Written by Jennifer Oddy, Entitled: Distress And Coping of Mothers of Children With Muscular Dystrophy
Sampling Method, Sample, and Setting
Sampling method. The participants will be recruited by criterion purposive sampling by their doctors/nurses at the Muscular Dystrophy Association clinic at Boston Children’s Hospital.
Sample. Inclusion criteria are the following: (1) You are 21 years of age or greater; (2) are the mother of a child with muscular dystrophy; (3) your child is aged between 4 and 17 and was 10 years or younger at their first physical assessment by a primary care provider; (4) you provide roughly 75% or more of the home care for the child.
People will not be eligible for this study if they: (1) have been diagnosed with a mental health disorder (bipolar disorder, schizophrenia, or have a physical addiction to drugs or alcohol); (2) if the child is currently residing in a long-term care facility.
The sample size will ideally be about 10 participants. Phenomenological studies tend to rely on very small samples, since there is one guiding principle for selecting the sample: all participants must have experienced the phenomenon and must be able to articulate what it is like to have lived the experience (Polit & Beck, 2012). Data will be collected until saturation is accomplished.
Setting. The proposed setting for this study is at the Muscular Dystrophy Association (MDA) clinic at Boston Children’s Hospital located at 300 Longwood Ave, Boston, MA. There are two directors at the clinic, an orthopedic, and a pediatric neurologist. The team members include a social worker, physical therapist, and a genetic counselor. The number of patients at the clinic cannot be disclosed, however, Boston Children’s Hospital is considered an elite clinic and is included in the MDA network that supports clinical trials and research. The hospital offers the highest level of diagnostic and treatment services, with neurologists and other specialists being very experienced in treating children with muscular dystrophy.
Informed consent and ethical considerations
Before enrolling participants in this study, an informed consent must be signed and approved by an Institutional Review Board (IRB, Appendix A). This will be obtained from the Muscular Dystrophy Association clinic at Boston Children’s Hospital, as well as from Regis College. An application and proposal will be sent to the IRB, requesting approval for this study. Since there is minimal risk to subjects, an expedited review will be requested (Polit & Beck, 2012). There is a risk that the participant may have feelings of discomfort while discussing the experiences of caring for a child with muscular dystrophy. This will be minimized by the researcher with empathy and compassion. If the participant would like counseling, a call will be made to their primary care provider.
There are no foreseen ethical issues involved in this research study. The interviews will be tape recorded, transcribed, and held in locked files in an office. The results of the interviews will remain confidential, only being available to the researcher, in order to protect the participants. All participants involved in the study will receive full clarification of the purpose of the study, the research process, and research results in order to ensure that participants can make an informed consent to participate in the study.