Methodological issues for qualitative research with learning disabled children

This paper discusses key methodological issues for qualitative research with learning disabled children, based on the author's experience of involving learning disabled children in her doctoral study. The study was founded on the social model of disability and a sociological understanding of childhood that recognizes the abilities of disabled children as competent research participants. Issues that arose throughout the research process, from the early stages of gaining access to children, to communication challenges for interviewing learning disabled children, and the analysis and dissemination of data, are discussed. Within this context, this paper explores key methodological issues for researchers with regard to interviewing learning disabled children and actively involving them in qualitative research.

The experience of research participation for family caregivers of palliative care cancer patients

There have been concerns raised regarding the ethical merit of involving dying patients and family caregivers as research participants. This study sought feedback from 103 primary family caregivers who had participated in a longitudinal research project. Caregivers were sent a questionnaire regarding the benefits and negative aspects associated with participating in research while also supporting or having supported a relative dying of cancer. The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of being involved in research and the majority (88.9%) cited no negative aspects associated with research participation. Findings of the study suggest that it is pertinent to invite family caregivers to be involved in palliative care research. Moreover, this study demonstrated that not only is it probably safe for family caregivers to be involved in research but also that many participants actually derive benefits.

Finding Your Feet in the Field: Critical Reflections of Early Career Researchers on Field Research in Transitional Societies

Fieldwork that takes place in conflict or transitional regions is becoming increasingly popular amongst early-career and more seasoned researchers, but is an area that retains an air of mystery and remains an exotic form of knowledge gathering. There exists a paucity of personal reflection on the challenges associated with conducting fieldwork in conflicted or transitional regions and a limited amount of insight into the practical steps taken in advance of and when immersed in the field. Such reticence to share honest fieldwork experiences, particularly the more challenging research that takes place in conflict or transitional settings aids in creating a culture of silence. This paper attempts to counteract this silence by drawing on the challenges experienced by two early career researchers conducting fieldwork in Uganda and Palestine, focusing on the practical steps taken in advance of entering the field, and the challenges faced whilst engaged in fieldwork. Specific challenges are highlighted throughout, including: physical access to areas in conflict; engaging with reluctant research participants; the emotional impact of fieldwork on the researcher; maintaining confidentiality; researching with vulnerable victims; and ensuring appropriate knowledge exchange between researchers and participants. The paper concludes by emphasising the requirement for greater reflection on the inherently personal challenges associated with conducting fieldwork in conflicted or transitional settings and highlights the view that fieldwork is a privileged position that carries great responsibilities which must be upheld to ensure the sustainability of future research. This paper hopes to contribute to the wider debate on conducting fieldwork and the challenges associated with working in conflicted or transitional regions.

‘Emergent reconstruction’ in grounded theory: learning from team-based interview research

Constructivist grounded theory (CGT) methods render an interpretive portrayal, a construction of reality, strengthened when the process of construction is acknowledged. An Irish team study uses CGT to explore intergenerational solidarity at individual, familial and societal levels, and their interface. The study data comprise interviews with 100 people from diverse socio-economic and
age groups. The article contributes insights on applying CGT in team-based interview research on a topic with such breadth of scope. This contrasts with the more usual focused inquiry with a defined population. Adapting the method’s guidelines to the specific inquiry involved challenges in: framing the topic conceptually; situating research participants in contrasting social contexts to
provide interpretive depth; and generating interview data with which to construct theory. We argue that interrogating the very premise of the inquiry allowed for emergent reconstruction, a goal at the heart of the method.

Research Ethics in Divided and Violent Societies: Seizing the Ethical Opportunity

This chapter explores how to conduct social research in divided and violent societies by developing the concept of the ‘ethical opportunity’. The ‘ethical opportunity’ is situated in a brief discussion of ‘action’ and feminist approaches to research. It argues that seizing the ethical opportunity requires researchers to: plan for their personal safety, plan for participants’ personal safety and plan how they will communicate and disseminate their results. It draws on the author’s personal experience researching in South Africa, Zimbabwe and Northern Ireland, concluding that it is in the communication and dissemination phase that researchers’ hopes for ‘making a difference’ may be realised or dashed. It cautions would-be researchers to manage their own – and research participants’ – expectations about what social research can achieve. Its effects may not often be as transforming and liberating as idealistic researchers hope for, but that should not dissuade them from striving towards those ends.

Allocating Participants to Groups In Educational Trials: What Does Random Mean?

