CAPITULO III FUENTES DE INFORMACIÓN
3.5 ESTRUCTURA DE LOS PROGRAMAS DE AUDITORIA OPERACIONAL-ADMINISTRATIVA
3.5.4 Caso práctico del capítulo
Measures to protect participant privacy and confidentiality are described in the data management section (Section 1.4.1.8), and include assigning all participants (mother and baby) a pseudonym to be used on all documentation in lieu of the actual names, storing contact information and linkage information between the maternal and infant participant in a password-protected,
encrypted, user-restricted computer file, and storing all other study materials, including consent forms, video recordings, and audio recordings, in a locked desk drawer (accessible only to me) within a locked room (the PhD student office area). Audio- and video- recordings will be stored for a minimum of 5 years. Additionally, non-vital identifying information will be modified or omitted from the final research report in order to protect participant anonymity.
Special considerations apply for the use of video-recording in research. This is particularly true pertaining to video-recording of breastfeeding, due to the intimacy of the act, accompanying privacy issues, and risk of exposure of the breast, which, because of sexual connotations, could be considered inappropriate by some individuals. It should be noted that the utmost prudence will be exercised in ensuring that video-recording is participant-directed.
Specifically, participants may decline this portion of the research study or request via writing withdrawal from the study and destruction of video data during the data collection period. A separate option in the written informed consent specifies whether participants will allow the videos to be stored for future research or presentations. Drawing on the suggestions of one research group experienced in video data collection and analysis (Broyles, Tate, & Happ, 2008), oral confirmation of informed consent for video-recording will be on a continuous basis (e.g., before any video session rather than just at entry into study), only positive exemplars of breastfeeding will be used in any presentations with participant consent, and care will be taken to minimize unnecessary exposure of the breast (e.g., “blurring” of areola/nipple if not critical to evaluate some aspect of breastfeeding, such as poor latch due to nipple trauma/soreness).
Additionally, I will be particularly vigilant of participant verbal and non-verbal cues indicating discomfort with the video process. For example, participants may be uneasy if certain family
members are present during the taping, so I will be flexible in arranging alternate times for this data collection to occur.
Similar privacy concerns may exist in relation to audio-recording “talk-throughs” of breastfeeding. For this reason, this method of data collection will also be optional and
participant-directed. Although the password-protected and encrypted audio files will be stored in a locked desk drawer in a locked room for a minimum of 5 years, the actual audio will not be utilized for any additional research or presentations without participant permission in the informed consent.
All videos obtained for the study will be stored only as digital files on a USB flash drive and back-up, both encrypted and password-protected. No hard copies of the videos (e.g., CD’s, VHS tapes) will be created. Any potentially identifying information on the audio files will be deleted.
If email is used in data collection, additional safeguards will be employed to protect participant confidentiality. As per the suggestions of Hamilton and Bowers (2006), this will include reminding participants to secure their e-mail account with a password and advising participants to delete their responses and empty their trash as soon as they send an entry.
Additionally, upon receipt of an electronic response, I will cut and paste the text into a word document, removing all personal identifiers and substituting in the participant’s assigned pseudonym. No participant contact information will be stored in my email address book, and all participant emails will be deleted and moved to the trash after copying to the word file.
If, during the course of the study, a participant becomes uncomfortable or exhibits emotional distress, data collection will cease and contact information for support services will be provided, if warranted. Likewise, if a participant expresses concern for the safety of herself or
others, emergency medical services will be contacted. If a potentially harmful situation for mother or baby is observed during a home or hospital visit (e.g., suspicion or witness to intimate partner violence/child abuse, unsafe home environment for a child), this will be dealt with on a case-by-case basis in consultation with dissertation chair, institution, and IRB according to state regulations. In appreciation of the potential risks inherent in home visits, I will take appropriate precautions, including carrying a mobile phone and notifying others of location and anticipated time for interviews.
Regarding possible mother distress when viewing their videotapes, a specific plan will be enacted. First, as an experienced clinician, I have skill in detecting verbal and non-verbal signs of maternal distress and anxiety, particularly in regard to breastfeeding. I will be vigilant for these signs (e.g., crying, restlessness) and will immediately cease the review should these signs of distress be evident. I will then attempt to calm the participant, validate her concerns (e.g., noting that seeing oneself on video in such a situation can be upsetting), and refer her to her obstetrical care provider or primary care physician for further assistance.