Browsing by Subject "Care coordination"

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Parent decision-making for children with End Stage Renal Disease (ESRD) : description, interpretation, and implications
(2017-08) Koch, Kendra Dianne; Jones, Barbara (Barbara L.); Cole, Allan H; Pomeroy, Elizabeth C; Wakefield, Toni A
In 2015, 224 infants in the United States were diagnosed with end-stage renal disease (ESRD). Infants with ESRD often require renal replacement therapy (RRT), commonly known as dialysis, for treatment. Although they are a minute subset of children, like other children with medical complexity (CMC), infants who require renal replacement therapy (RRT) are medically complex and need high levels of professional and home care. Although treatments are proving more promising, infants with ESRD have historically poor outcomes. Medical decision making for parents of infants with end stage renal disease can be a process fraught with conflict, uncertainty, discord, and stress. Questions of which treatment to pursue or whether or not to forego life-sustaining treatment, weigh heavily. Knowing which decision to make is not a simple task. To aid in decision making, healthcare professionals have promoted Shared Decision Making (SDM) as a model, however, the vast majority of individuals who become patients, still are not supported with the SDM model. The SDM model and others have not been adequately studied from the parent and patient perspective. Parents of infants with ESRD and other CMC, are affected emotionally, financially, physically and relationally by the everyday parenting and care of their child. Decision making is another task that increases the burden to caregivers. This dissertation will provide an explanation of the experience of parents making decisions for infants with ESRD, the meaning made for mothers within that experience, situating both in current research. The dissertation the provides the implications of experience and meaning findings--to social work practice, policy, and education. Article 1 describes the experience of mothers, resulting in four essential themes: (a) information and communication are important, (b) I want to give my baby every chance, (c) it's hard to know for certain what to do, and (d) mothers and fathers take different roles in care giving and decision making. Article 2 provides an explanation of the meaning that mothers of infants with ESRD make of their decision making and caregiving experience: 1) Information has its limits, and 2) Mothers pull the load. Understanding the broader experience and meaning of decision-making for parents, and specifically, mothers of infants with CMC, may increase the effectiveness of decision-making techniques, interventions, and tools developed for parent caregivers in the future. In addition this dissertation and the articles included in it provide a close look at author reflexivity in qualitative study as well as a template for studying the broad experience of parent decision makers that includes beginning with experience, adding meaning in order to reveal a practical purpose and meaningful implications for social workers, social work reserachers and other healthcare professionals.