A Scoping Review of Youth Caregivers: Addressing the Needs of This Growing Population

Generation Z, those who are born in 1997 or thereafter, account for six percent of the estimated 53 million family caregivers in the US – and this percentage is growing, especially given the health impacts of the pandemic. This review focuses on caregiving youth (ages 0-18) and young adult caregivers (ages 18-25) who assist household members who need regular assistance with ADLs and IADLs. This presentation will analyze key trends in the literature of this demographic and identify gaps in research. Our review broadens the knowledge base of how caregiving done by this population impacts brain development, and hence their long term physical, emotional, and mental health. In spite of the significant number of caregiving youth and young adults, current publications on these demographics remain sparse, with most studies being conducted on spousal and adult caregivers. Our group found that the existing literature reviewed the adverse implications on the health and education outcomes for young adult caregivers. This included increased anxiety/depression compared to non-caregivers and for those in post-secondary education, the contribution of caregiving to college incompletion. There are no known studies on this population who have entered the workforce and who also continue their caregiving role. Adequate understanding and characterization of caregiving youth and young adult caregivers will inform better interventions and future policy for them. Support for this demographic, in turn, may improve health outcomes for older adults, who are the majority of those in their care.

The Relationship between Burden and Financial Factors for Help-Seeking Older Adult Caregivers

Older adult caregivers often experience unique financial challenges (Schultz & Eden, 2016). The purpose of the present study was to explore the relationship between caregiver finances and caregiver burden for this sample. A sample of 131 caregivers seeking counseling services completed questionnaires assessing demographics, care recipient functioning (ADLs/IADLs), and finances (yearly income, impact of caregiving on finances). A majority, 74.8% of caregivers, indicated financial burden since caregiving. A hierarchical multiple regression was computed to predict caregiver burden. The caregiving characteristics block explained 8.1% of the total variance in caregiver burden, F(7, 123) = 1.54, n.s. Specifically, being younger was significantly associated with more caregiver burden. Adding the care recipient functioning block explained an additional 6.9% of the variance in caregiver burden, Fchange(2, 121) = 4.93, p < .01. The caregiving characteristics and care recipient functioning model accounted for 15% of the total variance in caregiver burden, F(9, 121) = 1.55, p < .05. Again, younger age uniquely predicted greater caregiver burden. Lastly, caregiving finance factors contributed an additional 13.5% of the variance, Fchange(4, 117) = 5.54, p < .001. Thus, the final caregiver characteristics, care recipient functioning, and caregiving finances model accounted for 28.5% of the total variance in caregiving burden, F(13, 117) = 3.59, p < .001. Specifically, having less income and greater monthly expenses related to caregiving predicted higher levels of caregiver burden. These findings imply that those with fewer resources may benefit from intervention for the heavier burden they perceive compared to peers with more financial resources.

Survey of 275 Patients and Caregivers Affected By Pyruvate Kinase Deficiency: Impact of Communication with Hematologists on Mental Health and Quality of Life

