Experiences Of Caregivers Research Articles

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.

A qualitative study of maternal and paternal parenting knowledge and practices in rural Mozambique

BackgroundProviding nurturing care for young children is essential for promoting early child development (ECD). However, there is limited knowledge about how mothers and fathers across diverse contexts in sub-Saharan Africa care for their children and from whom they receive guidance and support in their caregiving roles. We aimed to examine caregivers’ nurturing care practices and sources of parenting knowledge in rural Mozambique.MethodsThis is a secondary analysis using data from a qualitative evaluation of a pilot intervention to improve nurturing care for early child health and development within existing health systems. The evaluation was conducted across three primary care health facilities and their catchment areas in Nampula province, Mozambique. For this study, we analyzed data from in-depth interviews conducted with 36 caregivers (32 mothers and 4 fathers) to investigate mothers’ and fathers’ daily caregiving experiences. Data were analyzed using thematic content analysis.ResultsCaregivers described various caregiving roles relating to general caregiving of young children (e.g., feeding, bathing, caring for child’s health) and stimulation (e.g., play and communication) activities. Mothers more commonly engaged in general caregiving activities than fathers, whereas both mothers and fathers engaged in stimulation activities. Other family members, including siblings, grandparents, and aunts/uncles, were also actively engaged in general caregiving activities. With respect to sources of parenting knowledge, caregivers received parenting guidance and support primarily from their own mothers/parents and facility-based health providers.ConclusionsThese findings highlight the importance of adopting a holistic approach involving caregivers and their context and reveal potential strategies to promote caregiving and ECD in rural Mozambique and similar contexts.

Understanding Practices and Support Needs of Family Caregivers of People with Dementia in Africa: A Scoping Review Protocol

Extant literature has reported the challenges and stressors caregivers of people with dementia face globally. Local realities and contexts often shape these challenges. For example, in regions of Africa where the prevalence of caregiving is increasing, beliefs about dementia and limited infrastructures create unique challenges for caregivers, potentially restricting caregivers’ capacities. Yet directions for policy, practice, and research are often informed by research conducted in regions outside of Africa or fail to account for local contexts. This scoping review seeks to understand the knowledge base on regional differences and similarities in the experiences of caregivers supporting persons with dementia in the region of Africa. The review will be guided by Arksey and O’Malley’s five-stage- framework. Five databases: Ageline, MEDLINE, Social Science Abstract, Psych-Info, and African-wide information will be searched. Citations from these databases will be subjected to two levels of screening The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) will describe and document the inclusion and exclusion process. This scoping review will improve our understanding of unique practices and pressures experienced by caregivers of persons with dementia in different localities in Africa. It will also identify support needs and knowledge gaps in African region. Keywords: Dementia, Caregivers, Older Adults, Support Needs, Experiences

Experiences of healthcare providers and caregivers regarding health system bottlenecks affecting child healthcare service delivery in a rural district: Empirical qualitative study.

To explore the experiences of nurses and caregivers about the health system bottlenecks to the delivery of child healthcare services in a rural district in Ghana. The study employed a qualitative approach using an exploratory, descriptive design. Collection of data was through semi-structured, face-to-face interviews with 26 participants in the Nkwanta South Municipality, Ghana. Audio recordings of interviews were transcribed verbatim and analysed qualitatively. Inductive codes generated were organised into themes and sub-themes. The main health system bottlenecks that emerged were the poor state of in-patient facilities, inadequate basic logistics and persistent shortage of essential medicines needed for child healthcare delivery. Health system bottlenecks have the tendency to affect the treatment and hospitalisation outcomes of sick children and eventually impact the state of child healthcare negatively. Concerted efforts by government and local authorities to remove these barriers will help to improve child health and child health outcomes. A total of 26 participants comprising nurses and caregivers, agreed and participated in this study. Interviews with these participants were conducts either in the health facilities or in the communities where they live. Their responses contributed significantly to the content of this article.

Experiences of informal caregivers of people with dementia in low- and middle-income countries: a systematic review protocol.

This review aims to synthesize the experiences of informal caregivers of people with dementia in low- and middle-income countries (LMICs). Globally, the burden of dementia is increasing disproportionately in LMICs. Informal caregivers play a vital role and face multiple challenges in LMICs, even though they also often lack the awareness and skills to provide adequate care for people living with dementia. Many LMICs have limited resources and caregivers lack support services. Understanding their experiences and perceptions may improve interventions, helping caregivers to better support those living with dementia. Studies from all settings in LMICs will be considered. Qualitative data from qualitative or mixed methods studies that explore caregivers' experiences and perceptions will be included in this review. Participants are informal caregivers of people diagnosed with dementia at any stage, regardless of age, gender, or their relationship with people living with dementia. This review will follow the JBI methodology for a qualitative systematic reviews, with meta-aggregation as the synthesis method. The review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A 3-step search strategy will be used to locate published and unpublished studies in MEDLINE, CINAHL, Embase, PsycINFO, AgeLine, LILACS, African Index Medicus, ProQuest Dissertations and Theses, Open Dissertations, Web of Science Core Collection, and Google Scholar. There will be no date or language limitations. All studies will be screened against the inclusion criteria and data will be extracted and critically appraised for methodological quality by 2 independent reviewers using JBI tools. Confidence in the final synthesized findings will be assessed using the ConQual approach. PROSPERO CRD42023453814.

