The ethical and methodological challenges of social work research with participants who fear retribution: To ‘do no harm’

Abstract

This article discusses some of the ethical and methodological challenges experienced throughout a doctoral study focusing on boarding house residents in Sydney, Australia, particularly participants’ fear of retribution. Informing the research were forty interviews with a range of participants including current and former licensed boarding house residents, proprietors of boarding houses, and staff of community organizations and government agencies providing support services or monitoring the conditions in boarding houses. The article discusses and analyses the complexity and understandings of anonymity, confidentiality, informed consent and the meanings and implications of de-identification. Some of the strategies to address these complexities are presented and are significant for qualitative researchers, particularly doctoral and early career researchers.

Keywords

Anonymity boarding house confidentiality de-identify ethics informed consent

Introduction

From the mid-twentieth century ethics have played a significant role in all social research. Since this time social researchers have been required to meet ethical standards with particular focus on participants’ voluntary participation, informed consent, confidentiality and anonymity; and to ensure that participants do not experience harm as a result of their participation in research. These ethical principles form the basis of Institutional Review Board guidelines (such as Universities Human Research Ethics Committees), national policy and legislation, and ethical standards of professional associations (such as the Australian Association of Social Workers).

While there is widespread acceptance, or at least compliance with, the ethical principles that underpin social research, how these principles are interpreted and implemented by Institutional Review Boards (IRBs) has been contested from within the qualitative tradition. Shaw (2008) argues that qualitative research methods have been constrained by a reductionist approach to ethics and an over-reliance on deontological codes. This reductionist approach focuses our concern with ethical standards to the design phase of the research and ‘getting ethics done’ rather than constructing ethical review as a process and emphasizing the need for ongoing engagement and critical reflection.

This article considers the complexity and understandings of these ethical considerations when researching with participants who fear retribution, including vulnerable and marginalized participants. It considers strategies to meet the ethical principle of non-maleficence: to ‘do no harm’.

Background

The principles of deinstitutionalization have underpinned mental health and disability policy in most industrialized countries over the last forty years (Bigby and Fyffe, 2006; Emerson, 2004; Richmond and Savy, 2005). These principles include the right to live and participate in the community in non-congregate accommodation. The first wave of deinstitutionalization in New South Wales (NSW), Australia, focused on the downsizing of the ‘back wards’ where people left large, geographically isolated psychiatric hospitals and moved into the community (Bigby and Fyffe, 2006). At this time some people returned to live with family and others moved to independent accommodation, however the majority of people relocated to other types of institutions such as boarding houses, hostels and nursing homes (Bostock et al., 2001; Emerson, 2004; Greenhalgh et al., 2004; Scull, 1977; Warner, 1989).

Boarding houses are a low-cost, for-profit, congregate accommodation option where residents have the right to occupy a room and access shared facilities such as bathroom, kitchen and laundry (Greenhalgh et al., 2004). In NSW, if two or more people with disability who require support live in a boarding house, the proprietor is required to have a licence. This licence is administered and monitored by the state government agency, the Department of Family and Community Services (Ageing Disability and Home Care, ADHC) under the Youth and Community Services Act 1973 (YACS Act) which outlines basic health and welfare requirements.

The licensed boarding house sector in NSW has been subject to widespread scrutiny over the past three decades. Numerous inquiries have been damning in their identification of serious human rights violations, including allegations of physical and sexual assault of residents, inadequate healthcare and food, and the withdrawal of ‘privileges’ such as cigarettes, food and community access (Horin, 2011; HREOC, 1993; NSW Government, 1993; NSW Ombudsman, 2011). There has been a significant decline in this sector from the mid-1990s when there were 194 licensed boarding houses for 3,336 people. In mid-2012, there were 31 licensed boarding houses that accommodated 675 people (ADHC, 2012). This decline is largely attributed to ageing proprietors and the realization of capital assets through gentrification. There is also a significant unlicensed boarding house sector in NSW; 455 boarding houses accommodating over 6,000 people (NSW Ombudsman, 2011). This sector primarily provides board and lodgings to people who are unable to access other types of accommodation due to poverty, drug and alcohol addiction or a criminal record. Practitioners and residents also assert that many of the people living in the unlicensed sector meet the criteria defined within the YACS Act and thus a large number of the unlicensed sector are operating outside of legislative requirements (Newtown Neighbourhood Centre, 2003).

