Younger Caregivers Research Articles

Characteristics and Psychosocial Well-being of Caregivers of Veterans with TBI

<h3>Research Objectives</h3> The study has two aims: 1) To investigate the extent to which the veterans' traumatic brain injury (TBI)-related changed behaviors are related to the spouse/partner caregiver's psychosocial well-being in terms of spirituality, family happiness, depression, anxiety, and perceived stress. 2) To investigate caregivers' demographic characteristics and caregiving situations in relationship to their perceptions of their care recipients' post-TBI behaviors. <h3>Design</h3> Secondary cross-sectional survey study. <h3>Setting</h3> Participants were recruited nationally via flyers posted at Veterans Affairs (VA) clinics and on Facebook. Recruitment letters were also sent from a polytrauma outpatient clinic of a midwestern VA hospital. <h3>Participants</h3> Inclusion criteria for members of the parent study were (1) female (2) 18 years or older, and (3) wife or female partner caring for a male veteran diagnosed with a TBI within the past three months to 10 years. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> The psychological spiritual subscale and the family happiness subscale of the Ferrans and Powers Quality of Life Index, Center for Epidemiologic Studies Depressive Symptoms Scale, Beck Anxiety Inventory, Perceived Stress Scale, and Key Behaviors Change Inventory. <h3>Results</h3> Caregivers who reported less changed behaviors in the partners with TBI reported higher levels of psychosocial well-being. Lower psychosocial well-being was associated with the interpersonal difficulties and unawareness of problems behaviors, younger age, and white race. <h3>Conclusions</h3> Younger caregivers who are white may be particularly vulnerable to the emotional and mental health consequences of caregiving. Practitioners should consider the impact of age and race on the experience of TBI-related behaviors in order to develop tailored interventions for these caregivers' psychosocial well-being. Interventions that promote social capital may be particularly meaningful for this population. <h3>Author(s) Disclosures</h3> We have no known conflict of interest to disclose.

Relationships between Caregivers’ Psychosocial Well-being, Caregivers’ Characteristics, and Perceived Changed Behavior of Veterans with TBI

<h3>Research Objectives</h3> (1) To examine the extent to which the caregiver's perception of the changed behaviors (e.g., inattention, impulsivity, interpersonal difficulties, apathy, somatic difficulties, unawareness of problems, communication problems, and emotional adjustment) experienced by veterans with traumatic brain injury (TBI) are related to caregivers' psychosocial well-being (e.g., psychological spirituality, family happiness, depression, anxiety, and perceived stress). (2) To identify the relationships among caregiver characteristics (e.g., age, education level, annual income, employment status, and race), caregiving situation (e.g., length of caregiving), and caregivers' psychosocial well-being. <h3>Design</h3> A cross-sectional survey study. We used descriptive statistics and multiple regression. <h3>Setting</h3> Department of Veterans Affairs (VA), and a polytrauma outpatient clinic of a midwestern VA hospital. <h3>Participants</h3> Forty female spouse/partner caregivers of veterans with TBI volunteered to participate in a national survey. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> The psychological spiritual subscale and the family happiness subscale of the Ferrans and Powers Quality of Life Index, Center for Epidemiologic Studies Depressive Symptoms Scale, Beck Anxiety Inventory, Perceived Stress Scale, and Key Behaviors Change Inventory. <h3>Results</h3> Findings demonstrate that caregivers who reported less changed behaviors in the partners with TBI reported higher levels of psychosocial well-being. Among eight evaluated behaviors changed due to TBI, interpersonal difficulties and unawareness of problems were related to all assessed psychosocial well-being of caregivers. Based on regression results, older age of the caregiver reduced the impact of TBI-related changed behaviors on caregivers' depression, anxiety, and perceived stress, while the self-identified race as White was related to increased anxiety. The effect size of the regression models (R squared) are 19.9% - 45.2%, moderate to large. <h3>Conclusions</h3> More research is needed to examine the associations among caregiver well-being and veterans with TBI-related changed behaviors in order to develop tailored interventions to better support veterans and their family members, especially younger caregivers who may be particularly vulnerable to the emotional and mental health consequences of caregiving. <h3>Author(s) Disclosures</h3> We have no known conflict of interest to disclose.

