Experiences Of Caregivers Research Articles

Factors affecting support: experiences of Iranian older spousal caregivers of people with Alzheimer’s disease and their support resources

Objectives Older spouses are a significant part of family caregivers of patients with Alzheimer’s disease (AD) and need support. Evidence suggests that different factors influence the support of older spousal caregivers. However, there is little evidence about these factors in developing countries like Iran. This study aimed to identify the factors affecting the support of Iranian older spousal caregivers of people with AD. Method This qualitative study used Graneheim and Lundman’s conventional content analysis approach. Through purposive sampling, 10 caregivers, three family members, and three professionals were recruited from various cognitive clinics and centers. In-depth and semi-structured interviews were used to collect data and continued until conceptual saturation was achieved. Results Two themes were derived from the data as factors affecting support, which included (1) caregiver’s support-seeking (complexity of the patient’s condition, caregiver’s geriatric health, the burden of caring for a spouse with AD, marital bond quality, caregiver’s support-phobic beliefs, caregiver’s awareness of care) and (2) capacities of support resources (supportive family, supportiveness of society, formal systems’ capability to provide support services). Conclusion The present study provided practical information about the factors influencing the support of older spousal caregivers. Healthcare providers and policymakers can use these concepts to improve the support process by strengthening caregivers’ support-seeking motivation and enhancing capacities in support resources.

AI-Assisted Decision-Making in Long-Term Care: Qualitative Study on Prerequisites for Responsible Innovation.

Although the use of artificial intelligence (AI)-based technologies, such as AI-based decision support systems (AI-DSSs), can help sustain and improve the quality and efficiency of care, their deployment creates ethical and social challenges. In recent years, a growing prevalence of high-level guidelines and frameworks for responsible AI innovation has been observed. However, few studies have specified the responsible embedding of AI-based technologies, such as AI-DSSs, in specific contexts, such as the nursing process in long-term care (LTC) for older adults. Prerequisites for responsible AI-assisted decision-making in nursing practice were explored from the perspectives of nurses and other professional stakeholders in LTC. Semistructured interviews were conducted with 24 care professionals in Dutch LTC, including nurses, care coordinators, data specialists, and care centralists. A total of 2 imaginary scenarios about AI-DSSs were developed beforehand and used to enable participants articulate their expectations regarding the opportunities and risks of AI-assisted decision-making. In addition, 6 high-level principles for responsible AI were used as probing themes to evoke further consideration of the risks associated with using AI-DSSs in LTC. Furthermore, the participants were asked to brainstorm possible strategies and actions in the design, implementation, and use of AI-DSSs to address or mitigate these risks. A thematic analysis was performed to identify the opportunities and risks of AI-assisted decision-making in nursing practice and the associated prerequisites for responsible innovation in this area. The stance of care professionals on the use of AI-DSSs is not a matter of purely positive or negative expectations but rather a nuanced interplay of positive and negative elements that lead to a weighed perception of the prerequisites for responsible AI-assisted decision-making. Both opportunities and risks were identified in relation to the early identification of care needs, guidance in devising care strategies, shared decision-making, and the workload of and work experience of caregivers. To optimally balance the opportunities and risks of AI-assisted decision-making, seven categories of prerequisites for responsible AI-assisted decision-making in nursing practice were identified: (1) regular deliberation on data collection; (2) a balanced proactive nature of AI-DSSs; (3) incremental advancements aligned with trust and experience; (4) customization for all user groups, including clients and caregivers; (5) measures to counteract bias and narrow perspectives; (6) human-centric learning loops; and (7) the routinization of using AI-DSSs. The opportunities of AI-assisted decision-making in nursing practice could turn into drawbacks depending on the specific shaping of the design and deployment of AI-DSSs. Therefore, we recommend considering the responsible use of AI-DSSs as a balancing act. Moreover, considering the interrelatedness of the identified prerequisites, we call for various actors, including developers and users of AI-DSSs, to cohesively address the different factors important to the responsible embedding of AI-DSSs in practice.

