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Methodological challenges of sensitive topic research with adolescents
Abstract
Purpose
The purpose of this paper is to focus on the methodological challenges in the design and implementation of an emotionally sensitive topic involving research with adolescents based on a study evaluating the experiences of adolescents and families facing a diagnosis of maternal cancer.
Design/methodology/approach
This conceptual paper builds an argument based on experiences from the field of qualitative data collection with adolescents and builds on arguments that were identified in the literature to provide with a detailed argument on the methodological challenges that researchers can face while undertaking sensitive research with young people.
Findings
Carrying out research on sensitive topics is challenging because rigour can be affected by real people experiencing pain, sorrow and other emotions linked to sensitive and difficult moments in their lives. Researchers need to decide how they will deal with the emotional impact that these topics can have on them as people but also continue to carry out high quality research.
Originality/value
This paper adds to the current body of knowledge by describing the challenges faced in the field carrying out data on sensitive issues with adolescents but it also provides alternatives and solutions on how these limitations can be overcome from early stages of the research design until the dissemination of results.
... When conducting sensitive research, it is crucial to exercise utmost sensitivity. This type of research involves direct interaction with vulnerable individuals, often addressing challenging and sensitive topics within complex contexts (Rodriguez, 2018;Liamputtong, 2007Liamputtong, , 2020. Consequently, researchers investigating sensitive topics must carefully assess the potential impact on both the participants and themselves. ...
... As we can see, adolescents are carrying a lot on their shoulders and this weight can often burden them. Some of it can be "mentalizable" or a subject of play by benevolent adults (e.g., parents, teachers, therapists) but other parts of it are better left untouched as they are the domains of sensitive topics like emerging sexuality, romantic relationships, friendship and betrayal, substances, eating habits, mental health, perspectives on the future, etc. (Rodriguez, 2018). ...
The article attempts at conceptualizing the basic principles of how adolescents develop, getting out of childhood and proceeding to enter young adulthood. The age period of adolescence is marked with intense emotional states, lines of thinking, beliefs and transitions that caregivers often face challenges making sense of or mirroring. Combining mentalization-based approaches with neuropsychoanalytic findings about how basic emotional systems governing playful behavior work can shed additional light into the communication channels and specificities therapists might consider when engaging in such endeavor.
... While timing is essential when researching sensitive topics (cf. Goodrum and Keys 2007), social science research scholars tend to disagree on a 'perfect timing' to carry out sensitive research (Rodriguez 2018). Timing in sensitive research is determined by the nature of a topic and the participants to be studied. ...
While the complexities associated with sensitive research across various domains have garnered significant scholarly attention, there remains a noticeable gap in the literature concerning the methodological and ethical challenges of investigating a sensitive female genital mutilation (FGM) practice. Drawing upon our research experience and relevant literature, this paper provides a reflective analysis of the methodological and ethical challenges encountered during our data collection in Tarime, Tanzania. The paper delves into four interrelated themes: access to the field, researcher’s identity, research timing, and the power of sensitive topics, and reflects on their implications for methodological design and ethical conduct in FGM research. In addition to examining these challenges, the paper offers judicious choices and practical strategies we employed to address them in the field. The paper offers valuable insights into the importance of FGM researchers’ preparedness and flexibility in applying culturally sensitive strategies tailored to the unique local contexts to mitigate the potential challenges that may arise when researching a potentially sensitive and illegal FGM practice.
... EHW and JMM engaged with young people involved in MYSTORY and engaged in critical reflexivity (Spencer et al., 2020), by reflecting on and discussing their influence on the research. EHW used a research diary to enhance reflexivity by: (i) reflecting on the influence of identity and personal insights (Rabiee, 2004;Leavy, 2017;Meskell et al., 2021), (ii) appraising how actions and relationships could influence young people's engagement (Berger, 2015;Water, 2018;Montreuil et al., 2021;Abma et al., 2022), and (iii) reflecting on sensitive aspects of MYSTORY (Rodriguez, 2018) and the unprecedented complexities related to COVID-19. ...
