Study design
This study is part of a broader mixed-methods project focused on the wellbeing of adolescents with CP in rural Bangladesh. The project has previously examined adolescents’ health-related quality of life (HRQoL) and mental health. In this paper we present data from the qualitative stage of the project interested in reproductive and sexual wellbeing; we focus specifically on the experiences of young adolescent women with CP regarding menstruation and their mothers in providing menstrual support.
Participants
All young adolescent women clinically diagnosed with CP, aged 10 to ≤18 years (a normative classification of adolescence in Bangladesh) [25], were identified from the Bangladesh Cerebral Palsy Register (BCPR) and invited to take part. BCPR is the first population-based register holding data on the socio-demographic and clinical characteristics of children and adolescents with CP in a LMIC and covers a defined geographical region of the Shahjadpur sub-district of Sirajganj district in the northern part of Bangladesh. Details of BCPR are described in Khandaker et al. [20].
We also requested participation from each adolescent’s primary female caregiver classified as a mother, grandmother, aunt, sister or other female relative who provided majority of care and support. We applied principles of maximum variation sampling to our recruitment methods, to ensure representation of participants across a range of ages, motor functioning (i.e. severity), intellectual capacity and socioeconomic status.
Procedure
Participants were contacted by phone and invited to participate in a focus group. Due to high rates of illiteracy in the study area, participants were verbally provided with information about the nature of the interview and list of interview topics. To ensure understanding and voluntary informed consent, this information was provided both at the time of invitation, and again on arrival for the interview. Participants were also given a phone number for contact with a research officer that they could call to ask questions about the interview.
Prior to the interview, informed verbal and written consent was obtained for all individual participants. In cases of illiteracy, written consent was obtained by thumbprint. Minors (i.e. <16y) provided verbal assent and their parent or legal guardian written consent. In cases where adolescents were unable to consent (i.e. severe communication impairment or perceived lack of capacity) then consent was only obtained from the parent or legal guardian and data was only collected via the caregiver. No data was collected in instances that adolescents indicated objection to participation, even in instances of parental consent.
Semi-structured focus group interviews were conducted with small groups of female adolescents with CP and separately small groups of their female caregivers. The interview schedules were initially piloted with two groups to ensure feasibility. The interview schedules were then refined to incorporate local dialect and improve in-depth probing. The adolescent interview schedule explored adolescents’ experiences, attitudes and beliefs about topics such as puberty, menstruation, erections, masturbation, relationships, marriage, sexual abuse and sources of information and support. The present study reports only on data related to menstruation. The caregiver interview schedule covered the same topics; caregivers were asked to answer ‘about’ their adolescent (i.e. as proxy report) and were also asked about their roles providing menstrual care.
Interviews were conducted in Bengali by a female researcher for whom Bengali was her day-to-day language, and were audio recorded. Participants received a small financial reimbursement for expenses incurred as a result of their participation.
Observational data was recorded in journal format during the interviews and reflexive notes made throughout the research process by the first author. This allowed for reflection by the author to understand their subjective positioning in relation to participants experiences and discourse.
This study adhered to COREQ guidelines and has ethical approval from the Bangladesh Medical Research Council (BMRC/NREC/2013–2016/1165) and University of Sydney Human Research Ethics Committee (2016/646). All procedures performed in this study were in accordance with the ethical standards of these institutes and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Analysis
Interviews were transcribed verbatim in Bengali. The Bengali transcripts were then translated to English by a speaker fluent in both Bengali and English but for whom Bengali was their day-to-day language. The translator was given instruction to focus on conceptual equivalence rather than literal word for word translation and to remove identifying information from the transcripts. The translated (English) transcripts were then read by members of the research team fluent in both languages to confirm acceptability of the translations and integrity to the original recording; conceptual discrepancies between the Bangla and English versions were resolved. English speaking members of the research team then read the final English transcripts to confirm understanding.
Adolescent and maternal data were initially analysed separately. The transcripts were read in an ‘active way’ [6] to identify patterns across the data and coding frames developed using a hybrid of deductive and inductive methods. Data was coded using NVivo 11 and thematically analysed using a material-discursive approach (see [29, 32]) and drawing on feminist disability theory (see [11]). Our approach acknowledges that the materiality of menstruation (i.e. the physical aspects of the experience) is inseparably interested in menstrual discourse (i.e. the meaning ascribed to menstruation in relation to influences from an individual’s life, cultural and political context). Both meaning and materiality are considered mutually necessary for understanding to be attained [5].