Symptom burden and quality of life among patient and family caregiver dyads in advanced cancer.

Symptom management among patients diagnosed with advanced cancer is a high priority in clinical care that often involves the support of a family caregiver. However, limited studies have examined parallel patient and caregiver symptom burden and associations with their own and each other's quality of life (QOL). This study seeks to identify patient and caregiver symptom clusters and investigate associations between identified clusters and demographic, clinical, and psychosocial factors (cognitive appraisals and QOL). This study was a secondary analysis of self-reported baseline survey data collected from a randomized clinical trial of 484 adult advanced cancer patients and their caregivers. Latent class analysis and factor analysis were used to identify symptom clusters. Bivariate statistics tested associations between symptom clusters and demographic, clinical, and psychosocial variables. The most prevalent symptom for patients was energy loss/fatigue and for caregivers, mental distress. Low, moderate, and high symptom burden subgroups were identified at the patient, caregiver, and dyad level. Age, gender, race, income, chronic conditions, cancer type, and treatment type were associated with symptom burden subgroups. Higher symptom burden was associated with more negative appraisals of the cancer and caregiving experience, and poorer QOL (physical, social, emotional, functional, and overall QOL). Dyads whose caregivers had more chronic conditions were more likely to be in the high symptom burden subgroup. Patient and caregiver symptom burden influence their own and each other's QOL. These findings reinforce the need to approach symptom management from a dyadic perspective.

Why do pressure injuries still occur? A multicenter qualitative study of nurses and caregivers

BackgroundThe frequent occurrence of pressure injuries despite their preventability, raises important questions about our understanding of the barriers to care. This study explores the lived experience of nurses and caregivers in Singapore to establish a conceptual framework for better understanding pressure injuries arising in the community. MethodsA multicentre qualitative study was conducted utilising semi-structured interviews and focused group discussions of nurses and caregivers of patients with pressure injuries. Data was collected with a narrative inquiry approach and analysed with grounded theory. An iterative cycle of interviewing, coding, discussion and reflection was conducted until theoretical saturation. ResultsTen inpatient nurses and ten caregivers from the community were recruited. Analysis identified cognitive (awareness and caregiver training), emotional (motivation and empowerment), resource (human and infrastructural), and biomedical factors which collectively impacted the effectiveness of prevention. Additionally, constructs of learning and sustainability of caregiving played a crucial role in long term prevention. LimitationThe derived framework requires further validation with quantitative data and may not be generalizable to other cultural and economic populations. ConclusionMultiple constructs have been identified to have a synergistic effect in prevention. Targeted measures should be implemented by healthcare institutions to better equip caregivers in prevention.

Perceptions and attitudes of Nursing students towards end-of-life care: a Phenomenological Study at a tertiary hospital in Uganda.

Clinical practice is an important part of nursing education as it helps nursing students transition into competent health professionals who can provide quality services. However, research studies convey it as a significant stressor for nursing students when they are obliged to end of life during clinical practice. The perceptions of nursing students on caring for end-of-life care have not been exhaustively studied in the Ugandan context. This study was conducted to understand nursing students' perceptions of end-of-life care during clinical practice at Mulago Hospital. It was a qualitative study with a phenomenology method carried out among 15 nursing students from Makerere University who were assigned to Mulago Hospital for clinical practice. Data was gathered using an in-depth interview guide, audio was captured, and transcriptions were analyzed thematically using Atlas.ti version 6. Three main themes emerged from the data; two themes on perceptions were (i) reactions when nursing students were informed about the physical process of caring for dying patients and (ii) how student ideas about the care changed during the process of caring for end-of-life. The third theme was the attitude of students towards patients when offering end of life care. participants described their reactions as chaotic, devastated and scared about their first-time encounter with caring for dying patients, the physical process also required preparation to handle the situation and understanding, and for positive personal values felt respected, appreciated, trusted and valued when informed about the physical process of caring for the end-of-life. In this study, nursing students held divisive attitudes on care for dying patients. However, nursing students appear to transition from unfavorable impressions of the process and encounter of caring for dying patients to positive perceptions during the actual caregiving experience. Despite their differing perspectives on caring for dying patients, students were typically empathic towards them.

