Needs Of Caregivers Research Articles

NAMI Family-to-Family Program Focuses on Family Caregiver Needs

National Alliance on Mental Illness (NAMI) Family-to-Family Program now being offered at Ontario Shores in virtual format, including how and where it was designed, its duration, the class topics, and how it helps family caregivers. Participant testimonials are shared in the article as well as how to register for the course for those interested in taking it.

Harsh words

A study on the lasting impact of ‘childhood verbal abuse’ highlights the need for all adult caregivers to be mindful of how they communicate to children, finds Caroline Vollans

"Has Anyone Been There Now?": An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life.

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

Differences in needs and availability of healthcare, education and social protection between school-age children and youth with autistic spectrum disorder and their families in Serbia

Objectives Individuals with autism spectrum disorder (ASD) and their families are often faced with barriers of service accessibility, stigmatization and lack of support. The study aimed to map available support services for youth with ASD and their families in Serbia, as well as to determine whether there are differences during childhood and adolescence/young adulthood. Methods The current study included parents/caregivers of adolescents and young adults with ASD (n = 85). We compared the results from the current study, with those from the previous study done in a sample of parents/caregivers of school-age children with ASD (n = 231). Both studies used The Caregiver Needs Survey. The subjects included in the current study were recruited from the database of the Institute for Mental Health in Belgrade. Results In the period of adolescence/young adulthood, there is a decrease in the use of most support services, while pharmacotherapy becomes the primary treatment modality. A significantly smaller percentage of parents/caregivers receive information via the Internet, which may indicate an improvement in communication between doctors and families in Serbia. Conclusions In Serbia, there have been improvements, but there is still a need for further development of an organized family-oriented approach, early interventions and strength interventions for youth with ASD.

A Study on Psycho Social, Emotional and Spiritual Needs of Caregivers in Home Care Settings

A Study on Psycho Social, Emotional and Spiritual Needs of Caregivers in Home Care Settings

The Impact of Dementia on the Psychosocial Well-Being of Informal Caregivers in Asia: A Scoping Review Comparing High-Income and Low–Middle-Income Countries

The need for informal caregiving has become a crucial topic for researchers and policymakers. This review explores the psychosocial impact on caregivers providing dementia care in high-income and low–middle-income Asian countries. A scoping review was undertaken following the Joanna Briggs Institute (JBI) protocol. A systematic search of four databases (PubMed, ProQuest, Medline, and Medline Complete) was conducted. Articles were screened following the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines. Fourteen articles (11 cross-sectional, 1 longitudinal, 1 case-control, and 1 descriptive phenomenological study) were selected for the final analysis. The most frequently reported findings from low–middle-income countries were dementia caregivers working longer hours and experiencing financial issues, poor physical health, and lower life satisfaction, which progressively and collectively affected caregivers’ psychosocial well-being and quality of life. However, the impact was less significant in high-income Asian countries, particularly those where efforts are being made to identify the burdens associated with caring for people with dementia and providing appropriate support. This review demonstrates clear evidence that caring for people with dementia may affect informal caregivers’ quality of life, particularly in low–middle-income Asian countries. Systematic reviews and meta-analyses may be needed to confirm these findings.

The Perceived Informational Needs of Family Caregivers of Children Hospitalized in a Burn Department: A Cross-sectional Study.

Children are most vulnerable to burn injuries, and their families are their most important source of support. Therefore, it is necessary to identify the information needs of such parents and support them to help children adapt to the new situation, recover to pre-accident conditions, and reintegrate into school and society. This study aimed to investigate the perceived information needs of family caregivers of children admitted to the burn wards of hospitals. This cross-sectional study was conducted on 200 family caregivers of children admitted to the burn ward of a hospital in Tabriz, Iran. Participants were selected through convenience sampling, and the required data were collected by using questionnaires on socio-demographic information, information needs, information resources, and information acquisition methods. The obtained data were analyzed statistically using descriptive statistics (mean, standard deviation, frequency, and percentage) and inferential statistics (Mann-Whitney, Kruskal-Wallis, and Spearman correlation tests). Results indicated that the greatest informational need among family caregivers was related to the child's condition. The treatment team was identified as the most important source of information for them. It was found that information should be provided in a comprehensive and understandable manner, while maintaining honesty and human dignity. The study findings contribute to our understanding of the specific information needs of family caregivers in managing the medical care of children with burns. These findings can serve as a basis for interventions and support services aimed at meeting the needs of these families and improving the quality of care for children with burns.

