Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review.
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ABSTRACT: Background
Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers' physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of this narrative review is to report knowledge requirements and needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis.Methods
The review followed the Preferred Reporting Items for Reporting Systematic Reviews and Meta-analyses (PRISMA). Five electronic databases were searched: Web of Science, PsycINFO, Embase, Medline, and CINAHL to identify the experiences and unmet needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis.Results
Eighteen papers were included in the review and incorporated a range of methodological approaches. There are several gaps in the current literature around knowledge and informational needs and skills required by informal caregivers, such as signs and symptoms of potential complications, dietary requirements, and medication management. Although most research studies in this review illustrate the difficulties and challenges faced by informal caregivers, there is a paucity of information as to which support mechanisms would benefit caregivers.Conclusion
Informal caregivers provide invaluable assistance in supporting people with ESKD undergoing haemodialysis. These informal caregivers however experience multiple unmet needs which has a detrimental effect on their health and negatively influences the extent to which they can adequately care for patients. The development of supportive interventions is essential to ensure that informal caregivers have the requisite knowledge and skills to allow them to carry out their vital role.
SUBMITTER: Matthews M
PROVIDER: S-EPMC8775298 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Purpose/objectiveThe purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers.Research method/designAn online cross-sectional survey among informal caregivers in English-speaking countries was conducted. Self-reported unmet needs were assessed using an unmet needs measure with the following five unmet needs domains: (1) Health information and support for care recipient; (2) Health service management; (3) Communication and relationship; (4) Self-care; and (5) Support services accessibility. Informal caregivers were asked "In the last month, what was your level of need for help with…", and the ten highest ranked moderate-high unmet needs presented as ranked proportions. Logistic regression modelling examined the factors associated with types of unmet needs.ResultsOverall, 457 caregivers were included in the final analysis. Seven of the ten highest ranked unmet needs experienced by caregivers in the last month were in the Self-care domain, including "Reducing stress in your life" (74.1%). Significant associations were found between younger caregiver age (18-45 years) and reporting moderate-high unmet needs in Health Information and support for care recipient, Health service management, and Support services accessibility (all p's = <0.05).Conclusions/implicationsCaregivers are not experiencing significant differences in unmet needs between countries and caree/care recipient conditions, suggesting that general interventions could be developed to support a range of caregivers across countries. Increased awareness of informal caregivers' unmet needs, particularly for younger caregivers, among health care providers may improve support provision to caregivers.
| S-EPMC7728235 | biostudies-literature
Project description:BackgroundPatients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role.MethodsThis qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention.DiscussionThe needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.
| S-EPMC7527291 | biostudies-literature
Project description:Hemodiafiltration combines diffusive and convective solute removal in a single therapy by ultrafiltering 20% or more of the blood volume processed using a high-flux hemodialyzer and maintaining fluid balance by infusing sterile nonpyrogenic replacement fluid directly into the patient's blood. In online hemodiafiltration, the large volumes of replacement fluid required are obtained by online filtration of standard dialysate through a series of bacteria- and endotoxin-retaining filters. Currently available systems for online hemodiafiltration are on the basis of conventional dialysis machines with added features to safely prepare and infuse replacement fluid and closely control fluid balance. Hemodiafiltration provides greater removal of higher molecular weight uremic retention solutes than conventional high-flux hemodialysis, and recently completed randomized, controlled clinical trials suggest better patient survival with online hemodiafiltration compared with standard high-flux hemodialysis when a high convection volume is delivered. Hemodiafiltration is also associated with improvements in other clinical outcomes, such as a reduction in intradialytic hypotension, and it is now used routinely to treat >100,000 patients, mainly in Europe and Japan.
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Project description:BACKGROUND:This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment. METHODS:Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes. RESULTS:Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N?=?8) and Problems and Needs in Palliative Care questionnaire (N?=?5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies. CONCLUSION:Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.
| S-EPMC6057056 | biostudies-literature
Project description:PurposeInformal caregivers play an important supportive care role for patients with cancer. This may be especially true for pancreatic cancer which is often diagnosed late, has a poor prognosis and is associated with a significant symptom burden. We systematically reviewed the evidence on caregiver burden, unmet needs and quality-of-life of informal caregivers to patients with pancreatic cancer.MethodPubMed, Medline, CINAHL and Embase databases were systematically searched on 31 August 2021. Qualitative and quantitative data on informal caregivers' experiences were extracted and coded into themes of burden, unmet needs or quality-of-life with narrative synthesis of the data undertaken.ResultsNine studies (five qualitative, four quantitative), including 6023 informal caregivers, were included in the review. We categorised data into three key themes: caregiver burden, unmet needs and quality-of-life. Data on caregiver burden was organised into a single subtheme relating to symptom management as a source of burden. Data on unmet needs was organised into three subthemes need for: better clinical communication; support and briefings for caregivers; and help with navigating the health care system. Data on quality-of-life indicate large proportions of informal caregivers experience clinical levels of anxiety (33%) or depression (12%-32%). All five qualitative studies were graded as good quality; three quantitative studies were poor quality, and one was fair quality.ConclusionHigh-quality pancreatic cancer care should consider the impacts of informal caregiving. Prospective longitudinal studies examining multiple dimensions of caregiver burden, needs, and quality-of-life would be valuable at informing supportive care cancer delivery to pancreatic cancer informal caregivers.
| S-EPMC9771849 | biostudies-literature
Project description:BACKGROUND:Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana. METHODS:This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers. RESULTS:Three main themes were derived from this study - motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering. CONCLUSIONS:This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement palliative care for ESKD management in such settings.