What is meant by the term random? Do we understand how to identify which type of randomisation to use in our future research projects? We, as researchers, often explain randomisation to potential research participants as being a 50/50 chance of selection to either an intervention or control group, akin to drawing numbers out of a hat. Is this an accurate explanation? And are all methods of randomisation equal? This paper aims to guide the researcher through the different techniques used to randomise participants with examples of how they can be used in educational research.

Turning the categories inside-out: Complex identifications and multiple interactions in religious ethnography

This paper challenges the fixed boundaries that ethnographers have often constructed between religious insiders and outsiders. Drawing on Neitz's observations, it argues that the main task of reflexive fieldwork is locating the self in relation to ambiguous and shifting boundaries. We offer a comparative analysis of the experiences of two differently socially located researchers to illustrate how religious identity emerges as a continuum, on which one's place is negotiated with one's research participants. We also examine the importance of intersecting multiple identities. Finally, the paper questions whether social identity categories are the primary way that we relate with our respondents. It explores the spiritual and emotional dimensions of research relationships and argues that these may transform, reinforce and generally interact with social identities. Comparing our experiences, we outline the consequences of these reflections for data gathering and analysis.

The integrated school in a conflict society: a comparative analysis of two integrated primary schools in Northern Ireland

The purpose of this paper is to compare the approach to promoting positive relationships between Catholics and Protestants in two types of integrated primary school in Northern Ireland. Drawing on qualitative interviews with teachers, governors and parents in one transforming school and one grant maintained integrated school, i.e. one representative of each of the two types, the paper shows that whilst there are distinctions in the ways that the schools promote their image and ethos, the ‘lived reality’ of the schools, as reported by the research participants, is almost indistinguishable. The paper suggests that both schools tend not to refer to or explore cultural difference and that this tendency to ‘minimise difference’ seems to have the potential to silence school members who do wish to explore their own and other cultures. It is argued that such practices are likely to impede rather than facilitate the progress of good inter-community relations.

Respecting autonomy without disclosing information

There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient’s or research participant’s autonomy. In this article I set out to challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose.

Agreement between self-report and medical records on signs and symptoms of respiratory illness

Background: Information on patient symptoms can be obtained by patient self-report or medical records review. Both methods have limitations. Aims: To assess the agreement between self-report and documentation in the medical records of signs/symptoms of respiratory illness (fever, cough, runny nose, sore throat, headache, sinus problems, muscle aches, fatigue, earache, and chills). Methods: Respondents were 176 research participants in the Hutterite Influenza Prevention Study during the 2008-2009 influenza season with information about the presence or absence of signs/symptoms from both self-report and primary care medical records. Results: Compared with medical records, lower proportions of self-reported fever, sore throat, earache, cough, and sinus problems were found. Total agreements between self-report and medical report of symptoms ranged from 61% (for sore throat) to 88% (for muscle aches and earache), with kappa estimates varying from 0.05 (for chills) to 0.41 (for cough) and 0.51 (for earache). Negative agreement was considerably higher (from 68% for sore throat to 93% for muscle aches and earache) than positive agreement (from 13% for chills to 58% for earache) for each symptom except cough where positive agreement (77%) was higher than negative agreement (64%). Agreements varied by age group. We found better agreement for earache (kappa=0.62) and lower agreements for headache, sinus problems, muscle aches, fatigue, and chills in older children (aged =5 years) and adults. Conclusions: Agreements were variable depending on the specific symptom. Contrary to research in other patient populations which suggests that clinicians report fewer symptoms than patients, we found that the medical record captured more symptoms than selfreport. Symptom agreement and disagreement may be affected by the perspectives of the person experiencing them, the observer, the symptoms themselves, measurement error, the setting in which the symptoms were observed and recorded, and the broader community and cultural context of patients. © 2012 Primary Care Respiratory Society UK. All rights reserved.

Pre-validation methods for developing a patient reported outcome instrument

BACKGROUND: Measures that reflect patients' assessment of their health are of increasing importance as outcome measures in randomised controlled trials. The methodological approach used in the pre-validation development of new instruments (item generation, item reduction and question formatting) should be robust and transparent. The totality of the content of existing PRO instruments for a specific condition provides a valuable resource (pool of items) that can be utilised to develop new instruments. Such 'top down' approaches are common, but the explicit pre-validation methods are often poorly reported. This paper presents a systematic and generalisable 5-step pre-validation PRO instrument methodology.

