Study Quality

The studies are evaluated using the Elliot et al. (1999) guidelines. Table 2.3 below summarizes the quality attributes of each study.

Table 2.3: Quality of studies

Coherence General vs specific for adults with ID Experience of poor diabetes management

Somewhat:

Geographical and clinical setting, but some

Does not describe limitations of the ID or caregiver provided, but little about individual lack of clarity in thematic

structure

Dysch et provided as well situational

information about the participants

Yes: limitation of single geographical region,

homogenous group

Mostly: provided, but little about individual provided, but little about individual

Findings of the study are linked to other wider findings on carer training and qualifications, but limits of small, homogenous sample are not acknowledged

Somewhat: Somewhat: Somewhat: Somewhat: Yes: Somewhat: Somewhat:

No researcher provided, but little about individual no evidence of triangulation/

Findings of the study are linked to other wider findings on carers in

residential settings, but limits of small, homogenous sample are not acknowledged provided, but little about individual sample size and using provided as well situational triangulation or varication from sample size and representativeness

There were several study overlaps in this review, where research was carried out as part of a wider team, with individual studies addressing different aspects of

phenomena. The Cardol et al. (2012a&b) studies were two arms of a research project carried out by the same research team in The Netherlands. The majority of the studies in this review (N = 4) were carried out by a team in New Zealand, and Australia, comprising of Rey-Conde et al. (2005), Hale et al. (2011), Trip et al.

(2016), and Whitehead et al. (2016). Despite the research overlaps, each study is reviewed in its own right. Therefore, lower quality ratings are given to studies which do not include information provided elsewhere in other studies carried out by the same research team, unless the study is explicitly referenced.

2.6.3.1. Owning perspective

This criterion describes the extent to which studies acknowledged the position of the researcher, including their background, theoretical beliefs and assumptions prior to data collection. Most of the studies did not include this information in the study, with the exception of Rey-conde et al. (2005), who described the research team as being part of a clinical service for adults with ID, and that expectations were low due to observing poor self-management. This positioning is useful in that the reader is able to judge what the impact of this may have been on the researcher’s analytical

approach and conclusions (Elliot et al., 1999). In this case, the negative findings supported the presuppositions. However, it was difficult to conclude whether this suggested a possibility of confirmation bias, as other aspects of evidence, such as transcript excerpts, were less well described (see below). This was despite the fact

that the majority of the studies wrote in the first person, with the exception of Trip et al. (2016), and Whitehead et al. (2016), which can help with presenting a subjective stance (Elliot et al. 1999).

2.6.3.2. Situating the sample

This assesses the level of detail provided about the participants, such as the location and nature of the sample and demographics. Many of the studies provided detailed demographics, with the exception of Rey-Conde et al. (2005). However, situational information about individual participants was only provided in one study (Dysch et al., 2012). This omission made it difficult to judge the extent to which the

surrounding context was relevant to data. Further personal, details such as recent life events or family circumstances may have enabled the reader to evaluate the accuracy of the themes. This can be explained by the fact that Dysch et al. (2012) had the smallest sample in the review (N = 4), which may have provided scope for greater detail on individual participants.

2.6.3.3. Grounding in example

This refers to the inclusion and depth of examples from raw data provided in the studies. The methodological approach in all of the studies included in this review involved analysis of transcripts; therefore, the examples were all transcript excerpts, where provided. All the studies provided examples. However, the richness of the

examples varied across the studies; Whitehead et al. (2016) provided substantial transcript excerpts which supported the themes which were presented, whereas Rey-Conde et al. (2005) and Trip et al. (2016) provided sparse and brief examples which made it difficult to evaluate the accuracy of the analysis. In general, the transcripts of people with ID were better exemplified than representing caregivers.

This is counterintuitive, given the communication difficulties of people with ID; richer examples could potentially have been provided from the caregivers.

2.6.3.4. Credibility checks

This describes the evidence in studies of checking credibility of analysis; including codes, categories, and themes. Many of the studies described credibility checks to some degree, except for Rouse and Finlay (2016). Rey-Conde et al. (2005)

described triangulation, through checking transcripts against audio recordings.

However, there was no mention of additional auditing, for example using a second researcher. Similarly, Trip et al. (2016) described multiple readings of transcripts, yet did not use triangulation or verification through another researcher. Hale et al.

(2011), Dysch et al. (2012), Cardol et al (2012a&b) and Whitehead et al. (2016) described a review process where coding and themes were discussed until

consensus was reached. The general adherence to this guideline across the studies gives credibility to the analyses.

2.6.3.5. Coherence

Coherence refers to the comprehensibility of the studies, including the presentation and structure. The Elliot et al. (1999) guidelines describe good examples of this as studies which include figure representations of the analytic procedure, including a description of the hierarchical relationship of categories and sub-categories. A total of four studies conformed to this guideline (Dysch et al., 2012; Cardol et al.,

2012a&b; Trip et al., 2016). Rey-Conde et al (2005) and Whitehead et al. (2016) did not provide descriptions of the hierarchical structure or supportive figures. Hale et al.

(2011) described sub-themes but did not support these with figures. These variations may reflect differences in journal stipulations, such as figure inclusions and word count. However, without a clear description of the analytic process it is impossible for the reader to evaluate whether the themes are accurate, or to be able to reach alternative conclusions.

2.6.3.6. Accomplishing general versus specific research tasks

This refers to the aims of the study in relation to generalizability and limitations, which are bound by factors such as sample size, homogeneity, and setting. The intention of qualitative studies is to understand and represent the experiences of individuals, rather than finding commonalities which can be generalized to wider populations (Elliot et al., 1999). In this sense, it is important for studies to

acknowledge the restrictions of qualitative methodology when making claims about the generalizability of findings. The earliest two studies did not acknowledge the

limitations of their sample sizes and nature (Rey-Conde et al. 2005; Lennox et al., 2009). Cardol et al. (2012b) and Trip et al. (2016) did not fully report the limitations of their sample in terms of generalizability, however they both reflected that their findings were consistent with other studies in the literature. The remaining studies reported limitations or stated that the study was to be treated as exploratory, whilst also highlighting the importance of their findings. This step was important to include, yet it was omitted in older and more recent studies, which was detrimental to their claims.

2.6.3.7. Resonating with the reader

This criterion asks the reader to make a conclusive judgment, weighing up the combined evaluation of the prior points to report a sense of the impression left by reading the study. In the present section, this is taken a step further, to evaluate the overall impression of the eight studies identified in this review. There were no

studies which gave a strong sense of resonating with the reader, which was due to a variety of omissions across the criteria. The most commonly missed criterion was

‘’Owning perspective”, with only one study including this (Rey-Conde et al., 2005).

The studies therefore lacked a sense of who the researchers were, as well as what their assumptions and expectations were, thus evoking an objective, scientific sense of detachment found, in quantitative studies. Other studies resonated less well due to sparse or brief transcript excerpts, unclearly described analytical procedures, or lack of description of thematic structure.

Despite these drawbacks, the findings in the studies were insightful, and the fact that the studies concur on many themes (see main findings above) strengthens their validity. What is missing is the sufficient detail for the reader to weigh up the position of the author and the supporting evidence of the data, against their

conclusions, and to potentially be able to make additional or alternative conclusions.

These omissions may reflect an adherence to the longstanding tradition of objectivity in research, which does not serve as an appropriate tool for evaluating standards in qualitative research (Elliot et al. 1999).