Trying to Get it Right: undertaking research involving people with learning difficulties

This paper uses criteria defined by Zarb to describe research undertaken with people with learning difficulties, in the context of an emerging emancipatory paradigm. First, the paper addresses the question: Who controlled the research and what it was about? It considers consultation with people with learning difficulties, the influence of public service organisations and the ethical committee. Secondly, the paper evaluates how far disabled people were involved in the research process, and discusses issues relating to the inclusion of people with learning difficulties as respondents, obtaining informed consent and the involvement of carers in interviews. Finally, the paper discusses the questions: What opportunities existed for disabled people to criticise the research and influence its future direction? What happened to the products of the research? The role of a pilot study, opportunities to provide feedback and dissemination strategies are described.     

Informed Consent as Process: Problematizing Informed Consent in Organizational Ethnographies

This article examines the implications of informed consent in organizational ethnographies, where the research site is a bounded and formal institution that has its own sets of rules which govern action and membership. While there is considerable scholarship on the issue of ethics in ethnography in general, very little has been written about informed consent in organizational ethnographies where researchers often simultaneously observe managers, “studying” up according to Nadar, and employees referred to as “studying down”. Organizational researchers tend to discuss ethics in terms of obtaining informed consent for individual interviews or in terms of access to an organization as a research site. This essay examines ethical dilemmas experienced in fieldwork studying participatory work arrangements in a Mexican garment firm. By discussing practical issues of gaining access, problems of maintaining access and consent, and concerns of how gatekeeper consent affects subordinates, I problematize the practice of obtaining informed consent in organizations. I argue that thinking of informed consent as an on-going process that requires an active reflexivity on the part of the ethnographer will help researchers to navigate the ever-shifting web of power dynamics present in organizations.     

ON BALANCE AND SYNERGY: FAMILY THERAPY AND QUALITATIVE RESEARCH REVISITED

Our respondents have provided though-provoking counterpoints to our original paper (Moon, Dillon, & Sprenkle, 1990). Our response is one of synthesis. First, we describe a continuum of social science inquiry paradigms as a framework for exploring the assumptions underlying our respective positions. Second, we address the key issues raised by our respondents. Third, we encourage balance in our research efforts and continuing dialogue. Finally we restate our basic thesis-that qualitative research methodology has the potential to advance the science and practice of family therapy.     

Contentious issues in research on trafficked women working in the sex industry: Study design,ethics, and methodology

The trafficking of women and children for work in the globalized sex industry is a global social problem. Quality data is needed to provide a basis for legislation, policy, and programs, but first, numerous research design, ethical, and methodological problems must be addressed. Research design issues in studying women trafficked for sex work (WTSW) include how to (a) develop coalitions to fund and support research, (b) maintain a critical stance on prostitution, and therefore WTSW, (c) use multiple paradigms and methods to accurately reflect WTSW's reality, (d) present the purpose of the study, and (e) protect respondents’ identities. Ethical issues include (a) complications with informed consent procedures, (b) problematic access to WTSW, (c) loss of WTSW to follow‐up, (d) inability to intervene in illegal acts or human rights violations, and (e) the need to maintain trustworthiness as researchers. Methodological issues include (a) constructing representative samples, (b) managing media interest, and (c) handling incriminating materials about law enforcement and immigration.     

The relationship between marriage and family therapists and complementary and alternative medicine approaches: a qualitative study

In this article, we delineate the qualitative phase of a mixed-method research study focused on understanding the relationship between Clinical Members of the American Association for Marriage and Family Therapy (MFT) and complementary alternative medicine (CAM). Based on an analysis of the data derived from telephone interviews with 54 respondents, we describe four themes: definitional issues, depth of awareness of CAM, fit with MFT, and ethical considerations. Our discussion focuses on the findings of this phase, considerations from the quantitative phase, and reflections on the research study as a whole. While acknowledging the limitations of the study, we conclude that the growing awareness of and involvement with CAM approaches and practitioners among MFTs suggest a need for further education for both professionals and clients. We also note the importance of additional research support for the use of CAM practices.     

Who Cares about Water Pollution? Opinions in a Small-Town Crisis*

A survey was conducted in a small New England town following the discovery that the town's water supply had become contaminated by industrial chemicals. Principal findings include: (1) respondents from more affluent households were more concerned about the pollution problem; (2) long-term or older residents tended to be less concerned; and (3) women with young children viewed the problem as particularly serious. The first two findings are consistent with previous research on similar “technological catastrophes” and on environmental protection in general. The third finding has not appeared in environmental protection research, but it is consistent with reports from Three Mile Island. Such technological catastrophes transform environmental issues into safety issues, thereby raising parents’anxieties about the safety of their children–perhaps more so for women than for men. These safety concerns may eventually be generalized to broader environmental issues, as toxic waste and other disasters continue to occur.     