Anxiety, depression, and suicide are leading causes of disability and death among young people, globally. Schools are an ideal setting to target young people's mental health, yet young people's beliefs about and experiences with school mental health and suicide prevention are not well understood. This gap in knowledge contradicts both national and international youth mental health recommendations and the United Nations Convention on the Rights of the Child, which collectively advocate for understanding young people's perspectives on matters concerning them, including school mental health. Therefore, the Mental Health of Youth Story (MYSTORY) study explored young people's perspectives on school mental health and suicide prevention using a participatory-based approach incorporating photovoice. MYSTORY consisted of a community/university partnership involving young people as participants (n = 14) and advisors (n = 6). Experiential, reflexive thematic analysis (TA) within a critical approach generated three themes relating to young people's experiences with and beliefs about school mental health promotion and suicide prevention. Findings highlight the critical role of schools in impacting young people's mental health, with the need to amplify youth voice and involvement in school mental health evident. Our study addresses an important gap by employing participatory-based approaches to explore young people's perspectives on school mental health and suicide prevention. This is the first known study to explore young people's perspectives on their voice and involvement in school mental health. Findings have important implications for youth and school mental health and suicide prevention research, policy, and practice.
... The power dynamic between a researcher and participant can impact the data collection process and the subsequent narrative presented in the written work. It is suggested that within traditional research relations, the power balance is typically asymmetrical (Fahie, 2014), with the researcher credited with the thought process which constructs the study and the participants with the material to be studied (Reason, 1994). As an approach to researching with potentially vulnerable groups and addressing sensitive subject matter, this has drawn criticism for being too rigid and limiting the focus on the voices of the groups under study (Doucet and Mauthner, 2012). ...
Purpose
As society becomes ever more reliant on Internet technology for everyday communications, this paper explores the use of instant messaging (IM) in qualitative research. Discussed within the context of sensitive topic research with potentially hidden and hard-to-reach groups, the purpose of this paper is to discuss the value of adaptive and contemporary research approaches which facilitate participation on the terms of the participant.
Design/methodology/approach
Reflecting on the data collection process from the primary authors’ PhD research, this paper critically considers some of the issues raised by IM-facilitated at semi-structured interviews.
Findings
This paper raises a number of issues, including how the perceived depth of participant response is influenced by their brevity, resultant of the space between parties which allows for considered and concise communication. This disconnect, created by the use of technology, also has implications for the power relations between researcher and participant and the ability to identify the non-verbal cues which communicate emotion and sentiment.
Originality/value
This paper highlights that whilst limited in some respects, an IM-facilitated interview provides a unique platform through which hidden and hard-to-reach groups may be empowered to participate in research, which they may usually avoid.
Introduction:
There is little to no evidence in Canada on the barriers that youth face when accessing contraception. We seek to identify the contraception access, experiences, beliefs, attitudes, knowledge, and needs of youth in Canada, from the perspectives of youth and youth service providers.
Methods and analysis:
This prospective, mixed-methods, integrated knowledge mobilisation study, the Ask Us project, will involve a national sample of youth, healthcare and social service providers, and policy makers recruited via a novel relational mapping and outreach approach led by youth. Phase I will centre the voices of youth and their service providers through in-depth one-on-one interviews. We will explore the factors influencing youth access to contraception, theoretically guided by Levesque's Access to Care framework. Phase II will focus on the cocreation and evaluation of knowledge translation products (youth stories) with youth, service providers, and policy makers.
Ethics and dissemination:
Ethical approval was received from the University of British Columbia's Research Ethics Board (H21-01091). Full open-access publication of the work will be sought in an international peer-reviewed journal. Findings will be disseminated to youth and service providers through social media, newsletters, and communities of practice, and to policy makers through invited evidence briefs and face-to-face presentations.