Patient and Caregiver Experience With the Hope and Prognostic Uncertainty of Immunotherapy: A Qualitative Study.

Immunotherapy has improved survival for patients with melanoma and non-small cell lung cancer (NSCLC). Yet, as responses vary widely, immunotherapy also introduces challenges in prognostic communication. In this study, we sought to explore how patients and caregivers learned about the goal of immunotherapy and their experience of living with uncertainty. We conducted a qualitative study of patients with stage III or IV melanoma or stage IV NSCLC within 12 weeks of initiating or 12 months of discontinuing immunotherapy, and their caregivers. We conducted in-depth interviews with participants to explore how they learned about immunotherapy from oncology clinicians and how they experienced uncertainty. We used a framework approach to analyze interview transcripts and synthesized concepts into themes. Forty-two patients and 10 caregivers participated; median age was 67 years and most were male (68%), white (95%), married (61%), and had melanoma (62%). We identified four themes: (1) the oncology team shaped participants' hopeful expectations of immunotherapy, including as a potential cure among those with melanoma; (2) distress related to prognostic uncertainty particularly affected patients who experienced toxicity or progressive disease; (3) patients who did not have long-term responses experienced overwhelming disappointment; and (4) some patients and caregivers had conflicting preferences for prognostic information. Participants provided suggestions to improve education and underscored unmet psychosocial needs. Patients and caregivers held optimistic expectations of immunotherapy, which resulted in heightened disappointment among the subset with progression or toxicity. Clinicians should elicit information preferences of both patients and caregivers, as these may be disparate. Our results highlight the need to optimize prognostic communication and support for living with uncertainty among patients receiving immunotherapy.

Experiences of caregivers of children with autism during the COVID-19 pandemic: A scoping review.

The coronavirus disease 2019 (COVID-19) outbreak has had a profoundly negative impact on people all over the world, particularly those with disabilities such as autism. However, there are gaps in research understanding the impact of COVID-19 on this population and the support required. To explore the evidence available on the impact of the COVID-19 pandemic on caregivers of children with autism. A scoping review methodology using the Arksey and O'Malley framework was employed. Five electronic databases from March 2020 to December 2022 were reviewed. Two thousand two hundred and six articles were retrieved with primary search terms: caregivers (population), autism (diagnosis) and COVID-19 (context). Following the screening of titles, abstracts and articles, 36 articles were included in the final review. Thematic and content qualitative analysis was completed. Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) guided the reporting of the findings. Three main themes were identified: (1) caregiver's mental health and wellbeing, (2) response to remote health care and support and (3) caregiver resilience. The pandemic affected children with autism and their families regarding changes in routine, difficulties with support and emotional states. However, little research has been conducted on the impact in upper-middle-income countries such as South Africa.Contribution:The findings from this review carry practical implications that extend beyond the pandemic, such as political instability or natural disasters that may present similar stressors for children with autism and their families.

"Capable of much more": The effects of vocational training on caregiver expectations for neurodivergent dependents in Thailand.

Neurodivergence encompasses a spectrum of natural variations in neurological development, including autism, ADHD, and other expressions of cognitive diversity. Caregiver experiences while supporting their neurodivergent dependents critically influence the quality of life outcomes for neurodivergent dependents across life stages, including during the search for work. However, research on caregiver experiences during this stage remains scarce, especially within lesser studied developing contexts like Thailand. This study explored perspectives of Thai caregivers preparing neurodivergent dependents for employment through a focus group (n = 10) of pre-vocational training caregivers and interviews (n = 13) with post-training caregivers. Analysis revealed significant sociocultural factors introducing stigma that affected acceptance, diagnosis, interventions, and policy support. Both groups reported systemic barriers, doubts about future independence, and hopes to increase advocacy and inclusive attitudes. However, caregivers whose dependents had received the training showed marked shifts in their expectations for their dependents' success. Tailored vocational preparation helping dependents exhibit strengths may transform societal views on neurodiversity from deficiency to natural diversity and enable more meaningful, sustainable futures. These insights elucidate caregiver challenges and aspirations, which can better inform supportive research and interventions in Thailand and other non-Western locales.