Both the licensed and unlicensed boarding house sectors play an important role in the provision of low-cost accommodation to people living in Sydney, a city identified amongst the most expensive cities in the world to live. The role is significant as it interfaces and intersects with, and arguably often replaces, the disability and mental health service systems, homeless services and the public and private rental markets.

Relevance for social work

This study has several important findings relevant for social work. Social workers play a vital role in assisting people access housing and accommodation support. This encompasses referrals from corrective services, psychiatric and general hospitals and homeless services to boarding houses, often as an option of last resort.

As a profession committed to social justice, social workers need to be actively involved in policy, research and advocacy in the area of appropriate housing models that meet a person’s needs and upholds human rights. This study raises important ethical and methodological challenges when researching with vulnerable and marginalized participants, particularly in a contested policy area. The strategies used throughout the study to address these challenges are presented.

The study

The central research question of this study was to establish to what extent licensed boarding houses enact the human rights principles of deinstitutionalization and contribute to the quality of life of residents with intellectual disability and residents with mental illness. In order to answer this question, case study methodology was utilized (Silverman, 2005). This methodology was appropriate in capturing the complexities of the case of licensed boarding houses in Sydney (Stake, 2005). It provided for ‘experiential knowledge of the case and close attention to the influence of its social, political and other contexts’ (Stake, 2005: 345). This approach acknowledged my previous practice experience as a social worker and tacit knowledge of mental health, intellectual disability and the licensed boarding house sector (Fook, 2001). A variety of data collection methods were used including semi-structured and unstructured interviews, literature review and policy and legislative analysis.

Informing the research were forty interviews with a range of participants including unstructured interviews with seven current and three former residents, three licensed boarding house proprietors, and 27 staff from community organizations and government agencies; ten of whom hold a social work qualification. By far the majority of participants were staff of community organizations and government agencies, which reflects some of the challenges in recruiting current and former residents to participate in the study (Table 1).

Table 1.

Number of Participants.

Participant type	Participants (N)
Licensed boarding house resident	7
Former licensed boarding house resident	3
Boarding house proprietor	3
Staff of community organization	15
Staff of government agency	12
TOTAL	40

The majority of interviews were audio-recorded and transcribed using NVivo, a qualitative research software program. Following each interview field notes were compiled recording initial impressions and themes that emerged from the interviews. The transcribed interviews were given to participants for their endorsement and editing. The transcripts were scrupulously read and preliminary themes identified and allocated codes. To ensure consistent coding, reliability and rigour, a focus group was held with academic and practitioner representatives. De-identified transcripts were presented to the group and group members were invited to identify themes and codes that best represented the text. These themes and codes were matched against my original thematic analysis and coding and adjustments made.

Making the move from social work practitioner to social researcher

My decision to undertake doctoral studies in the area of licensed boarding houses emerged from fourteen years practice experience working with people with mental illness and intellectual disability including direct practice, policy and oversight roles. It emerged from a place of disquiet that such an accommodation anomaly existed within current legislative and policy frameworks. The transition from practitioner to social researcher presented some challenges. I felt that my social work qualification and subsequent practitioner research in community and government organizations had prepared me well in terms of the ‘how to’ or process of social research. What I did struggle with was grappling with the shift from social work practitioner to social researcher focusing on a social issue where I believed significant policy, legislative and practice changes were required. Through my practice experience I had knowledge of the human rights violations, exploitation and marginalization of people living in licensed boarding houses in NSW. I wanted to conduct a study in this area to try and make sense of how this accommodation model was acceptable or found legitimacy in the twenty-first century. I wanted to gain further insight into the experiences of residents and position these experiences as a social justice issue. One significant challenge to my undertaking this research was ensuring my prior experiences did not bias me and thus prevent me from presenting balanced findings. My experience in government organizations had certainly tarnished my undergraduate valuing of interpretive inquiry: I found myself attempting to ‘do’ qualitative research through a positivist lens. Using the process of critical reflection and engagement in supervision I was reminded that ‘qualitative researchers stress the socially constructed nature of reality, the intimate relationship between the researcher and what is studied, and the situational constraints that shape enquiry. Such researchers emphasize the value-laden nature of inquiry’ (Denzin and Lincoln, 2005: 13). Through an interpretive lens my practice experience and positioning was valued, however they needed to be acknowledged for both ethical and methodological reasons.