Assessing the Educational Needs of Family Caregivers of Psychiatric Patients in Jeddah, Saudi Arabia.

Background Family caregivers of psychiatric patients in Saudi Arabia and most of the Eastern world are suffering a big burden as a result of their caregiving role. Aim This study aims to assess the need for psychoeducation for family caregivers of psychiatric patients from outpatient clinics in a psychiatric hospital in Jeddah, Saudi Arabia. Materials and methods A cross-sectional descriptive-analytical study was conducted, which included a total of 379 family caregivers providing care to a patient suffering from a psychiatric illness. Results The majority of family caregivers looking after a patient suffering from a psychiatric illness were a brother or sister (20.8%), followed by a son or daughter (20.6%), and lastly, a spouse (10.3%). The top 10 important educational needs of the caregivers included their desire to know about the daily treatment of the patient, followed by how to improve social relationships, and a need for effective stress management. Family caregivers also showed interest in stress and illness. The caregivers' areas of least concern were about the admission of the patients to psychiatric hospitals, recent research on mental illnesses, and how to deal with weight gain. Conclusion The study showed that caregivers demonstrated a need for more experience in how to care for psychiatric patients. Indeed, this has an interrelated impact on the general well-being of both the patient and the caregiver.The study recommends the need for care guidelines to be provided by hospitals from the patient's education department for caregiving to help the family in their daily care.

Challenges with pediatric antiretroviral therapy administration: Qualitative perspectives from caregivers and HIV providers in Kenya.

Current formulations of pediatric antiretroviral therapy (ART) for children with HIV present significant barriers to adherence, leading to drug resistance, ART ineffectiveness, and preventable child morbidity and mortality. Understanding these challenges and how they contribute to suboptimal adherence is an important step in improving outcomes. This qualitative study describes how regimen-related challenges create barriers to adherence and impact families. We conducted key informant interviews (KIIs) with 30 healthcare providers and 9 focus group discussions (FGDs) with a total of 72 caregivers, across three public hospitals in Siaya and Mombasa Kenya. The KIIs and FGDs were audio recorded, translated, and transcribed verbatim. The transcripts were hand coded based on emergent and a-priori themes. Caregivers discussed major regimen-related challenges to adherence included poor palatability of current formulations, complex preparation, and administration (including measuring, crushing, dissolving, mixing), complex drug storage, and frequent refill appointments and how these regimen-related challenges contributed to individual and intrapersonal barriers to adherence. Caregivers discussed how poor taste led to child anxiety, refusal of medications, and the need for caregivers to use bribes or threats during administration. Complex preparation led to concerns and challenges about maintaining privacy and confidentiality, especially during times of travel. Providers corroborated this patient experience and described how these challenges with administration led to poor infant outcomes, including high viral load and preventable morbidity. Providers discussed how the frequency of refills could range from every 2 weeks to every 3 months, depending on the patient. Caregivers discussed how these refill frequencies interrupted work and school schedules, risked unwanted disclosure to peers, required use of financial resources for travel, and ultimately were a challenge to adherence. These findings highlight the need for improved formulations for pediatric ART to ease the daily burden on caregivers and children to increase adherence, improve child health, and overall quality of life of families.

