Caregiver Resources Research Articles

A Latent Class Analysis: Are caregiver factors associated with U.S. adolescents' mental health?

Bronfenbrenner’s ecological systems view adolescents’ development in the context of the surrounding environment. Nevertheless, numerous studies have focused on early childhood more than adolescence in the association with caregiver (mostly parents’) factors. This study employed these theories and latent class analysis (LCA) to examine how the mental health of adolescents are associated with primary caregiver factors. Specifically, we aimed to investigate how primary caregiver factors are relevant to the degree of adolescents’ depression and anxiety.We used national data from adolescents aged fifteen and their primary caregivers who completed the 2017 Fragile Families and Child Wellbeing Survey. We identified adolescents whose primary caregivers participated in the Wave 6 survey to include caregiver indicators for LCA, rendering a total of 3,206 subjects. Using R, we identified a four-class model as our final model. We found that adolescents in Class 1 (High-Risk Factors) scored higher on anxiety and depression compared to Class 2 (Poverty with Life Satisfaction) and Class 3 (High Protective Factors). On depression, adolescents in Class 2 scored higher than those in Class 3, and adolescents in Class 4 (Higher Emotional Risk and Protective Factors) scored higher than those in Class 3.Our results indicate that adolescents who live with primary caregivers with protective factors tend to have better mental health outcomes. Primary caregiver protective factors, such as employment status, education level, and life satisfaction, are associated with lower levels of depression in adolescents. Furthermore, caregiver emotional health is important in relation to their adolescent's mental well-being. This study's implications suggest that professionals should assess the needs of adolescents living in poverty and provide them with access to appropriate mental health services. The findings also highlight the importance of addressing substance use issues and promoting educational resources for primary caregivers. Future research is recommended to explore other facets of adolescents’ well-being and to understand the mechanisms by which risk and protective factors influence adolescents’ mental health.

Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol.

Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well. We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors. The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed. The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.

Predictors of Psychological Distress Among Rural Family/Friend Caregivers of People Living With Dementia in the United States: Consequences of the COVID-19 Pandemic.

Caregivers of persons living with dementia in rural United States are a vulnerable population. During the coronavirus disease 2019 (COVID-19) pandemic, rural communities experienced heightened disparities in social services, healthcare, suicides, and mortality. Guided by the Caregiving Stress Process Model, this study examines the relationship between the stressors and resources of rural caregivers of persons living with dementia and their experience of depression, stress, and COVID-19. One hundred and fifty-two rural caregivers of persons living with dementia completed an online survey, March 1, 2021-April 30, 2022. Analyses used baseline responses to validated scales and an open-ended question, "How has COVID impacted your life as a caregiver?" Dependent variables were depressive symptoms and stress. Bivariate and hierarchical linear regression analyses examined associations of stressors and resources with depressive symptoms and stress. Thematic analysis examined open-ended question responses. Among examined stressors, high care burden (b = 1.94, p < .05) and loneliness (b = 0.76, p < .0001) were positively associated with depressive symptoms. Loneliness (b = 0.24, p < .05) and ≥41 hr spent caregiving per week (reference 10-20 hr; b = 0.99, p < .05) were associated with stress. Among examined resources, self-efficacy for caregiving (b = -0.21, p < .05) was inversely associated with stress. Qualitative results confirmed quantitative results and identified additional pandemic-related themes in stressors and resources. We found that caregiver burden, loneliness, and caregiving hours were associated with greater psychological distress among rural caregivers of persons living with dementia during the pandemic, whereas self-efficacy for caregiving was protective. Rural caregivers need increased support to address care burdens and enhance psychological resources for caregiving. NCT04428112.

End-of-Life Discussions With Patients and Caregivers Affected By Neurogenetic Diseases.

