Informal caregivers'quality of life and management strategies following the transformation of their cancer caregiving role:A qualitative systematic review

Objectives:Globally,informal caregivers caring for cancer patients meet challenges within their caregiving role,which significantly influence their quality of life.This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers.Methods:Following the enhancing transparency in reporting the synthesis of qualitative research(ENTREQ)statement,Wanfang database,the China National Knowledge Infrastructure(CNKI),CINAHL,MEDLINE,PubMed,Cochrane Library,PsycARTICLES and PsycINFO,and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched.Quality of included studies was assessed by the Critical Appraisal Skills Programme(2018)Qualitative Checklist and thematic synthesis was conducted.Results:Of the 8,945 studies identified,6 studies met the inclusion criteria.One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified:"challenges of caregiving".In terms of the management strategies to the role of cancer caregivers,two analytical themes were identified:"self-adjustment"and"seeking for formal and informal support".Conclusions:Cancer caregiving influences informal caregivers'QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving.However,professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers.

The burden and psychosocial impact on immediate caregivers of patients with spinal cord injury in a tertiary health facility,Edo State,Nigeria

Objective:This study aimed to assess the burden and psychosocial impact of spinal cord injury on the immediate caregivers at a tertiary health facility in Benin City,Edo State.Materials and Methods:A descriptive cross-sectional survey design was adopted among 73 family caregivers in the neurological ward of a tertiary health facility using a structured questionnaire as instrument of data collection.Data collected were analyzed using descriptive statistics and multiple logistic regression.Results:Findings revealed that an overall mean of 2.73 indicates that the burden on the caregivers was moderate with a moderate psychological impact(m=2.88)and a high sociological impact(m=3.12).Factors affecting the caregiving provided by immediate caregivers include social and household responsibilities(94.5%),financial situation(89.0%),family support(83.6%),and health status of the caregiver(80.8%).Age(odds ratio[OR]=5.67,95%confidence interval[CI]:1.23-27.17,P=0.027),education(OR=3.75,95%CI:1.05-13.39,P=0.041),and“others”(spouses,siblings,friends,or extended family members)(OR=3.167,95%CI:1.583-6.337,P=0.001)were predictors for high psychological impact while education(OR=0.074;95%CI:0.015-0.370,P=0.001)and caregiving role(OR=3.167;95%CI:0.1.583-6.337,P=0.001)high sociological impact.Conclusion:Majority of the caregivers experience moderate burden,moderate psychological impact,and high sociological impact.Understanding these factors is essential for developing targeted interventions and support services to address the unique needs of caregivers and mitigate the burden of caregiving on their psychosocial health.

Assessing Barriers to Mental Healthcare Interventions for Deaf People in Ghana

While mental health issues are increasingly gaining attention in Ghana, little is known about the situation among deaf people. This study assessed the mental health care needs of deaf people in Ghana. A descriptive design, consisting of interviews and focus group discussions, was used to collect data from 97 participants. Findings indicated that participants had limited knowledge on mental health issues. Mental health stigma, inaccessible mental health information and exclusion from mental health programmes were the major barriers hindering access to mental health care services. This study bridges the knowledge gap and provides evidence for the implementation of deaf-friendly services.

Perception and Management of Hemorroid Disease at the CSREF of the Commune Bamako Mali

This work was a prospective transversal study over 6 (six) months from May 2 to December 31, 2017 at the Reference Health Center of Commune I and the Chérif la Confessional Health Center in Bamako. The aim was to study the knowledge, attitudes and behavioral practices linked to hemorrhoids in Commune I of the Bamako district, to evaluate the frequency of hemorrhoidal disease, to determine the knowledge, attitudes and behavioral practices linked to hemorrhoids among patients, their companions and traditional therapists in Commune I of the district of Bamako and the factors which influence the motivations and decisions to resort to medical-surgical care and traditional medicine in patients suffering from hemorrhoids in order to analyze the results of the management of hemorrhoidal disease at Cs Ref CI. We collected 36 patients with hemorrhoidal disease, 25 caregivers and 15 traditional hemorrhoidal disease therapists. The sex ratio was 1.25 for patients;6.5 for traditional therapists and 1.5 for accompanying people. The average age of the patients was 32.75 years;49 years for traditional therapists and 28.76 years for those accompanying them. 55.6% of patients claim to know about hemorrhoidal disease;100% of traditional therapists and 80% of accompanying people. The dietary factor of hemorrhoidal disease was mentioned by 90% of patients;66.7% of traditional therapists and 100% of caregivers. Most patients initially resorted to traditional treatment out of fear of surgery and its after-effects. The patients were treated medically and surgically.

