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Background Ethical research should protect the rights and welfare of those who volunteer to participate; Mechanisms should be put in place to safeguard and prevent possible violation of participants’ ethical- and human rights; Qualitative research concerning non- offending partners of female rape victims often involves multifaceted potential ethical, legal and practical challenges such as recruitment and retention issues, confidentiality aspects, and the protection of vulnerable participants; These challenges can be managed through the use of Pilot Studies before commencing with the Main Study (Duma, Khanyil, & Daniels, 2009) ; The need to conduct a Pilot Study prior to the Main Study became apparent during the proposal development stage; From the outset it was clear that an examination of the lived experience of intimate partners of female rape victims in Cape Town, South Africa, over time, would entail a longitudinal qualitative study of at least six months, post-rape. Objectives To assess the proposed methods for locating and accessing intimate partners of female rape victims within the first two weeks after the rape, for participation in the six-month longitudinal study; To assess the proposed recruitment and data collection methods to see whether they were suitable for the Main Study; To determine whether it was practically feasible to conduct the Main Study, given the constraints of limited financial and human resources. Please note: The methods and processes utilized during the Pilot Study are discussed according to the three objectives of the Pilot Study. 1. First Objective: Methods Used The clinical managers of the recruitment site were informed by letter of the purpose and significance of the Study and that the necessary ethical clearance had been obtained by the University of Cape Town (UCT) Human Research Ethics Committee (HREC); After obtaining consent, a meeting was held with the medical and nursing staff to brief them on the purpose of the study, the recruitment procedure, the inclusion criteria for selecting participants, required physical space, projected duration of the study, and the role of the researcher in the Study; The gatekeepers (Medical and Nursing personnel) identified female rape victims who were in an intimate relationship with a partner of any gender; this identification was done either directly after the rape, or at their 72-hour follow- up visit; They introduced the rape victim to the nature of the Study; If interested, the rape victim met the investigator in a private room where she explained the purpose of the Study verbally and also by means of an information document; Afterwards, the rape victim could choose to discuss the Study with her intimate partner at home. Difficulties Experienced The nurses reported they were either too busy, or too short-staffed, or had forgotten about the Study; On other occasions, they contacted the researcher after the rape victim had left the facility; therefore, not all the rape victims with intimate partners seen at the clinic were informed of the Study; This significantly reduced the number of potential participants for recruitment. Strategies Implemented to Overcome These Difficulties The researcher had more regular meetings with Rape Crisis Centre’s staff to educate them about the significance of the Study and to place a poster on their notice board as an aide memoire; The recruitment team at the Rape Crisis Centre and researcher met more regularly to discuss the ethical and practical difficulties experienced during the Pilot phase. 2. Second Objective: Assessing the Proposed Recruitment and Data Collection Methods The partner, if interested, had to contact the researcher by phone within fourteen days of learning of the Study; Purposeful sampling was used to select participants who met the inclusion criteria; the process followed during the Pilot phase was to be similar to the one planned for the Main Study; The partner had to be willing to participate in four interviews over a period of six months. Difficulties Experienced During Recruitment Many rape victims were not in intimate relationships; Although the inclusion criteria for the Study provided for a representative sample of gender and race, only black and mixed race men contacted the researcher during the Pilot phase; No women from the White or Asian group, who were in a relationship during the recruitment period, attended the Centre during this time; Potential recruits did not want to partici- pate in interviews at their workplaces or homes; Potential recruits could not attend interviews after-hours or over weekends; Potential recruits did not have the confidence to ask their employers for time off to attend the interviews; Despite being interested, clashes with employment schedules undoubtedly contributed to slow recruitment and to the attrition of recruits; Numerous “please call me” text messages were received from mobile telephones; Some potential recruits said that they had trouble opening up to a woman and a stranger; Several potential recruits were not English- speaking, and expressed disappointment that an interpreter would not be present - the language barrier was clearly problematic. Initial Meeting Intimate partners who contacted the researcher were invited to meet her individually; At that meeting, the potential participant was given an explanation of the Study’s aims, the researcher’s role and her responsibilities w.r.t. anonymity, confidentiality, privacy, the informed consent process, and how information gained would be handled in the research process; Permission was sought to use a digital audio recorder, and the potential recruit was reminded of the right not to answer questions with which he or she felt uncomfortable, as