Multisystemic therapy for families with learning needs: Families’ and therapists’ perspectives

Young people with learning needs are more likely to become involved in anti-social behaviour than young people without learning needs (Emerson et al, 2011). Reasons for this are complex and not well understood, but one contributing factor is that young people with learning needs are unlikely to be recognised and supported in services (Hall, 2000). Lack of recognition and support is also present for parents with learning needs (Emerson, 2011). These families benefit from interventions that include wider systems (Tausendfreund et al, 2016). Multisystemic Therapy (MST) has been shown to be an effective systemic intervention for this group (Butler et al, 2011). An enhancement for young people with Intellectual Disabilities (MST-ID) has recently been developed in the Netherlands (Blankestein et al, 2019), but MST-ID has not been adopted in UK settings. Qualitative grounded theory methodology was used to explore young peoples’, caregivers’, and therapists’ experience of MST where the young person or caregiver has learning needs, to understand the mechanisms and barriers of engagement and change and how they fit with the standard MST theory of change (Hennegeler et al, 2002). Semi-structured interviews were conducted with ten participants: two young people, three caregivers, and five therapists, recruited from MST teams across the UK. Seven theoretical codes were developed from the data: families’ relationship to help, routes to engagement, empowering families, improving family functioning, mobilising the wider ecology, adapting communication, and adapting timings. The mechanisms of engagement and change largely mirrored the existing MST model of change, with extra emphasis required in empowering families, improving family functioning, and mobilising the wider ecology. Adapting communication and timings were found to be unique adjustments for families with learning needs. This study found that these adjustments were successfully implemented in standard MST. Further research would help understand the impact of the enhancements in MST-ID and how this compares with standard MST. This study recommends specialist training for therapists working with people with ID.

Family Caregiver Comorbidities in Lewy Body Dementia Versus Alzheimer Disease and Associated Disorders.

Family caregivers of people living with dementia have high caregiver strain and poor health consequences. Limited research exists on Lewy body dementia (LBD) caregivers and their specific comorbidities. This study aimed to (1) identify the prevalence of self-reported comorbidities among LBD caregivers and (2) contextualize these findings with historical data on caregivers of persons living with Alzheimer disease and associated disorders (ADADs). In a national, online survey, LBD family caregivers completed the Self-Administered Comorbidity Questionnaire and we compared these findings with extant literature on ADAD caregiver comorbidities. Among 217 LBD caregivers, 84.3% were female, 39.1% were 64 years old or younger, and 66.8% had >2 years of caregiving experience. Caregivers self-identified as current (83.9%) or former (16.1%) caregivers. The most frequent comorbidities were hypertension (38.2%), depression (35.0%), back pain (34.1%), and arthritis (27.7%). LBD caregivers, particularly younger caregivers, had a higher prevalence of depression compared with ADAD caregivers and older adult populations, and back pain prevalence nearly equivalent to spinal cord injury caregivers. Our study is the first to illustrate and contextualize specific comorbidities among LBD caregivers. Understanding the causality and impact of these conditions will be critical in designing effective interventions to improve the lives of families affected by LBD.

Depression, anxiety, and psychological distress among caregivers of young children in rural Lesotho: Associations with food insecurity, household death and parenting stress

