Caregiver Health Research Articles

"My Goal is…to get Through the Day Without Pain": A Qualitative Study on Chronic Pain Experiences and Treatment Needs Among Child Caregiving Women.

We aimed to understand connections between pain, caregiving, physical and behavioral health treatment needs, and motivations for prescription opioid use among child caregiving women with chronic pain. We conducted in-depth, semi-structured interviews with 12 women (average age 48 years; 58% Black) in child caregiving roles, including women who were pregnant or trying to become pregnant and were caring for children or grandchildren < 18 years, and who received treatment at an outpatient pain management clinic. We used thematic text analysis to identify qualitative themes related to caregiving, pain, treatment, substance use, coping strategies, and sources of support. A diverse sample of women reported high levels of stress and pain, substance use, interpersonal violence, depression, and financial strain. Most described difficulties at work, interacting with children or grandchildren, and engaging routine, daily activities due to their pain. Most indicated that they spent less time with family and friends due to their pain and had limited sources of support to help them navigate both caregiving and pain. Many described barriers to receiving appropriate healthcare, including prescription opioids, due to stigma or logistics, though most also reported positive healthcare experiences. Women also reported added daily-life, physical, mental health, and interpersonal stressors and difficulty navigating the healthcare system to receive needed care. For women with chronic pain in child caregiver roles, results highlight the importance of care tailored to the physical needs of child caregiving and of trauma-informed approaches given the prevalence of comorbid conditions and trauma.

L’avenir d’une illusion humaniste mobilisatrice : le soin psychique

A society where desolation and delirium reigns attacks first and foremost the human and social sciences, and runs the risk of breaking the bonds of intersubjectivity and solidarity. The renunciation of the latter is at the root of the collective loss of meaning and the return of fear of madness. Mental health caregivers feel the impact of this new world and, seized by the urgency of the situation, act in the present rather than looking to the future, taking history into account, medicalizing and then subjecting human problems of life and death to psychiatric analysis and treatment. The rationalization of diagnostic and therapeutic approaches dictated more by today's economism, which is not a human and social science but an ideology, threatens to sweep away the achievements of institutional child psychiatry, and the indispensable ethic of inter-human encounter that lies at the heart of care.

Exploring Pathways to Caregiver Health: The Roles of Caregiver Burden, Familism, and Ethnicity.

This study examines the associations of ethnicity, caregiver burden, familism, and physical and mental health among Mexican Americans (MAs) and non-Hispanic Whites (NHWs). We recruited adults 65+ years with possible cognitive impairment (using the Montreal Cognitive Assessment score<26), and their caregivers living in Nueces County, Texas. We used weighted path analysis to test effects of ethnicity, familism, and caregiver burden on caregiver's mental and physical health. 516 caregivers and care-receivers participated. MA caregivers were younger, more likely female, and less educated compared to NHWs. Increased caregiver burden was associated with worse mental (B = -0.53; p < .001) and physical health (B = -0.15; p = .002). Familism was associated with lower burden (B = -0.14; p = .001). MA caregivers had stronger familism scores (B = 0.49; p < .001). Increased burden is associated with worse caregiver mental and physical health. MA caregivers had stronger familism resulting in better health. Findings can contribute to early identification, intervention, and coordination of services to help reduce caregiver burden.

Modifications to Child Restraints for Children With Disabilities – Experiences of Australian Caregivers and Health Professionals

All children travelling in motor vehicles must be properly secured in a size-appropriate child restraint. However, for many children with a disability, standard child restraints are not suitable, and health professionals or caregivers modify restraints. There is however little data characterising these modifications. This study examined the modifications used to assist with the restraint of children aged 0-16 years with additional needs in motor vehicles. Two anonymous online surveys, one for caregivers and one for health professionals on child restraint use and modifications to seating for children with disabilities were undertaken. The quantitative and qualitative data were analysed with descriptive statistics. Eighty-six responses were analysed (40 caregivers and 46 health professionals). The majority (95.7%) of health professionals and 22.5 percent of caregivers reported having used modifications. Additional padding for postural support was the most frequently used modification (47.7% health professionals, 10% caregivers). Specialised harnesses were the most frequently used accessory used by health professionals (47.8%), with cross chest straps most frequently used by the surveyed caregivers (10%). Challenges for children with disabilities using compliant child restraints continue to persist, despite the use of modifications. There is also a lack of evidence on the impact of the modifications on restraint performance, potentially placing children at risk.

