{"id":4138,"date":"2021-04-19T12:28:42","date_gmt":"2021-04-19T16:28:42","guid":{"rendered":"http:\/\/sites.miamioh.edu\/undergraduate-research-forum\/?p=4138"},"modified":"2021-04-20T11:49:48","modified_gmt":"2021-04-20T15:49:48","slug":"a11-t-typology-of-adaptation-parenting-children-with-primary-lymphedema","status":"publish","type":"post","link":"https:\/\/sites.miamioh.edu\/undergraduate-research-forum\/a11-t-typology-of-adaptation-parenting-children-with-primary-lymphedema\/","title":{"rendered":"A11-T: Typology of Adaptation Parenting Children with Primary Lymphedema"},"content":{"rendered":"\n

Mothers of children with primary lymphedema (LE) may be vulnerable to experiencing feelings of helplessness, frustration, grief, and excess stress that can lead to negative mood and child behavioral problems. This study aimed to gain an in-depth understanding of the lived experiences of these mothers. Data were collected using semi-structured interviews with mothers (N=26) of children with LE from seven countries. Qualitative data were coded using a codebook. Codes were then subject to discussion by the research team who identified a pattern of parenting approaches. Approaches to parenting fell along a continuum of typologies from unguarded, relaxed, and open (Naturalized Modification) to overprotective, anxious, and worried (Conscious Protection), with Flexible Safeguarding being the middle ground. While Naturalized Modification mothers worried about complications, they chose to give their child a normal life by only making changes for LE when necessary. In contrast, parents who fell into the Conscious Protection category tended to list reasons including fear of exacerbating their child\u2019s LE, as well as wanting to provide a \u201cnew normal\u201d for their child that is centered around the LE diagnosis. Lastly, Flexible Safeguarding parents accepted their child’s LE and displayed features of both Naturalized Modification and Conscious Protection parenting styles. The resulting typologies of these approaches to parenting provide insight into the unique challenges these mothers face that may be used by healthcare providers, social workers, Child Life Specialists, and Family Life Educators to ensure that mothers, fathers, and other caregivers are receiving the support they need. As future healthcare professionals, we hope to understand our patients beyond their disease, thereby becoming their advocates in ways that are best fit for their identity. <\/p>\n\n\n\n

Authors: <\/strong>Rakhsha Khatri, Elizabeth Hudelson<\/p>\n\n\n\n

Faculty Advisor: <\/strong>Elise Radina, Family Science and Social Work<\/p>\n\n\n\n