Rueda con un plano en su periferia.

IPA is a relatively new methodology and comparatively few studies have been published that compare IPA with other methodologies (Brocki and Wearden 2006). It has been criticised for a weakness in generalisability, small participant sample groups (Cronin-Davis et al 2009) and from a negative perspective it may be claimed that the experience of a small population is not likely to be representative of older, younger or differently gendered populations. However in its defence, IPA does not claim to provide a fully exhaustive or objective view of phenomena; nor does it aim to provide a broad or representative view, although it may be the case that the findings from a small sample may or may not be representative of a larger sample (Touroni and Colye 2002; Yardley 2008). IPA is concerned with the experience of the individual from their unique perspective yet acknowledges the act of interpretation between researcher and participant throughout the process (Smith et al 2009).

Given that the stated aims and objectives of this study are concerned with the exploration and perceptions of siblings of adults who have a learning disability, the use of an approach aligned to IPA for the main study at Stage two is justified because it allows participants to describe their perceptions of the experience; with phenomenology at its core, there is an emphasis on hearing the voice and describing the lived experience of the individual who has experienced the specific phenomena - a key theoretical construct of IPA (Smith et al 2009). As a methodology therefore, IPA is congruent with the aim of the thesis. A further justification for the use of IPA is that despite, or perhaps because of, its focus upon the voice of the individual, it allows for difference and similarity of experience to be drawn out, for the presence of both convergence and divergence (Smith et al 2009).

76

This further supports the research aims and objectives which relate to the exploration of individual wishes and preference, rather than trying to provide an overarching theory as utilized in other approaches such as grounded theory (Glaser and Strauss (1967). Furthermore, the use of IPA at Stage two, facilitates the deeper understanding of issues raised at Stage one which was quantitative in approach.

To hear the voice of sibling participants is significant because it has been stated in the literature review that there is little empirical research related to the needs and wishes of adult siblings of people who have a learning disability regarding a future care role (McCallion and Kolmer 2003; Hodapp and Urbano 2007); this lack of literature was noted in the published results of Stage one (Davys et al 2010). A reason why research into this topic is limited could be that it is deemed emotive; subjects considered to be sensitive are difficult to study due to the potential to cause participants emotional distress (Lee and Renzetti 1993, Oriell and Dudley 2009). Because there is a lack of research in this field, it is important therefore that the voice, experience and needs of this group of people are heard. This further supports the use of IPA as a methodology because it provides a platform from which the views, opinions and needs of siblings can be heard and then be used to inform service providers of sibling needs and wishes. Hearing the voice of individuals who experience the phenomena is noteworthy, particularly in the absence of a strong body of empirical data, as services are likely to be built on the established medicalised or expert health care professional interpretations of a situation (Knight 2003). In these circumstances, services may fail to meet the needs and wishes of those siblings who are likely to take on key roles in the lives of people who have a learning disability, and there is a long history of dissatisfaction between families of people who have a learning disability and service providers (Thompson 2001; Scelles 2002; Bhaumik et al 2011).

In the current climate of increased demand upon learning disability services and budgetary constraint (McInnis et al 2011) it is crucial that support services are

77

appropriate and relevant to services users and their families. By using IPA as a methodology to hear the views, opinions and needs of siblings, health and social care providers will be better able to understand their needs and wishes, and provide services which are meaningful, relevant, required, and thus more cost effective. IPA has previously been used in this way to provide service providers with information upon which to build their services (Fade 2004). Associated with the climate of cuts in services and budgets, is the social and government expectation that families will become increasing involved in the care of people who have a learning disability (DoH 2001; DoH 2008). According to the research base, many siblings expect and want some role in the future support of their learning disabled relative (Heller 2000, Thompson 2001; Dillenburger and McKerr 2010; Bigby et al 2011) and so in line with the expectation to provide care from various quarters, it is imperative that services are appropriate and meet the needs of individuals and families because it is likely that they will be called upon to provide higher levels of support in the future. Unless siblings are supported in a future care role, they may not have the skills or resources to assist the learning disabled person; this could lead to increased reliance upon services which in turn leads to increased service costs, a potentially negative impact upon family relationships and possibly a detrimental effect upon the lives of learning disabled people.