Communicate, support and integrate: strategies to improve engagement with cardiac rehabilitation

Abstract Background Factors beyond Cardiac Rehabilitation (CR) service continue to negatively impact CR attendance and programme completion. Intrapersonal, socioeconomic, health perception/co-morbidity and logistical factors can have a significant impact on CR uptake. During the COVID-19 pandemic many services reconsidered their approach and utilised novel but more flexible delivery solutions (1). As clinical services remodel post-COVID we sought to incorporate the patient perspective. Purpose To identify and co-design strategies to improve engagement with CR. Methods Experience Based Co-Design (EBCD) is a Codesign methodology that incorporates the experiences of patients, caregivers and service providers (2). The project involved staff, patients and caregivers linked to CR across the region. In an iterative process, a literature review followed by focus groups and co-design workshops were conducted by the research team during 2019-2021. Results The co-design workshops identified numerous multifaceted issues in relation to engagement with CR. These can be described in three distinct themes. Communicate Misunderstandings about CR content and efficacy persist amongst patients and the public. Health Care Professionals must streamline, and focus information provided to patients in order to highlight the multifaceted benefits of CR, a patient-led information video for patients and public was produced and shared through CR networks. Support Patients require additional emotional and social support following a cardiac event. Significant concerns described by patients relate to family, work, socialising and future health. A supportive, facilitated discussion was warranted and a brief cardiac intervention (CABIN) was developed and will be tested in a feasibility trial. Integrate Following COVID-19 patients are more receptive to hybrid approaches to delivering CR. Diverse options for delivery of CR should be integrated into standard practice. Patient suggestions included online learning modules, social exercise, video libraries, online support meetings, text chat facilities, and regionally specific webpages. The study resulted in three key outputs; a short regional information video, a regional webpage and the brief supportive intervention, CABIN. Conclusion Co-designing with staff and patients provides relevant and important information about highlighting the importance of and accessing and delivering a service which can be incorporated into future service changes.

Relating caregiver experiences to personalized "push" content in mobile applications among caregivers of pediatric patients with oncology conditions.

With the evolution of data algorithms and personalized push systems in mobile applications, patients who have searched for disease-related information may repeatedly receive similar content on app homepages or through notifications. This study aims to assess the influence of health-related content delivered through mobile applications on the anxiety and depression levels of caregivers of pediatric oncology patients. A survey consisting of 16 questions was conducted among 91 caregivers of pediatric oncology patients at the Children's Hospital affiliated with Chongqing Medical University. The questionnaire was designed by oncologists and the Hospital Anxiety and Depression Scale was used to assess the caregivers' psychological states. The study found that 31.5% of caregivers exhibited borderline anxiety symptoms, while 20.2% displayed borderline depression symptoms. Caregivers who noticed changes in homepage recommendations reported higher levels of anxiety (p=.004) and depression (p=.034). Additionally, 50.6% occasionally felt anxious or uneasy due to personalized notifications and 19.1% frequently felt this way. Moreover, 53.9% of the caregivers reported a negative impact on their emotions or daily life. Personalized push notifications related to disease information in mobile applications can impose a significant psychological burden on patients and their caregivers. Mobile application developers and healthcare providers must strengthen their support in the digital health domain to enhance the emotional well-being of cancer patients and their caregivers.

Palliative Care Coordination Interventions for Caregivers of Community-Dwelling Individuals with Dementia: An Integrative Review.