Zusammenfassung: Die zunehmende Nutzung des Web 2.0 in verschiedenen Phasen des Forschungsprozesses führt dazu, dass qualitativ Forschende und Beforschte, teils unreflektiert, online Datenspuren ihrer Interaktionen erzeugen. Bisher wurde nur vereinzelt thematisiert, was das für veränderte Anonymitätsverhältnisse bedeutet. Mit unserem Artikel wollen wir zu der Debatte um Forschungsethik, Datenschutz und-management beitragen. Anhand eines fiktiven Fallbeispiels identifizieren wir drei Typen von Interaktionsspuren im digitalen Raum: Rekrutierungsspuren, Öffentlichkeitsarbeitsspuren und Teilnahmespuren. Diese Spuren können zur Deanonymisierung der Teilnehmenden entgegen deren Willen führen. Basierend auf einem systematischen Literaturreview zu Anonymität und Nutzung des Web 2.0 in der qualitativen Forschung schlagen wir forschungspraktische Umgangsweisen mit den identifizierten Interaktionsspuren im digitalen Raum vor und fassen diese in einer Checkliste zur Reflexion und Dokumentation eigener Tätigkeiten in den sozialen Medien zusammen. Wir wollen qualitativ Forschende für oft beiläufig online produzierte Daten sensibilisieren und zum Austausch über die vielfältigen Entscheidungen, die Forschende und Beforschte bei der Kommunikation und Selbstdarstellung im Web 2.0 treffen, anregen. Inhaltsverzeichnis
Purpose
The use of online focus groups to explore children and young people's (CYP) perspectives of inequalities in health and associated “sensitive” topics raises important ethical and methodological issues to consider. The purpose of the paper is to discuss lessons learnt from navigating the authors' way through some of the key challenges the authors encountered when researching inequalities in health with CYP through online focus groups.
Design/methodology/approach
In the paper, the authors draw on reflections and notes from the fieldwork design, public involvement and engagement (PIE) activities and data collection for their research project.
Findings
Collecting data online influenced the authors' ability to develop rapport and relationships with CYP and to provide effective support when discussing sensitive topics. The authors note that building activities to develop rapport with participants during recruitment and data collection and establishing clear support and safeguarding protocols helped navigate challenges of online approaches around effective and supportive participant engagement.
Originality/value
The paper highlights that despite ethical and methodological challenges of conducting online focus groups with CYP on potentially sensitive topics, the adoption of practical steps and strategies before, during and following data collection can facilitate the safe participation of CYP and generate useful and valid data in meaningful and appropriate ways.
This chapter is designed to explore how researchers, when conducting sensitive inquiries, could face many risks within an institution of higher education, a research think tank, or another agency. Researchers need to take on more of a leadership role when conducting studies that might be too risky for others, while other complacent researchers explore repetitive and irrelevant issues. In the case of status quo researchers, they remain within a safe course of action and never address some of the most important, yet sensitive, issues, which are problems facing organisations, communities, and even possible medical breakthroughs. If researchers combine leadership strategies with research to take risks, they will advance their competitive edge in grants, and uncover solutions to problems facing our societies, politics and world events.
Purpose
This paper describes distinctive ethical challenges encountered in qualitative research with migrant children. It brings attention to how the exploratory nature of qualitative research, intersected with the multifaced realities of migrant children, shapes stances towards these ethical challenges.
Design/methodology/approach
The paper is developed through conceptual and reflective contributions. It narrates distinctiveness within ethical challenges via the literature. It then illustrates these, through the author's experiences of negotiating such tensions on a project with a category of migrant children, namely, separated children.
Findings
Ethical choices are made throughout the research processes. These choices need to be matched to distinctive childhood and migration intersections, and methodological frameworks must reflect these, including when applied to standardised ethical guidelines. Transparency, reflexivity and positionality influence these choices, and researchers have enhanced responsibility to minimise harm in how they research migrant children.
Research limitations/implications
Findings relate to work in development, where sensitivities regarding research conduct are still present. The scope is therefore on particular challenges of dealing with ethical codes and practices. The intention of the author is for this to be a reflective discussion producing paper, but not a practice guide.
Originality/value
Its value is centred on taking generalised ethical challenges in qualitative work with children and systematically contextualising these regarding factors specific to migrant children, arguing that the way which migrant children are represented is in itself a key ethical challenge. It further contributes to the body of knowledge by describing procedures of a qualitative study which address some of this distinctiveness.
Purpose
As an Interpretative Phenomenological Analysis (IPA), the purpose of this paper is to provide an in-depth understanding of adolescent experiences of maternal cancer to identify the individual and contextual factors that shape adolescent experiences and evaluates the potential applicability of the Family Ecology Model to the illness context.
