Presentation2 final

transcript

Recruitment and Retentionof Research Participants:

Experiences from a LongitudinalQualitative Study

19th Qualitative Health Research Conferenceat Halifax, Canada, 27-29 October 2013

Dr. E. van WijkWestern Cape College of Nursing, Cape Town, South Africa

Evalina.vanWijk@westerncape.gov.za

Introduction Purpose

& Research Question Research Design

Study Location/Access

Recruitment Process

Pilot Study Period

Data CollectionMethods

Outline

Pilot Study Challenges& Lessons

Main Study Period

Tracking Strategies

Difficulties – Recruitment& Data Collection

Ethics

Data Analysis/Trustworthiness

Implications &Recommendations

Introduction

• Recruitment, tracking and retention of male intimate partners of female rape victims - an under-researched area globally and esp. South Africa, where rape incidence is high

• Apparently the first qualitative study to explore phenomenon from nursing viewpoint over extended period

Definitions

• Recruitment:Getting attention of / attracting potential research participants

• Retention:Research participants remaining in study for duration,to provide valuable data and attain study objectives.

– Also referred to as “attrition”(participants leave study prematurely; “lost to follow-up”)

• Can be influenced by study itself or staff

• Participants and even Researcher can make / break retention.

Purpose & Research Question

Purpose:

•To describe processes followed to recruit, track and retain participants in this longitudinal phenomenological study

•To highlight methodological difficulties encountered

•Lessons learned from the study.

Research Question:

“What constitutes an intimate partner’s experience of living with a rape victim within the first six months post-rape?”

Research Design

• Longitudinal hermeneutic phenomenological study;Male intimate partners (MIPs) interviewed over six months

• Why six-month study period ?

• Hermeneutic focus on interpretation of language and meanings of individuals’ experiences

• Pilot Study Aim:

To determine if planned research methods (access, recruitment, interviewing) were appropriate / ethically sound

• Male intimate partners of female rape victims who received treatment at selected rape centre

• Participants sampled / recruited if:

- In intimate relationship with female rape victim beforeand immediately after rape event(as revealed by rape victim to the nursing staff)

- Older than 18 years

- Able to communicate - isiXhosa, English or Afrikaans

- Voluntarily contacted researcher within 14 days of learning of study - willingness to participate for six month period

Research Design - Population & Sampling

Study Location

• Recruitment centre for comprehensive treatment / support of rape- & sexual assault victims

• Low socioeconomic area of Cape Town

• Clinical managers informed by letter of study’s significance & purpose

• Ethical clearance obtained from UCT

After consent given:

• Meeting Rape Centre medical / nursing staffto brief them on:

– Study’s purpose– Recruitment procedure– Selection criteria - participants– Projected duration– Researcher’s role.

Access - Rape Centre

Access - to MIPs via Rape Victim

• Medical / nursing staff identified female rape victimsin intimate relationship with partner of any gender,as disclosed by victim

• Either:

directly after rape event, or

at 72-hour follow-up visit

• Staff requested to gently inform victims of nature of study

• Then asked, without coercion, if they want to meet researcher

If the response affirmative:

•Victim seen in private room, study’s purpose explained:

- verbally

- via information document

•Victim could afterwards discuss study with intimate partner, who must then voluntarily contact researcher telephonically within 14 days of learning of study, and

•Express willingness to attend four interviews over six months

Access - to MIPs via Rape Victim

After contacting researcher / expressing interest in study:

•Individual appointments set up to enroll potential participants

At this meeting, the following explained / obtained:

•Study’s aims

•Researcher’s role / responsibilities concerning ethical considerations in the process

•Specific focus:Anonymity, Confidentiality, Informed Consent

•How information gained would be processed

Recruitment Process

At this meeting the following explained / obtained:

•Permission sought - use digital audio recorder

•Participants reminded of their:

- right to not answer uncomfortable questions, and

- option to withdraw from study without giving reasons

•Voluntary informed consent

Recruitment Process

Pilot Study Period

February 2008 - July 2008

• 12 potential participants made contact at first

• 8 participants started with the interviews;

4 participants dropped out

• Due to sample attrition, sampling process extended

• 2 out of 4 remaining participants completed Pilot Study over six months

Data Collection Methods – Pilot / Main Study

• Four separate face-to-face, semi-structured interviews:

– 14 days

– A month

– Three months

– Six months after rape

• All interviews: similar structure (audio recorded, one-on-one)

• Interpreter for all three languages of Western Cape Province- halfway through Pilot Study

• Reflective journal / field notes

• Data collected evenings / weekends

Pilot Study - Challenges & Lessons

• Participants would rather attend researcher‘s office / home, or safe place far from own homes

• Appointment cards issued for building access

• Both prefer not to divulge personal contact details

• Language barrier

• Disappointment that interpreter not present

• Methodology adjusted for Main Study:

1. Interpreter included

2. Modified interview questions

August 2008 - August 2009

Of the 16 participants in Main Study:

• 7 did not attend their second and subsequent interviews

• 9 completed all four planned interviews

Main Study Period

Tracking Strategies to Retain Participants

1. Locating for follow-up interviews:

• Regular telephonic contact

• Numerous “please call me” text messages- contacted immediately

• Participants asked to:

Provide names / addresses / phone numbers of two people who know their whereabouts during study and whom researcher could contact if needed

Inform researcher of change in contact details

• Request repeated after each follow-up interview

• After each follow-up, participants asked to confirmown as well as their family / friends’ contact details to update their personal files

• Mobile phone text messages to participants:

Reminder of next interview date

• Lost participants:

Repeated attempts to re-establish contact telephonically

• Obtaining participants’ home addresses

After each interview, participant received card with:

• Researcher’s contact details

• Date of next interview

• Previously agreed-upon payment for time and travel costs

2. Using caller identity:

• A service available from mobile phone provider:

Displays name / phone number of potential recruit,(supplied by rape victim at recruitment site)on researcher’s cellphone

• Allowed speedy identification of / establish contactwith potential recruits, who could contact researcherfrom any location at any time.

