facilities for more than just medical treatments considered as important to build trust and confidence with communities.