Design/methodology/approach
This analysis is focussed on three female adolescents who completed semi-structured interviews, which were subjected to IPA. Maternal illness is a challenge for adolescents, which can be improved or undermined by their contexts. The analysis yielded three sub-themes: family structure, social supports, experiencing maternal cancer at a time of transition and the lasting impact of cancer.
Findings
This study found that adolescent experiences of maternal cancer depend on their contexts from an ecological perspective the type and quality of adolescent interactions determine coping and adjustment. Maternal cancer can be difficult as adolescents are already facing specific developmental challenges. Future research can benefit from adopting an ecological perspective to further understand adolescent experiences to support adolescent that may be more vulnerable and benefit from additional supports. This is not a generalisable piece of research but it provides a very deep and detailed understanding of the impact of maternal cancer on adolescents’ developmental course and determines how the complexity of their contexts can serve as a risk or a protective factor at this challenging time.
Originality/value
This paper contributes to the body of research by providing a comprehensive understanding of adolescents facing maternal cancer. The Ecological Model supports the findings of this research and proves to be a good model to understand the complex interplay between adolescents and their environments when facing a difficult challenge like maternal cancer is.
This study compared three methods of collecting survey data about sexual behaviors and other sensitive topics: computer-assisted
personal interviewing (CAPI), computer-assisted self-administered interviewing (CASI), and audio computer-assisted self-administered
interviewing (ACASI). Interviews were conducted with an area probability sample of more than 300 adults in Cook County, Illinois.
The experiment also compared open and closed questions about the number of sex partners and varied the context in which the
sex partner items were embedded. The three mode groups did not differ in response rates, but the mode of data collection did
affect the level of reporting of sensitive behaviors: both forms of self-administration tended to reduce the disparity between
men and women in the number of sex partners reported. Self-admimstration, especially via ACASI, also increased the proportion
of respondents admitting that they had used illicit drugs. In addition, when the closed answer options emphasized the low
end of the distribution, fewer sex partners were reported than when the options emphasized the high end of the distribution;
responses to the open-ended versions of the sex partner items generally fell between responses to the two closed versions.
This article provides a candid account of the challenges two researchers faced while collecting qualitative in-depth interview data on two different studies of emotionally sensitive topics. These studies involved asking participants to describe their feelings about a difficult experience - the loss of a loved one to murder and the termination of a pregnancy. We build on the literature on feminist methodology by offering a backstage look at qualitative research on an emotional topic and with an emotionally vulnerable population. Using illustrations from our respective studies, we share some of the insights we gained on recruitment problems, interview question development and participant compensation (e.g., financial, interpersonal and follow-up contacts). We also discuss the need for monitoring and attending to the participants' emotions as well as our own throughout the data collection process.
As health researchers we need to investigate a wide range of topics to enhance our understanding of the many issues that affect health and well-being in today's society. Much of the health research undertaken today involves face-to-face encounters with participants using qualitative methodologies. There is a growing recognition that undertaking qualitative research can pose many difficulties for researchers. However, very little research has focused directly on the experiences of researchers while undertaking qualitative research and the issues that their involvement in the research raises for them.
To explore these issues, one-to-one interviews were conducted with 30 qualitative health researchers. A grounded theory analysis revealed that researchers can face a number of challenges while undertaking qualitative research. These include issues relating to rapport development, use of researcher self-disclosure, listening to untold stories, feelings of guilt and vulnerability, leaving the research relationship and researcher exhaustion. These results are discussed and recommendations for researchers involved in qualitative research are made.
There is a growing awareness that undertaking qualitative research is an embodied experience and that researchers may be emotionally affected by the work that they do. Despite the interest in the emotional nature of qualitative research, there is very little empirical evidence about the researchers' experiences of undertaking qualitative research. A grounded theory analysis of one-on-one interviews with thirty public health researchers working on a qualitative project provided both theoretical and empirical evidence that qualitative researchers undertake emotion work throughout their research projects. The findings provide examples of researchers doing emotion work in their research projects; highlight some of the consequences of emotion work and offer some suggestions for researcher self-care.
