Las motivaciones que los consumidores tienen para visitar centros

This chapter brings together discussions that were offered as the research progressed. It is hoped that the application of intersubjectivity in attempting to address the research question could introduce novel ways of understanding work with intellectually disabled adults; address the effects and prevention of marginalisation and disempowerment by equalising power (im)balances; and by virtue of its scientific literature base, provide a contextualised account of work with institutionalised intellectually disabled adults and their caregivers. It is hoped that the research might be useful to institutional policy and budget decision makers working with the mental health of intellectually impaired individuals; professionals from various disciplines involved in disability work and research; psychoanalytic intersubjective theorists, practitioners, and researchers; and in the professional development for intellectual disability workers and caregivers.

Relatively and temporarily able-bodied for now, we may ignorantly negate our culpability in shaping the environments that intellectually impaired individuals are disabled by on a daily basis. But as participants in care we all contribute to creating the world we will become impaired in, and to the people that will disable us. The voices of intellectually impaired individuals – their experiences of disabling worlds – call us on our ignorance and lack of knowledge, confront us with our own human fragility, and remind us of the inevitability of our own need for care.

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1.3. METHODOLOGY

I do not want to create the expectation that this study has been entirely collaborative in the tradition of emancipatory research. Ideally it should have been, since South Africa lags far behind the movement in the United Kingdom, for example. But I hope that I have managed to include the voices and institutional worlds of the study participants in a respectful way that honours and dignifies their experiences. When I use “research with” I do so to indicate that I considered the participants as the true experts on intellectual disability, and that I was guided by them in the data collection and validation process as opposed to having taken a directive approach. Much more thinking is done about this in Chapter 8.

So for the purposes of this study, a qualitative approach would accommodate the spirit of intersubjective ethics of care research work and writing, and afford containment for as yet “unknowable” research eventualities and results. Qualitative measures will also allow for co- created descriptions of unique intersubjective fields and voices that emerge during the course of engagement with participants. For these reasons, this study will employ a descriptive and explorative inductive qualitative approach, and follow critical realism and contextual constructionism in the spirit of creating intersubjective data (Babbie& Mouton, 2007; Burman, 1997; Hollway & Jefferson, 2013; Madill, Jordan, & Shirley, 2000). The

exploratory nature of the research enables an attempt at understanding living and working with psychiatric intellectual disability (Bless, Higson-Smith, & Kagee, 2006), whilst its descriptive nature engages the reader with situations described by the researcher (Babbie & Mouton, 2007). The qualitative approach allows space not only for the researcher’s

reflexivity and subjectivity, but also for those of psychiatric intellectual disability nurses and adult residents (Terre Blanche, Durrheim, & Painter, 2006).

Enabling an intersubjective investigation, critical realism admits an inherent subjectivity in the co-creation of knowledge – it contends that the way researcher and participant perceive truths depends on their beliefs and the social realm in which these truths will be observed (Burman, 1997; Harper, 2008; Marzano, 2007). Contextual constructionism takes note of intersubjective meanings, and does not assume that there is only one true analysis that can be revealed by using the “correct” methodology (Erlich, 2003; Ogden, 2003). Contextualism also posits that all knowledge is local, provisional, and situation dependent, and that results will vary according to the context in which data was collected and analysed. All accounts,

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researchers’ and participants’, are understood as permeated with subjectivity and permissive of conflicting perspectives (Johnson, Onwuegbuzie, Tucker, & Icenogle, 2014; Madill et al., 2000). To this end, the study’s qualitative approach affords space in which the reflexivity and subjectivities of the researcher and participants can emerge as they co-construct their research findings (Terre Blanche et al., 2006).

Due to the setting in which data will be collected – two public psychiatric hospitals – Chapter 7 will offer work on residents’ experiences of living with intellectual disability on inpatient psychiatric wards. It hopes to do so by integrating residents’ individual narratives with ward observations of care performances and exchanges from an intersubjective and relational ethics of care perspective. To accommodate the abovementioned, the participatory action research (PAR) and case study method was employed during intersubjectivity informed sessions with adult residents living with psychiatric illness and intellectual disability, and results from these interactions are offered in Chapter 7 (Simons, 2014). In keeping with the intersubjective tradition, PAR seeks to establish “joint collaboration within an ethical framework” with a view to engaging participants directly in the research processes (Kagan, Burton, & Siddiquee, 2008; Rapaport, 1970, p. 499 in Terre Blanche et al., 2006). PAR emphasises open relationships, with participants having a direct voice regarding data collection and interpretation, whilst the case study method is ideal for observing salient features of the unique intersubjective fields that will unfold during interactions between researcher and participants (Kittay, 2009; Parker, 2005; Simons, 2014). Case studies of research dyads – tracking each third voice as it emerges – can afford an intensive investigation of the research-participant interactions as units of analysis in this research (Babbie& Mouton, 2007; S. Swartz, 2006).

In the spirit of intersubjective co-creation of participant material, and so as to neither limit participant responses nor make hypothetical assumptions about participant experiences of living and working with intellectual disability, carer interviews will be conducted by means of the Free Association Narrative Interview (FANI) method (Hollway & Jefferson, 2013). Applying the FANI (Hollway & Jefferson, 2013) method for interviews with nursing staff in Chapter 6 suits the study’s aim of intersubjectively co-creating with participants fresh perspectives on working with psychiatric intellectual disability, and attempted to remedy a marginalised and silent posture that living and working with intellectual disability can easily be made to inhabit. In theory, intersubjectivity allows for a shared understanding mediated

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through unique interaction, for collaborative research that reflects participant views, and for researcher reflexivity in a power-balanced relationship (Anderson, 2008). Ultimately, the FANI method operationalises the aim of partnering with participants who feel comfortable to share experiences unconditionally held and valued by the researcher. An overview of the research design for “data chapters” 2, 3, 6, and 7 is summarised here in table form, with data from ward observations and sessions with residents culminating in Chapter 7 (Table 1.2): Table 1.2.

