Preliminary study results
Understanding the lived experiences of parents raising children with lymphedema
By E. Radina, K. Kawamura, M. Martin, S. Rich, L. Clark, L. Ramsey and A. Oddo
Parents of children with primary lymphedema (LE) have received limited research attention despite their vulnerability for experiencing feelings of helplessness, frustration, and grief as well as higher levels of stress and depression (Kepteotes, Keatinge, & Stone, 2010; Todd,
2015). Parents’ experiences of excess stress can lead to negative mood and child behavioral problems (Miodrag, Berke, Tanner-Smith, & Hodapp, 2015). Thus, our study aimed to gain in-depth understanding of the lived experiences of parents. Data was collected
Principal Investigator: Dr. Elise Radina is Professor and Chair of the Department of Family Science and Social Work at Miami University (Oxford, OH, USA).
Kaylie Kawamura, BS, Family Studies, Miami University; Mary Martin, Social Work, Miami University; Sarah Rich, Nursing, Kent State University – Geauga; Lindsay Clark, Biology, Miami University; Lauren Ramsey, Biology, Miami University; Alyssa Oddo, Social Work, Miami University.
using semi-structured interviews with parents (N= 22) of children (mean age 9.65 years) with LE from seven countries. Recruitment for parent participants is currently open. Here we present preliminary results, which were also presented at the 2016 National Lymphedema Network Conference in Dallas, TX.
Participant description
The majority of the participants were between the ages of 25 and 44, white, and female. Participants were primarily from the United States. Participants from outside the US were from the United Kingdom, New Zealand,
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Australia, South Africa, Ireland, and Canada. The majority of the participants’ children were between 1 and 12 years of age with an overall range of 1 to 18 years. Twelve of the children were female and 9 were male. 52.38% of the participants’ children were diagnosed before they were one year old. 28.57% of the participants’ children were diagnosed between 1 and 4 years of age. The remaining children were diagnosed between the ages of 5 and 15. The majority of the participants’ children were affected in their right and left legs, or other parts of their body, including genitals, both feet and hands, or their full body.
Methods
Parents completed measures of their child’s symptoms, activities of daily living, and psychological distress as well as of their own psychological stress. Semistructured interviews included their child’s story of lymphedema, parental challenges, ways in which they have advocated for their child, how they explain LE, how they teach their child to explain LE, and personal experiences of support and coping mechanisms. Parents were interviewed by undergraduate research assistants. After the interview, the interview was transcribed and reviewed by two coders. For each transcript, coders identified major themes and compared these themes across all of the transcripts to identify overarching themes.
Results
The most frequently reported LE symptoms were swelling, firmness, tightness, and heaviness in the affected limb. As a result of LE, the majority of parents reported that their child’s regular social and leisure activities were
affected. In relation to their LE, parents also reported that their children most frequently experienced frustration, sadness, and irritation. Parents reported that they personally experienced worry, frustration, sadness, and fear most often related to their child’s LE. Throughout the interviews, four major themes were identified. First, there is an overall lack of knowledge from medical professionals on lymphedema, which can lead to feelings of frustration and experiences of misdiagnosis. Another theme throughout the interviews was the presence of financial and insurance struggles. The third theme was having difficulty finding and keeping therapists. Lastly, support was a major key factor when it came to living with lymphedema. LP
If you are interested in volunteering for this study, please contact the Principal Investigator, Dr. Elise Radina, at RadinaME@MiamiOH.edu.
A full set of references can be found online at www.lymphedemapathways.ca
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