The purposes of this article are to position mixed methods research (mixed research is a synonym) as the natural complement to traditional qualitative and quantitative research, to present pragmatism as offering an attractive philosophical partner for mixed methods research, and to provide a framework for designing and conducting mixed methods research. In doing this, we briefly review the paradigm “wars” and incompatibility thesis, we show some commonalities between quantitative and qualitative research, we explain the tenets of pragmatism, we explain the fundamental principle of mixed research and how to apply it, we provide specific sets of designs for the two major types of mixed methods research (mixed-model designs and mixed-method designs), and, finally, we explain mixed methods research as following (recursively) an eight-step process. A key feature of mixed methods research is its methodological pluralism or eclecticism, which frequently results in superior research (compared to monomethod research). Mixed methods research will be successful as more investigators study and help advance its concepts and as they regularly practice it.
This paper explores the challenges of interviewing people about sensitive topics. It uses existing literature and the first author's experience of interviewing women traumatised by having an emergency hysterectomy following a severe postpartum haemorrhage. It also highlights the strategies that can assist interviews.
Interviewing participants about sensitive topics requires skill and special techniques. Certain research topics have the potential to cause participants and researchers distress and discomfort. Identifying ways to prevent vicarious traumatisation and researcher burnout is imperative to the integrity of the research.
Twenty one Australian women took part in in-depth, tape-recorded, face-to-face, email, internet and telephone interviews.
This is a methodology paper on the first author's experience of interviewing women on potentially sensitive topics.
Some participants may find telling their stories to be cathartic, providing them with a sense of relief. Implementing techniques that may be helpful in initiating the interview process can be challenging.
While many studies ask participants to disclose sensitive information or to participate in emotionally arousing tasks, little is known about participants' subjective experiences of discomfort and benefit. Ethics review committees, therefore, have little information about participant experiences to guide their informed decision-making. We asked undergraduate females about their experiences in a study that included an experimental session, interviews, and self-report measures on sensitive topics. We examined results overall, and compared the responses of individuals with and without childhood abuse experiences. Participants who had experienced child abuse were more likely to report distress due to remembering the past, but also more likely to report that participation was helpful. Implications for future research, and recommendations for review boards, are discussed.
Stories convey values and emotions, and can reveal the differences and similarities between people's experiences. Elucidating personal stories involves sharing which can help form bonds and supportive networks. With reflection, these can help to develop resilience. While the literature recognises the potential cathartic and therapeutic benefits associated with storytelling in research, links between the development of personal resilience and storytelling for research purposes have not been drawn. This paper argues that storytelling aids the development of personal resilience and provides opportunities to celebrate the hardiness of research participants who contribute to knowledge by recounting their stories of difficulty and adversity.
There are many phenomena that within specific cultural and social context are "sensitive". They may be defined as "sensitive" if they are private, stressful or sacred, and discussion tends to generate an emotional response, for example death and sex. Phenomena that deal with potential fear of stigmatisation, such as the study of sub-cultures, and studies that may reveal information of a politically sensitive nature may also be considered "sensitive". In response to the "sensitive" nature of such phenomena Ethics Committees act as gatekeepers during the research process to protect individuals and/or groups who form the sample from harm. Experience and a review of current literature clearly indicates that these are not the only participants affected by the research. The researchers, transcribers, supervisors and readers of publications may also be placed at risk. This risk may be physical and/or psychological. In order to protect all participants' physical and psychological safety protocols or guidelines need to be developed at the beginning of the research process to identify and minimise risk, or respond to risk as they arise during the research process.
URN: urn:nbn:de:0114-fqs0101220
Human subjects are carefully protected in the research process. However, the same consideration is not currently being given to the qualitative researcher, even those investigating topics that are likely to elicit powerful emotions. The role of researcher’s emotional responses and the self-care strategies that, in some circumstances, are appropriate for the researcher and other research support personnel have not received the attention they deserve in qualitative research literature. Based on experience in conducting research on the topic of self-directed learning and breast cancer, and on the limited literature available, the author makes the case for the use of strategies such as counseling, peer debriefing, and journal writing as means of dealing with the potential for “compassion stress” as experienced by the researcher and other research support personnel. She also suggests that the preparation of social science researchers should include information on appropriate self-care strategies.