Community Caregivers’ Experiences and Programmatic Strategies to Improve Active Case Finding in Community Tuberculosis Care in Botswana 2016-2021

Background: The community tuberculosis care program was started to reduce the impact of TB and increase successful treatment outcomes, thus contributing to meeting WHO targets on TB. According to the Botswana Ministry of Health, community tuberculosis care was introduced with the main goal of reducing tuberculosis-related morbidity and mortality among communities through the expansion of direct observed therapy and community involvement to community settings. The community caregivers were to support tuberculosis patients throughout their treatment period until they were cured or had completed their treatment. Settings: Two major cities of Botswana, Francistown and Gaborone, with more than twenty-two health clinics offering tuberculosis care. Objective: To investigate community caregivers’ experiences and identify programmatic strategies to improve active TB case findings under the community TB care (CTBC) program in Botswana during 2016-2021. Methods: We adopted a descriptive qualitative research design, followed by convenience purposive sampling. We obtained consent and interviewed 40 participants who met the inclusion criteria, 16 out of 73 in Gaborone and 24 out of 38 from Francistown. Results: We interviewed 40 caregivers with a mean age of 43.4 years. Accepting the caregiving role was identified as the main experience by more than two thirds of the caregivers. While at least more than two-fifth felt obligated to care for the patient at home due to personal relations. More than half of the respondents found caregiving difficult or frustrating due to some challenges encountered during the caregiving role. Behavioral modifications were suggested under different subthemes as strategies to improve active case finding. [-rId13-]Conclusion: Acceptance was the major experience in CTBC. Intensification of known programmatic strategies was suggested by caregivers to improve tuberculosis active case finding in CTBC.

Modern Ideas of Caring in Nursing Practices

For effective nursing practice,it is essential to have a strong foundation in ethical principles and a shared understanding of nursing and caring concepts.Emphasizing compassion in nursing is crucial.This study aimed to elucidate the core ideals of compassion,ethics,and care in nursing practice.Nurses can foster a deeper sense of personal significance in their caregiving relationships by demonstrating attentiveness,openness,and respect and treating each patient as an individual.Through self-reflection,nurses can develop a greater understanding of nursing,compassion,and ethical principles within the caregiving context.This reflective practice enables nurses to connect more profoundly with their patients,enhancing the quality of care.By integrating these core ideals into their practice,nurses not only improve patient outcomes but also find greater personal fulfilment in their professional roles.Thus,cultivating compassion and ethical awareness is fundamental to the holistic and effective practice of nursing.

How Music Intervention Lowered Participants’ Morning Cortisol—Qualitative Case Stories

Non-pharmacological interventions for improved home care of persons with dementia and their family caregiver are and will be increasingly important for society. A music intervention study was performed on persons with persons with dementia and family caregiver. The persons with dementia and family caregiver were instructed to choose a daily routine for joint listening to recorded music. They selected the music they were interested in from a menu. The intervention period lasted for two months. Both persons with dementia and family caregiver provided daily saliva samples for the assessment of stress-related steroid hormones. In previous reports we have reported that the morning cortisol levels decreased significantly among the family caregiver when the intervention group was compared to a control group. In the present study we report narratives from four dyads, two of whom with beneficial effects of the music intervention, one dyad with no clear beneficial effects and one dyad with mixed results. The narratives illustrate the strong cohesive effect that the joint music listening could have, leading to improved social functioning paralleled by decreased morning cortisol levels particularly in the family caregiver. The narratives also illustrate reasons for failed effects.

