Sickle cell disease perceptions of caregivers, adolescent, and adult patients: Barriers and facilitators to medical care adherence

Abstract

AimsTo provide an understanding of medical care adherence factors as reported by caregivers, adolescent, and adult patients with sickle cell disease and to analyse those concerns to identify barriers and facilitators about medical care adherence. Three topics influenced medical care adherence: the disease itself, therapeutics, and the healthcare system. This study will focus on the first topic.DesignQualitative explorative study, using semi‐structured and life‐experience interviews and manual inductive content analysis.MethodsFrom December 2016 – March 2017, one semi‐structured interview was conducted by a researcher with each of the 15 adolescent patients, 10 adult patients, and 19 caregivers in a French public hospital. Interviews were audio‐taped and transcribed before a content analysis. Perceptions were classified into barriers and facilitators of medical care adherence.ResultsThis article presents disease perceptions of caregivers and patients (adolescents and adults): daily management and social representations. These perceptions differ among parents, adolescent patients, and adult patients. However, all report important disease‐related “limitations” in their lives. The objective for adults (parents and patients) is to “live with the disease” and to achieve this, they find coping resources. Two major resources expressed by adults emerged: social resources (support from friends, patients’ association, and social visibility) and disease knowledge (theoretical and derived from experience). This is not the case of adolescents for whom social normality was the main concern.ConclusionCare management adherence is partly based on coping with the disease. Given the lower number of facilitators expressed by adolescents, it is essential to propose interventions in this population. It will help them cope with the disease and, consequently, optimize care management adherence.ImpactShowing differences among caregivers, adult, and adolescent patient perceptions, this study impact future care practices. It revealed needs of intervention for adolescents.

Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

“…The DREPADO project is the first RCT designed to assess the impact of a paediatric-adult transition programme. The latter is based on the available literature [3] and on a recent previous qualitative study [10]. In accordance, it involves both paediatric and adult departments of care by starting the intervention in a paediatric department and continuing it in adult department of care.…”

“…In accordance, it involves both paediatric and adult departments of care by starting the intervention in a paediatric department and continuing it in adult department of care. In addition, the qualitative study found that the needs of parents and patients were biopsychosocial, both individual and familial [10]. Added to that, the modifiable factors of the SMART [11,12] were included in the 3 axis of the programme, to become patients' coping skills.…”

“…Furthermore, because the previous qualitative study [10] found the need for an integrated caregiver programme, the educative axis involves both the patient and their parent. This axis is conducted at home as this is patient's environment contrary to the hospital which is the environnement of care [21].…”

“…Parents, as well as adolescent and adult patients with SCD were individually interviewed about it. Results revealed individual and also family needs that concerned knowledge of the disease, coping skills, therapeutics, and psychosocial aspects [10].…”

Caregiver experiences with accessing sickle cell care and the use of telemedicine

“…While previous studies have identified barriers to accessing care for adults with SCD, less is understood about the barriers that affect the pediatric SCD patient population [14]. Furthermore, there is limited data regarding barriers for those living in the Midwest, specifically in rural and medically under-resourced communities [1,15,16]. Telemedicine, the remote provision of medical care using real-time audio-visual consultation, is a valuable solution to addressing physician shortages and geographic barriers faced by patients and has proven successful for consultations in a variety of pediatric specialties [17].…”