Purpose
– The purpose of this paper is to examine the effect of topic sensitivity and the research design techniques of forced answering (FA) (i.e. cannot proceed if leave an answer blank) and response options (use of “prefer not to answer” (PNA) option) on respondent motives for participating in an internet-based survey.
Design/methodology/approach
– Data were collected in a field experiment in Hong Kong using a 2×2×2 factorial design. Variables manipulated were topic sensitivity, use of FA, and response options. The dependent variables were eight specific motives which were obtained from responses to the survey participation inventory (SPI).
Findings
– Topic sensitivity has a significant influence on seven of the eight motives. The use of FA does not appear to affect motives. In contrast, the use of the response option “PNA” has a significant effect on all motives except “obligation”. The SPI appears to be a viable measure to the use with Hong Kong online panellists, and perhaps with other Asian and non-Western cultures/countries as well.
Research limitations/implications
– The present study tested only two specific topics, each with a specific level of sensitivity. Further research should apply the SPI to topics of varying levels of sensitivity. The present study used a sample of panel members. Future research could examine motivation for survey participation for use with off-line samples.
Practical implications
– There are differences in motivation for survey participation among panellists. The authors relate panellists' motivation to topic sensitivity and confirm that panellists who answered questions about a sensitive topic were less motivated to participate in every motivational aspect, except for incentives. The authors find that the survey design feature of FA is largely unrelated to panellists' motivation.
Originality/value
– This is one of the few studies that show the impact of topic sensitivity, FA, and response options on motives for responding. It is the first use of the SPI in a non-Western culture/nation.
Aim:
To explore the methodological and ethical issues of conducting qualitative telephone interviews about personal or professional trauma with critical care nurses.
Background:
The most common method for conducting interviews is face-to-face. However, there is evidence to support telephone interviewing on a variety of sensitive topics including post-traumatic stress disorder (PTSD). Qualitative telephone interviews can limit emotional distress because of the comfort experienced through virtual communication. Critical care nurses are at increased risk of developing PTSD due to the cumulative exposure to work-related stress in the intensive care unit. We explored the methodological and ethical issues of conducting qualitative telephone interviews, drawing on our experiences communicating with a group of critical care nurses.
Data sources:
Qualitative research interviews with 27 critical care nurses. Fourteen of the nurses met the diagnostic criteria for PTSD; 13 did not and had scores consistent with high levels of resilience.
Review methods:
This is a methodology paper on the authors' experiences of interviewing critical care nurses on sensitive topics via the telephone.
Discussion:
The authors found that establishing rapport and connections with the participants and the therapeutic use of non-verbal communication were essential, and fostered trust and compassion. The ethical issues of this mode of communication include protecting the privacy and confidentiality associated with the disclosure of sensitive information, and minimising the risk of psychological harm to the researcher and participants.
Conclusion:
Qualitative telephone interviews are a valuable method of collecting information on sensitive topics.
Implications for research/practice:
This paper explores a method of interviewing in the workplace. It will help inform interventions to promote healthy adaptation following trauma exposure in the intensive care unit.
Survey questions asking about taboo topics such as sexual activities, illegal behaviour such as social fraud, or unsocial attitudes such as racism, often generate inaccurate survey estimates which are distorted by social desirability bias. Due to self-presentation concerns, survey respondents underreport socially undesirable activities and overreport socially desirable ones. This article reviews theoretical explanations of socially motivated misreporting in sensitive surveys and provides an overview of the empirical evidence on the effectiveness of specific survey methods designed to encourage the respondents to answer more honestly. Besides psychological aspects, like a stable need for social approval and the preference for not getting involved into embarrassing social interactions, aspects of the survey design, the interviewer’s characteristics and the survey situation determine the occurrence and the degree of social desirability bias. The review shows that survey designers could generate more valid data by selecting appropriate data collection strategies that reduce respondents’ discomfort when answering to a sensitive question.
Sociology is a discipline in which the idea of a multi-method research design has held credence for many years, far before the term mixed methods research was coined. This article charts the implementation and framing of this approach over time to better understand the place and state of mixed methods research in the discipline today. Several recent applications of mixed method research by sociologists are highlighted to demonstrate the range of projects being conducted. There are challenges to further development of mixed methods inquiry within Sociology; however, the current epistemological base of the approach—pragmatism—promotes the merits of a variety of theoretical and methodological approaches and the discipline is better for it.
