Stigma Experienced by Individuals Living with Schizophrenia

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An investigation into the level of stigma experienced by people living with schizophrenia.

Review

When conducting research into the stigma that comes with living with schizophrenia, it can be exceedingly difficult to obtain accurate information. This report will provide a variety of possible research designs that could be used in the given scenario, and by looking into multiple data collection options we are able to evaluate which methods will be the most effective when trying to obtain accurate and reliable data.

The Diary Method is well-known in psychological research and is becoming used more frequently (Bolger, et al. 2003). It involves the participant making daily written accounts of their personal thoughts and opinions, of certain experiences (Iida, et al. 2012). There are three categories of diary studies; interval-contingent protocols, signal-contingent protocols and event-contingent protocols (Wheeler and Reis, 1991). The diary method that would be best used with this scenario would be the event-contingent protocols. By using this design method, it means that the participant is required to provide a self-report each time the event in question occurs. In this case, it will be when the participant feels that they have been subject to stigma due to their schizophrenia.

One of the main advantages of using the diary method is that researchers can gather data in the participants everyday lives, meaning they are able to stop and document the event. This is exceedingly important when working with individuals with schizophrenia, as it has been shown in a study done by Alexiadou et al in 2018, that deficits were shown in episodic and semantic memories of events, facts and even regarding specifically recalled events. By decreasing the amount of time between the participant experiencing the event and documenting it, it will significantly increase the validity of events recall (Almeida, 2005).

However, one of the main issues with the diary method is that the participants may not reliably identify each relevant event. This can be due to miscommunication between the researcher and the participant or, more commonly, the individuals own perspective of what stigma towards them and their mental illness really is (Gunthert, 2012). This can lead to events not being documented, and therefore decreases the researches reliability (Iida, 2012). Although, if the event being documented is more complex than it would appear, the participant has no limit to how much they write down after the event that occurred. Giving a much deeper insight into the participants emotions and well-being.  By using this approach, it will allow phenomena and processes to be assessed in their natural settings rather than a controlled laboratory setting (Ebner-Priemer & Kubiak, 2007).

Another research method that could be used would be a self-administered online questionnaire. This questionnaire will contain both open and closed questions. The main advantage to this method, over the diary method, is that it allows for much more efficient analysis of the findings (Cantrell, et al. 2007). As well as this, this type of research allows for rapid data collection, as we can send a questionnaire to anyone who fits the criteria for it, which in this case is schizophrenia. This will give us access to a large sample of participants.

On the other hand, by using this type of questionnaire, the sample is limited. As the individuals taking part in the questionnaire must have access to a computer or some form of electronic device in which to access it, this means that all individuals who don’t have access to such devices are immediately removed from the sample. Making the results less generalisable (Le Fever, et al. 2007). But with the larger sample size that the online questionnaire would provide, some argue that the elimination of a select group would have a minimal effect of the results (Van Selm, et al. 2006).

As stated earlier, online surveys allow a researcher to reach huge amounts of people in a short amount of time, despite possibly being separated by great geographic distances (Taylor, 2000). This is not only an advantage because it allows access to a larger population but because it has also been shown to save time for researchers (Wright, 2017). However, due to the limited information that can be obtained via an online questionnaire, the biggest disadvantage is that it has lack of insight and depth into the individual and why they’ve said what they’ve said. By using the Diary method, the researcher can gain insight to each event of stigma that the participants experience. Whilst most, if not all, of this information is lost when using an online questionnaire.

Proposed Design

Design

This research shall be conducted using semi-structured interviews (SSI). The interviews will take place at the same location, each participant will have their own allotted time slot in which to arrive at the set location. Each participant will be asked the same SSI questions, provided for them by an SSI guide.

Participants

Participants will be located using the mental health service. Everyone that meets the criteria will be contacted and given the opportunity to take part in the research. 6 participants are required and the sample size was selected following previous studies such as Smith et al, (1999). All participants must provide a medical form confirming diagnosis of schizophrenia, must be between the ages of 25 – 65 with no other comorbid conditions.