Alzheimer's disease is a serious illness with a protracted caregiving experience; however, care coordination interventions often lack the inclusion of palliative care. The purpose of this integrative review is to identify and synthesize existing care coordination interventions that include palliative care for individuals with dementia and their caregivers living in community settings. The Whittemore and Knafl framework guided the review, with data analysis guided by the SELFIE framework domains. Study quality was assessed using the Mixed Methods Appraisal Tool, while the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines informed reporting results. Nine care coordination interventions involving family caregivers across eighteen publications were identified. Only a single intervention explicitly mentioned palliative care, while the remaining interventions included traditional palliative care components such as advance care planning, symptom management, and emotional support. Many of the identified interventions lacked theoretical grounding and were studied in non-representative, homogeneous samples. Further research is needed to understand the lived experiences of people with dementia and their caregivers to alleviate care coordination burden.

Effect of a Web-Based Integrative Support Intervention to Improve Family Caregiver Positive Caregiving Experience and Quality of Life: A Randomized Controlled Trial.

Cancer caregivers experience significant stress due to their multifaceted role. Current support methods are limited by unidimensional assessments. The aim of this study was to evaluate a Web-based support system aimed at reducing caregiver stress and anxiety, and improving resilience, vigilance, and quality of life, using both subjective and objective measures. A randomized controlled trial with a single-center, 2-arm parallel design and longitudinal assessment was conducted in Taiwan. Caregivers of patients recently diagnosed with cancer were randomly allocated to either a standard care group or an intervention group that received enhanced nurse-led support. Metrics including psychological resilience, caregiver burden, anxiety, quality of life, stress levels, and vigilance were systematically evaluated on a monthly basis over a period of 5 months, starting from the initial baseline measurement. Following the intervention, participants in the intervention group exhibited statistically significant reductions in caregiver burden and anxiety, alongside a notable improvement in resilience. Objective evaluations revealed a significant reduction in stress levels within this group. However, there were no discernible differences in vigilance and quality of life metrics between the intervention and control groups. The Web-based program effectively reduced caregiver stress and burden, as indicated by multiple metrics. This accessible and efficient Web-based support is beneficial for cancer caregivers facing diverse challenges.

The trajectory of functional status of patients with kidney failure choosing conservative kidney management.

In older patients with kidney failure (KF) starting dialysis, there is a high rate of functional decline. Not much is known about the functional trajectory of patients receiving conservative kidney management (CKM). Therefore, the aim of this study is to assess this functional trajectory and explore clinical parameters associated with functional decline. The functional trajectory of patients choosing CKM was evaluated using data from the Geriatric Assessment in Older Patients Starting Dialysis (GOLD) study, which included patients aged ≥ 65years with KF at the moment of decision-making. Functional status was assessed using a combined score for activities of daily living (ADL) and instrumental activities of daily living (iADL) dependency at baseline and after six months of follow-up. Change in functional status was divided into improvement (gain of one or more domains in functional status), stable (no change), decline (loss of one or more domains in functional status), and death at follow-up. The association between functional status at baseline and functional decline after six months was assessed with chi-squared test or Fisher's exact test. Furthermore, caregiver experiences were explored using self perceived pressure of informal care (SPPIC) at baseline and 6-month follow-up. Follow-up data were available for 86 patients. Mean age was 82 ± 6years and 43% were women. At baseline, 12% of the patients were independent, 55% were mild/moderately dependent, and 34% severely dependent. After 6 months of follow-up, 9% of all patients had improved, 35% remained stable, 41% had declined, and 15% had died. No significant associations were found between baseline characteristics and the composite outcomes. In patients aged ≥ 65years receiving CKM, functional decline and death are highly prevalent. No association was found between poor outcome ("decline/death") and different potential risk factors.

Pluriversal bodies: Researching care through embodied ethnography

AbstractIn this research note, I outline an approach to embodied experiences of care and caregiving in ethnographic scholarship on care. I describe how ethnographers of care and caregiving can use embodied methodologies, particularly through attending also to the cross‐cultural differences in embodied experiences. In this research note, I bring together care research and cross‐cultural embodied ethnography with my own work in Asia Pacific to outline an approach to researching care in the pluriverse – the multiple, overlapping realities of ontology, culture and experience that underpin all our lives. I draw on Annemarie Mol's conceptualisation of the body multiple (2002), Anna Tsing's understanding of awkward engagement (2005), Gibson‐Graham's reading for difference (2020) and Sean Hsiang‐lin Lei's research on hygiene (2014) to consider how researcher bodies might be useful in detecting pluriversal encounters in caregiving.