Palliative care in dementia.

Dementia is one of the leading causes of death in the US. Approximately, 6 million elderly people in the US had dementia in 2020. Advanced dementia is complicated by multiple problems that can lead to distress in both the patient and their caregivers. With the increase in aging population, physicians will be expected to take care of patients with dementia. Palliative and hospice care can play an important part in helping to alleviate physical symptoms as well as address non-medical/spiritual needs. In this review article, we highlight the patient-centered approach to treat symptoms and patient's needs to improve their quality of life. We discuss the most important and persistent challenges in advanced dementia with the aim to provide excellent care at the end-of-life and caregiver experience. Data were identified by using PubMed, EBSCO, and Google Scholar databases (January 1980 to present) using the following search terms: dementia, palliative care, advanced dementia, and hospice care. The search was repeated using geriatrics, end-of-life, decision making, advanced care, capacity evaluation, nutrition, infections, pain management, dyspnea, delirium, de-prescribing, and spiritual care. Additional review of literature was undertaken using relevant references of identified articles. There are many missed opportunities to improve care in this vulnerable patient population that when addressed can lead to peaceful and dignified death.

Motivators for family carers of persons with dementia in Kenya.

The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

The Polarities of Care for Bipolar Patient

This study explored the experiences of caregivers handling bipolar patients. It utilized the descriptive-phenomenological method of research with 10 participants from the SOCCSKSARGEN region. The findings of the study reveal that the caregivers were 46.8 years old on average, the majority were women. Most participants were parents of the patients. Most have been a caregiver for 10 years or more. The data when thematically analyzed generated eleven (11) clustered themes which, furthermore, categorized into four (4) emergent themes: (1) Navigating the Complexities of Caregiving; (2) The Uphill Battles of Caregiving; (3) The Resilience and Support in Caregiving, and (4) Joys of Caregiving. The responsibilities of the caregivers revolve around providing compassionate care to the patient, ensuring adherence to therapeutic management, recognizing early signs and symptoms to prevent relapse, assuming caregiving roles, and fostering the patient’s independence whenever possible. The challenges experienced by caregivers that affected their lives in some way include the presence of constant stress, financial constraints, and lack of socialization with other people. Furthermore, they did not receive any help from the government. As a coping mechanism, caregivers nurture themselves by pursuing what they love to do like cooking or visiting family members. Moreover, having faith in God, especially praying also helped them to cope with stress. Caregivers also experienced joys in caregiving.

What is in a Day? Investigating the Relationship Between Sleep Quality and Quality of Life Among Caregivers of Children With Autism.

The purpose of this study was to investigate the relationship between sleep quality and quality of life (QOL), or overall level of well-being, in caregivers of children with autism spectrum disorder (ASD) on the daily level. This study utilizes mobile ecological momentary assessment (mEMA) to capture daily experiences of caregivers of children with ASD over a period of 14 days. Utilizing mEMA, this study examines relations between sleep quality and QOL and the role of mood and physical health as mediators on the daily level, specifically for caregivers of children with ASD (n = 51). The data were analyzed using multilevel modeling by MLMed macro. The results suggest that there is a significant positive relation between sleep quality and QOL across individuals. Surprisingly, there was a negative relation between sleep quality and QOL within individuals. The positive relationship between sleep quality and QOL across participants was explained through positive mood across individuals. Furthermore, this relationship also occurred through better physical health across and within individuals. For caregivers of children with ASD, daily positive mood and better physical health explain the relationship between daily sleep quality and QOL. Understanding daily experiences of caregivers of children with ASD may inform interventions and practices aimed at improving sleep and its associated outcomes to ultimately improve caregiver well-being.

Caregiver and Provider Perceptions of Health Disparities in the Neonatal Intensive Care Unit: A Qualitative Study

ObjectiveTo describe the experience of caregivers and their perceptions of disparate care in the neonatal intensive care unit (NICU) and explore interprofessional NICU provider perspectives on potential biases and perceptions of disparate care. MethodsThis qualitative study was conducted in 1 southeastern level IV NICU. Semistructured interviews assessed caregiver and provider perspectives on NICU care. Purposive sampling ensured ≥50% of caregivers self-identified as racial and/or ethnic minorities. Interviews were recorded, transcribed verbatim, and audio verified. A coding scheme was developed, raw data were systematically coded, and emerging themes were identified using thematic analyses. ResultsTwenty-three caregivers and 14 providers were interviewed, including 5 neonatologists, 6 nurses, and 3 residents. Caregivers were predominantly English-speaking (85%); 96% were mothers with a mean age of 32 years. Neonates were predominantly racial and ethnic minorities (62%). Providers were predominantly White (71%) and female (71%). Five themes emerged 1) ineffective, biased communication between caregivers, providers, and health care team may contribute to disparities; 2) language barriers and lack of interpreter access play a significant role in perceived negative care; 3) lack of caregiver involvement and role in decision-making may negatively influence NICU outcomes, especially for those not able to be present at the bedside; and 4) multiple biases may affect neonatal health disparities. ConclusionsOur study highlights the importance of considering both provider and racial and/or ethnic minority caregiver perceptions disparities in NICU care delivery. It adds to the literature as one of the few qualitative studies comparing perceptions of disparate NICU care among both caregivers and providers.