Hospital Discharge Plan in Family Caregivers of Children with Coronary Artery Aneurysm in Kawasaki Disease: A Review

Objective:The study reviews status,main time nodes and hospital discharge services for family caregivers of children with Kawasaki disease complicated by coronary artery aneurysm to provide references for the development of hospital discharge preparation services for medical personnel and patients.Background:CAL of Kawasaki disease is the main cause of acquired heart disease in children,but there is not enough research on the readiness for hospital discharge.Design:Systematic review of observational and interventional studies.

Research Progress on the Mental Toughness of Family Caregivers of Children with Malignant Solid Tumors

The physical,emotional,and caregiving quality of caregivers for children with malignant solid tumors is significantly influenced by mental toughness.The definition of mental toughness,study methods,primary influencing factors,and intervention strategies for the mental toughness of caregivers of children with malignant solid tumors will be examined in this paper.To improve the mental toughness of caregivers of children with malignant solid tumors,it is recommended that future studies enhance the number of intervention research methods and establish particular evaluation tools.

Progress in Investigating the Current Mental Health Status Among Caregivers for Surgical Oncology Patients

This article aims to discuss the current state and research progress concerning the mental health of caregivers for surgical oncology patients.The goal is to offer insights that can serve as a reference for further enhancements in caregivers’mental well-being.This article conducts a comprehensive review and analysis of recent studies on the mental health of caregivers for patients undergoing oncologic surgery.These studies reveal that caregivers commonly grapple with mental health issues,including anxiety,depression,and stress.These problems are closely linked to the stress of the patient’s condition and treatment,the caregiver’s own mental strain,and a lack of social support.In addition,the mental health status of caregivers significantly influences the patient’s treatment and recovery process.Implementing various interventions,such as mental health education,services,the establishment of mental health support teams,and engagement in mental health promotion activities,can contribute to the improvement of caregivers’mental well-being.This,in turn,has the potential to enhance treatment outcomes and the overall quality of life for patients.

Positive aspects of caregiving in schizophrenia: A review

Schizophrenia is a severe mental illness which is associated with significant consequences for both the patients and their relatives. Due to chronicity of the illness, the relatives of patients of schizophrenia have to bear the main brunt of the illness. Studies across the world have evaluated various aspects of caregiving and caregivers such as burden, coping, quality of life, social support, expressed emotions, and psychological morbidity. In general the research has looked at caregiving as a negative phenomenon, however, now it is increasingly recognised that caregiving is not only associated with negative consequences only, also experience subjective gains and satisfaction. This review focus on the conceptual issues, instruments available to assess the positive aspects of caregiving and the various correlates of positive aspects of caregiving reported in relation to schizophrenia. The positive aspect of caregiving has been variously measured as positive caregiving experience, caregiving satisfaction, caregiving gains and finding meaning through caregiving scale and positive aspects of caregiving experience. Studies suggests that caregivers of patients with schizophrenia and psychotic disorders experience caregiving gains(in the form of becoming more sensitive to persons with disabilities, clarity about their priorities in life and a greater sense of inner strength), experience good aspects of relationship with the patient, do have personal positive experiences. Some of the studies suggest that those who experience greater negative caregiving experience also do experience positive caregiving experience.

Reliability and validation of the Positive Aspects of Caregiving scale among Japanese caregivers of people with dementia

Objectives:This study aimed to validate the Positive Aspects of Caregiving(PAC)scale's psychometric properties among Japanese informal caregivers of people with dementia.Methods:A cross-sectional research design was used.Data were collected from the Kinki region of Japan during January 2019 and July 2019.Translation and back-translation were performed to acquire the optimal translation of the PAC scale.In total,194 participants responded to questionnaires that included the Japanese version of the PAC scale and the Geriatric Depression Scale(GDS).Reliability was evaluated by examining the internal consistency and test-retest reliability.Exploratory factor analysis with maximum likelihood estimation and oblique rotation was performed to assess the PAC scale structure.Concurrent validity was determined using Pearson's correlation coefficient.Results:The final version of the Japanese version of the PAC scale contained nine items.Exploratory factor analysis revealed two factors(Living an enriched life and Self-usefulness).The Cronbach's α coefficient of the total scale was 0.895,the subscales Cronbach's α coefficient were 0.896 and 0.823.The intraclass correlation coefficient for test-retest reliability was 0.721,indicating acceptable reliability.PAC was significantly correlated to GDS(r=—0.54&P<0.01).Conclusions:This study found that the Japanese version of the PAC scale was a suitable scale to measure PAC among Japanese caregivers of people with dementia.However,the construct differed from the original model.This scale could help health-care professionals understand the degree of caregivers'recognition about dementia care and support those with a low degree of positive aspects of caregiving.