Materials

A semi-structured interview guide will be provided for each researcher performing the interviews. This will contain a series of questions with prompts that the researchers can use to progress the interview. Briefing forms will also be needed for each participant along with a debriefing forms. A schedule for all the time slots for each interview will also be needed.

Procedure

A researcher will meet the participant at the agreed location, which will be somewhere quiet and private, at the selected time. The researcher will ask an opening question, to settle the participant into the conversation (Cridland, 2015). The main interview then begins, using the SSI guide provided. The interview should last at least an hour participants must be aware that all audio is recorded from these sessions (Pietkiewicz, et al. 2014). Before the interview begins the researcher must confirm that the participant fully understands the brief and their right to withdraw from the interview at any time. Once the participant has confirmed they understand the interview can begin. The researcher conducting the interview should follow the SSI guide provided, but do not be surprised if other topics are brought into the conversation by the participant. Participants should still be engaged with when they stray from the guide, as wider topic study is ideal for SSI’s (Smith, 2011). This makes it possible for the researcher and participant to engage in a dialogue, which allows further questions to be modified in retrospect of the other participants’ (Smith, 2015).  Once the interview is complete the participant can be debriefed.

Analysis

Once all interviews have been conducted, the recordings must be converted into a transcript. Each transcript is then read and annotated, identifying what you believe is to be the most interesting or significant, words or phrase, in what the participant said (Pietkiewicz, et al. 2012). Once this has been done, the researcher goes back to the annotations that have just been made and begins the process again. This is called bracketing (Husserl, 1999. In The Essential Husserl).  All summarised sections and annotations become more concise and specific, adapting a higher level of abstraction (Smith, et al. 1997). All whilst doing this, the researcher must make sure that they are going back over the original transcript to ensure that the phrases or themes that have been chosen, link back to what the participant initially said (Eatough, et al. 2008).

This transition from the initial transcript to themes, allows for over lapping to become identifiable (Smith & Osborn, 2007). These themes can now be listed together and the researcher can begin to look for connections between them. This list is usually listed chronologically. The researcher must make connections between these themes. Some themes may become subordinate, whilst other themes will cluster together. Once the clusters are identified it is vital that the researcher, once again, checks that the words used in the theme clusters came from the participants original transcript.

The final stage is to produce a table of themes and identify the ones which most strongly relate to the question at hand, which is the level of stigma people diagnosed with schizophrenia experience. The final table lists the clusters that go with certain subordinate themes, and an identifier is added to each instance. The identifier is a key word from a specific extract, from the original transcript, along with its page number (Smith & Osborn, 2007). Themes should not be selected purely based on their prevalence (Jarman, et al. 1997). In the process of creating this table, certain themes may be discarded. Once this is complete, the same thing is then done with all other 5 participants data. This type of analysis makes it ideal to incorporate all the collected data from all participants. When doing this there are two ways in which to incorporate the data; you can use themes from the first participants data to help direct any further analysis or forget about the data collected for the first participant and work off the next transcript as if it was the first. This analysis will be done with the latter.

Ethical Considerations

The participants privacy is one of the main ethical concerns, the participants will be frequently reminded of their right to withdraw at any time. As well as this, all sessions are recorded which can be construed as a breech in confidentiality, but all participants must sign a consent form acknowledging that they are aware of this.  The researcher must also try to minimize the possibility of intrusion into the autonomy of the participants, especially when a vulnerable sample is being used, such as diagnosed schizophrenics (Mahnaz , et al. 2014).