Good mental health is a critical resource for mothers and caregivers of young children, given the central role of mental health in enabling responsive caregiving. However, fulfilling caregiving responsibilities under challenging circumstances such as extreme poverty, food insecurity, and gender inequality intensifies vulnerability to poor mental health. Previous research focuses on mental health of mothers, while in many LMICs children are cared for by other caregivers, such as grandparents. We examined the prevalence of mental health problems among primary caregivers of young children in rural Lesotho, and investigated factors associated with these mental health problems.We analysed baseline data from a cluster randomised controlled trial, where all caregivers with children between 1 and 5 years old across 34 villages were invited to participate. The analysis included mental health data from 781 caregivers of 998 children. We assessed caregiver mental health using three self-report screening instruments. Univariate and multivariate regression modelling tested associations between caregiver, child and household variables and (1) depression symptoms (PHQ-9), (2) anxiety symptoms (GAD-7), (3) psychological distress (SRQ-20), (4) suicidal ideation and (5) help-seeking for mental health.This study reported a high prevalence of symptoms of psychological distress (46.2%), depression (25.7%), anxiety (17.1%) and suicidal ideation (27.5%) among caregivers. Greater prevalence was associated with food insecurity, parenting stress or recent death in the family/household. Older caregivers reported higher rates of psychological distress and depression, while younger caregivers reported higher rates of anxiety. Suicidal ideation was associated with greater food insecurity and parenting stress, and lower caregiver education.Our findings support the need to address intersecting public health issues to improve conditions for caregivers in these settings. Targeting modifiable risk factors such as food insecurity among individuals within a society who carry disproportionate burdens of caregiving should be prioritised, especially in contexts of scarcity, where mental health is not prioritised.

Social isolation and health among family caregivers of older adults: Less community participation may indicate poor self-reported health.

Social isolation is associated with adverse health outcomes in the general older adult population, but little is known about indicators of social isolation in family caregiver populations. This cross-sectional study examined the prevalence of social isolation in the 2015 National Survey of Caregiving. Using the Convoy Model of social relations, a life-course social support framework, we also examined associations between social isolation and caregiver self-reported health. Using multiple ordinal logistic regression models, we examined social isolation - operationalised with a five-item summative measure and, alternatively, with each social isolation item - as a predictor of self-reported general health status. On the dichotomised summative measure, 24.74% (n=2,175) were more isolated. Younger caregivers were more isolated (M=56.77 years, SE=0.76) compared with those who were not (M=60.86 years, SE=0.41). Self-reported general health was as follows: 4.93% poor; 15.67% fair; 25.62% good; 34.81% very good and 18.97% excellent. Less social isolation was associated with higher odds of better self-reported health (Adjusted odds ratio [AOR]=1.19; CI=1.05-1.35). Of the individual social isolation indicators, only a lack of community participation was associated with higher odds of worse self-reported health (AOR =1.57; CI=1.25-1.97). Social isolation and particularly community participation were associated with caregiver health status. It may be necessary for healthcare providers to consider these factors in caregiver health assessments. Future research is recommended to understand the consequences of various social isolation indicators in diverse samples including younger caregivers.

Caregivers' Perception about the Relationship between Oral Health and Overall Health in Individuals with Disability in Qatif, Saudi Arabia: A Cross-Sectional Study.

Background In Saudi Arabia, there are many people with disabilities that do not receive adequate healthcare, especially in the field of dentistry. Objective This study focused on assessing caregivers' perception of the relationship between oral healthcare and the overall health status of individuals with special healthcare needs (SHCN) in Qatif, Saudi Arabia. Methodology Design. This cross-sectional study was conducted using a questionnaire that was divided into two sections. The first part included demographic information such as the age and gender of both the caregiver and the person with a disability and the type of disability. The second part investigated the systemic health of the individual with a disability and the caregivers' perception of the relationship between the management and treatment of systemic health and oral healthcare in relation to the overall health status. The results of descriptive analyses were summarized using frequency distribution tables. Bivariate analyses (chi-square test) were also performed. Significant differences were considered at a p value of 0.05. Setting. Initiated in school setting. Results A total of 186 caregivers participated in the study. As much as 83.3% agree that oral health affects overall health, and 48.9% agreed that untreated dental problems could affect cardiac health. Age was the only factor found to be significantly associated with caregiver perception as younger caregivers were more likely to rightly understand the relationship between oral health and general health (p < 0.05). Conclusion This study has shown the extent to which caregivers of individuals with special care needs to understand the role of oral health in the general health of an individual. Three-quarters of the caregivers agree that dental health affects overall health, and age is a factor that might influence this understanding.

