Challenges Of Informal Caregivers Research Articles

Informal caregivers’ negative affect: The interplay of caregivers’ resilience, aging anxiety and burden

Objectives This study focused on the negative affect of informal caregivers of older adults. In a novel investigation, the interplay of aging anxiety, caregiving burden, and resilience as a protective factor was examined, suggesting that aging anxiety and caregiving burden are mediators for the link between resilience and negative affect. Methods In a cross-sectional design, 191 Israeli informal caregivers of older adults (65+) participated in the study. They completed questionnaires that assessed demographic and caregiving characteristics, resilience, aging anxiety, caregiving burden, and negative affect. Results The findings showed a serial mediation process in which higher resilience predicted lower caregiving burden, which subsequently predicted lower aging anxiety, which subsequently predicted lower negative affect. However, the indirect path from resilience to aging anxiety and negative affect was non-significant. Conclusion Based on this study’s findings, the aging anxiety of informal caregivers of older adults should be professionally addressed in the early stages of caregiving because it contributes to the caregiving burden and negative affect. Additionally, resilience should be enhanced by psycho-social interventions tailored to address informal caregiver challenges that often induce caregiving burden and negative affect.

Challenges faced by informal caregivers of patients in a Nigerian hospital and implications for social work

Summary Unlike in the global-north where care of hospital in-patients is within the remit of the nursing and social care staff, the burden of care in most Nigerian hospitals is borne by informal caregivers who are relatives, family members or friends of the in-patients. Their unpaid roles in ensuring health and wellbeing of in-patients cannot be overstated, yet they remain often invisible to and unappreciated by hospital authorities. We used in-depth interviews to glean lived experiences of 24 informal caregivers in a tertiary hospital in Nigeria. This study adopted phenomenology as its overall theoretical underpinning that guided data collection and analysis. As also recommended by phenomenology, thematic clusters were employed for analysis. Findings The narratives of the respondents revealed that caregiving constitutes a lot of ordeals which are worsened by some unwholesome conditions in the hospital for informal caregivers who seem to be left to fend for themselves. Three overarching themes emerged from the interviews which are, challenges of informal caregivers, conditions that exacerbate the challenges, and steps to improve coping capacities. Applications Informal caregivers remain an essential force in the care of hospitalised patients yet are poorly attended to by healthcare authorities. There is a need to pay attention to their needs through a comprehensive health policy to accommodate them as a priority concern in the care of patients. Social workers can be meaningful in scaling up responses and response plans to that effect. Hence, the need to advance the professionalisation of social work in Nigeria deserves speedier attention.

Using an Electronic App to Promote Home-Based Self-Care in Older Patients With Heart Failure: Qualitative Study on Patient and Informal Caregiver Challenges.

BackgroundHeart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.ObjectiveThe aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.MethodsWe recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.ResultsSix themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention’s inclusion of volunteer and nurse assistance.ConclusionsPatients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF.

Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project

BackgroundProviding informal care may affects caregivers' life in different ways. Determining the needs of caregivers and supporting them can improve both the quality of life of the caregivers, as well as the elderly they take care of. ObjectiveTo explore the experiences and needs of the informal caregivers in four countries. DesignQualitative research method was used in the study. MethodsThe qualitative data was collected through focus groups and individual interviews between December 2016–May 2017. In all countries interviews were conducted in the mother language of the informants.Informants of the qualitative research were adult people who take primary care of an individual with chronic diseases, aged 65 years or older. Data were collected from 72 informal caregivers from four European countries. Inductive content analysis was performed. ResultsInformal caregivers identified 2 themes, 5 subthemes, 19 categories and 7 subtcategories. The themes highlighted two major issues: informal caregiver's challenges and needs related to the management of care of elderly and caregivers' personal needs. ConclusionThe important and charming results of the present study are, difficulties of managing caregiver's own life, and coping with emotions are common in four countries. Identifying challenges and needs of informal caregivers enable healthcare professionals to develop care strategies and plan interventions focused to support and help to reduce the burden of care for elderly with chronic diseases.

Informal Caregiver Challenges for Advanced Cancer Patients During End-of-Life Care in Johannesburg, South Africa and Distinctions Based on Place of Death

ContextIn sub-Saharan Africa, late diagnosis with cancer is common. Many dying patients rely on family members for care; little is known about the challenges African informal caregivers face. ObjectivesTo better understand the challenges of informal caregivers at the end of life in South Africa, both at home and in inpatient facilities. MethodsWe included advanced cancer patients and caregivers from a public hospital in Johannesburg, South Africa. Study nurses interviewed patients and caregivers about their experiences. Using univariate and multivariate analyses, we determined the factors associated with greater caregiver difficulty, focusing on patients dying at home vs. in inpatient facilities. ResultsAmong 174 informal caregivers, 62 (36%) reported “a lot” of challenges. These caregivers struggled most with keeping the patient clean (16%) and with patient interactions (34%). Symptoms associated with greater difficulty included pain (odds ratio [OR] 2.4 [95% CI 1.2–4.7]), urinary incontinence (OR 2.3 [95% CI 1.1–4.9]), fecal incontinence (OR 2.4 [95% CI 1.0–5.7]), insomnia (OR 2.9 [95% CI 1.3–6.9]), fatigue (OR 6.3 [95% CI 1.8–21.6]), extremity weakness (OR 2.9 [95% CI 1.3–6.9]), shame (OR 4.2 [95% CI 1.5–12.0]), and sadness (OR 2.3 [95% CI 1.1–4.8]). Caregivers of patients dying at home reported the greatest difficulty with patients' physical symptoms; caregivers of those dying in facilities reported the greatest difficulty with emotional symptoms. ConclusionInformal caregivers of patients dying at home reported challenges with practical functional care; this effect was reduced in the inpatient setting. Skills training for these caregivers could relieve some of this burden.

Perceived unmet needs of informal caregivers of people with dementia in Singapore

This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers' needs checklist based on the findings. Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers' experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers' perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers' needs for dementia. The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed. Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.

What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention

Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers' experiences. Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care. Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient's condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems. Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.