Dataset Information

"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.

ABSTRACT: Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers' field notes and caregivers' personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an "obstacle course", and was described via three main themes: (a) looking for answers, with two subthemes identified, namely 'the first symptoms', and 'the need for a diagnosis'; (b) managing day to day life, with the subthemes 'applying treatments', and 'learning to care'; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

SUBMITTER: Palacios-Cena D

PROVIDER: S-EPMC6338949 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

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"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.

Palacios-Ceña Domingo D Famoso-Pérez Pilar P Salom-Moreno Jaime J Carrasco-Garrido Pilar P Pérez-Corrales Jorge J Paras-Bravo Paula P Güeita-Rodriguez Javier J

International journal of environmental research and public health 20181225 1

<i>Background</i>: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. <i>Methods</i>: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their ch ...[more]

PMID: 30585176

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Project description:Understanding caregivers' experiences of care can identify barriers to timely and good quality care, and support the improvement of services. We aimed to explore caregivers' experiences and perceptions of pathways to care, from first access through various levels of health service, for seriously ill and injured children in Cape Town, South Africa, in order to identify areas for improvement.Semi-structured, qualitative interviews were conducted with primary caregivers of children who were admitted to paediatric intensive care or died in the health system prior to intensive care admission. Interviews explored caregivers' experiences from when their child first became ill, through each level of health care to paediatric intensive care or death. A maximum variation sample of transcripts was purposively sampled from a larger cohort study based on demographic characteristics, child diagnosis, and outcome at 30 days; and analysed using the method of constant comparison.Of the 282 caregivers who were interviewed in the larger cohort study, 45 interviews were included in this qualitative analysis. Some caregivers employed 'tactics' to gain quicker access to care, including bypassing lower levels of care, and negotiating or demanding to see a healthcare professional ahead of other patients. It was sometimes unclear how to access emergency care within facilities; and non-medical personnel informally judged illness severity and helped or hindered quicker access. Caregivers commonly misconceived ambulances to be slow to arrive, and were concerned when ambulance transfers were seemingly not prioritised by illness severity. Communication was often good, but some caregivers experienced language difficulties and/or criticism.Interventions to improve child health care could be based on: reorganising the reception of seriously ill children and making the emergency route within healthcare facilities clear; promoting caregivers' use of ambulances and prioritising transfers according to illness severity; addressing language barriers, and emphasising the importance of effective communication to healthcare providers.

Project description:Epilepsy is common in Rett syndrome, an X-linked dominant disorder caused by mutations in the MECP2 gene, and in Rett-related disorders, such as MECP2 duplication. However, neither the longitudinal course of epilepsy nor the patterns of seizure onset and remission have been described in Rett syndrome and related conditions. The present study summarizes the findings of the Rett syndrome Natural History study. Participants with clinical Rett syndrome and those with MECP2 mutations without the clinical syndrome were recruited through the Rett Natural History study from 2006 to 2015. Clinical details were collected, and cumulative lifetime prevalence of epilepsy was determined using the Kaplan-Meier estimator. Risk factors for epilepsy were assessed using Cox proportional hazards models. Of 1205 participants enrolled in the study, 922 had classic Rett syndrome, and 778 of these were followed longitudinally for 3939 person-years. The diagnosis of atypical Rett syndrome with a severe clinical phenotype was associated with higher prevalence of epilepsy than those with classic Rett syndrome. While point prevalence of active seizures ranged from 30% to 44%, the estimated cumulative lifetime prevalence of epilepsy using Kaplan-Meier approached 90%. Specific MECP2 mutations were not significantly associated with either seizure prevalence or seizure severity. In contrast, many clinical features were associated with seizure prevalence; frequency of hospitalizations, inability to walk, bradykinesia, scoliosis, gastrostomy feeding, age of seizure onset, and late age of diagnosis were independently associated with higher odds of an individual having epilepsy. Aggressive behaviour was associated with lower odds. Three distinct patterns of seizure prevalence emerged in classic Rett syndrome, including those who did not have seizures throughout the study, those who had frequent relapse and remission, and those who had relentless seizures. Although 248 of those with classic Rett syndrome and a history of seizures were in terminal remission at last contact, only 74 (12% of those with a history of epilepsy) were seizure free and off anti-seizure medication. When studied longitudinally, point prevalence of active seizures is relatively low in Rett syndrome, although lifetime risk of epilepsy is higher than previously reported. While daily seizures are uncommon in Rett syndrome, prolonged remission is less common than in other causes of childhood onset epilepsy. Complete remission off anti-seizure medications is possible, but future efforts should be directed at determining what factors predict when withdrawal of medications in those who are seizure free is propitious.