Justification

Semi-structured interviews where selected for this research scenario as they are able to provide a lot of opportunities to explore perceptions and opinions that would otherwise be complex to initiate discussion of. The open-ended style of all the questions in an SSI also allows for further probing into, what would be, sensitive topics (Barriball, 1994). This is ideal when researching schizophrenia and the stigma that comes with it ,as this research method avoids generalisations and examines participants individually on their own experiences. Another factor which contributes to the ability to examine more complex events can be attributed to the fluid frame work of an SSI. This means that it can provide in-depth and insightful data about complex phenomenon (Gale, 2013). However, this fluid frame work does require the researcher to have a less control in the semi-structured interview (SSI), to allow the participant to speak freely and comfortably. In this SSI the researcher is required to ask an opening question, that is not related to the topic that the participant is here to discuss (Cridland, 2015). This action is key for the researcher when conducting an SSI as it has been shown to relax participants more in comparison with participants who didn’t receive an off-topic opening question (Ranney, 2015). The in-depth conversation that comes hand in hand with SSI’s also allows the researcher the option to show empathy to the participant and gives them the chance to build up a rapport. By doing so it will have a positive effect on the participants relationship with the researcher, possibly allowing for greater coverage of the desired topic area (Prior, 2018). And with the topic being the stigma experienced by people diagnosed with schizophrenia, this rapport will play a vital role in getting the most relevant data.

Another advantage to using SSI is that this method can also be financially practical. By analysing the SSI’s data with interpretative phenomenological analysis (IPA). By using IPA, it will highly reduce the number of participants needed in order to produce results (Harrell, 2009). In this particular research proposal, the majority of the cost will come from data analysis, as only 6 interviews need to take place to fulfil the participant number criteria for valid results to be generated. On top of the financial benefit of a small sample size, it also means that gaining the desired amount of participants is less likely to be affected, and attrition is less likely to occur. However, the main argument when it comes to have a small sample size is that it can not be generalised to the wider population therefore the reliability of research is reduced (Boddy, 2016). On the other hand, by using SSI’s the level of in-depth data that is obtained can be seen to counteract the disadvantages of a small sample size (Anderson, et al. 2017). As well as this, since schizophrenia affects 1% of the population, it can also be argued that in a study like this, you don’t require results that are highly generalisable.

IPA has been considered the centre of idiographic commitment. Smith, in 2004, said “I encourage researchers to be even bolder in considering studies. Doing elaborate, detailed, nuanced single case studies, where the material and topic warrants it.” However, the interoperative frame work can make way for a pit fall that comes with the use of IPA, and that is that researchers start using the prompts provided by the SSI guide as the ‘themes’ that are reporting. If this was to occur, it would mean that no analytic work had been carried out. Meaning no themes wold have been identified across the entire data set, leaving the researcher unable to make sense of any patterned responses (Braun, et al. 2006). The interoperative frame work also makes way for the acknowledgment that there is no one way of conducting IPA, but also to remember that it is important to highlight that there is also a marked group of similarities when it comes to designing any qualitative research (Vasilachis, 2009). Smith, 2004, also argues that the quality of the final analysis is an individual’s own analytic work, and therefore is influenced by them, reducing the reliability of the research. But from a phenomenological perspective, IPA is particularly attractive because of its resilience and determination when it comes to exploring, interpreting, and allowing the participants to make sense of their own experiences (Tuffour, 2017).

It has also been stated, by Tuffour, 2017, that IPA has had some criticism due certain aspects of phenomenology not being compatible with cognition even though the role of cognition phenomenology is not fully understood. However, Smith et al (2004), threw out this criticism by arguing that the IPA’s necessity of sense-making and meaning-making which clearly resonates with cognitive psychology. Smith et al. (2009) also argued that IPA uses hermeneutic, idiographic and contextual analysis to understand the cultural position of the experiences people. Making the data gathered by this method much higher in validity.

Over all, SSI data can be applied across a range of theoretical and epistemological approaches, which can be expanded on or used to test an existing theory (Braun and Clark 2006). All the while, providing a rich amount of data to analyse. When examining individuals that deal with stigma due to their schizophrenia, by having a deeper understanding into how the participant feels during the event it can be said that the results will have a much higher validity especially when SSI is combined with IPA, it can demonstrate certain intra and inter-personal aspects of having a mental illness (Knight et al, 2003). For these participants stigma is evident in various ways, from closer sources including family, friends and mental health professionals and by using IPA it allows the researcher to gain in-sight into more detailed aspects of the individual and the stigma that they experience. By using these two detailed methods, it can be shown, through the research, what would be the best support, if any, in assisting these individuals in living with the stigma.

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