Aboriginal Kinship Carers and Children with Fetal Alcohol Spectrum Disorder in Western Australia: Advancing Knowledge from an Indigenous and Disability Lens

Children and youth with fetal alcohol spectrum disorder (FASD) have limited access to assessment, diagnostic, and treatment resources – a distinct disadvantage in meeting their care needs in Australia. Limited knowledge exists on the intersection of FASD, Indigeneity, racism, trauma, and child welfare involvement. Notably, the lack of support for children with FASD increases the risk of adverse outcomes, including incarceration, homelessness, mental health problems, and early mortality. Children with FASD are often cared for in the child protection system by kinship carers, many without a diagnosis or the benefits of FASD informed care. Rarely considered is the Australian response to FASD or the Aboriginal worldview on disability. Qualitative research was utilized to conduct semi-structured interviews with six carers of Indigenous children with FASD–three foster carers and three relative or kinship carers. Seven core themes identified by carers included: FASD awareness, caregiver health, advocacy for the child, mothers of the children with FASD, loss and grief experienced by the carer, social costs, and children in child protection care. Carers identified that limited resources existed to address the disabilities and care needs of children, including training and respite. Financial disparity exists with relative carers receiving less income than foster carers. Carers demonstrated advocacy, resiliency, and resourcefulness in providing care. A lack of knowledge of FASD and core resources in child welfare services were identified as major challenges in providing care. This research examined the caregiving experiences of foster and Aboriginal kinship carers, caring for children with FASD in child protection.

The Mediating Effect of Psychological Resilience between Individual Social Capital and Mental Health in the Post-Pandemic Era: A Cross-Sectional Survey over 300 Family Caregivers of Kindergarten Children in Mainland China

In the context of the impact of the post-COVID-19 pandemic on families, this study explores the impact of individual social capital and psychological resilience on the mental health of family caregivers of kindergarten children in mainland China. This study included a sample of 331 family caregivers from Zhaoqing City, Guangdong Province, and the researchers applied the Personal Social Capital Scale (PSCS-16), Connor–Davidson Resilience Scale (CD-RISC-10), and Depression Anxiety Stress Scale (DASS) to assess social capital, psychological resilience, and mental health. Findings indicate a positive relationship between bridging social capital and mental health, while psychological resilience is negatively associated with depression, anxiety, and stress. Psychological resilience is identified as a mediator between social capital and mental health outcomes in this study. These insights highlight the importance of enhancing social capital and psychological resilience to improve family caregivers’ mental health and the need for targeted interventions.

Pharmacologically Altering the Minds of the Old, Sick, and Dying

The percentage of the world’s population that falls into the category of “_elderly_” has increased and is expected to greatly increase in the upcoming decades. The burden for the physical and mental well-being of the elderly has largely fallen upon health professionals and caregivers in various living environments. This article reviews and discusses the common use of psychotropic drugs among elderly populations worldwide despite the increased sensitivity of the aged central nervous system to the effects of these drugs, and the greatly increased risk for falls, fractures, fainting, and hospital admission for adverse events due to the usage of psychotropic drugs in this age sector. _Psychotropic Polypharmacy, Potentially Inappropriate Medication_, and the mind-altering effects of psychotropic drugs in the elderly population are also explained. Finally, we discuss the near-universal usage of psychotropic drugs in _end-of-life protocols_ used in palliative care, hospice, and end-of-life treatment centers.

Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers.

Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

Profile of Caregiving Activities and Association With Physical Health Among Dementia Spousal Caregivers.

