Experiences Of Caregivers Research Articles

Experiences of empathy of caregivers caring for persons with dementia: a qualitative systematic review protocol.

The aim of this systematic review will be to explore the experiences of empathy in informal caregivers caring for persons with dementia. Positive caregiving experiences of informal caregivers caring for persons with dementia have many beneficial outcomes, such as improved well-being of both caregivers and care receivers and a higher quality of care for the persons with dementia. Empathy is a factor associated with positive caregiving experiences and is strongly correlated with reduced depression and reduced anxiety in informal caregivers of persons with dementia. Therefore, it is essential to understand the experiences of empathy, especially the caregiver characteristics such as their caring behaviors, relationship with the patient, and cultural beliefs. This review will include studies on the empathy experiences of informal caregivers caring for persons with any type of dementia. It will consider qualitative studies, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, and feminist research. This study will follow the JBI guidance for systematic reviews of qualitative evidence and will use the meta-aggregation approach to synthesise qualitative studies. The search strategy will aim to locate both published and unpublished studies in English, Chinese, and Thai, with no date restrictions. Methodological quality will be evaluated using the standard JBI critical appraisal checklist for qualitative research. The findings will be pooled using the meta-aggregation approach or will be presented in narrative format. PROSPERO CRD42023490472.

Caring through uncertainty: a qualitative exploration of older colorectal cancer caregivers' experiences during palliative chemotherapy.

Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients. Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data. Sixteen caregivers aged 60 to 82years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging. This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes.

African American Family Caregivers' Experiences and Mental Health: A Convergent Mixed-Methods Study.

Caregiving in the African American community is informed by strong cultural expectations but may be associated with negative experiences and poor mental health outcomes. The purpose of this convergent mixed-methods study is to understand the relationship between caregiving experiences and mental health and explore stress management strategies in African American family caregivers of adults with chronic or disabling conditions. African American family caregivers (N = 100) were recruited using community-engaged methods and completed a sociodemographic questionnaire, the Caregiver Reaction Assessment scale, and the Center for Epidemiologic Studies Depression (CES-D-10) Scale. A subsample (n = 24) participated in semi-structured interviews. Data were analyzed using linear regression and content analysis. A matrix was developed to integrate quantitative and qualitative results. Participants were on average 59 years old. Most were women and provided care to a parent. Lack of family support (B = 1.37, P = .03) and impact of caregiving on caregivers' finances (B = 1.74, P = .004), schedule (B = 2.92, P < .001), and health (B = 3.26, P < .001) were associated with depressive symptoms and were reported as stressful experiences. Negative interactions with the care recipient and caring for multiple people emerged as other sources of stress. Participants used independent and interpersonal coping strategies, as well as strategies to facilitate their caregiving role to reduce their stress. Values of reciprocity, limited use of community-based resources, and mental health stigma emerged as important cultural considerations. Our findings suggest the need for culturally-sensitive interventions to improve communication and care coordination within African American family caregiving networks and educational programs about mental health and caregiving resources endorsed by trusted community sources.

NICU Warriors: Engaging and Promoting the Mental Health of Black Fathers

ABSTRACT Although newborn intensive care (NICU) research highlights the mental health and support needs of parents, a majority of the research and interventions focus on the needs of the mother. Engaging and partnering with male caregivers (like female caregivers) in the care of their NICU infants yields positive health outcomes for the infant and better mental health outcomes for the father. Yet there are few articles about male NICU caregiving experiences, and scant articles exploring the mental health and support needs of Black NICU fathers. Utilizing two case studies of Black fathers, this paper will identify their mental health needs. This article will outline and integrate the Recommendation for Psychosocial Support of NICU Families and existing literature to these case studies. Based on their unique needs, NICU providers must do more to engage Black fathers and explore alternative models of care that are culturally aware for psychosocial support.

Behavioral characteristics of toddlers later identified with an autism diagnosis, ADHD symptoms, or combined autism and ADHD symptoms.