The Relationship among Caregiver Burden, Demographic Variables, and the Clinical Characteristics of Patients with Parkinson’s Disease—A Systematic Review of Studies Using Various Caregiver Burden Instruments

Caring for a person with Parkinson’s disease (PD) extends far beyond the ordinary exchange of assistance among people in a close relationship. Caregivers must learn to cope with the patient’s increasing disability and loss of independence. The aim of this systematic review was to critically assess and summarize the evidence of the influence of the demographic and clinical characteristics of patients with PD on caregiver burden by means of a caregiver burden instrument. In order to identify articles, electronic databases and reference lists were searched using the search word “Parkinson’s disease” in combination with “caregiver” or “carer” and with “burden” or “distress” or “stress” or “strain”. Thirty one articles were deemed eligible for inclusion. The methodological quality of the studies was evaluated. No studies were excluded due to low quality. The results revealed similar associations among caregiver burden, demographic variables and patient characteristics, across different caregiver burden instruments and various clinical scales. Higher PD stage and functional disability are the non-motor characteristics that contribute the most to caregiver burden. However, when comparing the impact of patient motor and non-motor symptoms, several studies found that mental symptoms had a stronger impact on caregiver burden than motor symptoms. No association was observed between caregiver burden and patient and caregiver demographics with the exception of the sub-scale analysis of caregiver burden in various age groups. Interpreting the results of studies that employ a range of different clinical assessment scales and burden instruments makes it challenging to provide a valid summary of caregiver burden in PD. The most commonly used analysis methods contribute little information about burden variation across caregiver groups or which areas are the most burdensome for caregivers. There is a need for a more uniform use of recommended instruments and for longitudinal studies.

Association between Caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Systematic Review

We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers provide to their loved ones with AD. We obtained studies focusing on the care that these caregivers provide for their family members with AD. Our outcome of interest was level or quality of care and the independent variable was caregiver QoL. We extracted data in tabular form and used a narrative synthesis approach to describe our findings. Only one relevant study was included in the review. Overall, the evidence was equivocal regarding the associations between caregiver QoL and the level/quality of care in AD.

Distance caregiving a family member with cancer:A review of the literature on distance caregiving and recommendations for future research

Distance caregivers(DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer,from a distance.Unlike local caregiving research,distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies.To date,DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams.Because they are not usually present at medical appointments,DCGs do not receive first-hand information from the health care team about the patient's condition,disease progression,and/or treatment options.These caregivers report feeling left out of important family discussions.They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more.The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer.Family-centered care,attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care.In this manuscript,the sparse literature on distance caregiving is reviewed.Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

The impact of an educational intervention in caregiving outcomes in Jordanian caregivers of patients receiving hemodialysis: A single group pre-and-post test

Objectives:Chronic renal failure affects the physiological,psychological,functional ability,and independent status of the patient,which might result in a burden to the family members caring for them.The objective of the study was to identify caregivers'level of burden and establish the impact of educational intervention programs on caregiving outcomes.Methods:This was a one-group pre-test post-test study conducted between April and August 2017 on family caregivers of hemodialysis patients.A convenient sample of 169 caregivers was used.A sociodemographic questionnaire,the OBCS,and BCOS were utilized for data collection,which occurred at baseline and two weeks post-intervention.The collected data were analyzed using SPSS where t-test determined the impact of the intervention.Results:Caregivers were found to be moderately burdened(M=2.73,SD=0.23)and their lives had changed for the worst as a result of caregiving(M=3.17,SD=5.89).There were significant differences in caregiving outcome scores before and after the intervention(P<0.05).Conclusion:Caring for patients receiving hemodialysis adds extra responsibilities to the caregivers'schedule thus leaving them substantially burdened.Educating caregivers on the required care eased their burden and improved caregiving outcomes.Recommendations are made that healthcare professionals should assess caregiver burden,and address their physical and mental health needs.Caregivers should also be regularly educated on the regular caregiving tasks to ease their burden.

