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IntroductionChildren and youth under the age of 19 provide daily care for family members living with illness, including Amyotrophic Lateral Sclerosis (ALS). Caregiving affects school performance, social support, stress, and anxiety. Yet, little is known about potential disruptions in sleep.MethodsA quasi-experimental matched comparison of age- and gender-matched young carers (n = 8) and non-carers (n = 12) was used in this study. Participants completed a pre/post survey, wore an actigraphy device, and journaled sleep/wake times for 5 days.ResultsYoung carers had shorter sleep duration (t = 51.19 (11.99)), efficiency (t = 55.49 (14.00)), sleep quality (t = 51.32 (12.26)), and higher rates of utilizing sleep medications (t = 50.81 (11.49)). The case study sleep data showed that carers had lower total sleep time (CG = 6.75 ± 1.47, NCG = 7.08 ± 1.36) and sleep efficiency than non-caregivers (0.80 ± 0.23). Case examples were reported across groups.ConclusionsThe study results demonstrate feasibility, while providing crucial initial case data on sleep quality in young carers. The findings underscore the need to better document the impact of caregiving on young carer's well-being across several areas, including sleep. This data has implications for larger scale studies examining how sleep disruption impacts well-being more broadly and in providing support and respite interventions for young carers across disorders.

In amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), it is necessary to communicate difficult news during the initial diagnosis and throughout the disease trajectory as the condition progresses. However, delivering difficult news to people with ALS/MND is an emotionally demanding task for healthcare and allied health professionals—one for which many feel ill-prepared because of limited training in this area. Ineffective communication of difficult news damages the patient-provider relationship and negatively impacts patient quality of life (QoL). To address this issue, we developed the A-L S-PIKES protocol based on available literature and our extensive clinical experience. It provides easy-to-follow, stepwise guidelines to effectively deliver difficult news to people with ALS/MND (PALS) that includes: Advance Preparation (preparing for the discussion logistically and emotionally); Location & Setting (creating a comfortable setting that fosters rapport); Patient's Perceptions (assessing PALS' understanding and perception of their condition); Invitation (seeking PALS' permission to share information); Knowledge (sharing information in a clear, understandable manner); Emotion/Empathy (addressing emotions with empathy and providing emotional support); and Strategy & Summary (summarizing the discussion and collaboratively developing a plan of action). A–L S–PIKES provides practical guidelines on how to prepare for and conduct these challenging conversations. It emphasizes effective communication tailored to the individual needs of PALS and their families, empathy, sensitivity, and support for PALS' emotional well-being and autonomy. The aim of A-L S-PIKES is to both enhance skills and confidence in delivering difficult news and to improve the QoL of PALS and their families. Future studies should systematically evaluate the feasibility and effectiveness of A-L S-PIKES to establish its utility in clinical practice. [ABSTRACT FROM AUTHOR]

Background: Caregiver skill training and support programs are traditionally offered to adult caregivers, leaving out the over 1 million children and youth who provide care ("young caregivers"). Skill building and support programs are critical to caregiver and patient well-being and can be informed by the knowledge of current caregiver skill and support acquisition. Objective: Using data from three studies of neurological disorders, this paper provides initial data on how young caregivers acquire caregiver skills and training needed to inform young caregiver programs. Method: Mixed method data drawn from three studies of young caregivers in neurological disorders, Huntington's disease (HD) and amyotrophic lateral sclerosis (ALS). Results: Youth (N = 96), ranged in age from 8 to 20, care for a family member with HD or ALS, and involved in tasks ranging from assistance with walking (76%), toileting (32%) and administering medications (37%). The majority (N = 59; 61%), received no training or guidance. When asked how they knew what to do, six main themes arose: (1) patient tells me what to do, (2) watching and observing, (3) common sense, (4) treating patient like child or self, (5) process of figuring it out, and (6) don't know. Conclusion: Young caregivers in neurological disorders engage in numerous caregiving tasks with little formal guidance, despite a desire for training and education by adults and professionals. Reliance on various skill methods and lack of formal guidance, points to the need for health care professionals to develop education and training programs targeting this isolated and underserved population, improving the well-being of both caregiver and care recipient.