METHODS: The method is illustrated using the example of the Aberdeen Glaucoma Questionnaire (AGQ). The five steps are: 1) Generation of a pool of items; 2) Item de-duplication (three phases); 3) Item reduction (two phases); 4) Assessment of the remaining items' content coverage against a pre-existing theoretical framework appropriate to the objectives of the instrument and the target population (e.g. ICF); and 5) qualitative exploration of the target populations' views of the new instrument and the items it contains.

RESULTS: The AGQ 'item pool' contained 725 items. Three de-duplication phases resulted in reduction of 91, 225 and 48 items respectively. The item reduction phases discarded 70 items and 208 items respectively. The draft AGQ contained 83 items with good content coverage. The qualitative exploration ('think aloud' study) resulted in removal of a further 15 items and refinement to the wording of others. The resultant draft AGQ contained 68 items.

CONCLUSIONS: This study presents a novel methodology for developing a PRO instrument, based on three sources: literature reporting what is important to patient; theoretically coherent framework; and patients' experience of completing the instrument. By systematically accounting for all items dropped after the item generation phase, our method ensures that the AGQ is developed in a transparent, replicable manner and is fit for validation. We recommend this method to enhance the likelihood that new PRO instruments will be appropriate to the research context in which they are used, acceptable to research participants and likely to generate valid data.

Politically sensitive encounters: Ethnography, access and the benefits of ‘hanging out’

Negotiating politically sensitive research environments requires both a careful consideration of the methods involved, and a great deal of personal resolve. In drawing upon two distinct yet comparable fieldwork experiences this paper champions the benefits of ethnographic methods in seeking to gain positionality and research legitimacy amongst those identified as future research participants. The authors explore and discuss their use of the ethnographic concept of ‘hanging out’ in politically sensitive environments when seeking to negotiate access to potentially hard to reach participants living in challenging research environments. Through an illustrative examination of their experiences in researching commemorative rituals in Palestine and mental health in a Northern Irish prison, both authors reflect upon their use of hanging out when seeking to break down barriers and gain acceptance amongst their target research participants. Their involvement in a range of activities, not directly related to the overall aims of the research project, highlight a need for qualitative researchers to adopt a flexible research design, one that embraces serendipitous or chance encounters, when seeking to gain access to hard to reach research participants or when issues of researcher legitimacy are particularly pronounced such as is the case in politically sensitive research environments.

Developing a Reporting Guideline for Social and Psychological Intervention Trials

Social and psychological interventions are often complex. Understanding randomized controlled trials (RCTs) of these complex interventions requires a detailed description of the interventions tested and the methods used to evaluate them; however, RCT reports often omit, or inadequately report, this information. Incomplete and inaccurate reporting hinders the optimal use of research, wastes resources, and fails to meet ethical obligations to research participants and consumers. In this article, we explain how reporting guidelines have improved the quality of reports in medicine and describe the ongoing development of a new reporting guideline for RCTs: Consolidated Standards of Reporting Trials-SPI (an extension for social and psychological interventions). We invite readers to participate in the project by visiting our website, in order to help us reach the best-informed consensus on these guidelines (http://tinyurl.com/CONSORT-study).

Moving on, not out: when young people remain homeless

This article explores the contours of continued housing instability among a group of young people who are participants in a qualitative longitudinal study of youth homelessness in Dublin, Ireland, and considers the limitations of the ‘acculturation’ thesis in explaining long-term homelessness amongst the young. Baseline interviews were conducted with 40 young people, aged 14–23 years, in 2004, and follow-up interviews were conducted with 30 research participants successfully ‘tracked’ in 2005–06. By the time of follow-up, 17 of those interviewed had exited homelessness and 13 remained homeless. The article focuses on the latter group with the aim of exploring the processes and experiences associated with their continued homelessness. The findings presented demonstrate the adverse impact of their ongoing movement through emergency services targeting the under-18s, including their greater immersion in drug and criminal lifestyles. A majority had experienced one or more period of incarceration by the time of follow-up, and many were users of adult homeless services. Whilst some dimensions of young people's accounts are suggestive of a process of acculturation to street and hostel life, we argue that their continued homelessness is better explained as a consequence of their ongoing and unresolved transience and, in particular, their continued dependence on emergency hostel accommodation. The implications of the findings for policy and service provision for homeless young people are discussed.