Conducting qualitative research on topics that are emotionally laden can have a powerful impact on the researcher. Recent literature addresses the essential nature of the emotional connection that must be part of the qualitative research process. However, for the most part, it neglects the issue of self-care strategies for the researcher that are appropriate under these circumstances. Based on the author’s experience in researching the self-directed learning of breast cancer patients and on the limited literature that is available, this article addresses these important topics and calls for increased awareness of these issues and their significance in the preparation of novice researchers.
To describe the challenges encountered in the recruitment and retention of a sample of older adolescent and young adult female survivors of childhood cancer for a longitudinal study testing a targeted psychosocial intervention aimed at enhancing hope.
Published literature on constructing longitudinal intervention studies and strategies in the recruitment and retention of childhood cancer survivors in research was used to develop the protocol of this study.
Using empirical literature to construct the study's design resulted in achieving certain goals for the design, but not in the recruitment and retention of study participants. Using online technology to deliver the intervention and collect data was efficient and effective. Traditional approaches to recruitment and retention of those survivors, however, were not effective. Use of more novel approaches to enroll study participants demonstrated only modest success.
Additional research is needed on strategies to successfully recruit and retain older adolescents and young adult female survivors of childhood cancer in longitudinal intervention studies.
The improvement in the psychological well-being of female survivors of childhood cancer remains an important outcome in ongoing care. The need to continue to identify creative and effective ways to recruit and retain those survivors is warranted.
This note examines some research issues raised by studies of sensitive topics and the disclosure of highly personal and confidential information. The first part focuses on the research method of in-depth interviewing and covers some theoretical and methodological problems associated with the method, together with a discussion of some strategies adopted by researchers and respondents in the interview setting. The second part discusses some of the hazards of this type of research and argues for the need to protect respondents and researchers alike. These issues are discussed with reference to the author's own fieldwork experiences of three research projects.
As organizations such as the US Navy move toward web-based survey administration, it is important to determine whether responses to sensitive questions are equivalent regardless of the administration method. It is possible that having to enter a military website and provide a username to access the survey might increase anonymity and confidentiality concerns, thereby increasing the likelihood of response distortion. Although previous research has shown that self-administered questionnaires (both paper- and computer-based) generally result in equivalent responses, to date little research has investigated the effects of asking sensitive information in a web-based survey format. In order to test for potential response bias, a survey was created containing questions about family planning attitudes and birth control usage, impression management and self-deception scales, and privacy and confidentiality concerns. Paper surveys were sent to about 3300 randomly selected enlisted Navy personnel while another 3300 received an invitational letter to a survey website. In general, the results show few differences between web-based and paper-based survey responses, demonstrating that sensitive data can be collected via web-based surveys without significantly influencing the honesty of survey responses. In addition, the perceived levels of privacy and confidentiality did not result in a significant difference between the responses provided.
The term 'sensitive research' has become recognised in health and social care research literature generally. It has been used to describe a wide range of topics, undertaken across a variety of disciplines and settings, using a range of methods. Drawing on evidence from other disciplines, this article examines the particular issues and effects that arise for nurses in carrying out sensitive research as the field continues to evolve.
Use of the Internet, and the opportunity to utilise computer-mediated communication (CMC) provides new alternatives for nurse researchers to collect data. The use of CMC for research purposes is advantageous for both researchers and participants. Through this mode of communication, recruitment of participants can be enhanced through reaching individuals who are geographically distant, and nurses have the opportunity to provide participants with true anonymity, which may be beneficial when exploring sensitive issues. This paper explores the existing literature and draws on healthcare studies that have used CMC as a data collection tool.
This report discusses adolescent research recruitment strategies in general and specifically, those developed by a research team for a rural school setting. Recruitment of adolescent subjects involves the consideration of several complex issues. These issues include adolescent development, ethical and legal guidelines, and access to school settings. Specific strategies are discussed regarding access and culture of the rural setting, collaboration, and recruitment procedures in relation to their use to recruit adolescent subjects from rural schools.