This study aims to identify patterns of caregiving intensity and assess associations between caregiving intensity and multidimensional physical health indicators and health behaviors among spousal caregivers of persons with Alzheimer's disease and related dementia. Using data from 152 spousal caregivers aged 65 and older, the intensity of their caregiving experience was measured as the number and frequency of health- and medical-related helping activities for their care recipient. Multidimensional health indicators included self-reported fatigue, sleep disturbance, physical functioning, pain interference, general health, and the number of chronic conditions from the electronic health records. Self-reported health promotion behaviors were assessed as health responsibility, physical activity, nutrition, interpersonal relations, and stress management. Two distinct caregiving intensity patterns, high-intensity (37.5%) and low-intensity (62.5%) caregiving, were identified with cluster analysis. Caregivers in the high-intensity caregiving cluster reported feeling more tired (t = 2.25, p < .05), experiencing more sleep disturbance (t = 3.06, p < .01), and performing less physical activity (t = 2.05, p < .05) compared with caregivers in the low-intensity group. Future studies are needed to develop effective interventions to address caregiving intensity and its consequences on the health of spousal caregivers of persons with dementia.

Older adults with overlapping caregiving responsibilities and care needs in a U.S. national community-based sample.

Community-dwelling older adults often serve as caregivers despite having their own health concerns and disabilities, yet little is known about their care needs. Cross-sectional analysis including community-dwelling U.S. adults over age 60 years who self-identified as caregivers in the National Social Life, Health, and Aging Project in 2015-2016. Caregiving was defined by self-reported assistance of another adult with day-to-day activities due to age or disability; overlapping care-receiving was defined by simultaneous receipt of help for at least one activity of daily living (ADL) or independent ADL (IADL). Multivariable logistic regression models examined attributes associated with overlapping care-receiving among older caregivers, adjusted for caregiver characteristics (age, gender, spousal caregiving, self-reported physical and mental health, cognitive function, and household assets). Among the 444 caregivers, the mean age was 67.8 (SD 0.29) years, 55.8% were women, 78.1% were non-Hispanic White, 54.7% self-identified as primary caregivers, and 30.7% were caring for a spouse. Thirty-two percent of older caregivers were caregiving while themselves receiving assistance with at least one ADL or IADL. Thirty-four percent of caregivers reported <$50,000 in household assets and 10% did not answer the question. Given prior research that supports that most nonrespondents fall into the low-income group, subjects were combined. Analyses with and without nonrespondents did not substantially change the results. Compared to caregivers who were not simultaneously receiving care, caregivers reporting overlapping care-receiving had greater odds of being older (AOR 1.30, 95% confidence interval [CI] [1.14, 1.48] per each 5-year age increase), caregiving for a spouse (AOR 1.93, 95% CI [1.20, 3.13]), having limited household assets (AOR 2.10, 95% CI [1.17, 3.80], for <$50,000 compared to ≥$50,000), and having poor or fair self-reported physical health (AOR 2.94, 95% CI [1.43, 6.02]). Over 30% of older adult caregivers report simultaneously receiving care for their own daily activities. Older caregivers who receive care are more likely to be older, spousal caregivers, and have limited assets and worse physical health. Targeted strategies are needed to support older caregivers who are uniquely vulnerable due to their overlapping care needs.

Perceived loss of support to community caregivers during the COVID-19 pandemic in the United States.

Coronavirusdisease (COVID-19) had a negative impact on the health and well-being of community caregivers. Few studies examine the pandemic's negative impact on the availability of social networks of caregivers. This article uses data collected during COVID-19 before vaccination to examine caregivers' reports of perceived lost and reduced network support. We assessed the personal networks of a nationally representative sample of 2214 community caregivers in the United States. We analyzed associations between caregiving factors and caregivers' perceptions of lost and reduced network support. Changes in care recipient living circumstances during COVID-19, longer-term caregiving, care recipient hearing/vision/mobility problems, caregiver travel/socializing restrictions, caregiver race/ethnicity, caregiver income, caregiver age, network connectivity, family relationships, and network members' age were associated with perceived lost/reduced support during the pandemic. Findings provide insights for the development of social network interventions to support caregivers and help them cultivate support networks resilient to public health crises.