52.1 Therapist Self-Disclosure With Young Children and Caregivers

The goal of this session is to educate participants on the topic of therapist self-disclosure (TSD) with young children and their caregivers. The various ways in which TSD occurs and the important developmental considerations informing TSD decision making will be discussed. Clinical material will highlight different ways in which therapists self-disclose with young children and caregivers and the potential impact on clinical care.

Magnitude and associated factors of anti-retroviral therapy adherence among children attending HIV care and treatment clinics in Dar es Salaam, Tanzania.

The HIV pandemic continues to contribute significantly towards childhood mortality and morbidity. The up-scaling of the Anti-retroviral therapy (ART) access has seen more children surviving and sanctions great effort be made on ensuring adherence. Adherence is a dynamic process that changes over time and is determined by variable factors. This necessitates the urgency to conduct studies to determine the potential factors affecting adherence in our setting and therefore achieve the 90-90-90 goal of sustainable viral suppression. To assess the magnitude and associated factors of ART adherence among children (1-14 years) attending HIV care and treatment clinics during the months of July to November 2018 in Dar es Salaam. A cross-sectional clinic-based study, conducted in three selected HIV care and treatment clinics in urban Dar es Salaam; Muhimbili National Hospital (MNH), Temeke Regional Referral Hospital (TRRH), Infectious Disease Centre- DarDar Paediatric Program (IDC-DPP) HIV clinics during the months of July to November 2018. HIV-infected children aged 1-14 years who had been on treatment for at least six months were consecutively enrolled until the sample size was achieved. A structured questionnaire was used for data collection. Four-day self-report, one-month self-recall report and missed clinic appointments were used to assess adherence. Frequencies and percentages were used to describe categorical data. The odds ratio was used to analyse the possible factors affecting ART adherence Logistic regression models were used to determine the factors associated with ART adherence. Analysis was conducted using SPSS version 20.0 and p-value <0.05 were considered statistically significant. 333 participants were recruited. The overall good adherence (≥95%) was approximated to be 60% (CI-54.3-65.1) when subjected to all three measures. On multivariable logistic regression, factors associated with higher odds of poor adherence were found to be caregivers aged 17-25 years [AOR = 3.5, 95%CI-(1.5-8.4)], children having an inter-current illness [AOR = 10.8, 95%CI-(2.3-50.4)], disbelief in ART effectiveness [AOR = 5.495; 95%CI-(1.669-18.182)] and advanced clinical stage [AOR = 1.972; 95% CI-(1.119-3.484)]. The major reasons reported by caregivers for missing medications included forgetfulness (41%), high pill burden (21%), busy schedule (11%) and long waiting hours at the clinic (9%). In the urban setting of Dar es Salaam, ART adherence among children was found to be relatively low when combined adherence measures were used. Factors associated with poor ART adherence found were younger aged caregivers, and child intercurrent illness, while factors conferring good adherence were belief in ART effectiveness and lower HIV clinical stage. More attention and support should be given to younger aged caregivers, children with concomitant illness and advanced HIV clinical stages. Educating caregivers on ART effectiveness may also aid in improving adherence.

Evaluating the implementation of Cradle to Kinder: An intensive home-visitation support program for families experiencing disadvantage

