US data on children and youth caregivers in amyotrophic lateral sclerosis

Abstract

ObjectiveAn estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS.MethodsOnline adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used.ResultsYouth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud.ConclusionYouth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.

Variations and Patterns in Sleep: A Feasibility Study of Young Carers in Families with ALS

“…Yet, sleep is not the only disruption found in young carers. Data from earlier work on ALS, found youth are often too worried to concentrate in class [ 8 ], underscoring the potential for worry and anxiety to not only impact sleep, but to also affect other farther-reaching activities including school performance and attendance, leading to the need for intervention. Indeed, evidence from adult caregivers’ mindfulness interventions showed improvement in PSQI in adult caregivers [ 33 ], which underscores the potential utility in reducing PSQI scores and improving sleep health in young carers through mindfulness and relaxation interventions.…”

“…Young carers participate in emotionally difficult and demanding care well into the evening, including for complex and difficult to manage diseases such as amyotrophic lateral sclerosis (ALS) [ 7 ]. In the U.S., young carers in families with ALS engage in care for up to 5 h a day [ 8 ], including into the evening hours, potentially affecting sleep.…”

Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs

“…Using a directed approach, a first draft coding scheme was developed by the first author. This scheme comprised codes derived from previous research including but not limited to the field of ALS [ 3 , 6 – 11 , 13 , 17 – 31 ] and served as a starting point for the content analysis. For each code, the coding scheme provided a definition and guidelines on how and when to use this code.…”

“…Whereas these studies stress the importance of having adequate support systems for children of a parent with ALS, children are, as yet, often overlooked by health care professionals when it comes to providing information and support. Meanwhile parents worry about the impact of ALS on their children’s lives, are uncertain how to communicate to their children about ALS, and struggle with how to optimally support their children in dealing with the diagnosis, the physical and emotional deterioration of the parent and the prospect of parental loss [ 9 – 11 ], leaving children confused, questioning and without guidance. To protect children throughout the illness trajectory, it is thus not only crucial to support children themselves, but first and foremost to empower parents to support their family.…”

Explorando a diversidade do cuidado familiar prestado por jovens cuidadores

“…Os jovens cuidadores constituem um grupo de cuidadores informais pouco percebidos 1 . Estima-se que em torno de 1,4 milhão de jovens cuidadores nos Estados Unidos da América (EUA) permanecem ocultos aos programas e serviços estaduais e nacionais, realizando atividades que incluem desde tarefas domésticas até a administração de medicações 3,4 . Um estudo realizado na Suíça revelou uma prevalência de 8 a 9% de jovens cuidadores com idade entre 9 e 15 anos 5 .…”