well as the right to Managing Ethical Problems in Qualitative Research Involving Vulnerable Populations, Using a Pilot Study withdraw from the Study without giving a reason. Data Collection The methodology was adjusted (with UCT permission) to incorporate an interpreter; Two male participants recruited to the Pilot Study indicated that they preferred not to be interviewed near their homes for reasons of safety: their partners had been raped in the same area; Both agreed to be interviewed at the researcher’s place of work because this was the most convenient location; They were issued appointment cards so that the security personnel would allow them access to the building; Interviews occurred within the first two weeks after the rape, and then after a month, three months and finally six months after the rape; At the initial interview, a demographic questionnaire was completed, followed by the semi-structured interview schedule; The conversation with each participant was started in the same manner: “Your partner was raped on [date]. Please tell me how you felt when you first heard about this” . A preliminary data analysis, using qualitative data analysis methods, was done immediately after the data collection; That both participants provided rich data and were satisfied with the research methodology, contributed to the decision to commence with the Main Study. Difficulties Experienced During Data Collection Unavailability of the interpreter and the language problem resulted in many lost opportunities and delayed recruitment; Maintaining contact with potential recruits, and with known participants, to remind them of appointments, was problematic. Their mobile phones were frequently lost, stolen, or out of air time; Both of the Pilot Study participants reported that their partners wanted to know what they had said to the researcher, which led to arguments and additional stress in already-strained relationships. Strategies Implemented to Overcome These Difficulties With UCT permission, a second interpreter was appointed; Some of the questions in the semi- structured interview tool were rephrased; As many contact numbers of friends or family as possible were obtained, subject to the proviso that the participant briefed each person that the researcher may phone them; Responded immediately to any “please call me” mobile phone text message requests, to prevent loss of interest; Requested participants to inform the researcher of any change in contact details, and checking on existing phone numbers; This was repeated after each follow-up interview, to update their personal files; Mobile phone text messages were sent to participants to remind them of the date of their next interviews; After each interview the participants received a business card with the researcher’s contact details and the date of their next interview; The Pilot phase was valuable in making informed changes and adjustments to the semi-structured interview before moving on to the Main Study’s data collection phase. Lessons Learned Despite two interpreters and implement- ing the above strategies, the attrition rate was still problematic. 3. Third Objective: Assessing the Feasibility of the Study To meet this objective, the following methods were used: In terms of the human resources, the researcher was initially the sole research instrument in the early stage of the Pilot Study, although at a later stage two interpreters were appointed for the remainder of the Pilot Study and the whole of the Main Study; Participants were compensated ($7 US) for their time and traveling cost (they preferred not to be interviewed near/in their natural environment); Because the interviews lasted between one and two hours, refreshments for both the participant and the interpreter were provided. Lessons Learned Most potential recruits left text messages and did not phone the researcher directly, resulting in high telephone bills for the researcher; Several potential recruits indicated that the reimbursement of $7 US per interview, offered by the researcher, was too little; The two Pilot Study participants, however, said money was not the reason for their participation and were satisfied with their payments; Overcoming the costs of reimbursements, appointment of interpreters, refreshments, and additional telephone costs for the Main Study, required budgetary adjustments. Summary and Conclusion All three objectives supplied valuable information to identify and manage ethical and practical issues which could have arisen during the recruitment and collection of data of the Main Study; It allowed for methodological adjustments prior to the Main Study and confirmed the feasibility of the overall research design; This Pilot Study helped to safeguard the participants’ safety and it increased the credibility and likely success of the Main Study; A Pilot, pre-testing phase is therefore seen as an essential component of a qualitative study involving a vulnerable population. References Please refer to hand-outs provided. Acknowledgements 19th Qualitative Health Research (QHR) Conference Organisers; African Population and Health Research Centre (APHRC) in partnership with the International Development Research Centre (IDRC); Cape Peninsula University of Technology, Cape Town, Republic of South-Africa; Department of Health, Western Cape Province, Republic of South Africa; Margaret McNamara Research Foundation; Supervisors from the University of Cape Town, Republic of South Africa. Dr Evalina van Wijk Western Cape College of Nursing Cape Town, Western Cape Republic of South Africa Prof Tracie Harrison School of Nursing University of Texas at Austin, Texas United States of America 19th Qualitative Health Research Conference at Halifax, Canada 27 - 29 October 2013
Transcript
Page 1: Presentarion1b