Unauthorized Status and Youth Development in the United States: Consensus Statement of the Society for Research on Adolescence

In the United States, 5.3 million children and adolescents are growing up either with unauthorized status or with at least one parent who has that status. Until recently, little in the way of research has informed federal, state, and local policy debates related to unauthorized status (e.g., border enforcement, deportation, and a pathway to citizenship) although these issues have important implications for youth development. This statement is a brief summary of the research evidence on multiple domains of development that may be affected by the child or parent's unauthorized status. We also describe the contextual and psychological mechanisms that may link this status to developmental outcomes. We summarize a range of policies and practices that could reduce the developmental harm to children, youth, and their families stemming from this status. Finally, we conclude with recommendations for policy, practice, and research that are based on the evidence reviewed.     

Initial teacher education for inclusion: a review of the literature

This article presents a review of the literature on initial teacher education for inclusion published from 2000 to 2014. The analysis uncovers a number of aspects of concern to academics, researchers, teacher educators, and policy-makers. Making informed decisions about the design of initial teacher education courses and units of study for inclusion depends upon addressing some fundamental issues (i.e. the legacy of special education, and the challenges faced in different regions) and making a balanced and informed assessment of the value of content-infused, single-unit, and school placement/experience approaches. The article discusses the implications of this literature review’s findings for future research.     

Empathic responses by cyberbystanders: the importance of proximity

Cyberaggression, and its' specific sub-type, cyberbullying, have become a widely debated and studied issues, but we still lack knowledge about cyberbystanders, whose reactions (or lack thereof) can play a crucial role. One of the important factors determining behavioral outcomes is cyberbystanders’ empathic response to the incident. Certain features of cyberaggression incidents (e.g. distance and the invisibility of those involved) raise the question of what conditions tend to encourage (or inhibit) empathetic responses on the part of cyberbystanders. Therefore, we investigated the link between the empathic responses of 453 Czech adolescent cyberbystanders (age 12–18) and the context in which they become aware of ongoing cybervictimization. We found that being directly present and being informed by the victim increased emotional response, while witnessing it only online or being informed by others had no effect. We discuss the importance of including the dimensions of ‘proximity’ or ‘directness’ in both prevention and intervention efforts and future research on cyberbystanders’ reactions.     

Improving Gambling Survey Research Using Dual-Frame Sampling of Landline and Mobile Phone Numbers

Gambling prevalence studies are typically conducted within a single (landline) telephone sampling frame. This practice continues, despite emerging evidence that significant differences exist between landline and mobile (cell) phone only households. This study utilised a dual-frame (landline and mobile) telephone sampling methodology to cast light on the extent of differences across groups of respondents in respect to demographic, health, and gambling characteristics. A total of 2,014 participants from across Australian states and territories ranging in age from 18 to 96 years participated. Interviews were conducted using computer assisted telephone interviewing technology where 1,012 respondents from the landline sampling frame and 1,002 from the mobile phone sampling frame completed a questionnaire about gambling and other health behaviours. Responses across the landline sampling frame, the mobile phone sampling frame, and the subset of the mobile phone sampling frame that possessed a mobile phone only (MPO) were contrasted. The findings revealed that although respondents in the landline sample (62.7 %) did not significantly differ from respondents in the mobile phone sample (59.2 %) in gambling participation in the previous 12 months, they were significantly more likely to have gambled in the previous 12 months than the MPO sample (56.4 %). There were no significant differences in internet gambling participation over the previous 12 months in the landline sample (4.7 %), mobile phone sample (4.7 %) and the MPO sample (5.0 %). However, endorsement of lifetime problem gambling on the NODS-CLiP was significantly higher within the mobile sample (10.7 %) and the MPO sample (14.8 %) than the landline sample (6.6 %). Our research supports previous findings that reliance on a traditional landline telephone sampling approach effectively excludes distinct subgroups of the population from being represented in research findings. Consequently, we suggest that research best practice necessitates the use of a dual-frame sampling methodology. Despite inherent logistical and cost issues, this approach needs to become the norm in gambling survey research.     

EAP Service Use in a Managed Behavioral Health Care Organization: From the Employee Perspective

Contemporary employee assistance program (EAP) services are typically provided in broad-brush programs delivered by large external vendors in a network model. Yet research has not kept pace with EAP evolution, including in terms of how EAP clients themselves view services. We surveyed a random sample of EAP service users from a national provider (361 respondents). About one-third of respondents reported getting help for workplace issues. Most learned about the EAP through employer communications such as the company website. The large majority reported that the EAP helped them "a lot" or "some," suggesting they valued this benefit.     

Some Ethical and Methodological Issues in Research with People with Learning Difficulties

This paper discusses some ethical and methodological issues which arose in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as contributors to the study design. Various dilemmas were encountered-including how to gain informed consent from people with profound impairment, the risk of intrusion when conducting research in people's own homes, and the dangers of raising expectations of continuing friendship. The importance of accountability when analysing data and disseminating findings is highlighted. A Research Advisory Group, including two people with learning difficulties, was set up to give guidance on the study. Steps were taken, but not enough, to facilitate their involvement in the meetings. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for future research are drawn. These include the need to consider the potential implications of intellectual impairment for involvement in the research process.     