Ethical considerations in the planning phase

During the initial phase of conceptualizing this study a number of ethical issues required careful consideration. Having been involved with several practice research projects I was aware of the central role and processes mandated by ethics committees and the need to obtain ethics clearance. The areas of initial concern included anonymity, privacy and confidentiality, voluntary participation, informed consent, duty of care, and storage and security of information. I was also aware of some of the additional ethical requirements when undertaking research with people with disability and people with mental illness and people in dependent or unequal relationships (NHMRC, 2007). An ethics application was submitted to the University’s Human Research Ethics Committee (HREC) and approval was granted. While I had obtained ethics clearance from the HREC, I remained unsure about my professional association’s ethical standards and requirements in relation to this project. Working as a practitioner researcher I understood the ethical requirements of my professional association, the Australian Association of Social Workers (AASW). In my new role as a social researcher, albeit a PhD candidate in the area of social work and social policy, the AASW’s role seemed to be ambiguous as I was no longer working in a direct practice role. Further advice was sought from my supervisors and from the AASW about my ethical obligations as a social worker conducting PhD research. While I was not engaged in practice research I was still engaged in social work research. My practice experience had provided specialized knowledge and understanding of the licensed boarding house sector and highlighted the vulnerability and marginalization of boarding house residents. Butler (2002) and others (such as Jacobsen and Landau, 2003) have argued strongly that social workers have a higher ethical duty by virtue of their knowledge and training, including a commitment to social justice. I considered I had additional ethical obligations, including the obligation to disseminate research findings to policy makers, as outlined in the AASW code of ethics (AASW, 2010).

Fear of retribution

In planning my research project, careful thought was given to how best to engage with and ensure that participants did not experience harm through their involvement with the study. This of course refers to the ethical principle of non-maleficence: to do no harm. While this is a central tenet of all research my awareness of the circumstances of boarding house residents and the actual and perceived possibility of retribution if residents were linked to this study, presented additional ethical considerations. My practice experience and social work training had highlighted the power imbalance and potential for exploitation of residents exacerbated by lack of housing tenure and tenancy rights (NSW Ombudsman, 2011). The majority of boarding house residents live within a culture of compliance, fear and punishment. Many have lived in other types of institutions such as psychiatric hospitals and endured similar conditions. I recognized the need to develop strategies that would ensure residents’ anonymity as the consequences of identification could be grave.

However, further consideration was required to acknowledge that other participants could fear retribution through participating in the research. Prior to undertaking this study I had not fully recognized the fact that many of my participants, including the 27 participants who were employed by community organizations and government agencies, and three boarding house proprietors were also constrained by their roles and feared retribution for participating in the research or making adverse comments.

Former and current boarding house residents

Strategic processes were developed to ensure former and current residents did not experience harm by virtue of their participation in this study. Residents were recruited to the study with the assistance of two community organizations that provided support services to people living in licensed boarding houses. I was invited by the organizations to speak at a social event with residents interested in the research, which provided the opportunity for residents to engage with me and seek clarification about the research.

My beliefs about residents’ fear of participation were realized during the recruitment stage of the research. The most common question that residents asked, was ‘will X (manager or proprietor of the boarding house) find out that I have been talking to you and what I have said’? They spoke poignantly of their fears about proprietors finding out that they had ‘talked’ and subsequent retribution including eviction, physical assault and the withdrawal of ‘privileges’ such as food or cigarettes.

These discussions reinforced the importance of ethics processes and ensured I revisited the strategies in place. Given the fear and gravity of potential retribution it was essential that participation would not cause harm. Indeed, it was my duty to ensure this when I recruited participants to my study.

In discussing these concerns with residents it was important that I outline the processes for upholding anonymity, the limits of confidentiality and ensuring that ‘consent’ was truly informed, including the identification and articulation of risks and benefits of participation. These processes enabled residents to tell their stories, while protecting them from retribution.