Project description:BackgroundGlobally, about 5.2 million children under the age of five died in 2019, and more than half of those deaths occurred in Sub-Saharan Africa. In almost every death of a sick child, there is a parent/caregiver seeking health services for their child. This study sought to understand the experiences of care for parents/caregivers (caregivers) as they navigate the hospital system with the aim of identifying opportunities to improve service delivery and child health outcomes.MethodsQualitative data were collected from five hospitals in Kenya: three in Nairobi County and two in Bungoma County. Twenty-five in-depth interviews with caregivers (couples and single women) of young children 0-24 months old, 17 focus group discussions with women and men, and 64 institutional ethnographic observations were completed. Data were analyzed by initial annotation of transcripts and field materials, followed by open coding and thematic analysis using Nvivo 12 software. Summary themes were used to compare experiences between female and male caregivers, their child's age group, and study sites.ResultsCaregivers faced complex processes of care while seeking health services for their sick young children. Three overarching themes emerged with some variability across female and male caregiver perspectives: (1) Navigating structural issues: long wait times, confusing payment mechanisms, overcrowding, unhygienic conditions, and strict visitation policies; (2) Interactions with providers: positive experiences, including providers showing empathy and concern, and negative experiences of harsh language, neglect, lack of privacy, discounting caregiver perspectives, and not involving men; Limited communication between caregivers and providers on child's diagnosis, treatment, and progress and lack of communication specifically between male caregivers and providers; and (3) Limited emotional support for both caregivers during difficult diagnosis or bereavement.ConclusionsTo improve experiences, interventions, programs, and policies need to focus on good provider-caregiver partnerships; enhancing opportunities for male engagement, such as supportive visiting hours; effective communication between caregivers and providers; access to adequate emotional support; and an enabling hospital environment.

Project description:BackgroundFamily caregivers, mostly parents, are greatly involved in the care of their children with end stage kidney disease (ESKD) globally. Yet, the experiences of these caregivers and the demands placed on them by the caregiving role have not been explored or documented in Ghana. This study explored how caregiving affects the psychological, physical, social, and spiritual well-being of family caregivers of children with end stage kidney disease (ESKD) in Ghana.MethodsA phenomenological approach with the purposive sampling technique was used to gather data from 12 family caregivers of children with ESKD at a pediatric renal unit in Ghana. A semi-structured interview guide was constructed based on the constructs of the City of Hope Quality of Life (QoL) Family Caregiver Model and the research objectives. Colaizzi's thematic analysis approach was utilized to analyze data for this study. Themes were organized under the domains of the chosen model, and a new theme outside these domains was also generated.ResultsThe majority of the family caregivers experienced anxiety, fear, uncertainty, and hopelessness in response to the children's diagnosis and care. The thought of the possibility of the children dying was deeply traumatizing for our participants. Most participants reported bodily pains and physical ailments because of lifting and caring for the children. Financial constraint was also a key issue for all the family caregivers. Most of them received diverse support from their families and loved ones. Due to the demanding nature of the care, most family caregivers had to change or quit their jobs. They coped with the challenges through prayers, participating in religious activities, and being hopeful in God for healing.ConclusionAll the family caregivers had their psychological well-being compromised as a result of the challenges they encountered physically, socially, and spiritually. Continuous psychosocial support, funding support, and review of policies on leave for civil workers with children diagnosed with ESKD are urgently required.

Dataset Information

"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.

Publications

"Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.

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