BackgroundThe Australian evidence supporting the effectiveness of home visitation programs for families experiencing disdavantage is mixed. These inconsistent findings could be attributed to the varied ways in which home visitation programs are implemented, and a lack of evaluation. ObjectiveThis qualitative paper explores the barriers and facilitators to the implementation of Cradle to Kinder - a long-term, intensive, home visitation family support program for vulnerable young caregivers at risk of child removal across Victoria, Australia. MethodSemi-structured interviews and focus groups were conducted with 37 stakeholders from all levels of intervention delivery (i.e., clients, internal staff, external stakeholders). Data collection and thematic analysis were informed by the Consolidated Framework for Implementation Research (CFIR). ResultsAccording to stakeholders, four key CFIR constructs facilitated the implementation of Cradle to Kinder: Effective Engagement, Relative Advantage, Organisational Culture, and Learning Climate. Implementation was challenged by factors within the Peer Pressure construct, which involved managing expectations and push-back from external organisations and services. ConclusionThe current findings highlight the importance of organisational commitment to successful implementation. The next phase of this research is to establish the effectiveness of Cradle to Kinder. Indeed, greater implementation-effectiveness evaluations of family support programs are required to ensure that such programs effectively meet the needs of families and improve their outcomes.

Bias reported by family caregivers in support received when assisting patients with cancer-related decision-making.

Family caregivers play an increasing role in cancer treatment decision-making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. Analysis of 2021 national survey data of family caregivers of patients with cancer (N=2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer-related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check-all-that-apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi-square and regression analyses assessed associations between bias and caregiver distress (GAD-2, PHQ-2). Of 2703 caregiver respondents, 47.4% (n=1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer-related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non-conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD-2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6-2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4-5.3) compared to none. Similar results were found for high depression scores (PHQ-2 scores ≥ 3). Nearly half of caregivers involved in their care recipients' cancer-related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress.

Feasibility of telepsychology support for patients with advanced cardiorespiratory diseases and their caregivers.

ObjectiveThe aim of this study was to test the feasibility of telepsychology support for patients with severe cardiorespiratory disease and their caregivers. A secondary objective was to explore pre-post relationships between patients' and caregivers' clinical measures.MethodsA telehealth program incorporating telepsychology support, i.e., an “on-demand” phone service with a psychologist, was provided to consecutive cardiorespiratory patients at discharge from inpatient rehabilitation and to their caregivers. At the start and end of the 1-year program, participants were interviewed “face-to-face,” and their anxiety/depression level, patients' quality of life (MRF-28, SF-36, and MQOL), and caregivers' (n = 18) family strain (FSQ) and needs (CNA) were assessed: we analyzed the correlations and evaluated customer satisfaction.ResultsOf 80 eligible individuals, 40 took part in this study: 22 patients (FVC = 39 ± 14%; EF = 39 ± 13%) and 18 caregivers. Eleven (28%, 6 patients and 5 caregivers) requested tele-psychological support, resulting in 51 consultations focused on anxiety, difficulty in patient management, worry about the patient's emotional state, and need for emotional support; 3 participants underwent a tailored psychotherapy program. All participants expressed high satisfaction with the service. At enrolment, anxiety was less evident in patients (73% men) than in caregivers, while depressive symptoms were more evident (6.5 ± 3.1), and correlated with MRF-28 and MQOL. Caregivers' (94% women) FSQ showed a “strongly recommended” need for support; at enrolment, high levels of anxiety/depression were correlated with high FSQ (for both, p < 0.05); depressive symptoms correlated negatively with age (p = 0.025) and positively with emotional needs (p = 0.025); anxiety was positively correlated with education level (p = 0.048). At follow-up, patients' perception of support (n = 13/22) tended to increase (p = 0.089), while caregivers' strain (n = 10/18) tended to decline (to within the “range of attention”). At enrolment, caregivers' anxiety/depression and strain correlated with patients' quality of life (for both; p < 0.05). At follow-up, caregivers' strain correlated with patients' quality of life (p = 0.028) and cognitive performance (p = 0.048).ConclusionTelepsychology support associated with a telehealth service is feasible and satisfying for both participants and psychological management. A suitable support program can benefit both patients and caregivers, particularly those at higher risk of depressive symptoms (younger caregivers) and anxiety (all caregivers).

Two sides of the same coin? Revisiting the relationship between burden and positive aspects of caregiving in dementia.