Proprietors of licensed boarding houses

Proprietors of licensed boarding houses were identified as essential participants in this study. Many proprietors had been operating their businesses for more than forty years following the implementation of deinstitutionalization policies. Several proprietors were formerly psychiatric nurses in the large, geographically isolated institutions.

Throughout the early phases of this research I identified my position in regards to licensed boarding houses with my supervisor. We discussed the importance of capturing the views of differently positioned stakeholder’s and indeed, this was a key strength of the case study methodology. However, this raised important ethical issues for me when considering proprietors as potential participants. I wanted to capture the authentic, uncensored experience of proprietors. Would it be ethical if I omitted to declare my positioning about licensed boarding houses and engaged in a manner that conveyed support for their business model and treatment of residents? Such an approach would surely generate honest and unguarded answers. Gans (1962: 44) argues,

If the researcher is completely honest with people about his/her activities, they will try to hide activities, they will try to hide actions and attitudes they consider undesirable, and so will be dishonest. Consequently the researcher must be dishonest to get honest answers.

Gans (1962) conclusions and valuing of deception are confronting half a century later, most probably because they challenge the deontological codes of ethics, which are highly influential in IRBs. What if such deception led to the closure of a licensed boarding house and the proprietor lost his/her business and livelihood? Would that be ethical research practice? If it resulted in the protection of vulnerable and marginalized residents surely consequentialism would support a case for such an approach. Do some research participants have greater rights than others? I concluded that although I did not support the model or the practices in licensed boarding houses, I owed a duty to proprietors as my research participants. I declared my position and clearly articulated the limits of confidentiality including my responsibility to inform the relevant authorities about breaches of licence requirements and abuse and neglect of residents.

While there is much conjecture surrounding boarding houses’ commercial viability and criticism about unethical strategies to maximize profits, it is fair to assert that the profit margin in running a licensed boarding house is not substantial. The proprietors that participated in this study sought the opportunity to ‘have their side of the story told’. Three proprietors agreed to participate in the study. These three were fairly representative of the population of proprietors including the length and terms of their licence, business models and professional backgrounds. They expressed concern about the repercussions of participating in this research, although their fears were very different from the residents. They feared losing their licences, livelihoods and reputations.

Staff of community organizations and government agencies

Fifteen staff of community organizations and 12 staff of government agencies participated in a semi-structured interview. These staff work in a variety of roles including mental health professionals, policy officers, program administrators, executive officers and direct care workers; 10 of these staff had a social work qualification. Many of the staff participants expressed their concerns about retribution if they were linked with the study. This was not an issue that I had anticipated in the planning of this project. Community workers expressed concern about funding renewal and exclusion from licensed boarding houses if they were linked with adverse comment about the licensing and monitoring framework and proprietors. Staff of government agencies also expressed similar concerns about their ongoing employment and relationships with senior staff.

Participation of government agencies in non-commissioned research

The Department of Family and Community Services (Ageing Disability and Home Care) was an obvious ‘potential participant’ for the research given its role in monitoring and licensing boarding houses in accordance with the YACS Act. Information about the research was provided to the department and an invitation extended for six departmental staff to participate in individual interviews. In order for the six staff members to participate in an interview, the department required the completion of a research proposal, ethics application and signing of a ‘Research Agreement’. This agreement included a clause that provided the department with a power of ‘veto’ over certain aspects of the publication and presentation of the research findings if the material was deemed ‘sensitive’.

Departmental officers expressed concern that comments tabled and my research findings may be adverse to the reputation of the department. Although I appreciated the department’s position, I did not sign the research agreement, as it would have compromised my ability to disseminate the research findings (including the ability to publish this article). I had not anticipated such barriers or considered the possibility that I could experience retribution for conducting this study, such as limiting access to research data or future research consultancies. Social researchers need to weigh up the importance of access to data, knowledge and resources of government departments with control over the dissemination of research findings (Pinkerton, 1998).

The challenge of anonymity

Anonymity is the assurance that a participant will not be linked with the study. It is the guarantee that the information provided would not be traced back to the participant. How do we ensure this as social researchers, particularly when participants fear retribution? How do we maintain anonymity without stripping away meaning in qualitative research?