Caring by default: experiences of caregivers of children with developmental disabilities in Ghana mirrored in the context of the stress process model

BackgroundCaring for a child with developmental disabilities (DD) is associated with significant stress and burden. Caregivers’ experiences are influenced by factors such as poverty, stigma, and the lack of accessibility to services, equipment, and assistive devices. These factors are prevalent in a low-resource setting like Ghana which ultimately influences the experiences of caregivers. The aim of the study was to explore the experiences of caregivers of children with DD in the context of the Stress Process Model.MethodsThe study employed a descriptive phenomenological design Caregivers of children with DD attending the Neurodevelopmental Clinic of a Teaching Hospital were purposively sampled. Data collection involved semi-structured interviews, reaching saturation with 14 participants. The interviews were audio-recorded transcribed verbatim and analysed using thematic analysis.ResultsFour main themes emerged: perception of caregiving, stressors faced by caregivers, negative health outcomes and coping strategies. Perception of caregiving had two sub-themes as stressful nature of caregiving and time-consuming. Six sub-themes were linked to stressors faced by caregivers: the child’s ADL needs, communication barrier, managing challenging behaviour, child’s health needs, unmet educational needs, and economic burden. Negative health outcomes had three sub-themes: decline in physical, mental and social well-being. While some caregivers used maladaptive coping strategies like blaming, others employed adaptive coping strategies like religious coping through prayer, self-encouragement and support from other family members.ConclusionThe study highlights the complex interaction between caregivers’ perception of their caregiving situation, the stressors they experience, their coping resources, and the negative health outcomes associated with caregiving. These findings underscore the need for context-specific caregiver programmes to mitigate the negative impacts of caregiving.

Investigating the Differential Impact of Short- and Long-Term Informal Caregiving on Mental Health Across Adolescence: Data From the Tokyo Teen Cohort

PurposeYoung caregivers experience, on average, poorer mental health outcomes than non–caregiving young people. However, it is unknown to what extent these effects differ with age, or among short-term versus long-term caregivers. Using repeated assessment of young caregiving across multiple waves of a prospective adolescent cohort study, we conducted repeated cross-sectional analyses of caregiver status and contemporaneous depressive symptoms, self-harm, and suicidality in early to middle adolescence. MethodsFour waves of questionnaire data from a large, longitudinal population-based cohort study (Tokyo Teen Cohort) were analyzed. Caregiver status was collected from participants aged 10, 12, 14, and 16 years. Mental health outcomes assessed were depressive symptoms, self-harm and suicidal feelings. Logistic regression analyses were conducted assessing effects of a) young caregiver status and b) new, long-term, and ex-caregiver 2-year categorizations on mental health outcomes at 12, 14, and 16 years, both unadjusted and adjusted for potential confounders (sex, low income, single-parent household, and parental distress). ResultsDepressive symptoms were elevated among long-term caregivers at 14 years (unadjusted odds ratio (uOR): 3.11 [1.33–7.27], adjusted odds ratio (aOR): 2.49 [1.03–5.99]). Borderline associations between long-term caregiving and self-harm (uOR: 3.14 [1.06–9.35], aOR: 2.51 [0.82–7.63]) and suicidal feelings (uOR: 2.49 [0.98–6.34], aOR: 2.06 [0.80–5.33]) were detected at 16 years. No associations were found at age 12 years in primary analyses; sensitivity analyses indicated possible increased depressive symptoms. DiscussionYoung caregivers with long-term caregiving roles are at the greatest risk for negative mental health outcomes, with effects concentrated in later adolescence. These findings highlight urgent need for early identification and practical and psychological support for young people shouldering caregiving burdens.

A qualitative enquiry on the impact of mental illness stigma on caregiving role and experiences in Singapore.