Objectives: In families with a parent diagnosed with amyotrophic lateral sclerosis (ALS), children's adaptation depends among others on how their parents communicate with them about the disease and its trajectory. The aim of this study was to explore parents' and children's perceptions of ALS-related family communication. Methods: A qualitative analysis using a conventional content analysis approach was applied to interview data previously collected from 21 parents (8 with ALS) and 15 children (age 13–23 years) about their experiences living with ALS. Results: Three themes emerged from the interviews: communication topics, styles and timing. Communication topics include facts about disease and prognosis, feelings, care and equipment, and the end. Although most parents perceived the familial communication style concerning ALS as open, the interviews revealed that both parents and children sometimes avoid interactions about ALS, because they do not know what to say or how to open the dialogue, are afraid to burden other family members, or are unwilling to discuss. Communication timing is directed by changes in the disease trajectory and/or questions of children. A family-level analysis showed that ALS-related family communication is sometimes perceived differently by parents and children. Conclusions: The study provides a better understanding of what, how and when parents and children in families living with ALS communicate about the disease. Most families opened the dialogue about ALS yet encountered challenges which may hamper good familial communication. Through addressing those challenges, healthcare professionals may facilitate better communication and adaptation in families with a parent with ALS. [ABSTRACT FROM AUTHOR]

Intersectionality of identities--minority, youth, and caregiver--situated within the current health crisis of the COVID-19 pandemic may combine to impact vulnerable young African and Latino caregivers, "young carers," helping in the care of older adults with Alzheimer's and related dementias (ADRD). This qualitative study aimed to describe these vulnerable, minority young caregivers' experiences and changes due to the pandemic. As part of a larger study on caregiver identification of crises and early warning signs of ADRD in the Latino and African American community, Latino or African American youth (N = 20) were interviewed to assess how the COVID-19 pandemic was affecting/had affected their care experiences. Qualitative interviews with youth lasted between 20 and 40 minutes and were transcribed for clarity and analyzed using conventional content analysis. Several themes emerged from the interviews, including lack of respite care, increased or decreased caregiving, changes in care recipient mood, changes in the caregiver's schooling, and increased young carer worry. Participants described a complex identity--that of caregivers, youth, and students. Youth report similar care task stressors as adult caregivers, but the latter's stressors may be amplified via intersectionality with other at-risk group memberships, especially during pandemic-induced social isolation, and limited care supports, which have disproportionately affected minority communities of color. Thus, minority youth providing care during a global health crisis may experience uniquely powerful stressors that require additional support as the health crisis continues, despite aspects of normal daily life resuming. [ABSTRACT FROM AUTHOR]

Introduction: Of the family members providing care, in the United States over 5.4 million are young people (<18 years of age) and they are the caregivers receiving the least support overall. Given the need to support cancer survivors through a family-centered practice approach, this lack of support and intervention for young caregivers represents a substantial gap in cancer care. In this study, we will adapt a young caregivers intervention, YCare, with young caregivers in families affected by cancer in order to advance support for families in cancer settings. YCare is an intervention that improves the support young caregivers provide through a peer-engaged, multidisciplinary model but has previously not been studied in the cancer care setting. Methods: Guided by the updated Consolidated Framework for Implementation Research (CFIR) we will engage stakeholders (i.e., young caregivers, cancer survivors, health care providers) using qualitative (i.e., one-on-one semi-structured interviews) and arts-based methods. Stakeholders will be recruited via cancer registries and community partners. Data will be analyzed descriptively using deductive (e.g., CFIR domains) and inductive (e.g., cancer practice settings) approaches. Discussion: The results will indicate the critical components for adapting the YCare intervention to the cancer practice context including new intervention elements and key characteristics. Adapting YCare to a cancer context will address a critical cancer disparity issue. [ABSTRACT FROM AUTHOR]

Amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) remains under-resourced across much of the world, including the global south. The lack of supports for ALS/MND is underscored, given the barriers to care, stigma associated, and need for intensive, 24-hour care, primarily provided by family, including vulnerable children and youth, 'young carers'. With little information of the care experience in ALS/MND in South Africa, this study sought to explore family characteristics and identify caregiving experiences and need of young carers in families living with ALS/MND. Using an exploratory mixed-methods approach, participants (N = 40) from 20 familes, were recruited from the two ALS/MND clinics in Cape Town and Johannesburg areas. Separate audiotaped interviews with adults living with ALS, adult caregivers and young carers were conducted. Young carers, both genders, ages 9–19, provided care up to 50 or more hours per week, including administering medications, toileting, and feeding the person with ALS/MND, with the majority reporting no training. Stigma, fear and lack of knowledge about ALS/MND limited how families discussed both ALS/MND and care provided by young carers. Families highlighted transportation barriers, and inconsistent access to care across regions. Parents identified emotional support, and in-home help to alleviate the burden of care on youth, acknowledging reliance on young carers due to cost of care. Young carers identified the need for education and people their age to talk to about ALS/MND. Results highlight the complex needs and interaction among families living with ALS/MND in South Africa. Data support the development of targeted support and education programs to address the need for culturally relevant interventions for families and their young carers living with ALS/MND. [ABSTRACT FROM AUTHOR]

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS.Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS.Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors. Demographic data, caregiving tasks and evaluations were collected.Results: The model is feasible for both youth and therapists. Youth found benefit, skill acquisition, and mastery by asking questions, teaching back skills to the group and engaging with peers.Conclusion: This project demonstrates young caregivers will participate in training, and engage with “like” peer group. Future projects will focus on developing a structured survey and observation, testing efficacy in larger groups. [ABSTRACT FROM PUBLISHER]

Approximately 1.4 million young children under the age of 18 in the United States provide some measure of care to a parent or ill family member. These "young carers" in the United States are an isolated group, with no state or national policies providing support or care, in contrast to the numerous programs for adult caregivers in the United States. In the absence of any support programming, this paper examines United States young carers within a rights context, focusing on rights defined by the UN convention on the rights of the child (UNCRC). The paper examines how the conventions and policies are applied to other countries including the UK, Australia, Canada and South Africa, and can be used to support the development of services, policies and legislation targeting the rights of young carers in the United States. An analysis of the UNCRC found several articles pertaining to young carers. Article 19 provides for the right to be protected from violence, abuse, neglect, and exploitation; Article 9, on the need to keep young carers with their parents; Article 17, on addressing the role media can play in raising awareness of young carers; Article 28 underscores the right to do well in school, and is vital to young carers whose schoolwork frequently suffers as a result of caregiving duties; Article 31 addresses rest and leisure, underscoring the right to have down time and rest from their caregiving lives; and finally, Article 32 recognizes the right of the child to be protected from economic exploitation and the need to provide financial support for young carers. The United States pays little to no attention to young carers. Thus, basing young carer needs within a rights based framework, including those used by other countries, may provide the backing for the development and creation of support policies across the United States for an isolated, underserved population. [ABSTRACT FROM AUTHOR]

This study explores the support needs of an isolated and little known caregiver population: children and adolescents aged 12–20, who provide care to a parent with Huntington’s disease (HD), often referred to as “young carers.” Stigmatizing symptoms of HD, including depression, personality change, psychosis, and involuntary movements, often leave family caregivers isolated with little support. Increasing attention is paid to the support of adult caregivers, yet little attention has been given to young carers in the family, including support needs they describe as important. Individual interviews were conducted with 40 young carers from 18 states, recruited through the Huntington’s Disease Society of America. Participants were asked two open-ended questions: (1) what things can people do to help you care for your mom/dad? (2) what things do you need to help you care for your mom/dad that you do not currently have? Content analysis was used to analyze the interview transcripts. Data analysis elicited three main categories associated with support needs: (1)instrumental support, (2)emotional support,and(3)personal needs. Each category detailed the need for friends to be understanding, others to show care for the caregiver and for the young carers to receive assistance with caregiving tasks. Furthermore, they stated a need for information and advice about caregiving, and the creation of outlets, such as support groups, to help them feel less alone and to normalize their situation. With little information on HD and minimal support outlets, many study participants lack resources, which exacerbates their isolation and vulnerability to negative impacts of caregiving. Thus, the results of this study provide clear implications for social work and health care professionals in designing support programs and services targeted to young carers of a parent with HD. [ABSTRACT FROM AUTHOR]