Researchers are generally familiar with the need to adapt their research methods in order to minimise the impact of sensitivity. However, are different considerations required for studies of ethnicity or with ethnic minority respondents? This paper provides insight into strategies used by the authors to tackle sensitivity in qualitative and quantitative research studies of sexual health and ethnicity. Drawing on examples from these studies, the paper demonstrates the relevance of Lee's model of sensitivity, and examines ways in which ethnicity may add further dimensions to our ability to understand, identify and limit sensitivity in the research process. The paper identifies techniques available to researchers for handling sensitivity in general, as well as those that may be useful for researching sensitive topics among ethnic minority populations. The paper concludes that, given the transitional and contextual nature of ethnicity and sensitivity, formulaic approaches for tackling the latter are inappropriate. Instead, strategies are best developed in collaboration with the study communities.
This study replicates and extends the research of Rosenbaum, Rabenhorst, Reddy, Fleming, and Howells, which also appears in this special issue. Responses from 398 randomly assigned participants regarding differentially sensitive topics were collected via four methods of data collection:
written questionnaires, face-to-face interviews, telephone interviews, and an automated telephonic data collection system (ATDC). Several significant differences in data collection methodology and topic area were found, including greater disclosure of sensitive information via the ATDC system
than via face-to-face and paper-and-pencil conditions. Participants who were assigned to the ATDC condition felt significantly more comfortable answering questions compared to those in the face-to-face interview condition. Participants in the telephone interview condition reported answering
significantly more carefully than participants answering via written questionnaire. Taken together, the results of this study and the previous one it replicates suggest that the ATDC produces disclosure rates that are at least equivalent to, if not greater than, those generated using traditional
methods for collecting sensitive data.
Insufficient attention has been paid to whether disclosure rates of sensitive or stigmatizing information vary as a function of method of inquiry. Methods vary both in terms of the anonymity afforded the participant and the opportunity to make a connection with the researcher, both of which might affect participants' willingness to disclose such information. In this investigation, 215 undergraduate students were randomly assigned to complete identical questionnaires using one of the three most common methods of data collection (in-person interview, telephone interview, and paper-and-pencil questionnaire) or an automated telephonic data collection (ATDC) system. Questions on six topic areas of increasing social sensitivity (study habits, substance use, physical and sexual aggression, victimization and perpetration) were included. The results indicated that there were no differences in disclosure rates due to methods and no method by topic interaction, but the two telephonic methods both produced significantly higher participation rates than the two other methods. The results suggest that, at least for a college student sample, an automated telephonic system produces data comparable to that of more traditional methods, while offering greater convenience, economy, and participation.
Understanding adolescent adjustment to maternal cancer: a study of personal experiences and psychological factors that promote adjustment”, unpublished doctoral dissertation
- Author
Author (2016), "Understanding adolescent adjustment to maternal cancer: a study of personal
experiences and psychological factors that promote adjustment", unpublished doctoral
dissertation, Degree of PhD to the National University of Ireland, Galway.
Corresponding author Leonor Rodriguez can be contacted at: leonor.rodriguez@nuigalway.ie For instructions on how to order reprints of this article
- L Wettergren
- L Eriksson
- J Nilsson
- A Jervaeus
- C Lampic
Wettergren, L., Eriksson, L., Nilsson, J., Jervaeus, A. and Lampic, C. (2016), "Online focus group
discussion is a valid and feasible mode when investigating sensitive topics among young
persons with a cancer experience", JMIR Research Protocols, Vol. 5 No. 2, pp. 1-6.
Corresponding author
Leonor Rodriguez can be contacted at: leonor.rodriguez@nuigalway.ie
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Adolescent adjustment to maternal cancer: an interpretative phenomenological analysis (IPA)
- Leonor Rodriguezleonor
- Groarkeann Rodriguez
- Ann Marie Marie
- Groarke
- Pat Dolanpat
- Dolan
- Padraig Macneelapadraig
- Macneela
RodriguezLeonor, Leonor Rodriguez, GroarkeAnn Marie, Ann Marie Groarke, DolanPat, Pat
Dolan, MacNeelaPadraig, Padraig MacNeela. Adolescent adjustment to maternal cancer: an
interpretative phenomenological analysis (IPA). Qualitative Research Journal, ahead of print.
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