Anonymity is achieved through removing or replacing direct and indirect identifiers of participants; removing the links between the participant and the data or information so that it cannot be re-identified. The Australian National Statement on Ethical Conduct in Research Involving Humans (NHMRC, 1999: 9) states, that

The process of de-identification can be irreversible if the identifiers have been permanently removed or the data has never been identified. These data are referred to as ‘de-identified’. It should be recognized that the term de-identified is used frequently … to refer to sets of data from which only the names have been removed. Such data may remain potentially ‘identifiable’.

This study highlighted the narrow definition of anonymity that researchers, including myself, often apply. Researchers often focus on the de-identification of personal information by removing a participant’s name and address. While such definitions and approaches to anonymity might satisfy Institutional Review Boards, I would argue, like Shaw (2008: 403) that ‘the reliance on codes alone risks compartmentalizing ethical aspects of research’.

Strategies to uphold non-maleficence

For many of the participants of this research, fear of retribution and the possibility of harm weighed heavily on whether or not they chose to participate in the study. These fears included eviction, physical assault, and loss of business, employment or funding. It was important that a range of strategies be developed to meet the ethical and methodological considerations. All of the participants identified anonymity as essential to their participation and to upholding non-maleficence.

Recruitment

Based on my previous practice experience in the area of licensed boarding houses, I was aware of the location of licensed boarding houses in Inner Sydney. While I had access to these addresses, I did not contact resident participants via their residential address as I considered this recruitment strategy could place ‘potential participants’ at risk of retribution from proprietors and such a strategy did not respect resident’s privacy.

As discussed earlier, two community organizations that provided support to people living in licensed boarding houses assisted with the recruitment of resident participants. Community workers provided participation information sheets and consent forms to interested residents. I was invited to a social event where interested residents were able to question me directly about the research. This recruitment strategy enabled residents to register their interest away from the boarding house in a safe environment. Resident participants were asked to nominate a location of their choice for an interview. These locations included a variety of cafes in Inner Sydney away from the boarding house with low likelihood of being observed.

All licensed boarding house proprietors were sent a letter that outlined the aims of the study and inviting them to participate in an interview. Three proprietors agreed to participate in an interview. One provided a tour of his boarding house and participated in a face-to-face interview. Two other proprietors participated in a phone interview. Prior to the interview I outlined my practice experience and my philosophical positioning on congregate models of accommodation. This was discussed as it was important to be transparent and for proprietors to understand with whom they were speaking and the lens with which I viewed their business. This was also important in meeting the ethical standards for informed consent.

Staff of both community organizations and government agencies were identified based on my previous work in this area. Letters were forwarded via email to executive officers who either participated in an interview or identified a delegate from their organization.

Staff of community organizations agreed to participate in the study, however several identified the importance of not being linked with adverse comments, particularly about their funding body, the ADHC.

Staff discussed that licensed boarding houses were a relatively specialized industry with a small number of community organizations providing support. Funding was based on short-term contracts and the continuity of the funding program was uncertain. At recruitment it was agreed that quotes that included adverse comment would not be recorded by staff or agency type in the dissemination of the findings.

Staff of government agencies also identified fears in making adverse comments about other government departments and the potential for impact on inter-departmental relationships. Through the ‘snowball sampling’ effect several departmental employees of ADHC made contact and asked to be interviewed ‘off the record’. While these interviews would have provided valuable data, NSW policy in this area stipulates that government employees need permission from a delegated officer to participate in research, discuss or share information or opinion that they have come across in their official duties. In the absence of this approval, interviews with departmental staff were not conducted as this would constitute a breach of the departmental Code of Conduct (2010) and the participants could be open to dismissal or disciplinary proceedings.

Informed consent

Potential participants were required to give informed consent in order to participate in this study. Given the identified and expressed concerns about retribution, and my practice knowledge of this possibility, it was vital that participants provide informed consent and were aware of the voluntary nature of their participation. This included the ability to identify the risks and benefits of participation.

