Resolution of diagnosis and parental attitudes among parents of adolescent kidney recipients

Abstract

The diagnosis of a chronic illness is described as an upsetting event that implies an emotional crisis for parents. Some are able to come to terms with their child's chronic condition and feel a sense of resolution, but for others, strong negative emotions persist through time. The present study examines diagnostic resolution among parents of teenagers with a transplant. The design was qualitative and involved individual interviews with nine parents. Five were donor to their child. Data were analyzed according to the principles of IPA. Early reactions to the diagnosis suggest that parents with an unresolved status experienced trauma. Many factors seem to contribute to diagnostic resolution such as good communication between spouses, positive relationship with the medical staff, and being the parent donor. For all parents, concerns over adherence are central to their relationship with their youth. Results call attention to the support needs of all parents and particularly those with an unresolved status.

Empowering patients to adhere to their treatment regimens: A multifaceted approach

“…The bidirectional impact of medication adherence on family dynamics cannot be understated. Leblond et al recently reported results from qualitative interviews with the parents of 9 adolescent transplant recipients 10 . Parents identified fears and preoccupations centered around medication adherence as predominant in their relationship with their transplant recipient children.…”

“…1 There are also tremendous ripple effects with non-adherence impacting the individual's family dynamic, and increasing emotional stress and burden over adherence management ( Figure 1). 10,11 On a greater scale, non-adherence has profound costs in terms of healthcare utilization. It has been estimated that among adult transplant recipients in the United States, medical care costs are over $33,000 greater per individual patient for persistently high versus persistently low adherence groups.…”

“…The decision to take a medication on time or at all is rooted not only in the individual's knowledge, motivation, and skills, but also heavily influenced by his/her interpersonal and family relationships, relationships with healthcare providers, and societal factors. 10,[13][14][15] The social-ecological model of health behavior theory posits that each of these factors has direct and indirect influences on our ability to partner with patients and their caregivers to promote their engagement in treatment adherence. 16 Michie et al have applied psychological theory to behavior change using the COM-B model (capability, opportunity, and motivation-Behavior), which states that a person must have adequate capability, opportunity, and motivation for a behavior, such as taking medication, to occur.…”

“…Based on prior literature and clinical experience, we know that non‐adherence is a multifaceted behavior influenced by numerous socio‐ecological domains. That is, an adolescent transplant recipient does not typically wake up and say purposefully, “Today, I am not going to take my life‐saving and rejection‐preventing medications.” The decision to take a medication on time or at all is rooted not only in the individual's knowledge, motivation, and skills, but also heavily influenced by his/her interpersonal and family relationships, relationships with healthcare providers, and societal factors 10,13‐15 . The social‐ecological model of health behavior theory posits that each of these factors has direct and indirect influences on our ability to partner with patients and their caregivers to promote their engagement in treatment adherence 16 .…”

The double gender bias in parental kidney donation among Muslim Arab patients

“…According to a recent study of parents of ESRD children patients, the parent donating a kidney might reduce the parent's sense of guilt. As Leblond et al (2019) put it: “Being the donor might have allowed these parents to overcome their guilt about having contributed to their child's disease by giving life for a second time” (2019, p.5). Accordingly, parents may feel obliged to donate a kidney either because of external pressure from the medical team or from other family members or because of their own internally felt pressure (Leblond et al, 2019).…”