Studies have shown that items on the Zarit Burden Interview (ZBI) purported to measure self-criticism do not correlate well with the other items. Examination of item content suggests they may be measuring mixed sentiments-both positive and negative-about caregiving. This study examined whether self-criticism is related to positive aspects of caregiving (PAC) in a way that is different from caregiver strain, and if so, which types of PAC. The baseline data of two Alzheimer caregiver intervention studies were merged (N=225). Based on previous factor analysis, 2 ZBI items formed the self-criticism measure while 16 ZBI items measured global strain. PAC was assessed by coding caregivers' narratives about positive gains into seven themes (relationship gains, growth, insights, competence/mastery, purpose, emotional rewards, and miscellaneous). Global strain was mildly associated with fewer total PAC, in a way consistent with the literature, and with less competence/mastery. However, self-criticism was associated with stronger relationship gains and purpose. Younger caregivers reported more relationship gains but less emotional rewards. Longer caregiving duration was associated with more growth, but the reverse was true for chronic illnesses. Additionally, relationship closeness was associated with more emotional rewards, whereas care-recipient neuropsychiatric symptoms and functional impairment were associated with fewer relationship gains and emotional rewards respectively. Thinking one is not doing enough may indicate feelings of inadequacy/guilt but may also signal devotion to the relative and a sense of purpose in the caregiving role. Analyzing total burden and PAC scores may obscure the relationships between their components.

Policies and Resources Identified by Youth as Being Important to Prepare for Caregiving Responsibilities.

Youth are increasingly upholding significant caregiving responsibilities. These caregiving responsibilities can have emotional, educational, and professional impacts on youth and young adults. And yet, policies and resources focus on adult caregivers and are limited in supporting young caregivers. The purpose of this study was to describe the different types of support that youth identify as being important to prepare to take care of an adult relative. We conducted an open-ended, text-message based poll of youth ages 14 to 24 in August 2020. We conducted a content analysis to categorize and describe the different types of support respondents identified in their responses. We compared types of support identified by age-group, gender identity, and prior caregiving experience. Most respondents (42.2%) identified education (eg, skills training) as being an important resource. Other types of support reported included financial support (eg, assistive programs), workplace policies (eg, paid leave), mental health support, and professional support. Policy makers should extend existing policies (eg, Family and Medical Leave Act) to include and consider the circumstances of youth and young adults. Policies enabling young caregivers to actively participate in their adult relative's health care visits could be critical to preparing youth for the skills required and the physical and emotional demands associated with caregiving. Coordinated efforts between health and education systems could support youth in learning information about caregiving, medical decision making, and medical tasks.

Management of dental traumatic injuries in primary and young permanent teeth

Dental traumatic injury is very common in children and adolescent, with the prevalence of 22.7% in primaryteeth and 18.1% in 12-year-old children. It compromises esthetics and function, and can affect negatively on oral health-related quality of life in growing children and adolescent. Efforts should be made to restore normalcondition and to minimize the psychological impacts of young patients and caregivers while treating dentaltrauma in emergency situations. Possible damage of permanent successors needs to be considered in primary dentition. For immature permanent teeth, it is necessary to make an effort to preserve the pulp vitality so thatcontinuous root development can take place.

“I need to be alert at night to provide care”: Factors associated with problematic sleep among young Australian caregivers

ABSTRACT Objectives There is increased recognition that young people (<25 years) may occupy a carer role for family or others with health conditions or disability. This is often in addition to study and social activities. This means competing demands on time, and insufficient sleep. Our aim was to determine the contribution of caring duties to problematic sleep in young carers. Methods A survey of Australian carers was conducted, including questions on demographics, characteristics of the carer and care recipient, and sleep quality and quantity. Participants were eligible if they reported sleep time <7 hr or dissatisfaction with their sleep, and were aged 15–24 years. Results A total of 110 participants (71.8%_female = 79, 15–17 years = 62, 18–24 years = 48) were included in analysis; 55.5% (n= 61) reporting dissatisfaction with their sleep and 62.7% (n= 69) reporting typically less than 7 hr sleep per night. Sleep duration was significantly shorter for those who reported 1–2 or ≥3 awakenings to provide care, compared with no awakenings (p_< .05). Sleep quality, as described by scores on the Pittsburgh Sleep Quality Index (PSQI) was also significantly worse for those who were frequently awoken by their care recipient (p < .05). Worrying about the care recipient, being woken by the care recipient, and listening out for the care recipient were the most frequently identified factors impacting on sleep. Conclusion Young carers experience reduced sleep duration and poor sleep quality. Strategies to alleviate the burden of care work on young carer’s sleep would benefit the health and safety of this group.