It is essential that researchers consider the possibility that participants may never have been involved with research before. This has particular significance when interviewing participants who have lived experience of institutions, including boarding houses. This is not to advocate for a protectionist approach. It is incorporating ways that promote access and acknowledge the context of participants lived experience. In this context residents with mental illness and intellectual disability have often experienced coercive practices and thus informed consent needs to be considered as a process (Hugman et al., 2011). Eisner (1991: 217) asserts that researchers have an ethical responsibility as ‘advocates for the participants, raising questions that the researchers know should be raised in order for participants to make a competent assessment of the risks’. This is critical when participants lack power or ability to withdraw or to ‘obtain redress if they experience harm’ (Liamputtong, 2007: 4).

In considering the needs of my participants, particularly those with mental illness and intellectual disability, the following criteria were developed and applied in order to establish whether a participant was able to provide ‘informed consent’:

Following the provision of information, in an accessible manner, the person is able to describe what the research is about, that participation is voluntary, and has the option of withdrawing from the study at any time. The person should also be able to describe any risks or benefits of participation.

Does the person have a guardian? This may include a public or private guardian. If yes, consent will need to be obtained from the person’s guardian.

Consideration of information provided by staff of disability or mental health services that have experience working with the person.

If the person is unable to provide informed consent or the person’s ‘guardian’ or ‘person responsible’ does not provide consent, the person is unable to participate in the study.

In determining a person’s ability to participate in this study it was important to ensure that communication was adapted and appropriate to meet the communication needs of the person participating in the interview. My social work training and experience working with people with intellectual disability and people with mental illness enabled me to engage in ways that were meaningful for the participants. It was also important to ask a variety of open and closed questions in ‘Plain English’ to ensure understanding and reduce the likelihood of compliance due to perceived retribution, which is common for people who have experienced institutionalization (Barnes et al., 1999).

Confidentiality

Prior to participating in an interview all participants were provided with a participation information sheet that outlined that their anonymity would be maintained through the removal of direct and indirect identifiers. Participants were also informed about the limits of confidentiality including the need to provide information to the NSW Ombudsman or the ADHC (who administers the licensing regime for boarding houses) if information was provided that indicated harm to themselves or another person.

The limits of confidentiality were actualized during an interview with a participant who was a staff member of a community organization. This participant disclosed information about the alleged abuse and neglect of a resident living in a licensed boarding house. This disclosure posed an ethical dilemma between breaching the confidentiality of my participant and ensuring the safety of the boarding house resident. While there was a clear duty to report this information and ensure the safety of the boarding house resident, by identifying my participant I could expose them to possible retribution. I discussed this dilemma with the staff participant and we agreed on a course of action. I reported the information to the NSW Ombudsman without disclosing the identity of the participant. Thus, while I was required to break the participant’s confidentiality, I was not required to report the source of the information and therefore was able to uphold their anonymity.

Anonymity

The important aspect of upholding participants’ anonymity was facilitated through the removal of direct and indirect identifiers and links with original data sources. The majority of interviews were digitally recorded and transcribed. Transcriptions were anonymized by removing personal information including participant’s name, address, name of boarding house, phone number, job title and agency. A coding system was developed allocating each participant a number. Transcribed interviews and digital recordings were electronically stored under the participant’s number and password protected. Participants were given a copy of their interview transcript to check for accuracy of information and provided the opportunity for self-editing if they were concerned about information being re-identifiable. Community workers assisted resident participants who required support with checking and editing. Once transcripts were endorsed the content and key themes were used within the thesis findings and discussion chapters. To ensure that participants’ information could not be re-identified each chapter was analysed by applying the following questions:

Who would be expected to know or have access to this information?

Could a process of elimination identify the participant?

Is there language or idiosyncratic terms or behaviours that could identify a participant?

Following this process of analysis any issues of concern regarding identifiable information were discussed with participants who were provided with the opportunity to edit or remove information. Providing participants with the opportunity to participate in data analysis and chapter review could have enhanced this process further.

Conclusion

Within qualitative research there exists a tension between ‘thick description’ and anonymity, and this is particularly highlighted when researching in specialized areas where the population is small and participants fear retribution (Geertz, 1986). ‘Thick description’ provides for a richer contextual and experiential understanding of the key themes, however it heightens the possibility of exposing the identity of participants. Preliminary analysis of the data from interviews with participants highlighted the challenge of maintaining anonymity while balancing the methodological consideration for ‘thick description’, painting a detailed picture and narrative. Christians (2011: 66) points out that ‘despite the signatures status of privacy protection, watertight confidentiality has proved to be impossible. Pseudonyms and disguised locations are often recognized by insiders’. Protecting anonymity is further complicated in case study and life story research where participant ‘disclosures have been quite detailed or individuals [become] identifiable by their specialized roles or idiosyncratic behaviour’ (Deyle et al., 1992: 633).