Metode Pengasuh dalam Pembentukan Karakter Religius Anak Panti Asuhan Aisyiyah Putra

Character Education aim to shape and build thought patterns. Attidute and behavioral of foster children to become positrif individual, good Morals, honest and responsible. Religius character is needed and needed so that foster children have a religius spirit. Religius character needs be formed by getting used religius activities in orphanages. The child's character is closely related to the upbringing received from his caregiver, in other words, good parenting will also have a positive impact on the child and the character of a child is a reflection of the parenting style provide by the caregiver. In order to prevent character deviantion from occurring in children, good caregiver need several methods in farming religius charater children. This reseach aims to analyze the parenting stlye applice by the Aisyiyah Putra Bukittinggi Orphanage in children. This reseach uses qualitative descriptive research which draws from observasi and interviews at the Putra Muhammdiyah Orphane in Bukittinggi. The results of this research show that the Muhammadiyah Putra Bukittinggi. Orpahanage uses the exemplary method, and other methods in inviting people to form worship, education (indriting congration prayers , Providing schedules for congregation prayers and taking tursn in adhan) , Sosial interaction . This method adheres to principles of the Asyiyah Putra Orphanege’s caregiving patters which is based on the Qur’an.

Lived experiences: Growing up with a seriously mentally ill parent.

Individuals with serious mental illness often have persistent and disruptive symptoms. These can profoundly affect their children's lives, exposing them to adverse social and psychological conditions. Such conditions can result in traumatic lived experiences during childhood, which can carry over into adulthood, influencing their self-perceptions and shaping their attitudes toward themselves and society. To gain insights into this phenomenon, this study explored the lived experiences of adults who grew up with a parent with serious mental illness and their perceptions of their lives in adulthood. This study used an interpretive phenomenological design. Participants were invited to voluntarily participate in the study through a call posted on social media. Semi-structured interviews were conducted with 30 adults (age range, 20-55 years) who grew up with a parent with serious mental illness. The interviews were recorded and transcribed, and inductive thematic analysis was used to identify main and overarching themes. The overarching theme of transition from childhood survival to adulthood survival emerged and included four main themes: (1) a traumatic childhood, (2) perceived control, (3) resilience and general self-efficacy, and (4) adult quality of life. A traumatic childhood consisted of experiences of neglect and abuse, while participants used perceived control to achieve personal growth, self-care, and care of others. Resilience and general self-efficacy emerged during the transition to adulthood and helped participants further their social status and strengthen family bonds. Lastly, adult quality of life was described as being disturbed by feelings of loneliness and being burdensome, stemming from an inherent tendency to rely solely on themselves, leading to trust issues and mental health complications. Therefore, these adults found it difficult to reach out and get help or treatment for their concerns, as they initially did not want to appear dysfunctional or in need. This study has illuminated the lived experiences of a specific, vulnerable population that has not been intentionally explored until now. To delve into these experiences, we employed a distinctive qualitative approach, merging the interpretive phenomenological perspective with an inductive thematic analysis. This allowed for rich insight with a relatively large group of participants and enabled an in-depth exploration within this methodological framework. Consequently, this study constitutes a notable contribution to the extant body of knowledge, exploring the intricacies of personal growth and its impact on participants' quality of life. It uncovers the essence of resilience and general self-efficacy, revealing how these elements intertwine with the negative results observed. However, the study findings emphasize the need for healthcare professionals, including nurses and other caregivers, to be mindful of the long-lasting effects of the adverse experiences of children of patients with serious mental illness. Prioritizing active clinical assessment and implementing tailored interventions to address such children's specific needs and difficulties across different developmental stages is imperative. Such comprehensive and targeted approaches are crucial in providing appropriate support and promoting the well-being of these individuals. Enhanced clinical attention in holistic psychiatric care is crucial for individuals and their relatives, especially children. Comprehensive assessments of children and adults raised by seriously mentally ill parents can enable tailored and preventive interventions, positively impacting overall quality of life.