No effective cure is available for neurogenetic diseases such as Huntington disease, spinocerebellar ataxias, and Friedreich ataxia, all of which cause progressive motor, cognitive, and psychiatric symptoms leading, in the long term, to severe communication (among other) impairments. In end-of-life situations, advanced directives (indications formulated by the patient about end-of-life choices) are one decision-making resource for relatives, caregivers, and health care professionals. Given the slowly progressive nature of these diseases, the related disabilities, and their hereditary component, patients, caregivers, and neurologists are often at a loss concerning the right course of action to take. Our study's aim was to explore patients' and caregivers' perceptions, needs, and expectations around anticipated end-of-life discussions and advanced directives. DIRAGENE is an observational, cross-sectional, mixed-methods study with a patient-centered component and a primary caregiver-centered component. Observations include disease severity, psychosocial, and emotional scales; in-house questionnaires; and semidirected interviews. We included 124 participants, of which 81 were patients and 43 primary caregivers. Only 16% of the participants knew specifically about advanced directives and 7% had written documents vs 30% and 18% in the general French population, respectively, adjusted for age. Qualitative analysis of the interviews with 15 couples showed notable dissimilarities in ideas about advanced directives between patients and caregivers and that the underlying pathology, severity, and inheritability are less relevant factors regarding end-of-life discussions than age, environment, prior experiences with death, and history of family illness. Most patients (95%) and caregivers (98%) found that participating in the study was helpful in bringing awareness to end-of-life issues, wished to prioritize discussing them with loved ones, and requested assistance in managing them throughout the course of the disease. Being affected by severe neurogenetic diseases does not seem to prompt individuals to give much thought to end-of-life planning. However, patients and caregivers welcome comprehensive information and expect progressive support from trained health care professionals in having such discussions. Routine integration of these conversations into medical management through a holistic and adapted approach will benefit patients with illnesses with unfavorable long-term prognoses.

"Better Living with Non-memory-led Dementia": protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

BackgroundNon-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme.MethodsA randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial.Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online.DiscussionOnline-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia.Trial registrationThis trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377.

Informal Caregiving Among Faculty at a Large Academic Health Sciences University in the United States: an Opportunity for Policy Changes.

This article aims to determine the prevalence of caregiving among faculty at a large academic health sciences institution, to examine the effect of gender and other demographic and professional covariates on caregiving status, and to explore caregiver-generated policy recommendations. A cross-sectional, mixed-methods survey was collected from June through August 2018. Participants were faculty within one of the institution's health professional schools (dentistry, medicine, nursing, or pharmacy) receiving at least 50% salary from the institution. In addition to demographic information, we collected academic series and rank, and assessed association between covariates on caregiving status using logistic regression. We analyzed open-ended responses using thematic analysis to identify themes in caregiver barriers and policy suggestions. Among 657 eligible respondents, 11.4% were informal caregivers. Women were more likely to be caregivers than men (aOR 2.53, 95% CI: 1.40, 4.78), as were older faculty. Caregivers identified unsupportive climate or unrealistic work expectations, concern about career advancement, insufficient information about policies, and concern about colleague burden as barriers to support. Suggestions for workplace support included improved leave policies, increased flexibility, caregiver resource support, improved clarity and dissemination of policy information, and financial support. Women faculty are more likely to be informal caregivers, exacerbating disparities within academic medicine for promotion and retention among women faculty. Institutions might include caregiving status in annual burnout surveys to guide the development of structural support and policies for extension of family leave beyond childbearing (or catastrophic leave), flexibility in work hours, and subsidized eldercare services.

Visible body, invisible care: Family, gender politics, and the female caregiver in living donor liver transplantation in Taiwan

This study contributes to existing research on gender inequities in living donor liver transplantation (LDLT) by employing a feminist and sociocultural theoretical perspective. Through participant observation and in-depth interviews with 36 participants from 13 families, including 13 donors, 10 recipients, and 13 caregivers, at the Chang Gung Memorial Hospital, this study provides a nuanced understanding of the complexities of family dynamics and gender relations throughout the decision-making and meaning-making processes for LDLT in Taiwan. The interviews were transcribed verbatim, translated from Mandarin to English, and analysed using grounded theory and thematic analysis. The findings reveal that LDLT is a gendered experience embodied through four aspects: 1) the impact of family dynamics and gender politics on decision-making, 2) societal and cultural perceptions of women's bodies and families, 3) the multiple roles and multifaceted care work of female caregivers, and 4) gender differences in the discourse on the meaning-making of LDLT. The study illuminates the complex interplay of family, gender, and care within the sociocultural landscape of Taiwan. It underscores the gendered and hierarchical division of care work within households and the vulnerability experienced by female caregivers and donors, as well as other disadvantaged family members. Furthermore, the study offers insights for healthcare professionals and policymakers to recognise the value of caregiving and the need for more support and resources for caregivers. Future research could adopt a multifaceted approach and inform interventions and policies aimed at reducing gender inequities in LDLT, moving beyond the narrow focus on numerical gender imbalance.