Autism commonly co-occurs with attention-deficit/hyperactivity disorder (ADHD), but less is known regarding how ADHD symptoms impact the early presentation of autism. This study examined early behavioral characteristics of a community sample of toddlers later identified with autism diagnosis, ADHD symptoms, combined autism and ADHD symptoms, or neither condition. Participants were 506 toddlers who were part of a longitudinal study of children's behavioral development. Parents completed questionnaires about their children's behavior at two time points. Four groups were identified based on study measures or medical record: autism diagnosis (n = 45), elevated ADHD symptoms (n = 70), autism and ADHD symptoms (n = 30), or neurotypical development (n = 361). Relationships between early parent report of autism- and ADHD-related behaviors, social-emotional and behavioral functioning, and caregiver experience and subsequent group designation were evaluated with adjusted linear regression models controlling for sex. Significant group differences were found in measures of autism-related behaviors, ADHD-related behaviors, externalizing and internalizing behaviors, and parent support needs (p < .0001). Pairwise comparisons indicated toddlers later identified with combined autism diagnosis and ADHD symptoms had higher levels of autism-related behaviors, externalizing and internalizing behaviors, and autism-related parent support needs compared to the other groups. Toddlers with subsequent elevated ADHD symptoms or combined autism diagnosis and ADHD symptoms exhibited similar levels of ADHD-related behaviors, while both groups displayed more ADHD-related behaviors than toddlers subsequently identified with autism or those with neither condition. In this community sample, toddlers for whomcombined autism diagnosis and ADHD symptoms were subsequently identified showed a distinct presentationcharacterized by higher early autism-related behaviors, broader behavioral concerns, and higherparent support needs. Presence of ADHD symptoms (alone or in combination with autism) was associated with higher parent-reported ADHD-related behaviors during toddlerhood. Results indicate that ADHD-related behaviors are manifest by toddlerhood, supporting screening for both autism and ADHD during early childhood.

The longitudinal patterns of depression subtypes and stressors in depression severity in the Canadian longitudinal study on aging (CLSA).

The current study aims to characterize the longitudinal patterns of depression subtypes and investigate the associations among the stability of depression subtypes, COVID-19-related stressors, and depression severity. The study utilized data from the Canadian Longitudinal Study on Aging, which is a national, long-term study of Canadian adults aged 45 and older (n = 12,957). Latent profile analysis was used to identify latent depression subtypes. Latent transition analysis was then applied to assess the stability of these subtypes over time. Hierarchical multivariate linear regression was used to explore the relationships among these identified depression subtypes, COVID-19-related stressors, and depression severity among males and females, respectively. Distinct depression subtypes were identified. Except for atypical depression, other depression subtypes showed greater stability over time. We also found that melancholic depression (B = 9.432) and typical depression (B = 6.677) were strongly associated with depression severity during the pandemic. Health-related stressors (B = 0.840), conflict (B = 3.639), difficulties accessing resources (B = 0.927), separation from family (B = 0.840), and caregiving experience (B = 0.764), were significantly associated with increased depression severity. Sex-specific analyses also revealed differences in the associations between stressors and depression severity between males and females. This study contributes valuable insights into the latent clustering of depression subtypes and their stability. Stressors were associated with increased depression severity, with distinct associations observed among males and females. These findings have implications for targeted early interventions and integrated clinical management strategies by providing the evidence base for tailored mental health care during and after the pandemic.

Understanding practices and support needs of family caregivers of people with dementia in Africa: a scoping review

Caregiving for people with dementia is a growing challenge, particularly in low- and middle-income countries, where 60 per cent of people with dementia globally reside. Yet the experiences and needs of caregivers supporting this population in African regions have not received adequate policy and practice attention. As a first step toward addressing this issue, we aimed to describe key challenges and solutions, and attend to knowledge gaps related to the needs and experiences of caregivers of persons with dementia across Africa. Informed by Arskey and O’Malley’s five-stage framework, we conducted a scoping review of empirical literatures, without year restriction. We included studies focusing on family caregivers supporting people with dementia in Africa. We reviewed five databases and screened titles and abstracts using Rayyan before extracting full texts. Our initial search yielded 3,982 articles, of which 29 met the inclusion criteria. Most of the selected dementia caregiving studies were conducted in South Africa, did not attend to the diverse ethnic beliefs and practices of the region in question and drew their samples from hospitals. While many studies explored caregiver support types, only a few focused on local support systems, like traditional and spiritual healing centres. Some studies addressed stigma and positive aspects of caregiving, offering insights for policy and practice. Future research should broaden regional and ethnic representation, investigate various support networks, such as community elders and healing centres, and examine the impact of local beliefs on stigma and caregiving positivity.

The perceptions and experiences of caregivers of patients with dysphagia: A qualitative meta-synthesis.