Background• Ethical research should protect the rights

and welfare of those who volunteer to participate;

• Mechanisms should be put in place to safeguard and prevent possible violation of participants’ ethical- and human rights;

• Qualitative research concerning non-offending partners of female rape victims often involves multifaceted potential ethical, legal and practical challenges such as recruitment and retention issues, confidentiality aspects, and the protection of vulnerable participants;

• These challenges can be managed through the use of Pilot Studies before commencing with the Main Study(Duma, Khanyil, & Daniels, 2009);

• The need to conduct a Pilot Study prior to the Main Study became apparent during the proposal development stage;

• From the outset it was clear that an examination of the lived experience of intimate partners of female rape victims in Cape Town, South Africa, over time, would entail a longitudinal qualitative study of at least six months, post-rape.

Objectives• To assess the proposed methods for

locating and accessing intimate partners of female rape victims within the first two weeks after the rape, for participation in the six-month longitudinal study;

• To assess the proposed recruitment and data collection methods to see whether they were suitable for the Main Study;

• To determine whether it was practically feasible to conduct the Main Study, given the constraints of limited financial and human resources.

Please note:The methods and processes utilized during the Pilot Study are discussed according to the three objectives of the Pilot Study.

1. First Objective: Methods Used• The clinical managers of the recruitment

site were informed by letter of the purpose and significance of the Study and that the necessary ethical clearance had been obtained by the University of Cape Town (UCT) Human Research Ethics Committee (HREC);

• After obtaining consent, a meeting was held with the medical and nursing staff to brief them on the purpose of the study, the recruitment procedure, the inclusion criteria for selecting participants, required physical space, projected duration of the study, and the role of the researcher in the Study;

• The gatekeepers (Medical and Nursing personnel) identified female rape victims who were in an intimate relationship with a partner of any gender; this identification was done either directly after the rape, or at their 72-hour follow-up visit;

• They introduced the rape victim to the nature of the Study;

• If interested, the rape victim met the investigator in a private room where she explained the purpose of the Study verbally and also by means of an information document;

• Afterwards, the rape victim could choose to discuss the Study with her intimate partner at home.

Difficulties Experienced• The nurses reported they were either too

busy, or too short-staffed, or had forgotten about the Study;

• On other occasions, they contacted the researcher after the rape victim had left the facility; therefore, not all the rape

victims with intimate partners seen at the clinic were informed of the Study;

• This significantly reduced the number of potential participants for recruitment.

Strategies Implementedto Overcome These Difficulties• The researcher had more regular

meetings with Rape Crisis Centre’s staff to educate them about the significance of the Study and to place a poster on their notice board as an aide memoire;

• The recruitment team at the Rape Crisis Centre and researcher met more regularly to discuss the ethical and practical difficulties experienced during the Pilot phase.

2. Second Objective: Assessing the Proposed Recruitment and Data Collection Methods

• The partner, if interested, had to contact the researcher by phone within fourteen days of learning of the Study;

• Purposeful sampling was used to select participants who met the inclusion criteria; the process followed during the Pilot phase was to be similar to the one planned for the Main Study;

• The partner had to be willing to participate in four interviews over a period of six months.

Difficulties Experienced DuringRecruitment • Many rape victims were not in intimate

relationships;

• Although the inclusion criteria for the Study provided for a representative sample of gender and race, only black and mixed race men contacted the researcher during the Pilot phase;

• No women from the White or Asian group, who were in a relationship during the recruitment period, attended the Centre during this time;

• Potential recruits did not want to partici- pate in interviews at their workplaces or homes;

• Potential recruits could not attend interviews after-hours or over weekends;

• Potential recruits did not have the confidence to ask their employers for time off to attend the interviews;

• Despite being interested, clashes with employment schedules undoubtedly contributed to slow recruitment and to the attrition of recruits;

• Numerous “please call me” text messages were received from mobile telephones;

• Some potential recruits said that they had trouble opening up to a woman and a stranger;

• Several potential recruits were not English-speaking, and expressed disappointment that an interpreter would not be present - the language barrier was clearly problematic.

Initial Meeting• Intimate partners who contacted the

researcher were invited to meet her individually;

• At that meeting, the potential participant was given an explanation of the Study’s aims, the researcher’s role and her responsibilities w.r.t. anonymity, confidentiality, privacy, the informed consent process, and how information gained would be handled in the research process;

• Permission was sought to use a digital audio recorder, and the potential recruit was reminded of the right not to answer questions with which he or she felt uncomfortable, as well as the right to

Managing Ethical Problems in Qualitative ResearchInvolving Vulnerable Populations, Using a Pilot Study

withdraw from the Study without giving a reason.