Exploring the Unmet Needs of Primary Caregivers of Autistic Children and Its Implications for Social Work Practice in Ghana

Caring for an autistic child is fraught with various difficulties and may present unmet needs that could affect the overall well‐being of caregivers and children themselves. Consequently, gaining insight into the unmet needs of these caregivers is imperative for the development of targeted and effective interventions to enhance their quality of life and improve their ability to care for their children. Using a descriptive qualitative research design, this study engaged 10 primary caregivers of autistic children in Ghana to understand their unmet needs. Data were collected through in‐depth interviews and thematically analyzed. The analysis revealed the urgent need for financial support for primary caregivers, the availability of more special schools, and the services of trained professionals in the field of autism. Caregivers also called for the intensification of public education to help reorient the perspectives of the general population on the autism condition. Based on the findings, some recommendations for policy and practice were made. The implications of the findings for social work are also discussed.

Resource Needs of Caregivers and Parents as Students in University Settings Resource Needs of Caregivers and Parents as Students in University Settings

Background Currently there are over five million students attending higher education while also providing care for an adult with a disability or other health condition. This number does not include those who care for a family member under 18 or parents. The increasing volume of student caregivers and parents evokes the need for each university to not only understand what resources are needed and the prevalence of these populations but also provide resources for them to succeed. Methods A cross-sectional survey was conducted with university students across a large Mountain West university. This survey aimed to address the impacts of being a caregiver or parent on perceived academic success and resources needed. Results A sample of 1503 students was collected, with 393 (26.1%) of them identifying as a parent or caregiver to someone who was ill during the past three months or taking care of someone under the age of 18. Over 65% of the caregivers and parents reported they worried about their academic success during the semester and that additional resources are needed. Discussion There are many considerations when looking at how to better support parents and caregivers in a university setting. The sample identified a need for financial support, policies around absences, and navigation to resources in the community. There are multiple key programs at universities highlighting navigation programs and there is much room for growth around these types of initiatives. Conclusion Caregivers and parents face many challenges when trying to complete higher education. The findings discussed in this article identify that there are multiple places where institutions may be able to impact the outcomes of these nontraditional students to support their success.

Global Impact of the COVID-19 Pandemic on Caregivers of Older Adults with Alzheimer's Disease: An Integrative Literature Review

Alzheimer's disease is a progressive neurodegenerative disease marked by deterioration of cognition and short-term memory, in addition to neuropsychiatric and behavioral changes, determining the need for caregivers. In view of this, the objective of this study was to globally analyze the impact of social isolation during the COVID-19 pandemic for caregivers of older adults with Alzheimer's disease through integrative literature review. Using the keywords “caregivers”, “Alzheimer's disease” and “COVID-19” and their combinations the search was performed in the Karger, PubMed and SciELO, BIREME, Dynamed, Scopus, Medline Complete and ACS Publication databases. Articles in Portuguese and English that addressed caregivers of older adults with Alzheimer's disease in the context of the COVID-19 pandemic were included, excluding those that did not include the three descriptors and that were not published between 2020 and 2023. From the 12 selected articles, caregivers' emotional disturbances and increased burden were identified during this pandemic period, determining a decline in the caregiver's mental health during the pandemic. Literature findings validate the relationship between the pandemic and the worsening quality of life of caregivers, who, due to physical and emotional overload, presented behavioral disorders such as increased stress, depression and anxiety.

Psychosocial Experiences in an Australian Rural Cancer Service: Mixed-Method Insights into Psychological Distress and Psychosocial Service Barriers