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Project description:Rationale & objectiveAttention to geriatric impairments is not routinely provided to older adults receiving dialysis. Our objective was to identify patient and personnel perspectives on experiences with geriatric problems, unmet needs that may affect a patient's ability to maintain his or her functional status, and preferences for design of a geriatric model of care tailored to address the unmet needs.Study designQualitative study using semi-structured interviews and focus groups.Setting & participants14 hemodialysis patients 55 years and older and 24 dialysis unit personnel (eg, nephrologists, nurses, patient care technicians, and social workers) representing 5 dialysis units.Analytical approachContent analysis to identify themes reflecting unmet needs and design considerations for a geriatric model of care for older adults receiving dialysis.Results4 themes (or unmet needs) identified from both patient and personnel transcripts were: (1) mobility, which referred to the insufficient mobility assessment and transportation services; (2) medications, which referred to insufficient attention to appropriate prescribing and medication self-management; (3) social support, which referred to insufficient support for activities of daily living and emotional problems; and (4) communication, which referred to insufficient patient-provider and interprofessional communication, including data transfer across separate health systems. Although participants generally acknowledged that an integrated model of care could result in benefits across all 4 areas of unmet need, they noted that the program design would need to minimize disruption of current workflow and practices in dialysis units.LimitationsThe findings may not be broadly representative of all older adults receiving dialysis and dialysis unit personnel.ConclusionsThere is insufficient attention to mobility, medication management, social support, and communication needs for older adults receiving in-center hemodialysis. Addressing these unmet needs in a geriatric model of care and measuring its effectiveness are areas of future research.
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Project description:Study objectiveTo investigate the association between family cancer caregivers' unmet daily needs and emotional states of depression, anxiety and stress across their care recipient's treatment phases.MethodA cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale.ResultsFamily caregivers' unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6-9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers' higher depression was also associated with greater unmet role management needs, regardless of treatment phases.ConclusionsIntermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers' unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.
| S-EPMC8357113 | biostudies-literature
Project description:Type 2 diabetes (T2D) in youth is a global health concern characterized by an increasing incidence and prevalence, especially among disadvantaged socioeconomic subgroups. Moreover, youth-onset T2D is more aggressive and causes earlier, more severe long-term cardio-renal complications compared with T2D in adults. The therapeutic options available are limited and often inadequate, partially due to the numerous challenges in implementing clinical trials for this vulnerable patient population. Over the last few years, a significant effort has been made to develop new effective drugs for children and adolescents with T2D. Specifically, a number of studies are currently generating new data to address the urgent unmet medical need for optimal management of this disease. This review describes the central features of youth-onset T2D and summarizes the available treatments and ongoing studies in pediatric patients.
| S-EPMC10567925 | biostudies-literature
Project description:BackgroundCancer is a disease that disrupts not only the patient's life, but that of the entire family as well, from a care, organizational, and emotional perspective. Patients share their experience of illness frequently with their informal caregiver (IC), a partner, son/daughter, friend, volunteer, or any other person in the family or social network who offers to support them during their clinical journey. The purpose of this study was to investigate ICs' still unknown cancer experiences through the stories of IC participants in a Literary Artistic Competition the Centro di Riferimento Oncologico di Aviano (CRO) IRCSS organized, and understand the themes that emerged from their texts and hence, the power of expressive writing.Materials and methodsA qualitative study was carried out on literary texts using Mishler's three levels of narrative analysis: thematic (to detect themes and subthemes); structural (to support the thematic level), and performative (to understand the narratives' meaning). In addition, the narratives were classified based on Kleinman and Frank's models. A particular focus was placed on the language of the narratives to identify figures of speech, e.g., metaphors related to cancer.ResultsSeven main themes emerged from the 40 stories' thematic analysis: perceptions of the disease; biographical breakdown; relationships; transformation of the sick body; IC's role; encounter with death; and strength of memory. The ICs' stories also highlighted the strengths and weaknesses of the patient's clinical pathway. ICs are a resource not only for the patient, who, thanks to them, is assured of continuous assistance but also for the healthcare organization, above all because they serve a relational role as a "bridge" between patients and healthcare workers. ICs have important messages to offer to healthcare organizations. If involved adequately, they can provide a strategic strength in supporting patients and healthcare workers themselves. The in-depth analysis of the themes and subthemes in this study led the authors to hypothesize that expressive writing benefit ICs with respect to the possibility of sharing their experiences with others and giving evidence of their role. Their stories are a testimony that can help those who face a similar experience.
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