As with the general population, people with Intellectual Disabilities (ID) are all different. Add to this their inclusion within social groups which generally misunderstand, or rather, do not take the time to understand their needs, wants and aspirations, and it can be seen that it is increasingly important to address the need for appropriate and flexible research, which includes and accommodates for people with ID in various ways.

The current paper is published by the Journal of Applied Research in Intellectual Disabilities (JARID), a journal which claims a long standing association with qualitative research involving those with ID.

Beail and Williams (2014) note that other leading journals, and arguably all published media, appear more hesitant in their engagement with this group, despite ever evolving qualitative methods, which give voice to the ID research participant. Therefore, this paper seeks to outline the current methodological approaches to research with, and for, people with ID, aiming to understand more about how qualitative research, such as interviews and focus groups, are represented within the volumes of the most prolific journals.

While most Journals state that both qualitative and quantitative methods are welcomed for inclusion within their pages, the reality can be somewhat different. The authors therefore question how qualitative research is approached, and critically reflect on the academic tendency to publish papers which discuss methods more often than applicable findings.

Methods

The frequency of qualitative research papers over a ten year period is reviewed, identifying three volumes from both 1999-2001 and 2009-11. Three Journals were recognised as pre-eminent in the field of ID: Jarid; Journal of Intellectual Disability Research (JIDR); and The American Journal of Intellectual and Developmental Disabilities (AJIDD).

Papers were qualified as qualitative if they displayed use of interviews, focus groups, text analysis or case studies and included those articles which showed evidence of a data analysis rooted in meaning as opposed to numbers. These findings were tabulated to allow a comparison to be drawn between journals.

Main themes and commonalities were identified within the existing literature. These themes include participant identification and numbers, participant abilities, quality of data, the interview process and the analysis of the data so gained.

Findings

Qualitative research with people with ID is on the rise within leading journals, but still occupies a marginal position in comparison with quantitative research.

More research is required which investigates how people with ID engage with their ‘disabled label’, recognising that this is a potential stumbling block to their inclusion within studies.

Researchers should think more carefully about their role in making research achievable for people with ID, thinking more widely about appropriate communication methods and feeling freer in their choice of methodologies and frameworks.

Interviews with people with ID’s are shorter than interviews with those without. Beail and Williams (2014) ask if this is due to the suitability of qualitative methods for people with ID. It may be more significant to evaluate ‘research done well’, which contributes to the body of knowledge, as opposed to assuming that fewer themes discussed indicates less rich data (Smith an Osborne, 2008).

Journal requirements often limit the representation of the ID person within the text and so, it would be beneficial to have submissions reviewed by those who are both open-minded about research frameworks and experienced in qualitative research.

Strengths and limitations

The paper recognises the limitations of qualitative research within the journals selected and usefully uses this as a basis from which to comment on the scarcity of knowledge about ID lives, which this dearth creates. In particular, it highlights the need for less prescriptive ways of thinking about research, both from the perspective of the researcher and those reviewing articles for journal inclusion.

While this is indeed a strength, the paper could draw more heavily on other overtly creative and ‘experimental’ work which is taking place within other journals, showcasing good publishing practice on the subject of ID. Moreover, it may have been useful to suggest ways in which researchers are able to expand their scope when reviewing literature, but also in deciding where to publish their work.

Although the paper does end by encouraging researchers to become increasingly experimental in their forms of dissemination, e.g. through film, further analysis was required on the potential impacts that creative research is able to have on policy and practice.

Furthermore, there is no discussion on how such work would be fed back in to create wider knowledge on ID experience. Similarly, the paper does not deal with the potentially empowering affects of more appropriate forms of research and dissemination on the ID participant. Having said this, Beail and Williams do briefly discuss the need for researchers to be aware of the impact of research, both negative and positive, on the ID participants with whom they work.

It is also interesting to note that, despite being a review of qualitative approaches, the authors feel the need to present at least some of their data in quantitative format, perhaps a further nod to the need for change in how papers are selected for publishing and, possibly more importantly, the ways in which researchers present their work to appeal to the sensibilities of the more prolific journals.

Summary

The findings within the paper demonstrate a number of ways in which research practice can be improved in order better to reflect the nuances of ID lives. Positives are there to be gained by loosening the parameters of what constitutes a ‘suitable’ entry for publication to include more evidence of qualitative methods within papers, and a higher prevalence of qualitative articles within leading journals.

Therefore, allowing the intimate textures of ID experience to shine through and become known, and the horizons of ID research to be expanded.

Nind (2008) has argued that traditional qualitative research often suggests that all ID participants are the same, and so, future research can, and arguably should, push the boundaries of what constitutes ‘acceptable’ research practice in order best to represent the individuality of LD experience, as well as the commonalities which can be influential at the political level.

Links

Beail, Nigel and Williams, Katie (2014) Using qualitative methods in research with people who have intellectual disabilities. JARID, vol. 27, p.p 85-96 [Abstract]

Nind, Melanie (2008) Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. National Centre for Research Methods.