Purpose. To examine psychosocial and well-being concerns throughout the cancer experience, from prediagnosis to survivorship. Whilst most oncology research focuses on patients, the role and experiences of families and caregivers are increasingly recognised as a core component of health service delivery. Moreover, research suggests that geography is an important consideration, with evidence of rural inequities in health service provision and access. Aims. (i) To examine the unique patient and caregiver experiences of rural people in three rural cancer treatment centres in New South Wales (NSW) and (ii) to examine the barriers to rural patients and caregivers accessing psycho-oncological support in NSW. Methods. A convergent parallel mixed-method evaluation of the psychosocial experiences of rural patients and caregivers accessing cancer services through three health services in rural NSW was undertaken (N = 125). Measures of psychological distress as well as quantitative and qualitative barriers data were collected. Results. Approximately, one-third of the participants reported moderate to severe distress. Patients and caregivers reported systemic, intrapersonal, interpersonal, and pandemic-specific barriers in accessing quality psychosocial healthcare. Conclusions. These results suggest that cancer patients and caregivers in rural NSW may experience elevated levels of psychological distress and barriers in accessing psychosocial care. The combination of high psychological need for patients and caregivers with reduced availability of psychosocial support services has substantial implications for psychological wellbeing and service provision. Underdetection of psychosocial need and a lack of support services pose a significant challenge for rural people with cancer and for those who care for them; this must be an urgent priority for quality improvement and equitable healthcare provision.

Assessment of stress in caregivers of acutely hospitalized elderly and its relation to hospital outcomes

BackgroundIt is important to understand and identify the physical and emotional strain among caregivers of the elderly as caregivers may have much more strain and burden than non-caregivers, which subsequently may affect their well-being and the clinical outcome of the elderly they are caring for.MethodsTo assess caregiver stress and its effect on hospital outcomes at the geriatric department in Ain Shams University Hospitals, a cross-sectional study was done that included adults, aged ≥ 60 years, hospitalized for treatment of acute medical conditions and their accompanied caregivers where the patients were subjected to complete comprehensive geriatric assessment while cares givers’ stress was assessed using Caregiver Self-Assessment Questionnaire.ResultsMany elderly were found to need caregivers and the need increased with age as well as multiple comorbidities especially dementia, delirium, and urinary incontinence. Stress prevalence among caregivers is high (85%) and it increases with the age of the patients and the patient having several comorbidities such as cancer, neurological diseases, and sleep problems. Stress was also associated with high mortality of patients.ConclusionAs there is an increase in the elderly population with a subsequent increase in the need for caregivers who suffer from caregiver stress, more studies are needed in the future to highlight this problem and find ways to relieve caregivers’ stress.

A MICRO CAREGIVING INITIATION: LATE-LIFE REMARRIAGE OF OLDER WIDOWED ARAB MUSLIM MEN IN ISRAEL

Abstract New caregiving solutions are increasingly in demand within families undergoing rapid modernization processes such as the Arab Muslim family in Israel. According to patriarchal collectivist values, caregiving for aging men is provided by women within the extended Arab Muslim family. Modernization within the Arab Muslim society has enabled women to acquire higher education and increased employment opportunities outside the household. Therefore, older Arab Muslim widowers in need for caregiving can depend less on their daughters or daughter’s in-law and as such seek other solutions. The aim of this presentation is to describe and examine the caregiving role of late life remarriage for older Arab Muslim widowers. Using a phenomenology framework, semi-structured qualitative interviews for understanding the experience of late life remarriage and its meaning were conducted with 14 Arab Muslim widowers who remarried between age 70 and 80, to never married middle-aged women. Findings describe and illustrate caregiving as a primary motivation for late life remarriage, reasons for caregiving as motivation to remarry and the wife’s role as located between caregiver and spouse. Conclusions discuss the meaning of late life remarriage as a micro caregiving solution, dealing with modernization processes alongside preserving patriarchal collectivist values and gender-based roles.