Exploring the Lived Experiences of Rural Hospice Social Workers in Navigating “Cracked” Systems

Social workers often encounter health and resource disparities and caregiver challenges in support of hospice patients and families. Social workers also play a critical role in navigating systems and confronting systemic barriers. Their input regarding macro practice is invaluable, though there is not much literature pertaining to end-of-life disparities as experienced from the social worker point of view. There is also limited research from the hospice social worker perspective, with little pertaining to those providing care in rural areas. To address these gaps, this phenomenological study explored the lived experiences of rural hospice social workers to better understand their role in these matters. Data collection occurred through in-depth unstructured qualitative interviews. A total of 19 rural hospice workers participated in the study. There were four main themes identified: systemic issues in hospice settings, resource and geographic barriers, tensions and benefits of interprofessional collaboration, and hospice work environment. Based on these findings, recommendations for hospice social work practice, research, and policy include support of and elevation of the voice of hospice social workers on the interprofessional team, assessment of resource barriers to improve hospice social work interventions and improve quality of life for dying persons, education of hospice administrators to understand best ways to support hospice social, and implementation of policy change to expedite access to caregiver resources at end of life.

Assessing the Effectiveness of a Massive Open Online Course for Caregivers Amid the COVID-19 Pandemic: Methodological Study.

The COVID-19 pandemic has presented significant challenges to health care systems, particularly impacting the older population due to their vulnerability and increased susceptibility to severe complications. Many of the most vulnerable individuals rely on informal caregivers, who play a vital role in enabling them to continue living in their homes. However, social isolation and limited access to health services during the pandemic have made caregiving more difficult. In response, massive open online courses (MOOCs) have emerged as a training and support solution for caregivers. This study focuses on a MOOC developed to assist caregivers during the pandemic, aiming to enhance their knowledge of COVID-19 and prevention measures and promote effective self-care practices. The study's aim is to develop and validate a MOOC integrating personal and housing hygiene measures to be adopted in self-care-related activities, surveillance, and monitoring by caregivers of the most vulnerable home-dwelling-dependent people, to provide safe care and prevent SARS-CoV-2 infection. A methodological study was developed. The content of the MOOC was developed based on scientific evidence and a Delphi study. The course was organized into 9 modules, addressing aspects related to safe self-care assistance and minimizing the risk of contagion. A convenience sample of 33 informal caregivers was recruited through a caregivers' association to verify the adequacy of the course. Knowledge questionnaires were administered before and after the course to assess the impact on caregivers' knowledge. The Family Caregiving Factors Inventory was used to evaluate caregiver resources, knowledge, expectations, and difficulties. Additionally, the technology acceptance model was applied to assess participants' satisfaction with the MOOC. Prior to attending the MOOC, participants demonstrated an average knowledge level score of mean 14.94 (SD 2.72). After completing the course, this score significantly increased to mean 16.52 (SD 2.28), indicating an improvement in knowledge. Caregivers found the course accessible, valuable, and applicable to their caregiving roles. Feedback regarding the MOOC's structure, illustrative videos, and language was overwhelmingly positive. Participants perceived the course as a valuable resource for decision-making in care delivery, leading to enhanced self-esteem and confidence. The MOOC has proven to be an effective tool for increasing caregivers' knowledge and empowering them in their roles. Remarkably, even low-literacy caregivers found the course valuable for its clear and understandable information. The MOOC demonstrated its adaptability to challenges faced during the pandemic, ensuring access to relevant information. This empowering strategy for caregivers has yielded positive outcomes. The MOOC represents a tool to support and empower informal caregivers, enabling them to provide optimal care during difficult times.

Social Isolation of Older Adults, Family, and Formal Caregivers During the COVID-19 Pandemic: Stories and Solutions Through Participatory Action Research.

This participatory action research (PAR) aimed to understand the health implications of guidelines impacting social isolation among frail community-dwelling older adults and their family and formal caregivers during the coronavirus disease (COVID-19) pandemic. Reflexive thematic analysis (RTA) of data collected from 10 policy/procedural documents revealed four themes: valuing principles, identifying problem(s), setting priorities, and making recommendations. Interviews with 31 participants from Peterborough, Ontario, also revealed four themes: sacrificing social health, diminishing physical health, draining mental health, and defining supports. Recommendations to decision makers were finalized at a knowledge exchange event involving participants and members of Age-friendly Peterborough. Key findings demonstrate the need for Canadian governments and health and social service agencies to enhance access to technology-based interventions, and educational and financial resources for caregivers. Meaningful communication and collaboration between older adults, caregivers, and decision makers are also needed to reduce the gap between policy and practice when addressing social isolation.