Data Collection• The methodology was adjusted (with UCT

permission) to incorporate an interpreter;

• Two male participants recruited to the Pilot Study indicated that they preferred not to be interviewed near their homes for reasons of safety: their partners had been raped in the same area;

• Both agreed to be interviewed at the researcher’s place of work because this was the most convenient location;

• They were issued appointment cards so that the security personnel would allow them access to the building;

• Interviews occurred within the first two weeks after the rape, and then after a month, three months and finally six months after the rape;

• At the initial interview, a demographic questionnaire was completed, followed by the semi-structured interview schedule;

• The conversation with each participant was started in the same manner: “Your partner was raped on [date]. Please tell me how you felt when you first heard about this”.

• A preliminary data analysis, using qualitative data analysis methods, was done immediately after the data collection;

• That both participants provided rich data and were satisfied with the research methodology, contributed to the decision to commence with the Main Study.

Difficulties ExperiencedDuring Data Collection• Unavailability of the interpreter and the

language problem resulted in many lost opportunities and delayed recruitment;

• Maintaining contact with potential recruits, and with known participants, to remind them of appointments, was problematic. Their mobile phones were frequently lost, stolen, or out of air time;

• Both of the Pilot Study participants reported that their partners wanted to know what they had said to the researcher, which led to arguments and additional stress in already-strained relationships.

Strategies Implementedto Overcome These Difficulties• With UCT permission, a second interpreter

was appointed;

• Some of the questions in the semi-structured interview tool were rephrased;

• As many contact numbers of friends or family as possible were obtained, subject to the proviso that the participant briefed each person that the researcher may phone them;

• Responded immediately to any “please call me” mobile phone text message requests, to prevent loss of interest;

• Requested participants to inform the researcher of any change in contact details, and checking on existing phone numbers;

• This was repeated after each follow-up interview, to update their personal files;

• Mobile phone text messages were sent to participants to remind them of the date of their next interviews;

• After each interview the participants received a business card with the researcher’s contact details and the date of their next interview;

• The Pilot phase was valuable in making informed changes and adjustments to the semi-structured interview before moving

on to the Main Study’s data collection phase.

Lessons Learned• Despite two interpreters and implement-

ing the above strategies, the attrition rate was still problematic.

3. Third Objective: Assessing theFeasibility of the Study

To meet this objective, the following methods were used:

• In terms of the human resources, the researcher was initially the sole research instrument in the early stage of the Pilot Study, although at a later stage two interpreters were appointed for the remainder of the Pilot Study and the whole of the Main Study;

• Participants were compensated ($7 US) for their time and traveling cost (they preferred not to be interviewed near/in their natural environment);

• Because the interviews lasted between one and two hours, refreshments for both the participant and the interpreter were provided.

Lessons Learned• Most potential recruits left text messages

and did not phone the researcher directly, resulting in high telephone bills for the researcher;

• Several potential recruits indicated that the reimbursement of $7 US per interview, offered by the researcher, was too little;

• The two Pilot Study participants, however, said money was not the reason for their participation and were satisfied with their payments;

• Overcoming the costs of reimbursements, appointment of interpreters, refreshments, and additional telephone costs for the Main Study, required budgetary adjustments.

Summary and Conclusion• All three objectives supplied valuable

information to identify and manage ethical and practical issues which could have arisen during the recruitment and collection of data of the Main Study;

• It allowed for methodological adjustments prior to the Main Study and confirmed the feasibility of the overall research design;

• This Pilot Study helped to safeguard the participants’ safety and it increased the credibility and likely success of the Main Study;

• A Pilot, pre-testing phase is therefore seen as an essential component of a qualitative study involving a vulnerable population.

ReferencesPlease refer to hand-outs provided.

Acknowledgements• 19th Qualitative Health Research (QHR)

Conference Organisers;

• African Population and Health Research Centre (APHRC) in partnership with the International Development Research Centre (IDRC);

• Cape Peninsula University of Technology, Cape Town, Republic of South-Africa;

• Department of Health, Western Cape Province, Republic of South Africa;

• Margaret McNamara Research Foundation;

• Supervisors from the University of Cape Town, Republic of South Africa.

Dr Evalina van WijkWestern Cape College of Nursing

Cape Town, Western CapeRepublic of South Africa

Prof Tracie Harrison School of NursingUniversity of Texas at Austin, TexasUnited States of America

19th Qualitative Health ResearchConference at Halifax, Canada

27 - 29 October 2013