Background. Pyruvate Kinase deficiency (PKD) is a rare congenital hemolytic anemia which affects approximately three people per million individuals worldwide. With no disease-modifying treatments currently available, management tends to focus on supportive symptom control such as blood transfusions. PKD has a profound, wide-ranging impact on quality of life (QoL). Patient advocacy and patient-reported outcomes research has been limited. The PKD Advocacy Advisory Council (AAC), a group of patients, caregivers, patient advocates and physicians, was formed in 2020, by Agios Pharmaceuticals, to improve both timely diagnosis and access to education, support and care for individuals with PKD. Objective. The AAC initiated a survey to explore communication between patients/ caregivers affected by PKD and their hematologists to inform future best practices and improve outcomes. Methods. A web-based, quantitative and qualitative survey was conducted amongst adult patients with PKD, and adult caregivers, with respondents from 11 countries including France, Germany, Italy, Spain, the UK and US. Question types included closed-ended, multiple choice, Likert scale and binary choice plus free text. The survey was carried out according to British Healthcare Business Intelligence Association Legal and Ethical Guidelines, as well as guidelines established by the UK's Market Research Society. Participants were recruited via online panels and via AAC member channels, including PKD Facebook groups. Results : The survey was completed by 200 adult patients with PKD and 75 adult caregivers (n=275). Twenty percent of patients were >50 years of age, 64% were ages 31-50 years and 17% were 18-30 years of age. Half of the patients had been diagnosed for >10 years. Although 82% of patients reported that their hematologist manages PK deficiency "well", the survey revealed gaps in hematologists' understanding. Only 56% of respondents stated their hematologist is able to answer disease management questions and only 44% say their hematologist searches for and finds solutions to optimize disease management. Less than half of respondents, 44%, reported that their hematologists demonstrate a deep knowledge of PKD. The survey revealed an unmet need regarding emotional and psychosocial support with 25% of respondents reporting feeling neither positive nor negative, or somewhat negative, after hematologist interactions and 29% reporting at least one negative emotion following interactions. After meeting with their hematologist, 21% of respondents report feeling worried, 17% anxious, and 17% depressed. Communication with the hematologist was reported to be negative most often among patients who receive 0 transfusions per year. Within this group, only 62% report that their hematologist manages their condition well compared to 82% overall (p=0.003). Only 51% state that their hematologist understands the impact of PK deficiency on their QoL (compared to 83% amongst respondents receiving one or more transfusions per year, p<0.001). Of those who are not transfused, only 44% state their hematologist takes their perspective and experiences into consideration for their disease management plan (compared to 75% amongst respondents receiving one or more transfusions per year, p<0.001). Conclusions PKD is a lifelong chronic disease that significantly impacts QoL of patients and families. The results of this largest ever survey of patients and caregivers with PKD point to a need to adapt clinical approaches to improve outcomes. Hematologists should seek to improve their understanding of the disease and its burden, particularly in non-transfused patients. Care should attend to emotional and psychosocial health aspects. Clinicians should consult with other medical specialists, including hematologists who specialize in PKD, to ensure complications are managed effectively. More research is needed to build on the survey insights, drive further awareness and understanding of the needs of those living with PKD among hematologists, and inform approaches to improve outcomes. The authors would like to acknowledge and thank members of the AAC that made this work possible. Figure 1 Figure 1. Disclosures Grace: Dova: Membership on an entity's Board of Directors or advisory committees, Research Funding; Novartis: Research Funding; Agios: Research Funding; Principia: Membership on an entity's Board of Directors or advisory committees. Barcellini: Novartis: Honoraria; Bioverativ: Membership on an entity's Board of Directors or advisory committees; Agios: Honoraria, Research Funding; Alexion Pharmaceuticals: Honoraria; Incyte: Membership on an entity's Board of Directors or advisory committees.

Urinary incontinence in children aged 5 to 12 in an emergency setting: lessons learned in Ethiopia

This scoping study aimed to be the first to explore the number of children aged 5 to 12 in an emergency setting (Tukaley village, Ethiopia) wetting themselves, and demand for support to manage self-wetting in the home. A survey asked 524 children about their latrine behaviours; and 312 adult caregivers about the latrine behaviours of the children aged 5 to 12 they care for. Few adult caregivers (1 per cent) indicated that children were self-wetting during the day and/or night, and only one child indicated self-wetting (during the day). Yet the survey revealed demand from adult caregivers for household items typically used to manage involuntary self-wetting. This could suggest self-wetting is occurring, but there is a reluctance to disclose it. Given the impact of self-wetting on the lives of children and their adult caregivers, it would be unethical for it not to be considered when developing emergency programmes across sectors including the water, sanitation, and hygiene sector. With further research and modifications to the survey, it could provide greater clarity on the number of children self-wetting and the scale of demand for support to inform emergency programme design.

Serving up mealtime strategies : how families experience dementia in the community

The mealtime experiences for people with dementia and their caregivers living in the community has not been extensively explored. An existing data set provided information on the mealtime strategies used to cope with changing dementia behaviours. A secondary analysis of data from 10 dyads of people with dementia and their caregivers were analyzed. Four categories were identified including: Strategies to facilitate eating; Strategies to promote a sense of self; Stategies to minimize risk; and Strategies to promote caregiver well-being. The dyads used a variety of strategies that were common to all stages of dementia; however by the late stages, the dyads used more specific strategies. In general, the mealtime strategies used by adult caregivers and spousal caregivers did not greatly differ but rather the context in which they engaged in mealtimes did. The results demonstrated that there are opportunities to educate families and professionals about potential mealtime strategies.

Serving up mealtime strategies : how families experience dementia in the community

The mealtime experiences for people with dementia and their caregivers living in the community has not been extensively explored. An existing data set provided information on the mealtime strategies used to cope with changing dementia behaviours. A secondary analysis of data from 10 dyads of people with dementia and their caregivers were analyzed. Four categories were identified including: Strategies to facilitate eating; Strategies to promote a sense of self; Stategies to minimize risk; and Strategies to promote caregiver well-being. The dyads used a variety of strategies that were common to all stages of dementia; however by the late stages, the dyads used more specific strategies. In general, the mealtime strategies used by adult caregivers and spousal caregivers did not greatly differ but rather the context in which they engaged in mealtimes did. The results demonstrated that there are opportunities to educate families and professionals about potential mealtime strategies.