What, how and when do families communicate about ALS? A qualitative exploration of parents' and children's perceptions.

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.

Adapting an intervention to support young caregivers of cancer survivors: A study protocol.

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.

Stigma experienced by ALS/PMA patients and their caregivers: a mixed-methods study.

OBJECTIVE: Previous work suggests that stigma negatively impacts quality of life in people living with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). This study aimed to explore experiences of enacted stigma (experienced discrimination) and felt stigma (shame, fear of exclusion) among Dutch ALS/PMA patients and their caregivers. A secondary aim was to assess associated factors of enacted/felt stigma among patients. METHODS: A two-phase mixed-methods study was conducted, comprising cross-sectional surveys among 193 ALS/PMA patients and 87 caregivers, and semi-structured interviews with 8 ALS/PMA patients and 11 family caregivers. Descriptive and multivariable regression analyses along with qualitative content analysis were used to analyze survey and interview data. RESULTS: Survey findings indicate that patients and caregivers experience enacted and felt stigma. Interviews with both patients and caregivers revealed two manifestations of enacted stigma, including social exclusion (e.g. relationship distancing) and stigmatizing attitudes/behaviors displayed by others (e.g. staring), and three manifestations of felt stigma, including alienation (e.g. shame/embarrassment), perceived discrimination (e.g. feeling judged) and anticipated stigma (e.g. fear of exclusion). Patients and caregivers engaged in concealing and resisting responses to stigma. More bulbar symptoms, King's clinical stage, younger age and living without a partner were significantly associated with enacted/felt stigma among patients. CONCLUSIONS: Our findings reveal a range of perceptions and experiences underlying enacted/felt stigma among ALS/PMA patients and their caregivers that may serve as conversation topics in clinical practice. Future research may shed more light on the determinants as well as the consequences of stigmatizing experiences among patients and caregivers.

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

BACKGROUND: Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children's experiences, struggles and support needs in families living with ALS. METHODS: Semi-structured interviews were conducted with 8 parents with ALS, 13 well parents and 15 children, together representing 17 families. Interview data were analyzed using qualitative content analysis. RESULTS: Three major themes were identified relating to (1) ALS-related transformations in families' homes, activities, roles and relationships, that trigger (2) distress among families, which, in turn, evokes (3) emotional, psychological, educational and practical support needs. For emotional and practical support, parents and children mainly rely on their own family and social network, whereas they seek educational and psychological support from healthcare professionals. CONCLUSIONS: Our findings imply that ALS care professionals may foster family adjustment to living with ALS, most notably through encouraging parents to engage in a dialogue with their children about the many transformations, struggles and needs imposed by ALS and teaching them how to start the dialogue.

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

INTRODUCTION: Children 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. METHODS: A 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. RESULTS: Young 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. CONCLUSIONS: The 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.

Skill, confidence and support: conceptual elements of a child/youth caregiver training program in amyotrophic lateral sclerosis - the YCare protocol.

Aim: Pilot study of a novel caregiving training and support intervention for children and youth <19 years, who provide care for person living with amyotrophic lateral sclerosis. Materials & methods: Youth (n = 19) between the ages of 8-19 years, participated in skills training and support program (basic care, feeding/communication, assistive devices and social support). Results: Participants reported significant increase in confidence in tasks, including communication systems and respiratory equipment. Participants identified goal setting and creating behaviors to reach those goals. Benefits of training included that the day changed their perceptions of care and meeting 'like' peers. Conclusion: Results of the pilot YCare intervention underscores the need to assess how young caregivers feel and respond to new tasks when receiving support from developmentally similar peers.

US data on children and youth caregivers in amyotrophic lateral sclerosis.

OBJECTIVE: An 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. METHODS: Online 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. RESULTS: Youth 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. CONCLUSION: Youth 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.

"This could be me": exploring the impact of genetic risk for Huntington's disease young caregivers.

Huntington's disease (HD) is a predominantly adult-onset, genetic, neurodegenerative condition. Children of affected individuals have a 50% risk of inheriting HD and often assume caregiving roles for their parent. Studies specifically focused on HD young caregivers have proposed that the genetic risk component of HD "exacerbates" the caregiving experience and identified common responsibilities, burdens, and support needs, but none have explored the relationship between the caregiving role and perception of genetic risk. In an attempt to understand this relationship, we conducted a qualitative study to explore the interaction between a young caregiver's perception of genetic risk, the caregiving experience, and thoughts about and plans for predictive testing. Thirteen individuals between 15 and 25 years who provided care for a parent with HD were recruited from two HD youth groups and local support groups. Interviews were recorded, transcribed, and analyzed thematically. Two themes emerged: (1) caregiving and thoughts about risk and (2) caregiving and perceived opinions towards genetic testing. Our findings suggest that the genetic risk colors the caregiving experience by evoking feelings about the future and a potential diagnosis of HD, in addition to impacting plans for predictive testing. Genetic counselors can use these findings to inform their understanding of caregiver experiences, which can aid them when helping patients explore their motivations for testing during a genetic counseling session. Future studies should explore the extent to which health care providers acknowledge the work of young caregivers in the home and provide support to these individuals.

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS.

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.

Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington's Disease.

Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles ("young carers" or "caregiving youth"). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10-20, who have a parent with Huntington's disease (HD), provided information about their knowledge of the presence of their ill parent's living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent's LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent's wishes, caregiving youths' opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.