Although the ability to hear the voice of individual siblings is critical in this study, the research process outlined generates issues of potential bias and pre-conception. The use of semi-structured interviews may give rise to ‘Hawthorne’, ‘halo’, ‘stereotype’ and ‘prestige’ effects. The Hawthorne effect is described as the principle where, by simply being present, the researcher affects the research process and therefore the results. The halo effect describes researcher bias upon the interpretation of the results; the stereotype effect is when the researcher attributes the characteristics of a group to an individual, and the prestige effect is where the respondents wish to please the interviewer and so amends their

78

responses accordingly (Drummond 1996; Reynolds and Prior 2003). It must be reiterated however that IPA does not aim for generalisability per se, and these issues are recognised in an open manner as part of the analytical process from an IPA perspective, by accepting the presence of co-construction and interpretation between interviewee and researcher (Cronin-Davis et al 2009).

Despite the open acknowledgment of researcher interpretation when using an IPA approach, the unique world view and experience of the researcher is likely to influence understanding (Finlay 2006a); there is no call upon researchers to put aside their presumptions or pre-understandings, as required in methodologies such as grounded theory (Corbin and Strauss 2008) or Giorgi’s phenomenological psychological method (1985). Some critics suggest that this can create bias, particularly where researchers are not consciously aware of their presuppositions; however in its defence, the approach is open and transparent about the influence and engagement of the researcher throughout the research process and it could be argued that any bias with respect to personal identity such as age, sex and ethnicity is not susceptible to control in the same way as other factors (Denscombe 1998). As interviewer bias is a reality that cannot be avoided, it could be argued that the researcher should not attempt to make an interactive methodology neutral (Hammell et al 2002).

With the emphasis on individual experience and perception of particular phenomena, IPA considers the individual to be a physical, cognitive, affective and linguistic entity presuming a connection between emotions, thoughts and what is said whilst engaging in the research process (Smith et al 2009). Despite this stance at a conceptual level, not all participants are equally skilled in emotional awareness or are willing or able to translate emotion and experience into verbal communication and therefore some participants may have difficulty in expressing their thoughts and feelings for a variety of reasons (Smith and Osborne 2008). In practical terms, some individuals are more able to enter into the research process

79

than others, which could affect the interpretative process and depth of data gathered. Some IPA studies have suggested that certain aspects of the interview process for example demographic variables, type of equipment prescribed, and psycho-social variables may be better addressed using a quantitative approach (Murray et al 2004); this further supports the use of a quantitative approach in Stage one in addition to the use of IPA at Stage two (Robson 2002; Morse 2004; Teddlie and Tashakkori 2009).

In terms of data analysis, a criticism of IPA is that it lacks rules and structure, and is therefore described by some as unscientific (Giorgi 2000, 2010). This position is refuted by Smith (2011) who claimed that IPA refers researchers to detailed guidelines that may be used as a guideline. The extensive use of participant quotes is also advocated to support evidence of study findings and to demonstrate links between superordinate and subordinate themes. The use of IPA is further justified as it offers a suggested method of data analysis which is non-prescriptive and personal rather than demanding strict adherence, and it strives to keep close to the lived experience of the individual participants, again supporting the research aim and objectives. The use of a flexible approach for data collection, analysis and presentation of results means that the individual perspective can be presented in a way that acknowledges the engagement of the researcher in the interpretative process; it also allows more freedom in the analytical process which is useful where the number of participants may vary. An IPA approach advocates the use of quality initiatives and strategies, which are discussed later under the reliability and validity section of this chapter.

A final justification for the use of IPA as a methodology at Stage two is that it acknowledges the part of the researcher in the interpretative process (Cronin-Davis et al 2009). This fits my personal philosophical and world view of the role and function of the researcher within the process. It is my understanding and belief that I will act as interpreter for the participants at some level as I listen to their stories,

80

read and re-read the transcripts, interpret and put data into categories before deciding upon key themes which I perceive to rise from the data. I acknowledge my acts of interpretation within this process, despite my wish to remain true to the individuals’ lived experiences. It is also likely that my personal world view is influenced by my professional role as an occupational therapist, as my professional code of conduct promotes a client-centred and individualistic approach to practice (College of Occupational Therapists 2010).