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

Kavanaugh, Melinda S.; Howard, Megan; Banker-Horner, Lori

doi:10.1080/00981389.2017.1378284

Cited by 11 publications

(6 citation statements)

References 20 publications

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“…First, a standardized toolbox is urgently needed. In the absence of national surveys in the US, data collection has focused on identifiable populations, such as young people who care for a family member with a particular illness (Kavanaugh et al, 2018), or geographically specific research and interventions (Assaf et al, 2016). While large quantitative surveys of caregiving youth have been conducted in other countries (Joseph et al, 2019), US‐based research features small samples and is often qualitative or retrospective, which can be biased and limit generalizability (for a review, see Armstrong‐Carter et al, 2019).…”

Section: The Need For Administrative Data On Caregiving Youth To Inform Policymentioning

confidence: 99%

“…This will promote not only the well‐being of caregiving youth, but also the effectiveness of the missions of non‐profit organizations across diverse sectors. Other examples of promising steps in the non‐profit sector include important collaborations between disease‐specific non‐profit associations and researchers, such as resources produced in collaboration with the association for Amyotrophic Lateral Sclerosis (ALS) (Kavanaugh et al, 2018).…”

Section: Policy Recommendationsmentioning

confidence: 99%

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The United States should recognize and support caregiving youth

Armstrong‐Carter

Johnson

Belkowitz

et al. 2021

Social Policy Report

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In the United States, more than 5.4 million children and adolescents under age 18 provide care for family members who are aging or have chronic illness, disability, or other health conditions that require assistance. In this policy report, we describe youth’s care for the family, and highlight the increasing prevalence, global challenges, and uneven successes of measurement and categorization. We briefly summarize research on how caregiving affects youth’s academic, social, and emotional well‐being. Next, we present novel, emerging evidence from the public school‐based 2019 Youth Risk Behavior Survey for the State of Florida, which suggests that as many as 24% of middle school students and 16% of high school students provide at least some care to the family on a regular basis. Drawing on this evidence, we discuss targeted social programs which have been shown to promote the well‐being of caregiving youth outside of the United States, as well as a 13‐year‐old school‐based intervention in The School District of Palm Beach County, Florida. We conclude with specific recommendations for a path toward recognizing and supporting caregiving youth via policy and practice in the United States. Our aim is to increase the awareness and feasibility of identifying and supporting caregiving youth and their families via government‐organized data collection and targeted social policies.

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Section: The Need For Administrative Data On Caregiving Youth To Inform Policymentioning

confidence: 99%

Section: Policy Recommendationsmentioning

confidence: 99%

The United States should recognize and support caregiving youth

Armstrong‐Carter

Johnson

Belkowitz

et al. 2021

Social Policy Report

View full text Add to dashboard Cite

show abstract

“…What can be said with confidence, is that the demographic and Gompertzian hypothesis cannot account for the size and speed of these changes of EAD during this century. Such increased numbers are reflected in the need for a British charity `Young Dementia UK" and the Parkinson's Disease Society developing a `young persons' section, whilst in America there is now a training scheme for young caregivers for family members with amyotrophic lateral sclerosis [24].…”

Section: Discussionmentioning

confidence: 99%

21st Century Early Adult (55-74) Deaths from Brain-Disease-Deaths Compared to All Other Cause Mortality in the Major Western Countries – Exposing a Hidden Epidemic

Pritchard

Hansen

Silk³

et al. 2021

Neurological Research

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Objectives: To examine early adult deaths (EAD) -people aged 55-74 due to brain disease deaths (BDD) compared to all other causes (AOC) in the 21st century in 21 major Western countries (MWC). Method: EAD are below MWCc average life expectancy. All mortality drawn from the latest WHO data. The three global BDD categories consist of mental and behaviour disorder, nervous diseases and Alzheimer and other dementias. Mortality rates per million are analysed for people 55-74 years and total age-standardised death rates (ASDR). BDD rates between 2000-2015 compared against AOC of deaths for EAD and ASDR. Confidence Intervals determine any significant difference AOC and BDD over the period 2000-15, plus an examination of EAD in six separate global mortality categories. Results: EAD: The separate BDD categories for EAD significantly positively correlated, validating their combination as BDD. Every country's AOC 55-74 rates fell substantially, but fourteen country's BDD rose substantially (>20%) and all MWC countries BDD rose significantly more than AOC. ASDR: All nations total AOC fell substantially, whereas seventeen BDD rates rose substantially and every country's BDD significantly increased compared to AOC deaths. Six other EAD mortalities, circulatory, cancer, respiratory, compared to BDD produced Odds Ratios ranging from 1:1.54 to 1:2.36 such were the marked differences over the period. Discussion: Positive news is that AOC are down across all investigated countries in the 21st century. However, the extent of the EAD rises in just 16 years indicates that these BDD conditions are starting earlier suggesting multiple interactive environmental factors impacting upon brain related diseases.

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“…YCare is an intervention that improves the support young caregivers provide. Guided by the tenets of Individual and Family Self-Management Theory, YCare includes modules on basic care, feeding, assistive devices, and caregiver support [ 4 ]. YCare is delivered by a trained multidisciplinary team including physical therapy occupational therapy, respiratory therapy, speech language pathology and social work, and uses a structured teach-back method to instill confidence in carrying out the activities.…”

Section: Introductionmentioning

confidence: 99%

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

2023

Self Cite

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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.

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

Abstract: 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.

Cited by 11 publications

References 20 publications

The United States should recognize and support caregiving youth

The United States should recognize and support caregiving youth

21st Century Early Adult (55-74) Deaths from Brain-Disease-Deaths Compared to All Other Cause Mortality in the Major Western Countries – Exposing a Hidden Epidemic

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

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