Informal settlements and the care of children 0-3 years of age: a qualitative study.

There is a rapid increase in urbanization with a high percentage of people living in poverty in urban informal settlements. These families, including single parents, are requiring accessible and affordable childcare. In Mlolongo, an informal settlement in Machakos County in Nairobi metropolitan area, Kenya, childcare centres, referred to as 'babycares' are increasing in number. They are being provided by local community members without attention to standards or quality control. The study objective was to understand parents', caregivers' and community elders' experiences and perceptions in terms of the quality of babycares in Mlolongo to inform the design and implementation of improved early childcare services. Using a community-based participatory research philosophy, a qualitative study including focus group discussions with parents, community elders and babycare centre employees/owners (referred to as caregivers) was conducted in Mlolongo. A total of 13 caregivers, 13 parents of children attending babycares, and eight community elders participated in the focus groups. Overall, community elders, parents and caregivers felt that the babycares were not providing an appropriate quality of childcare. The reported issues included lack of training and resources for caregivers, miscommunication between parents and caregivers on expectations and inappropriate child to caregiver ratio. The deficiencies identified by respondents indicate a need for improved quality of affordable childcare to support early child development in these settings. Efforts need to be invested in defining effective models of early childcare that can meet the expectations and needs of parents and caregivers and address the major challenges in childcare quality identified in this study.

Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers.

While Polish studies focus on the symptoms, causes and treatment of people suffering from Dravet syndrome (DS), much less is known about the situation of the family caregivers of DS children. This study was designed to explore the experiences, daily challenges and needs related to caring for DS children. An anonymous self-administered online questionnaire was developed. The survey was completed by 75 family caregivers affiliated with the Association for People with Severe Refractory Epilepsy DRAVET.PL on Facebook. Most caregivers felt burdened by their children's reduced mobility (57.3%), mood swings (57.3%), lack of access to rehabilitation and medicine (56%) and healthcare expenses (50.7%). Caregivers also complained of a lack of time to themselves (76%) and work restrictions resulting from caregiving (72%). They consequently reported experiencing fatigue (84%), a deterioration of mental health (60%) and intimacy problems with their spouse/partner (53.4%). An important source of strain was a prolonged diagnostic odyssey and the constant struggle over the healthcare services for DS children. Since DS caregivers' problems and needs are often overlooked, they may be described as the forgotten people in DS. Healthcare professionals should be educated about the challenges related to caring for DS child, psycho-social status and coping resources of DS caregivers, and should focus on identification, monitoring and supporting caregivers' physical and mental well-being and needs.

Association of Caregiver Depression Risk With Patient Outcomes in Parkinson Disease

Caregivers are integral to Parkinson disease (PD) care, but little information exists regarding how caregivers impact patient outcomes. To assess the association between caregivers reporting depression symptoms and patient quality of life (QOL), emergency department (ED) visits, and hospitalizations. This retrospective cohort study was conducted at 15 Parkinson's Foundation Centers of Excellence within the US. The Parkinson's Foundation Parkinson Outcomes Project registry was used to collect baseline data from January 1, 2016, to December 31, 2018, with subsequent annual study visits through July 31, 2020. Data were analyzed from August 5, 2020, to June 9, 2023. A convenience sample of 454 patients with PD and their caregivers was recruited during routine clinical visits with movement disorder specialists. Patients with a physician diagnosis of idiopathic PD who lived at home and had 1 or more follow-up study visits were included. Caregiver depression symptoms using the Center for Epidemiologic Studies Depression Scale. Patient health-related QOL (measured by the 39-item Parkinson Disease Questionnaire), number of annual ED visits, and number of annual hospitalizations were measured. The independent association between caregivers reporting depression symptoms and patient outcomes was assessed using linear mixed-effects and Poisson regression models. The a priori hypotheses were that a greater number of depression symptoms reported via the Center for Epidemiologic Studies Depression Scale would be associated with worse patient QOL and a greater number of ED visits and hospitalizations. Among 454 patient-caregiver dyads (patients: mean [SD] age, 67.3 [8.4] years; 320 men [70.5%]; caregivers: mean [SD] age, 65.9 [8.7] years; 326 women [71.8%]), the mean (SD) follow-up was 2.0 (1.4) study visits. Greater depression symptoms among caregivers were associated with worse patient QOL as measured by the Parkinson Disease Questionnaire (mean [SD] score, 33.78 [17.71], on a scale of 0-100, with higher scores indicating worse QOL, among patients with caregivers who had depression symptoms vs 24.50 [14.19] among patients with caregivers who did not have depression symptoms; β = 0.43; 95% CI, 0.28-0.58; P < .001) and more annual ED visits (β = 0.02; 95% CI, 0 to 0.04; P = .03) but not more hospitalizations (β = 0.02; 95% CI, -0.01 to 0.03; P = .10). In this cohort study, patients with PD who had caregivers at higher risk of depression were more likely to have worse QOL and higher ED use than patients who had caregivers not at higher risk of depression. Additional caregiving resources and interventions to reduce caregiver depression symptoms could potentially improve patient outcomes.