Primary Age Children Excluded from School: A Multi Agency Focus for Concern

SUMMARY: Exclusion from school is only one of a number of sometimes complicated and often inter-related reasons why children are not attending school Much of the focus of research and debate about exclusions has been about secondary age pupils. This paper begins to raise some of the issues that may make primary age exclusions a particular focus of concern and one that should reach and be addressed by a variety of agencies. The paper draws on research recently completed at the SSRIU (Social Services Research and Information Unit), University of Portsmouth, and is informed by an ESRC funded project in progress, which is investigating primary age exclusions at a national level.     

Adoptees' and Birth Parents' Therapeutic Experiences Related to Adoption

ABSTRACT

This study examined adoptees' and birth parents' experiences in therapy, including the perceived level of helpfulness and preparation by therapists relating to adoption issues as a function of the year these experiences occurred. Participants consisted of 152 adoptees and 66 birth parents, with the majority (78%) of the respondents being female. Overall, adoption inquiry, addressing adoption issues, helpfulness, and preparedness by therapists increased from 1965 though the 1990s. Therapists who inquired about adoption (54%) or addressed adoption (72%) were perceived as being significantly more prepared and helpful compared to those therapists who did not inquire about or address adoption issues.     

POLITICAL IDENTITIES AND POLITICAL LANDSCAPES:

This article presents case studies of two men who have a history of political activism on "women's' issues. The aim of my analysis is to describe the interpretive practice (Gubrium and Holstein 1994) through which the respondents construct individual political identities that make sense of their activism. The analysis treats identity as a narrative construction and also demonstrates that the context of this identity work is itself a construction. When respondents talk about their involvement in women's issues, they simultaneously construct an image of the political landscape, their own identities, and a relationship between the two.
In their narratives, the two men constructed very different images of the political landscape and identities in relation to it. One man interpreted the autobiography he constructed in terms of socialization and social learning in an effort to demonstrate an ongoing engagement with feminist concerns. The other man invoked a folk theory, consistent with feminist standpoint epistemology (Harding 1990), that used his gender to "define him out' of activism on women's issues.
I argue that these cases (1) demonstrate that narrative operates as a site at which men negotiate their relationship to gendered politics and women's issues and (2) represent a previously unrecognized dynamic of interpretive practice (Gubrium and Holstein 1995) in which actors assume discretion over the narrative construction of both their identities and the context in which that identity is to be understood.     

CARRYOVER EFFECTS IN ATTITUDE SURVEYS

Answers to attitude questions in surveys can vary markedly dependingon the preceding items in the questionnaire. This study concernssuch context effects. More than 1,100 respondents were askedabout six target issues in a telephone survey. Before answeringthe target questions, most of the respondents had been askedabout one of two sets of related issues; the remainder receivedunrelated, "neutral" context items. For five of the six targetissues, the two groups receiving different sets of context itemsdiffered significantly in their answers to the target questions.However, only one of the substantive context groups differedsignificantly from the group that received the neutral contextitems. Additional results indicated that context effects werelarger when respondents reported that their beliefs about thetarget issue were both mixed and important. Coding of openendedresponses to follow-up questions suggested that the contextitems may have changed how respondents thought about the targetissues.     

Cultural transmission,educational attainment and social mobility

This paper examines the relationship between cultural socialisation, educational attainment and intergenerational social mobility. Picking up on debates about the transmission of cultural capital and social advantage, we use data from the Taking Part Survey of England to analyse how far socialisation into cultural activities and encouragement play a role in educational attainment, intergenerational mobility and in the reproduction of class. This survey has unprecedented data on whether respondents had been taken to museums/art galleries, theatre/dance/classical music performances, sites of historic interest, and libraries when they were growing up. This is buttressed by information on how much parents or other adults encouraged the respondents to read books or to be creatively active in different domains of the arts, literature and music. Using these rich measures of childhood socialisation, we can show that part of the effect of parental class on educational attainment is due to the transmission of this kind of cultural capital. Moreover, this transmission also has a direct effect on the level of educational attainment. In a similar fashion, respondents who have experienced a higher intensity of cultural socialisation are more likely to be upwardly mobile, and likewise, cultural transmission has a positive effect on the prevention of downward mobility among service class children. These results are discussed in the light of current issues in British mobility research and its treatment of cultural aspects of class and mobility.     

Adult protective services and animal welfare: should animal abuse and neglect be assessed during adult protective services screening?

Past research has examined links among animal abuse, child maltreatment, and intimate partner violence and demonstrated the importance of addressing the needs of both human and animal victims. We hypothesized that there might be a similar link between animal abuse and older adult welfare issues. As a first step in the earlier research was the development of a screening protocol that shed light on the link between domestic violence and animal abuse, we decided to follow a similar route to explore this new topic by asking state government representatives about their experiences, if any, with this topic. Here we report the results of a national survey of state Adult Protective Services agencies regarding their protocols for assessing animal welfare issues in the context of older adult maltreatment. We also describe a model assessment protocol we developed in collaboration with the Utah Division of Aging and Adult Services.