Conclusiones finales

Autobiography, if there is such a thing, is like asking a rabbit to tell us what he looks like hopping through the grasses of the field. How would he know? If we want to hear about the field on the other hand, no one is in a better circumstance to tell us – so long as we keep in mind that we are missing all those things the rabbit was in no position to observe. (Golden, 1997, p. 1)

Introduction

This chapter describes the methodology and method through which the thesis data is linked to the wider social context in which the key issues informing this study - sexuality, intellectual disability and the support position, are embedded. The first part briefly outlines the methodological problems international researchers have found gathering intellectual disability and sexuality support data. Examples from the literature review are included. These problems inform the data gathering method. I then summarise information about the participant group. A brief participant profile, ethical safeguards taken to protect all participants involved and an outline of the interview process are included.

I put myself into the methodological frame in the second part of the chapter. I outline the troubling questions the interview process raised. I detail how I begin to work retrospectively and reflexively in respect of the unease these questions created. This part of the chapter includes a deeper consideration of the influence of the interview site as a specific socio-cultural space in which the workers interviewed and I were both located.

I then validate a post-modern/interpretive perspective as the framework from which the data is analysed. I draw on key ideas from the works of Burman & Parker (1993),

Weatherall, Taylor & Yates (2001) and Denzin & Lincoln (1997). These articles bring together a variety of deconstructive approaches to qualitative data analysis. My take on these ideas forms the ‘methodological toolkit’ (Court, 2001, p. 84) I use to isolate the presence of key discursive effects from the information gathered. Finally the difficulties of working with a deconstructive/interpretive approach to qualitative data analysis are expanded on. I briefly examine possible pitfalls inherent in the use of this method in an academic context. The chapter ends with further reflection on my position within the process of sexuality research, including recognition of the need for more support for those undertaking studies in this sensitive area.

Literature Review Findings

The initial part of this research project included scrutiny of a broad spectrum of research surveys in the intellectual disability and sexuality support field. What was immediately noticeable was that this data set contained very few studies compared to the volume of studies undertaken in other support areas. This lack of data gave credence to the recent opinion expressed, that sexuality support is a tricky

investigative area and one that contains significant research pitfalls (Test et al., 2003).

I found that worker’s talk was rarely used as a source of information. Data collection invariably relied on pen and paper methods, despite the problems these methods posed. In particular, problems of adequate participant engagement remained a significant obstacle in studies using this approach. For example, some researchers noted that questionnaires distributed to workers covering aspects of sexuality support often resulted in significantly low rates of return (see, for example, Christian, et al., 2002). Other research papers described workers as either refusing point-blank to take part in written surveys about sexuality support or as returning questionnaires with the sections about sexuality and intimacy left unanswered (see Craft & Brown, 1994). Analyses of completed questionnaires were found to include weightings towards certain kinds of respondents, for example older rather than younger workers, raising questions about the possibility of skewed data findings. In addition, a prevalence of responses from female workers in particular has continued to be noted (McConkey & Ryan, 2001). Chronically low rates of completion and return seemed to have be

accepted by the researchers concerned, perhaps seen as an inevitable by-product of the nature of the topic about which little could be done.

In New Zealand the sexuality support research area had been so tricky I could only find one published study about the subject (Chapman & Pitceathly, 1985). However, neither did I find any corpus of published data that focused directly on support worker views in any support area. What I did uncover was one unpublished in-house survey of what were called, in the language of the day, direct care residential staff (Turner, 1984). This interview-based survey had been completed as a general survey of workers for training requirement purposes, thus not particularly slanted towards an exploration of sexuality support. But it contained an interesting and intriguing comment. This author noted that “meeting with the genuine carer is a unique and enlightening experience” (Turner, 1984, p. 146), a remark providing a stark contrast to the more negatively framed appraisals of worker performance outlined in the international review studies. Turner (1984) also noted that although the interviews he undertook were designed to capture training related information, they often “ranged far from the specifics of the interview form, to be terminated reluctantly when the time for the next appointment arrived” (Turner, 1984, p. 146).

In view of the difficulties survey-type methods experienced and in view of Turner’s (1984) comment noted above, I decided to use an interview format for my data gathering method.

Gathering Participants

Interview participants were gathered through personal contact and through a call for volunteers made at two sexuality-focused workers training sessions I attended in the summer of 2006. After initial contact, interviewees were spoken to by phone to organise a meeting time. I had arranged for a room in the university to be made available if needed. However, meetings ended up being held in a variety of locations to suit the requirements of the participants. Two interviews were held in workers own homes, four in a room within the service organisation they worked for and three in a room in the interviewee’s workplaces. While these locations were less than ideal from some perspectives, they represented the best chance workers had of being able to set

aside the time I requested. Worker’s being able to choose their interview location also gave me some assurance that the sites they opted for were considered by them to be suitable for the nature of the topic (Sin 2003).