These challenges have been compounded by technology and requirements that researchers disseminate their findings widely increasing the likelihood ‘that in the process of dissemination participants recognize themselves, or are recognized by others’ (Tilley and Woodthorpe, 2011: 200). However, a guarantee of anonymity requires the elimination of all identifying characteristics. For example, as a social researcher who had practice experience in the area of licensed boarding houses I was aware that describing behaviours, quoting certain phrases or a description about how many people lived in a room could compromise a participant’s anonymity in this research. However, in considering these issues, often the substance of the narrative can be compromised. Anonymity requires the researcher to give careful consideration to the participant’s world and ensure that what is recorded and disseminated cannot be attributed to the participant.

Through undertaking this research project, I have observed that upholding anonymity is an ongoing and dynamic process. It requires vigilance, consideration for the research and the participant’s contexts and regular critical analysis. For example, following an interview with a boarding house proprietor I was escorted on a tour of the boarding house. I was introduced to some of the residents of the boarding house, including two participants of this study. Recognizing me, residents approached to say hello while others simply nodded. In order to maintain resident participants’ anonymity, I moved on with the tour quickly, engaging in a manner that was respectful and concealed familiarity. The complexities of context in social work research requires critical engagement with the research process, moving beyond compliance with IRB requirements and ‘getting the ethics done’. Social Work research requires ongoing ethics review by the researcher from project design to analysis and dissemination (Peled and Leichtentritt, 2002).

Mertens and Ginsberg (2008: 485) argue, that ‘social work researchers stand deep in the water in terms of ethical concerns because of the nature of the populations with whom they typically work, the sensitive nature of the issues they address, the inherent need in their profession to be closely involved with their clients, the social justice issues they encounter, and their desire to see social transformation’.

This article has highlighted the ethical and methodological challenges of conducting social research where the potential for retribution is perceived as high by many of the participants in the study including vulnerable and marginalized groups such as boarding house residents. It has identified the importance of applying a broad definition to anonymity and outlined some of the ethical and practice considerations to ensure participants are not re-identified. It has also argued for ongoing critical engagement and ethical review throughout the research process.

Footnotes

Funding

This work was supported by the Curtin University Postgraduate Scholarship and the Australian Housing and Urban Research Institute (AHURI) Postgraduate Scholarship.

References

Ageing, Disability and HomeCare (2010) Code of Conduct, Sydney: ADHC.

Ageing, Disability and HomeCare (2010) Boarding House Reform Discussion Paper, Sydney: ADHC.

Ageing, Disability and HomeCare (2012) Licensed Boarding Houses, Sydney: ADHC.

Australian Association of Social Workers (2010) Code of Ethics. ACT: Australian Association of Social Workers.

Barnes

Mercer

Shakespeare

(1999) Exploring Disability: A Sociological Introduction, Cambridge, UK: Polity Press.

Bigby

Fyffe

(2006) Tensions between institutional closure and deinstitutionalization: What can be learned from Victoria’s institutional redevelopment? Disability and Society 21(6): 567581.

Bostock

Gleeson

MacPherson

Pang

(2001) Deinstitutionalization and Housing Futures: Final report, Sydney: AHURI.

Butler

(2002) A code of ethics for social work and social care research. British Journal of Social Work 32(2): 239248.

Christians

(2011) Ethics and Politics in Qualitative Research. In: Denzin

Lincoln

(eds) The SAGE Handbook of Qualitative Research, (4th edn.). Thousand Oaks, CA: SAGE.

10.

Denzin

Lincoln

(2005) The Discipline and Practice of Qualitative Research. In: Denzin

Lincoln

(eds) The SAGE Handbook of Qualitative Research, Thousand Oaks, CA: SAGE.

11.

Deyle

Hess

LeCompte

(1992) Approaching ethical issues for qualitative researchers in education. In: LeCompte

Millroy

Preissle

(eds) The Handbook of Qualitative Research in Education, New York: Academic Press, pp. 597641.