Overview of Qualitative Research Design

Research question: Can intersubjectivity informed disability work and research co-create with participants a balance of power from which the expert voices on – and expert knowledge of – intellectual disability can emerge?

Chapter Operationalisation Method of data collection Method of data analysis

Chapters 2 and 3 _{• Literature review} • Gauging knowledge on

intellectual disability in South Africa spanning 26 years (1989-2015) • Electronic database searches • Hand searches • Contacting authors of “missing” papers • Integrating quantitative

and qualitative research studies (mixed-method)

• Review of published peer reviewed journal articles and “grey literature” • Inclusion and exclusion

criteria

• Independent raters with experience and expertise in intellectual disability Chapter 6 _{• Eliciting experiences of}

care workers of intellectually impaired individuals in institutional environments • Free Association Narrative Interviews (FANI) of 60 minutes each • 16 individual participants

• Thematic and narrative analysis until saturation reached

Chapter 7 _{• Eliciting experiences of} intellectually impaired residents on psychiatric intellectual disability wards

• Participant action research (PAR) and case studies

• Verbal and non-verbal communication • 10 cases

• 59 intersubjectivity informed individual sessions

• Thematic and narrative analysis until saturation reached • Units of analysis explored on: o predominant anxieties o defensive strategies o traumas repeated and

responded to • Performance and

exchange of care among nurses and patients on psychiatric intellectual disability wards • Participant observations • 3 inpatient wards • 45 hours • Field notes • Thematic analysis • Triangulation of observations with resident session and caregiver interview material

22 1.3.1. Literature review

The review offered in Chapters 2 and 3 serves as the basis for a future systematic review of literature on intellectual disability in South Africa. As a starting-off point, an initial list of peer reviewed journal articles as well as “grey” literature pertaining to all research on intellectual disability in South Africa over the past 26 years (1989-2015) was compiled, where intellectual disability was the topic of study. The review followed a mixed-method of integrating both quantitative and qualitative research studies on intellectual disability in South Africa. As Harden (2010) informs, an integrative literature review that includes diverse forms of evidence can enhance the utility and impact of its results by identifying analytical themes, recognising gaps in the research literature, as well as offering recommendations for further research (also see Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011).

1.3.1.1. Search strategy

In order to find literature to review, MeSH search terms using Boolean syntax were entered into five databases (Web of Science, PubMed, Scopus, PsychInfo, and ERIC). References without electronic files were hand searched. Search terms were entered around three main topics, namely intellectual disability, South Africa, and participant age (adult or child), and were sensitised for time span and language. MeSH terms were used to search the literature by using universal terms related to “Intellectual Disability”, “Developmental Disabilities”; “South Africa”; “Adult”, “Middle Aged”, “Young Adult”, “Aged, 80 and over”, “Frail Elderly”, “Adolescent”, “Child”, and “Infant”. Returns on searches are described in detail in Chapter 2.

1.3.1.2. Inclusion criteria

To be included in this literature review, the topic being studied had to be intellectual disability in South African specifically, and had to be published over that past 26 years (1989-2015). Research participants and research sites had to be South African, even if the researchers were not. Country groupings written about in any study on intellectual disability had to include South Africa if a study was to be considered for review. Deciding on which studies to include and exclude got quite complicated at times. For this reason and as explained in Chapter 2, the help of experienced and expert independent raters was sought. Studies on Foetal Alcohol Syndrome (FAS) and Autism Spectrum Disorder (ASD), for example, were particularly problematic. Again, the parameters around these are discussed in some detail in the next chapter.

23 1.3.1.3. Exclusion criteria

Literature on intellectual disability in Africa but not South Africa (e.g., Nigeria); literature on disability in South Africa but not intellectual disability (e.g., hearing impairment); literature on frequently co-occurring presentations of which intellectual disability is not necessarily included by definition (e.g., FAS without intellectual disability as excluded versus intellectual disability in Down’s Syndrome as included); and irrelevant database returns (e.g., South Carolina, Southern Australia) were excluded from this study. Etiological studies on, for example, nutritional insufficiency (e.g., iodine or iron insufficiency, suboptimal nutrition, maternal or perinatal malnutrition), infectious illnesses (e.g., tuberculous meningitis), parasitic or tropical diseases (e.g., measles, polio, bacterial meningitis, malaria, encephalitis, or helminth infections), and vulnerabilities in preterm or low birth weight infants were excluded unless the topic of study was intellectual disability. Returned and subsequently excluded sources after the Independent Rater Round are offered in table form in Chapter 3.

1.3.1.4. Independent raters

After a first exclusion sweep, the remaining references were investigated for forward citations. In so doing, reference lists of peer reviewed journal articles as well as those of the “grey literature” were studied for possible inclusion of sources that met inclusion criteria but might have been missed during the initial search. After the first exclusions, the help of seven independent raters was sought to verify whether the selected sources did indeed address the review question and meet inclusion criteria. Although all seven were willing to participate and be involved in the systematic review that will develop from the review offered in Chapters 2 and 3, five raters submitted their rater forms. Raters were allocated up to 29 articles, chapters, papers, or studies to review for inclusion, and were matched as far as possible with references particular to their expertise and experience. I rated the remaining studies for inclusion. In cases where hand searches did not produce a required study, authors of the included literature were either contacted for their papers via ResearchGate, or a librarian at the University of Stellenbosch was approached to help locate studies. “Missing” papers were sent on to raters as they became retrievable. Completed and returned

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