3. Sensitivity to participant’s emotional life

• Due to nature of study, participants regarded ascategory of vulnerable people

• Identified stressors resolved timeously

• Referral to crisis support services / counsellor

• Regular contact maintained with participants

4. Ensuring participants’ safety

Most rapes occurred in informal, densely-populated,high-crime-rate, peri-urban shanty town settlements

• To protect participants’ anonymity / confidentiality and ensure their personal safety - interviews not conducted in / near own living space

• Family / friends used to trace them

5. Strategies to motivate participants

• Potential recruits given study information document:- Non-technical language- Translated into the three languages- Study made culturally appropriate - interpreters

• Regular follow-up calls

• Refreshments provided:- Long interviews, and - Some participants came directly from work

• Contact details updated after each follow-up interview

5. Strategies to motivate participants

• Reminders for interviews:

- one week before, and

- one day before interview

• Ask person answering the phone to identify him / herself

6. Monetary incentives

• One opinion: “Money most effective incentive”(Lyons, Carter, Carter, Rush, Stewart, & Archbold, 2004; Cooley, Sarna, Brown, Williams, Chernecky, Padilla, & Danao, 2003; DiMattio, 2001)

• Others say: “Coercion and a violation of human rights”(Rudy, Estok, Kerr, & Menzel, 1994; Moore, 1997)

• My approach:- Participants received $7 USD / interview- Some potential participants said “It’s too little”- 9 participants: “Money not reason for participation”

7. Planning for termination of researcher-participant relationship

A challenge, since a reciprocal bond of trust had developed

• Participants prepared from first interview for the termination of the research

• At each subsequent interview, reminded of number of remaining interviews

• On final visit, ample time for reflection and to thank participant for taking part

Difficulties - Recruitment & Data Collection

• Interview clashes with participants working hours

• Language differences

• Selection criteria issues

(Many of the rape victims separated from partners / not in stable, intimate relationships)

• Unavailable subscriber on mobile phone

• Numerous automatic “Please call me” mobile phonetext messages - high telephone bills

• Suspicions of partners

• Researcher – participant relationship

• Gender & cultural differences between researcher& participants

• Tracking participants longitudinally a complex task – to re-open recruitment

• High attrition rate of participants - Pilot / Main Study

• Given that participants were traumatized, several features needed attention:

– Costly - adequate funding needed

– Time constraints

Ethical Considerations

• Ethical approval obtained from UCT Faculty of Health Sciences Human Research Ethics Committee and the RCC management

• Study conducted according to Declaration of Helsinki principles (World Medical Association October 2008)

- Anonymity / Confidentiality

- Preventing harm to participants

- Autonomy / Beneficence / Justice of medical research

• Referral to counsellors if needed

• Participants interviewed at mutually agreed-upon timeat safe venue - they preferred not in natural environment.

Data Analysis

• Data transcribed / analysed within 24 hours after interview because preliminary findings informed questions for subsequent sessions

• Methods of Colaizzi (1978) and within-case and across-case approach (Ayres, Kavanaugh and Knafl, 2003)

• Interpretive theory of Paul Ricœur (1976)

• Data interpretation involved reflecting on initial reading

• With interpretive lens to ensure comprehensive understanding of findings

Trustworthiness

• Prolonged engagement

• Member checking

• Reflective journal:

Reflexivity

Disclosure of personal feelings

Background

Perceptions

Pre-conceptions

Biases

Assumptions

Role in the study

Implications

• Future qualitative researchers would do well to heedthe challenges and lessons learned from this longitudinal research study

• Failure to attend to these issues will lead to personal frustration and wasted time / money.

• Logical research design to recruit / locate / retain participants

• Proper tracking strategies to maintain participants duringdata collection

• Ongoing evaluation of tracking strategies(avoid delayed / inefficient recruitment and loss of participants)

• Continuously inform participants of research goalsand what is expected of them

• Ongoing collaboration with staff at the recruitment facility

• Respect and flexibility for participants’ time and expressions

Recommendations

• Ethical recruitment strategies & principles throughout

• Providing appropriate incentives - fair reimbursements

• Recruitment / tracking / retention = critical components when vulnerable population involved in longitudinal sexual assault research

• Ongoing attempts to improve the retention of participants

• Address safety issues

• Referral to mental health care facilities and other NGO resources, e.g. Rape Crisis Centre & Life Line.

Recommendations

Acknowledgements

• 19th Qualitative Health Research (QHR) Conference Organisers;

• African Population and Health Research Centre (APHRC)in partnership with 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;

• Prof. S. Duma & Prof. P. Myers(supervisors from UCT, Republic of South Africa).

Thank you

Presentation2 final

Health & Medicine