Thirteen support workers were interviewed, including eleven women and two men. It had been suggested by a member of the committee that I offer interviewees the option of bringing a support person with them as an aspect of the ethical approval process. Three people chose this option and brought a person with them. I recognized these people as workers who had attended one of the two training sessions I had previously spoken at. In view of their knowledge of what was involved in the research, and with the agreement of the interviewees concerned, those who came as support were offered the option of contributing to the interview discussion in their capacity as front line staff.

I explained that the contributions they made would be subject to the same ethical considerations as those involved in a single person interview format. All were willing to participate. As a result, seven people took part in a single interview and six were interviewed in three two-person groups. All participants involved signed the Consent Form for Support Workers approved by the ethics committee for interviewees

involved in the study (see Appendix 3). Those interviewed as a two-person group also signed the approved Group Confidentiality Agreement Form (see Appendix 2). Thus all participants became part of the verification of information gathered and the guarantee of anonymity and confidentiality processes outlined in the ethical approval forms.

Participant Information

Participants were not asked to reveal their ages but from prior knowledge all fitted the age and qualification aspect of the profile of a current New Zealand support worker - as an “unskilled worker in her 40’s and 50’s” (Chai, 2003a). Participants were asked how long they had worked in this role, what service areas they had worked in and what level of responsibility they held within the service they worked for. Lengths of service varied between two months and twenty-six years. Levels of responsibility also varied with those identifying as workers on Level 1 having less responsibility that

those identifying as on Level 4. Those on Level 4 held less responsibility than those on Level 6.

From my experience of organisational processes, the areas of responsibility these levels covered varied depending on a number of factors, including whereabouts in New Zealand the worker is employed. In general, those at a higher number usually have more direct responsibility for house budgets and/or for the overall operation of the staff roster system within the houses they worked in. Higher levels are also tied to support positions where assistance is given to intellectually disabled people with high degrees of physical and cognitive impairment. However, this designation can also refer to remuneration for length of service, with long-serving workers often earning more than their newer counterparts. The differences in level of responsibility noted raises questions about how well this factor is taken into account as existing literature that usually refers to all workers as either ‘staff’ or ‘workers’. This convention suggests that power differentials found within this level system are not always taken into account.

All participants were currently employed full time as support workers. Four interviewees identified as Maori, and one had Maori affiliations. The names of the participants and other people mentioned during the interview have been changed by agreement signed by all interviewees.

An asterisk indicates where the worker identified as having a disabled family

member. Three workers have or have had an intellectually disabled sibling, indicated by the use of **. Four other workers have a disabled family member they identified as being part of their immediate family (‘immediate’ including uncles, aunts and first cousins). This relationship is indicated by the use of *, and includes family members who represent a variety of physical, cognitive and emotional impairment conditions. The high number of workers in this study with a disabled family member was

surprising, and reflects a dimension to the support work position that is rarely overtly acknowledged.

Table of Participants

Pseudonym Number of years Organisational Level

P** 4 years Worker/Coordinator

G* 3 months Support Worker

J 12 years Worker/Level 6

Ju* 15 years Worker/Level 6

C** 26 years Worker Level 6

S** 7 years Support Worker

H* 9 years Support Worker

T 2 years Support Worker

Jo 11 years Worker/Level 4

V 4 years Worker/Coordinator

Co 6 months Support Worker

M* 4 years Support Worker

Joa 3 years Support Worker

Conducting The Interviews

Interviews were conducted using trigger questions reflecting broad theme areas drawn from literature review sources (see Appendix 5). The structure of each interview session was slightly different. Theme areas varied within each interview and all question areas were not covered to the same depth or extent. What was covered came to depend on the individual workers breadth of experience in the position, the areas of support they were familiar with, the assistance needs of the person they supported and the gender of the interviewees. However, all interviewees were asked what their definition of disability was, what their definition of sexuality was and what they thought the word sexuality might mean to a person or people they supported. Each interview took between one and one and one half hours to complete. All participants were assured that they did not have to respond to any question they felt uncomfortable answering to address levels of comfort.

C: If …you think no, I don’t want to answer that or no I feel too uncomfortable, just tell me.

J: Ok

C: … because it is a difficult area. J: Yeah (J 2005, p. 1).

Interviewees were also invited to indicate that the tape be turned off at any stage if needed. The tape was turned off during the course of two interviews, once for a participant to answer a phone and once to deal with a work issue that had arisen. Interview transcripts were sent back to interviewees for comment and revision as negotiated before the interview and one interviewee sent back additional comments during this period.

At the time I took this lack of further engagement as indicating that workers trusted the process, that they were comfortable with what they had said and what I was going to do with the information. In hindsight I am now more wary of how readily I made this assumption, rather than thinking this ‘lack’ position might indicate the possibility of a ‘something more going on’ issue that needed deeper consideration (1). I expand on aspects of this point later in the chapter.