To understand the perceptions and experiences of family caregivers of adult patients with dysphagia. Dysphagia is a common symptom and burdens caregivers greatly. There is a growing body of studies concentrating on caregivers and caregiving experiences. However, no qualitative meta-synthesis has been conducted to explore the perceptions and experiences of family caregivers. A qualitative meta-ethnography. A search was conducted for relevant articles in six electronic databases (PubMed, Web of Science, CINAHL, Ovid, Cochrane Library, ProQuest) and two Chinese databases (CNKI, Wanfang Data) from inception to February 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to evaluate study quality. The meta-ethnographic method was used to synthesize data from qualitative studies. The study was reported according to EQUATOR guidelines. Eleven studies were included and three themes emerged: (1) emotion and perception, (2) change and challenge (3) adaption and coping. This review highlighted the challenges and positive coping experienced by caregivers. Findings directly inform the development and implementation of supportive interventions to reduce caregivers' stress and promote adaptive coping. Pay attention to the needs of family caregivers of dysphagia. Family caregivers' perceived severity of dysphagia requires assessment. Caregivers need knowledge, support, and guidance to reduce their burden and fulfill their role.

157 ’Finding Our Tribe’: Parental Experiences Navigating Sport and Physical Activity Opportunities for Neurodivergent Children and Young People

Abstract Purpose Neurodivergent children and young people (CYP) experience higher risk of poor physical and mental health. Many community programmes have been designed to provide young people with a physical activity (PA) outlet to improve health and wellness, however, neurodivergent CYP and their families continue to face stigmatising attitudes and exclusion when trying to access these opportunities. This study aimed to explore the experience of parents and caregivers of neurodivergent CYP, in the United Kingdom (UK), in finding, accessing, and engaging with inclusive community sport and physical activity opportunities and resources for their children. Methods An online qualitative survey explored the experience of parents and caregivers of neurodivergent CYP in the UK in finding and accessing community sport and PA opportunities. One-hundred and twelve parents and caregivers completed the survey from across all 4 devolved nations in the UK. Recruitment of participants occurred through collaboration with parent and advocacy groups for neurodivergent populations, charities providing services to these populations across the UK, as well as through social media platforms. Data collected was interpreted using inductive-thematic analysis, allowing for emergent themes to be identified using a constructivist framework. Results Qualitative data revealed an overarching theme: the ‘Constant Struggle’ parents of neurodivergent CYP face in trying to find, access, and support their children to participate in sport and physical activities. Four main themes emerged under this overarching theme including: 1) An awareness of inequity in the sport and physical opportunities available, 2) A need for flexibility and adaptability, 3) The importance of the coach, and 4) Empowering the parent through inclusion and support. Conclusion Parents and caregivers of neurodivergent CYP express the desire for more equitable provision and delivery of community sport and PA opportunities. It is recognised that there are currently challenges in identifying and accessing appropriate opportunities, however, solutions are offered that will support parents to feel more empowered to engage with sport and PA opportunities. Support/Funding Source Supported by Ulster University and the University of Birmingham.

Living with and Caring for People with Multiple Food Allergies: A Qualitative Study.

The quality of life (QoL) impact of food allergies extends beyond severe allergic reactions, as food avoidance can permeate the daily lives of individuals with food allergies and their caregivers. People with multiple food allergies may experience a greater impact on QoL than people with a single food allergy, but there is limited evidence available. The aim of the study was to provide insight into the lived experiences of adults, teenagers, children, and caregivers of children with multiple food allergies. Semi-structured interviews were conducted of people with multiple food allergies and their caregivers (n = 20) in the United States, including 10 adults, 5 teenagers, and 5 caregivers of children. Patterns in responses were explored using reflexive thematic analysis. Four themes were developed by the researchers to convey the experiences of people with food allergies and QoL impact: preparedness and allergen avoidance results in a loss of spontaneity; emotional impact varies by person and for each person; participating in society involves speaking up and trusting others; and food is more than nutrition. In addition, 3 themes were identified that convey the experiences of caregivers: looking out for your child's safety is an emotional balancing act; limitations on what you can do on your own and as a family; and creating a safe and fulfilling environment can be time-consuming and costly. These findings highlight that people with multiple food allergies experience social limitations, stress about food safety and allergen avoidance, and restrictions on freedom. Caregiver QoL is impacted by the need to navigate social, emotional, and practical implications of caring for a child with multiple food allergies.

Caring for Persons with Alzheimer's Disease during a Pandemic

The population experiencing Alzheimer's disease (AD) and their caregivers have been tremendously impacted by the global COVID-19 pandemic. Outpatient services became less accessible during the pandemic lockdown which caused increased caregiver burden more than usual. Further examination discovered that caregivers were unable to properly take care of themselves because of the need to provide around-the-clock care to loved ones, who pre-pandemic were able to receive supplemental caregiving services. The purpose of this integrative review was to provide a synthesis of information regarding caregiver experiences, during a time of limited resources, such as with the COVID-19 global pandemic. A comprehensive search of the literature databases Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline was completed yielding qualitative and mixed-methods studies. The literature search yielded 14 articles which met the criteria. Three themes emerged during this review. They include: Deprivation of self-care and social connectedness, Fragmented care and resources, and Improved policy development. Multiple gaps in caregiver needs have been identified throughout the literature. Outpatient services, home health aides, and respite care remain necessary elements of care for those with AD and for the relief of the caregiver. Forward planning should include government policies to support caregiving of those with AD, especially in the light of service restrictions or unavailable services.