12.

Eisner

(1991) The Enlightened Eye: Qualitative Inquiry and the Enhancement of Educational Practice, New York: Macmillan.

13.

Emerson

(2004) Deinstitutionalization in England. Journal of Intellectual and Developmental Disability 29(1): 7984.

14.

Fook

(2001) Qualitative Practitioner Research. In: Shaw

Gould

(eds) Qualitative Research in Social Work, London, UK: SAGE.

15.

Gans

(1962) The Urban Villagers, New York: Free Press.

16.

Geertz

(1986) Making experiences, authoring ourselves. In: Turner

Bruner

(eds) The Anthropology of Experience, Chicago: University of Illinois Press.

17.

Greenhalgh

Miller

Minnery

Gurran

Jacobs

Phibbs

(2004) Boarding House and Government Supply Side Intervention, Queensland: AHURI.

18.

Horin A (2011) ‘Sad truth behind closed doors’. The Sydney Morning Herald. 23 July, p. 18.

19.

Hugman R, Pittaway E and Bartolomei L (2011) When ‘Do No Harm’ Is Not Enough: The Ethics of Research with Refugees and Other Vulnerable Groups. British Journal of Social Work. 41(7): 1271–1287.

20.

Human Rights and Equal Opportunity Commission (HREOC) (1993) Human Rights and Mental Illness: Report of the National Inquiry into the Human Rights of People with Mental Illness, Canberra: AGPS.

21.

Jacobsen

Landau

(2003) The dual imperative in refugee research: Some methodological and ethical considerations in research on forced migration. Disasters 27(3): 185206.

22.

Liamputtong

(2007) Qualitative Research Methods, 3rd edn. South Melbourne, Victoria: Oxford University Press.

23.

Melville

(2005) Human research ethics committees and ethical review: The changing research culture for social workers. Australian Social Work 58(4): 370383.

24.

Mertens

Ginsberg

(2008) Deep in ethical waters: Transformative perspectives for qualitative social work research. Qualitative Social Work 7(4): 484503.

25.

National Health and Medical Research Council (1999) National Statement on Ethical Conduct in Human Research, Canberra: NHMRC.

26.

National Health and Medical Research Council (2007) National Statement on Ethical Conduct in Human Research, Canberra: NHMRC.

27.

Newtown Neighbourhood Centre (2003) Opening the Doors: Boarders and Lodgers Project Report, Report, Sydney: Newtown Neighbourhood Centre.

28.

NSW Government (1993) The Taskforce on Private ‘For Profit’ Hostels, Sydney: NSW Government.

29.

NSW Ombudsman (2011) More than Board and Lodging: The Need for Boarding House Reform, Sydney: NSW Ombudsman.

30.

Peled

Leichtentritt

(2002) The Ethics of Qualitative Social Work Research. Qualitative Social Work 1(2): 145169.

31.

Pinkerton

(1998) The impact of research on policy and practice: A systemic perspective. In: Iwaniec

Pinkerton

(eds) Making Research Work: Promoting Child Care Policy and Practice, Chichester, UK: Wiley.

32.

Richmond

Savy

(2005) In sight, in mind: Mental health policy in the era of deinstitutionalization. Health Sociology Review 14(3): 215229.

33.

Scull

(1977) Decarceration: Community Treatment and the Deviant, New Jersey: Prentice-Hall.

34.

Shaw

(2008) Ethics and the practice of qualitative research. Qualitative Social Work 7(4): 400414.

35.

Stake

(2005) Qualitative case studies. In: Denzin

Lincoln

(eds) The SAGE Handbook of Qualitative Research, Thousand Oaks, CA: SAGE.

36.

Silverman

(2005) Doing Qualitative Research: A Practical Handbook, (2nd edn). London, UK: SAGE.

37.

Tilley

Woodthorpe

(2011) Is it the end of anonymity as we know it? A critical examination of the ethical principle of anonymity in the context of 21st century demands on the qualitative researcher. Qualitative Research 11: 197.

38.

Warner

(1989) Deinstitutionalization: How did we get where we are? Journal of Social Issues 45(3): 1730.