Health literacy interventions for informal caregivers: systematic review

AimThe aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability.MethodsMEDLINE, CINAHL, PsycINFO and Embase...

Families Benefit After Utilization of a Clinic-Based Food Pantry Irrespective of Food Insecurity Experiences in a Pediatric Obesity Treatment Program.

To evaluate the congruence between food insecurity screening outcome and clinic-based food pantry utilization and to examine caregiver reported comfort, motivation, and benefits of utilization. Mixed-methods study. Academic pediatric obesity treatment clinic. Convenience sample of caregivers. Clinic-based food pantry offered irrespective of food insecurity screening outcome. Food insecurity screening (Hunger Vital Sign) and severity, self-rated caregiver health, willingness to disclose food insecurity and receive food, and food-related stress. Chi-square and t-tests were utilized to examine associations and descriptive analysis explored benefits. Rapid qualitative analysis was utilized to identify themes. Caregivers of 120 children were included (child mean age 11.8; 56.7% female, 67.6% Non-Hispanic Black), with 47 of 59 eligible completing follow-up surveys and 14 completing in-depth interviews. Approximately half (N = 30/59, 50.8%) of families utilizing the food pantry screened negative for food insecurity. Families utilizing the food pantry were more likely to report severe food insecurity (N = 23/59; 38.9%) compared to those declining (N = 3/61; 4.9%, P < .001). Caregivers accepting food were able to meet a child health goal (N = 30/47, 63.8%). Caregivers reported feeling comfortable receiving food (N = 13/14) and felt utilizing the food pantry led to consumption of healthier foods (N = 7/14). Families who screened both positive and negative for food insecurity utilized and benefited from a clinic-based food pantry. Clinics should consider strategies offering food resources to all families irrespective of screening outcome.

Supporting the Health and Well-Being of Caregivers of Persons with Pain Strategies to address stress and improve self-care.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. This new group of articles provides practical information nurses can share with family caregivers of persons living with pain. To use this series, nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses. Cite this article as: Tonkikh, O., et al. Supporting the Health and Well-Being of Caregivers of Persons with Pain. Am J Nurs 2023; 123 (6): 55-61.

Theoretically Based Factors Associated With Stroke Family Caregiver Health.

Most persons who have had strokes are cared for at home by family members-many of whom experience depressive symptoms and quality of life changes as a result of providing care. The objective of this study is to determine theoretically based factors associated with unhealthy days in stroke family caregivers. Secondary data analysis was conducted using baseline data from a large randomized controlled clinical trial testing the Telephone Assessment and Skill-Building Kit program with 254 family caregivers of persons who have had strokes. Guided by a conceptual model derived from Lazarus' transactional approach to stress, data were analyzed using multiple regression with unhealthy days as the dependent variable and theoretically based factors as independent variables. Caregivers were mostly female (78%), White (71%), spouses (47%), or adult children (29%). Caregivers reported nine unhealthy days on average within the past month. A total of 37.8% of the variance in unhealthy days was explained by caregiver task difficulty, level of optimism, threat appraisal, depressive symptoms, and life changes with depressive symptoms being the strongest individual predictor because of shared variance. Unhealthy days is an important part of stroke family caregiver health. Factors associated with unhealthy days in this study provide areas to consider in future intervention development.

Theoretically Based Factors Associated With Stroke Family Caregiver Health.

Theoretically Based Factors Associated With Stroke Family Caregiver Health.

Sleep and Caregiver Burden Among Caregivers of Persons Living With Dementia: A Scoping Review.

Caregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep. We conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized. The search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain. Although subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.