Caregiving in Alzheimer’s Disease: Research Designs &Considerations

Alzheimer’s disease and related dementias have made a considerable impact on society, and can take a significant toll on familial caregivers. Recent successful caregiving interventions suggest a promising future, though informed research design, a priori, is paramount in ensuring quality results that the Government and public may use to make informed policy and personal healthcare decisions. Research designs including basic science, randomized controlled trials (RCTs), qualitative, and quasi-experimental designs serve as the primary basis for discussion with literary examples and caveats.

Caregiving, Family Burden and Medication Adherence

Caregivers are an essential component of any community. Advances in medicalcare have brought about an increasing population which is reliant on care, and communities deal with most of the burdens and practicalities of public health issues. In order to provide efficient support services, we need to know the challenges of caregivers so that we can address what types of support they require. The current study examines whether those who have a mental health difficulty and are either engaged in caregiving duties or perceive family burden may be less adherent to their medications in comparison with those who also have a mental health difficulty but do not perceive family burden or perform caregiving. Data used was from the National Comorbidity Study Replication (NCS-R), which examines the mental health profile of the American population. The group examined were those who received the family burden interview, and indicated that they were taking a prescription medication for a mental health difficulty under the supervision of a health professional (N = 489). Zero inflated Poisson regression showed that caregiving/family burden was unrelated to adherence to supervised prescription medicines for mental health difficulties, regardless of the kinship of who was ill, or the nature of their illness (physical versus mental). Adherence to prescription medications for mental health difficulties does not appear to be one of the challenges faced by this group. Findings are discussed in terms of the economic and moral importance of health professionals identifying and understanding the challenges experienced by caregivers/those reporting family burden. This is necessary so that appropriate interventions and support services can be targeted, and further research plays an important role in achieving this objective.

Informal Caregiving for Persons with Chronic Conditions: Trends and Considerations

Aging adults with chronic conditions rely heavily on an informal network of caregivers to remain within their communities of choice. This reliance can take a significant toll on caregivers through the lens of physical and psychological problems, financial issues, and social isolation. These variables may then lead to less desirable outcomes for care recipients. This review highlights existing support services in their many forms, including: psychosocial interventions, environmental interventions, respite care, and health information technology as a method of delivery. Given the current trend with informal caregivers assuming increased responsibility in healthcare, programs and services supporting these caregivers must be understood and trialed to ensure that their needs are not overlooked.

Long-Term Impact of Caregiving and Metabolic Syndrome with Perceived Decline in Cognitive Function 8 Years Later: A Pilot Study Suggesting Important Avenues for Future Research

The chronic stress of caregiving has been associated with increased risk for cognitive decline and dementia. One theoretical model suggests that a group of risk factors known as the metabolic syndrome MET_SYN (e.g., hypertension, poor glucose regulation, central obesity, and high triglyceride levels) that have demonstrated associations with both stress and cognitive decline, may mediate the association between caregiver stress and cognitive decline. It is also possible that caregiving may moderate the association between MET_SYN and cognitive decline. The present study examined these two potential models. The study sample consisted of 53 caregivers for a relative with dementia and 24 participants who did not have caregiving responsibilities at baseline. We examined associations among caregiving history (yes/no), self-reported decline in cognitive function (the AD8) at follow-up, and a MET_SYN factor comprised of increased systolic blood pressure (SBP), glycosylated hemoglobin concentration (HbA1c), waist circumference, and triglyceride levels at baseline when caregiving was assessed. MET_SYN was associated with AD8 (p = 0.010). Caregiving history was not directly associated with AD8 ratings, however, caregiving did moderate the association between MET_SYN and AD8 (p = 0.043) assessed 8 years later. In caregivers MET_SYN scores reflecting higher risk were associated with scores on the AD8 indicting decline, whereas, in controls MET_SYN was unrelated to AD8 assessment. Thus, it can be concluded that caregiver stress may increase the association between metabolic risk factors and decline in cognitive functioning up to 8 years later.