Aging Flower

Drawing on my lived experiences with caregiving for my aging grandma, the following short story explores what day-to-day life looks and feels like for youth in caregiving roles. Evoking bitter-sweet emotions, my words familiarize readers with the reality many young caregivers face. Stereotypical ideologies regarding caregiving for elders primarily focus on the physical aspects of providing care, and while I engage these aspects, such as managing my grandma’s medication, I also emphasize the emotional burden that both aging elders and young caregivers face, highlighting the importance of establishing a healthy routine in which both parties have their needs met. Further, I not only examine the hardships of being a young caregiver, but the positivity and joy I try to find from my responsibilities. I subtly bring attention to small details when describing the relationship between my grandmother and me. The simplicity and sweetness in our bond, fills my life with wholeness in a way that makes caregiving meaningful. Even though caregiving as a young adult brings with it many challenges, especially when managing the twists and turns of life, I have found there is always light within the darkness, beauty within the aging flower.

"The pediatric dentist is different": A qualitative study of young children's caregivers' experiences of oral health care in the Galapagos Islands.

Little is known about factors influencing children's access to and use of oral healthcare services in the Galapagos Islands, a resource-limited setting. We sought to understand caregivers' experiences and factors influencing their children's use of dental services on San Cristobal Island in the Galapagos Archipelago. A community-based qualitative interview study was carried out among 25 caregivers of children aged 6months to 10 years. Participants were recruited via a random walk door-to-door approach in 10 neighborhoods, and interviews were conducted by a trained research assistant who is native of the Galapagos Islands. We employed a grounded theory-based qualitative data analysis based on inductive coding to identify and report major emerging themes and illustrative participant quotes. Two major themes emerged related to children's oral health care. Participants expressed their preference for care provided by paediatric versus general dentists and recognized the important role of school-based dental care programs, acknowledging their strengths and weaknesses. Participants' lived experiences were informative and helped improve our understanding of factors influencing children's use of dental services in the Galapagos Islands. Above and beyond their local relevance, these themes and insights are likely applicable to other global communities that experience similar barriers of access to oral healthcare services.

Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries

Background: The Children’s Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. Aim: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. Design: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. Results: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. Conclusion: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.

Use of scheduled and unscheduled health services by cancer survivors and their caregivers.

The purpose was to determine predictors of scheduled and unscheduled health services use by cancer survivors undergoing treatment and their informal caregivers. English- or Spanish-speaking adult cancer survivors undergoing chemotherapy or targeted therapy for a solid tumor cancer identified a caregiver (N = 380 dyads). Health services use over 2months was self-reported by survivors and caregivers. Logistic regression models were used to relate the likelihood of service use (hospitalizations, emergency department [ED] or urgent care visits, primary care, specialty care) to social determinants of health (age, sex, ethnicity, level of education, availability of health insurance), and number of comorbid conditions. Co-habitation with the other member of the dyad and other member's health services use were considered as additional explanatory variables. Number of comorbid conditions was predictive of the likelihood of scheduled health services use, both primary care and specialty care among caregivers, and primary care among survivors. Greater probability of specialty care use was associated with a higher level of education among survivors. Younger age and availability of health insurance were associated with greater unscheduled health services use (hospitalizations among survivors and urgent care or ED visits among caregivers). Unscheduled health services use of one member of the dyad was predictive of use by the other. These findings inform efforts to optimize health care use by encouraging greater use of scheduled and less use of unscheduled health services. These educational efforts need to be directed especially at younger survivors and caregivers.