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC is crucial to improving PC utilization. This study aimed to explore bereaved parent attitudes towards PC in pediatric oncology. This study used data from Alex's Lemonade Stand: My Childhood Cancer Bereavement Survey. The survey included questions regarding bereaved parents' attitudes towards PC. The survey included 72 bereaved families. Parents completed the survey a median of 11 years after their child's death. PC was involved in 71% of cases. These families were more likely to have do not resuscitate (DNR) orders, an advanced care plan, hospice care, a planned death location, and for their child to die outside the hospital. Although most parents (86%) agreed that it is a doctor's obligation to inform all patients with cancer about PC. PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child. Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology.

Perceptions of Children and Caregivers Regarding Asthma and Its Pharmacotherapy: A Qualitative Study.

Asthma, when untreated, may lead to serious implications, especially in the pediatric population. Understanding the perceptions and needs of children and their caregivers may optimize asthma management. This study was aimed to analyze the perceptions of children and their caregivers regarding asthma and its pharmacotherapy. This is a qualitative study using 2 focus groups. We use the Bardin's content analysis. Three researchers made data cross-validation. As for results, the first focus group comprised 7 children who had uncontrolled asthma. The second group comprised 7 caregivers who were the children's mothers. Four categories emerged: living with asthma, impact of asthma, medications, and health care. Asthma and its pharmacotherapy significantly affect the daily activities of children and mothers. Thus, understand feelings and experiences of patients and caregivers, in addition to educational and welcoming interventions for families in asthma management may be carried out by health care professionals to minimize the damage caused by this disease.

Family Caregivers' Experiences of Living with Hemodialysis Patients: A Descriptive Phenomenology.

Several challenges are experienced by caregivers of patients with chronic kidney disease undergoing hemodialysis treatment. These difficulties pertain to the patients, their hemodialysis treatment, and other caregiving responsibilities and concerns. Given the adverse effects of caring for individuals with such conditions on the lives of caregivers, this study aims to investigate the experiences of hemodialysis patients' family caregivers. A qualitative study with a descriptive, phenomenological approach was conducted in the hemodialysis department of a teaching hospital in Birjand, Iran, in 2022. Fourteen participants were selected through purposive sampling. The data were collected through semistructured interviews and analyzed using Colaizzi's method. The participants were caregivers of dialysis patients who had a 6-month history of caring for patients and were first-degree relatives of the patient. A total of 278 initial codes emerged, which were categorized into three overarching themes and eight subthemes based on the research purpose and question. The overarching themes comprised caregiver time and cost strain, social challenges faced by the caregiver, and life challenges faced by the caregiver. Caregivers of patients with chronic kidney disease face problems in multiple dimensions and are susceptible to developing new problems. The majority of caregivers in this study were extremely vulnerable women; if they experience difficulties, the family's foundation will be weakened. Therefore, caregivers should be included in patients' treatment plans. The expression of caregivers' experiences can help solve the problems they are facing and also helps hospital managers and health planners better plan to solve problems.

The experiences of adult children caring for a parent with Korsakoff’s syndrome

Background: Korsakoff’s syndrome (KS) is a debilitating psychoneurological disorder that can occur in adults with alcohol use disorder (AUD). People with KS experience a sudden onset of symptoms including confabulation, anterograde and retrograde amnesias, apathy, issues with vision and gait, and lack of insight. Frequently an adult child of the parent with alcohol-induced KS becomes the caregiver, regardless of the status or quality of the relationship with their parent. While there is a rich literature base in the areas of adult children of parents with AUD and caregiving, there are no studies that have explored the experiences of adult children caring for a parent with alcohol-induced KS. This study aimed to explore the experiences of adult children who provide care for a parent or parental figure suffering from alcohol-induced Korsakoff syndrome (KS). Method: This study used a generic qualitative approach with thematic analysis using both in person and web-based video interview methods and field notes to address this gap in the literature. Eight individuals participated in the study, men (n=2) and women (n=6), with participants ranging in age from 31 to 43 years (average age 37 years). Results: Five themes emerged: addiction and the adult child, experiencing caregiver burden, experiencing a variety of emotions, professional healthcare experiences, and observations of symptoms. These themes emerged over seven anchor events in their caregiving experiences: interactions with their parent pre-diagnosis, parent’s medical emergency, hospitalization, diagnosis, housing, legal, and financial. Conclusion: The results provide a foundation for future research in the areas of KS, caregiving, and adult children of parents with AUD. They also provide a basis to inform the development of interventions with this population and demonstrate a need for more awareness of KS among healthcare professionals.