International Discharge Planning: Putting It All Together.

Judith Sands, MSL, BSN, RN, CPHRM, CPHQ, CCM, ARM, is a passionate and accomplished relationship-focused leader with more than 30 years of experience working in academia, hospitals, managed care, specialty networks, and health IT organizations. Ms. Sands is the author of Home Hospice Navigation: The Caregiver's Guide, the only independently produced caregiving resource for making home hospice understandable to caregivers. Ms. Sands earned a bachelor of science in nursing degree from the University of Florida and her master of science in leadership from Nova Southeastern University. Ms. Sands is a registered nurse, holding state and national certifications in case, quality, and risk management. She presented at various local and national conferences. Her current focus is on ensuring patient safety, care coordination, and bringing dignity to end-of-life care. Address correspondence to Judith R. Sands, MSL, BSN, RN, CPHRM, CPHQ, CCM, ARM, 8905 Deerland Grove Dr, Raleigh, NC 27615 ([email protected]). You are Invited to share your knowledge and experience. Do you have a story to tell, a question or issue you would like to see addressed here? Questions are always welcome. We encourage and invite all readers to submit questions and/or manuscripts, as well as topics you would like to see addressed in this department. If you have an idea, you would like to discuss, or are considering being a first-time author, send your contact information by email and you will be contacted via your preferred method. All inquiries and submissions are accepted by email at [email protected]. The author reports no conflicts of interest.

Risks and mitigating factors in psychosocial adjustment of spousal caregivers of people with dementia

AbstractBackgroundWe are living in an era when the world’s aging population is rapidly expanding. The importance of family caregivers has been receiving increasing attention since last decade. With longer lifespans and limited caregiving resources from the affected ones’ own children, some of whom are even childless, caregiving for older adults has become the main responsibility of their spouses. Caring for older adults with dementia has always been a family endeavor and spousal caregivers play a crucial role in caring for people affected by dementia in the communityMethodBy applying the Stress Process Model to examine the characteristics of people with dementia and their spousal caregivers, this study aims to identify the potential risk and mitigating factors of psychosocial adjustment among the spousal caregivers. We recruited 80 care recipient‐caregiver couples in Hong Kong and examined the relationships of socio‐economic, care recipient’s, and caregiver’s factors with spousal caregivers’ psychosocial adjustment through the use of questionnaire survey.ResultIt was found that care recipients’ cognitive functions were associated with caregivers’ reported frequencies of their behavioral and psychological symptoms of dementia (BPSD) (r = .30, p = .008), and caregivers’ perceived burden of caregiving (r = ‐.54, p = .008). Caregivers’ quality of life was associated with their perceived caregiving burden (r = ‐.82, p = .001) and self‐efficacy (r = .32, p = .001). Upon further examining the caregiving model with these parameters, a significant multivariate general linear model was found with (F (1, 12) = 13.06, p = .001, partial eta square = .70, observed power = .99). Moreover, female caregivers reported higher sense of caregiving stress and poorer quality of life than male caregivers.ConclusionThis study found that the cognitive functions and BPSD of care recipients with dementia and perceived level of caregiving burden are strongly associated with degrees of psychosocial adjustment among their spousal caregivers. The self‐perceived caregiving role in a family is also a possible confounding factor contributing to the perceived caregiving burden. To support in‐home caregiving of people with dementia, strategies to empower spousal caregivers to execute their caregiving roles are recommended.

Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research

Ethnographic research with cognitively impaired older adults can be challenging, in part because cognitive impairment raises questions about the ability to provide informed consent. Relying on proxy consent is a commonly used strategy, but often excludes people with dementia who lack close kin (de Medeiros, Girling, & Berlinger, 2022). In this paper, we describe how we have analyzed existing research data from a well-established and ongoing prospective cohort study, the Adult Changes in Thought Study, along with unstructured text from the medical records of participants who had no living spouse or adult children when they developed dementia, as a way of studying the circumstances, life trajectories, caregiving resources, and care needs of this vulnerable and difficult-to-research group. In this article, we detail this methodology, exploring what can and cannot be gleaned from it, what the ethical implications may be, and how and whether this type of research can be considered ethnographic. In conclusion, we argue that collaborative interdisciplinary research using existing, longitudinal research data and text from medical records deserves to be considered as a potentially useful addition to the ethnographic toolkit. We anticipate that this is a methodology that could be applied more broadly, and paired with more traditional ethnographic methods, might be one way to make research with this population more inclusive.

Applying an intersectional lens to consider disparities in historically marginalized women’s access to caregiving resources

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The Effect of a Patient Education Multimodal Digital Platform on Knowledge Acquisition, Self-efficacy, and Patient Satisfaction.

This study examined the impact of digital training instrument based on multimodal learning approach on surgical ward hospitalized patient education-related variables. The study was conducted as a multisite study in a large medical center as a two-arm, controlled trial with randomized cluster sampling. All patients meeting the inclusion criteria were offered the opportunity to participate. The control group (n = 40) received nurse explanation on home self-injection of enoxaparin sodium, whereas the intervention group (n = 40) received a tablet for multimodal learning specifically developed for this study. All participants completed before-and-after questionnaires evaluating knowledge acquisition, change in self-efficacy, and patient satisfaction. Results showed that the intervention group gained significantly more knowledge than the control group ( P < .01). There was no significant difference in the level of self-efficacy change between the groups, and it was found that the control group patients were more satisfied with the training process ( P = .01). This study shows that the use of a digital application for the benefit of patients' self-injection learning is effective in achieving educational goals such as knowledge acquisition and therefore can be a helpful resource for caregivers. Yet, these applications are not a substitute for attention provided by professionals, which is highly valued by patients.

Development and validation of the caregiver needs and resources assessment.

Existing caregiver assessment tools were long criticized for focusing on the needs and burden while neglecting the importance of the resources. The current study aimed to develop a multidimensional and time-effective assessment tool that measures both needs and resources of non-paid family caregivers of older adults for screening and service-matching purposes. Items of the Caregiver Needs and Resources Assessment (CNRA) were developed from extensive literature reviews and focus group interviews of family caregivers and social workers in the field. In addition, we collected 317 valid responses from family caregivers of older adults from local non-government organizations in examining the psychometric properties of the CNRA. The results revealed a 12-factor structure that fitted nicely into the conceptual frame of needs and resources domains. Need factors were positively associated with mental health symptoms, while resource factors were positively associated with peace in mind, meaning-making, and personal gain measures. The 36-item CNRA revealed good internal reliability and convergent validity. The CNRA has the potential to be used as a compact yet balanced assessment tool for understanding both the needs and resources of caregivers for human service professionals.

Burden and social support in caregivers of people with kidney disease: a systematic integrative review

The task of providing care to patients with chronic kidney disease can lead caregivers to experience burden. Social support can be a strategy to assist caregivers in coping with the demands of their caregiving task. The article aimed to synthesize the evidence available in the literature on social support and burden among caregivers of adult people with chronic kidney disease. It consists of a systematic integrative review conducted according to what was proposed by Whittemore and Knalf. The databases MEDLINE, Psyco INFO, Web of Science, CINAHL, LILACS, and Scopus were searched, without restrictions on language or year of publication. Nine studies published between the years 2013 and 2022 were included. The caregivers are usually married women of working age. According to the results of the selected articles, it is suggested that social support is an important strategy to deal with the burden stemming from the caregiving task. It is concludes that social support seems to be an important resource for caregivers of people with CKD (including social support provided online). More research with higher methodological rigor is needed to shed light on the depth of knowledge on this topic.