EFFECTIVE SOLUTIONS FOR CAREGIVERS OF OLDER ADULTS: A RAPID UMBRELLA REVIEW

Abstract The negative health impacts confronting over 35 million informal caregivers of older adults in the U.S. are well documented. Although targeted interventions aimed at informal caregivers have demonstrated efficacy in mitigating poor caregiver outcomes, gaps in the literature regarding cost, scalability, and the impact of policy remain. Such knowledge is essential, given the projected growth in the need for caregiving associated with a rapidly aging population coupled with the shrinking of the caregiving workforce. This rapid umbrella review aims to synthesize findings from systematic reviews of randomized clinical trials of interventions that targeted caregivers and specified caregiver outcomes. The National Institute on Minority Health and Health Disparities research framework guided this review to identify gaps in existing intervention research. Databases from diverse disciplinary perspectives, including PubMed, Scopus, APA PsycINFO, ABIM, ATLA, Sociological Abstracts, PAIS, and EconLit, were searched from 2018 to 2023. A total of 52 systematic reviews that met inclusion criteria and were published in English were included in the final review. Reviews described interventions targeting caregivers of older adults with the following conditions: dementia (30), stroke (4), cancer (4), heart disease (1), renal disease (1), mental illness (1), and mixed-diagnoses (11). Major findings reveal varied effects on caregiver burden, quality of life, and mental health, and the growing integration of telehealth interventions. Studies were commonly limited by heterogeneity of interventions and outcomes and small effect sizes. Future intervention development should consider targeting the specific needs of diverse caregivers and scaling effective interventions to broader caregiver populations.

CONDUCTING A COUNTYWIDE ALZHEIMER’S DISEASE AND RELATED DEMENTIAS CAREGIVER LANDSCAPE ANALYSIS

Abstract In Los Angeles County (LAC), approximately 1 in 5 caregivers provide care to older adults with dementia and cognitive impairment. By 2040, a projected 1.5 million Californians will be living with Alzheimer’s disease and related dementias, foreshadowing an unprecedented need for family caregivers across the state. In 2021, the LAC Department of Public Health launched the Centers for Disease Control and Prevention-funded LA BOLD initiative with the intent of developing a strategic plan to address dementia awareness and care in LAC, including improving local infrastructure for supporting unpaid family caregivers. To support this effort, LA BOLD commissioned the University of Southern California Family Caregiver Support Center to conduct a landscape analysis of the caregiver population in LAC. The analysis used a multi-method approach that included: primary analysis of community-based organization surveys, stakeholder interviews, focus groups with family caregivers, and secondary analyses of California Health Interview Survey and California Caregiver Resource Center System CareNav™ data and an environmental scan of best-practice caregiving models in use in other states. Results informed the development of three functional recommendations specific to LAC caregivers: 1) Leverage existing infrastructure to strengthen and build family caregiver services and supports; 2) Promote health care payer, provider, and system recognition of and support for family caregivers; and 3) Increase respite services for caregivers. This presentation highlights the methods and the findings from the landscape analysis, providing insights into the barriers and opportunities that a growing caregiver population of persons with dementia may pose to LAC.

Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK.

Patients with higher-risk myelodysplastic syndromes (MDS) face considerable challenges in disease management and often require caregiver support. Reports on the burden of caring for patients with advanced cancer suggest that caregivers receive insufficient support. Our research aimed to identify key challenges for caregivers of patients with higher-risk MDS. Online bulletin board is a qualitative research methodology which enables data collection via a web-based platform. A mix of moderator-led discussion guide and interparticipant discussion provides the caregiver insights as online dialogue, which then undergo content analysis to extract key findings. Sixteen caregivers participated from the USA (n = 5), UK (n = 6) and Canada (n = 5). Content analysis identified the caregiver experience in higher-risk MDS as multifactorial, with seven key categories of caregiver burden: caregiver role and burden, mental health, family dynamics, disease experience, treatment experience, healthcare professional (HCP) interactions and information and education. There is significant impact and burden on caregivers of patients with higher-risk MDS, which varies depending on disease stage, choice (or lack of choice) of treatments, and the personal situation of the caregiver. Emotional stress occurs mostly at diagnosis/prognosis stage and when told to 'watch and wait', which is amplified when HCPs are perceived to lack knowledge/expertise about MDS. There is a need for better education about MDS for HCPs, patients, caregivers and the general community; a need for improved communication between patients/caregivers and HCPs; and a high unmet need for better mental health and emotional support for both patient and caregiver.