The electronic artificial urinary sphincter: ongoing innovation of a classic device-a narrative review.

While the modern artificial urinary sphincter (AUS) has benefited from incremental innovation, which has improved both device efficacy and complication rates, the foundational technology in use in Boston Scientific's AMS800 can be traced back to the fundamental hydraulic tenets of the AS721. Research and development in adaptive technology and electronic integration stand to further improve AUS outcomes. The Medline online retrieval system was queried using the MeSH terms "artificial urinary sphincter", "electronic", "complications", "history", and "development" in various combinations. Publications were reviewed if applicable, and their reference lists were used to collect additional articles as needed. Final article inclusion was based on senior author discretion. The AMS800 AUS is the gold standard for male stress incontinence implants. A 2015 consensus conference set out the goals for sphincter device development in the coming decades. A future ideal sphincter would adjust cuff pressure dynamically as well as function with minimal manipulation, or even via electronic control. Multiple new devices are in various states of development. During the next decade, artificial urinary sphincter technology is likely to include multiple Food and Drug Administration (FDA)-approved devices with varying features aimed at satisfying the 2015 consensus conference goal for an "ideal" AUS. The future of stress incontinence therapy lies in both continued innovation for the AUS, as well as advances in regenerative medicine. Electronic and adaptive developments in AUS technology will increase device safety, efficacy, and longevity while improving the user and caregiver experience. For some, regenerative medicine may even make AUS technology obsolete.

A Study on the Experiences of Family Caregivers of Dementia Patients in Utilizing Dementia Management Services

A Study on the Experiences of Family Caregivers of Dementia Patients in Utilizing Dementia Management Services

Caregiving experiences among parents of children with physical and intellectual disabilities: a qualitative systematic review

Introduction: This study aimed to identify caregiver experiences encountered by parents of children with physical and intellectual disabilities. Methods: The study used a systematic review method with the guidelines of Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) and PRISMA 2020. The review focused on parents caring for children with physical and intellectual disabilities. The literature was searched for relevant studies from five electronic databases including PubMed, CINAHL, Web of Science (core collection), Cochrane, and Scopus. This systematic review examined 14 articles out of a total of 63,400 articles found. The study used a thematic analysis method to analyze the study. Results: Providing care for children with physical and intellectual disabilities requires addressing a variety of challenges. It is critical to have a comprehensive understanding of these intricacies to ensure that families receive the necessary support and interventions. Our synthesis identified seven themes: (1) gendered and emotional experiences, (2) compromising quality of life: physical and psychological impact, (3) lack of knowledge about disabilities, (4) lack of social support, (5) stigma, (6) uncertain future of the recipient, and (7) unavoidable caregiving responsibility. Conclusions: The results of this study provide recommendations that health professionals and researchers further explore these challenges and strive to build a supportive and inclusive environment that recognizes the unwavering dedication of parents and prioritizes the optimal care and development of children with disabilities. Keywords: children, disability, parent, qualitative systematic review

‘Trapped With My Children’ fathers’ caregiving experiences during the COVID-19 pandemic

‘Trapped With My Children’ fathers’ caregiving experiences during the COVID-19 pandemic

Exploring Social Support Experiences of Caregivers of Persons Living With Dementia in Hospice Care.

As the number of persons living with dementia (PLWD) enrolling in hospice care rises, caregiver support becomes increasingly crucial. While social support can help buffer caregiver stress, many caregivers report feeling isolated and having unmet needs, highlighting the limited research on this population. This qualitative descriptive study aimed to better understand caregivers' social support during the period when the PLWD is enrolled in hospice care. Analyzing qualitative data from 22 caregivers of PLWD using conventional content analysis, we identified the theme "Variations in Social Connections." This theme encompasses two subthemes: "never completely alone," indicating social support from family, friends, and neighbors, and "disappointed sometimes," reflecting instances when some individuals in the caregivers' lives couldn't provide regular support. These findings underscore the need for individualized interventions, as each caregiver experiences social support uniquely. Future research should consider the variations in social support among caregivers of PLWD to inform caregiving practices effectively.