일하는 가족 주 돌봄자의 노인 돌봄부담 및 돌봄자 정체성의 조절효과

The purpose of this study was to explore the relationship between variables and the moderating effect of caregiver identity in reducing the elder care burden of working family caregivers. To this end, a sample of 288 working family caregivers of the elderly was studied. A research model was constructed based on the theoretical perspectives of stress process model and caregiver identity, and analyzed using SPSS 26 and Amos 26. As a result of analyzing the relationship between the main variables and care burden, it was found that the health of working family caregivers, care hours, daily life dependence of the elderly, and problem behavior were significant influencing factors on care burden, and caregiver identity had a significant moderating effect on the relationship between health, daily life dependence, and problem behavior and care burden. Based on the results of the analysis, we proposed support measures to reduce the care burden of working family caregivers, educational systems to strengthen caregiver identity, and intervention strategies for caregiver identity as a way to reduce care burden.

Respectful maternity care at caesarean delivery: Experiences of mothers in a primary referral hospital in Ghana

AbstractBackgroundRespectful, dignified care is a human right for all women that impacts skilled birth attendance and outcomes. This study aimed to assess the prevalence of respectful maternity care (RMC) provided at caesarean deliveries in a Ghanaian referral hospital and determine associated factors influencing care provision. We sought to elucidate RMC prevalence and drivers specific to the caesarean experience, to promote rights‐based, patient‐centred caesarean delivery care.MethodsA cross‐sectional study was conducted from June to November 2022, among women who delivered via caesarean section at the hospital. Interviews of participants were conducted using structured questionnaires, capturing respondents' sociodemographic and obstetric features and perceptions of RMC. Quantitative data were summarised using means, medians, frequencies and proportions. Bivariable and multivariable logistic regression models were employed to determine factors associated with RMC at 95% confidence interval (CI) and a p &lt; 0.05.ResultsA total of 308 women were included in the study. The mean age of mothers was 29.9 (±6.8) years. Of the mothers, 67.9% (95% CI: 62.3, 73.0) received RMC and 32.1% reported disrespectful and abusive care. Several factors were associated with higher likelihood of receiving RMC at caesarean delivery, including being married, adjusted odds ratio (aOR) 2.45 (95% CI: 1.17, 5.12), having average monthly income between Ghana cedis 501 and 1500, aOR = 1.94 (95% CI: 1.07, 3.50), having a previous delivery history of spontaneous vaginal delivery only, aOR 2.04 (95% CI: 1.02, 4.08) and receiving anaesthesia from a male anaesthetist, aOR 2.04 (95% CI: 1.22, 3.42).ConclusionThough the majority of women at caesarean delivery received RMC, close to one‐third may attribute a negative caesarean birth experience to disrespectful care. Respectful and abusive‐free care at service delivery should thus be emphasised for healthcare givers and form part of antenatal education.

Which terms should be used to describe medications used in the treatment of seizure disorders? An ILAE position paper.

A variety of terms, such as "antiepileptic," "anticonvulsant," and "antiseizure" have been historically applied to medications for the treatment of seizure disorders. Terminology is important because using terms that do not accurately reflect the action of specific treatments may result in a misunderstanding of their effects and inappropriate use. The present International League Against Epilepsy (ILAE) position paper used a Delphi approach to develop recommendations on English-language terminology applicable to pharmacological agents currently approved for treating seizure disorders. There was consensus that these medications should be collectively named "antiseizure medications". This term accurately reflects their primarily symptomatic effect against seizures and reduces the possibility of health care practitioners, patients, or caregivers having undue expectations or an incorrect understanding of the real action of these medications. The term "antiseizure" to describe these agents does not exclude the possibility of beneficial effects on the course of the disease and comorbidities that result from the downstream effects of seizures, whenever these beneficial effects can be explained solely by the suppression of seizure activity. It is acknowledged that other treatments, mostly under development, can exert direct favorable actions on the underlying disease or its progression, by having "antiepileptogenic" or "disease-modifying" effects. A more-refined terminology to describe precisely these actions needs to be developed.