Given that mental illness stigma is a common occurrence amongst people with mental illness and caregivers (CGs) can be a potential victim of stigma themselves, there is a need to examine caregivers' perspective on the phenomenon. This study is part of a larger study which aims to qualitatively examine the concept of mental illness stigma amongst different stakeholders in Singapore. Focus group discussions (FGDs) were conducted amongst 21 informal caregivers to explore the experience of stigma encountered by them and their care recipients, and how it may implicate their caregiving experience. Both inductive and deductive thematic analyses were employed to analyze the data. Three overarching themes of stigma encounters that may have implication on caregiving experience were identified: 1) Stigma within the family; 2) Structural stigma; and 3) Stigma by association. Experience of stigma within family (e.g., social exclusion and lack of understanding) limits the caregiving supports available to CGs. CGs also took up a mediating role between their care recipients and other family who may hold stigmatizing views. Witnessing their care recipients being subjected to structural disadvantages (e.g., employment, school, and mandatory conscription) can induce emotional stresses amongst CGs and motivate them to protest and seek redress on their behalf. Furthermore, encounters of stigma themselves (e.g., being judged or blamed for their loved one's condition) also led to feelings of guilt and self-blame amongst the CGs. These findings can aid the formulation of interventions in informing CGs on what to expect on their caregiving journey and supporting them in dealing with issues relating to stigma and highlight the importance of anti-stigma efforts in organizational settings such as schools, corporations, and government agencies.

Exploring the care coordination experiences of professionals and caregivers of youth with acquired brain injuries in rural areas

Purpose Acquired brain injuries (ABIs) can have devastating effects on children and their families. Families living in rural communities experience unique barriers to receiving and coordinating care for complex medical needs, but little research has examined those barriers for rural youth with ABIs. Materials and Methods This qualitative study explored the experiences of rural adults caring for children with ABIs through interviews with six caregivers, three school staff members, and three medical professionals who had treated at least one child with an ABI. Results Themes in their accounts include difficulty navigating complex situations, support from small communities, isolation and loneliness, the need for more professional education about ABI, and feelings of hope. Barriers to quality care coordination include navigating complex situations, access to transportation, and a lack of communication and education from healthcare agencies. Facilitators of rural care coordination include support from small communities and interagency communication. Conclusions The results support the need for more comprehensive coordination among rural agencies involved in ABI care. Suggestions for care improvement include providing flexibility due to transportation barriers, capitalizing on the benefits of a small and caring community, and providing healthcare and education professionals with more education about ABI interventions.

Using a longitudinal qualitative approach to understand the lived experiences of caregivers of infants with obstructive sleep apnea who require chronic noninvasive respiratory support.

Although positive airway pressure (PAP) is effective for treating obstructive sleep apnea (OSA) in infants, there is a lack of data on caregivers' experiences administering PAP at home. Understanding caregivers' perspectives may change health care professionals approach to PAP initiation. Our study aimed to gain comprehensive insight into caregivers' beliefs, perceptions, and challenges associated with implementing PAP for infants with OSA, considering the transition from inpatient hospitalization to home. In this single-center prospective longitudinal study, caregivers of infants with OSA less than 12 months old who were initiated PAP during inpatient hospitalization underwent two semi-structured interviews over 3 months. The interview data were analyzed using directed content analysis, utilizing the health belief and socioecological models as theoretical frameworks. Data were coded and clustered into themes that reflected the evolving perspectives and experiences of caregivers. Eight caregivers completed semi-structured interviews, revealing three key themes. First, despite initial negative attitudes towards the equipment, caregivers recognized PAP benefits and through self-efficacy and cues to action, were motivated to use PAP at home. Second, caregivers encountered various barriers to adherence; however, caregivers' self-efficacy improved with time and practice. Lastly, interpersonal, organizational, and community support enhanced adherence while lack thereof hindered implementation. Caregivers of infants with OSA understand the importance of PAP therapy. Providing family-centered care and targeted interventions helps caregivers maintain adherence to PAP for infants. By understanding the lived experiences of caregivers, health care professionals can better meet the needs of families and optimize the effectiveness of PAP.

Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.