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.

Progressive exhaustion:A qualitative study on the experiences of Iranian family caregivers regarding patients undergoing hemodialysis

Objective:The aim of this study was to explore the burden of care for patients undergoing hemodialysis from the experiences of family caregivers.Methods:In this qualitative study,a content analysis approach was used for data collection and analysis.Participants were 16 family caregivers selected through purposive sampling from four medical education centers affiliated with Ahvaz Jundishapur University of Medical Sciences,Iran.Semi-structured interviews were held to collect data.Results:Four categories were developed as follows:‘care challenges’,‘psychological vulnerabilities’,‘the chronic nature of care’and“care in the shade”.The categories led to the development of the main theme of‘progressive exhaustion’experienced by the family caregivers during the provision of care to patients undergoing hemodialysis.Conclusion:Family caregivers have a significant role in the process of patient care,and this role leads them to progressive exhaustion;therefore,the overall health of the caregivers should be taken into account and more attention should be paid to their quality of life,social welfare,and satisfaction level.

The lived experience of family caregivers caring for patients dependent on life-sustaining technologies

Purpose:The purpose of this study was to describe the meaning of the lived experience of family caregivers caring for their loved ones who were dependent upon life-sustaining technologies while in the hospital.Methods:This study followed van Manen's hermeneutic phenomenological approach to generate and analyze data to describe the experience of ten family caregivers who met the following inclusion criteria:a family member who participated actively in caring for the loved one who was dependent upon technologies for human care.Data were collected using individual in-depth interviews.The interview transcriptions were analyzed using van Manen's phenomenological approach,while Lincoln and Guba's criteria were used to establish trustworthiness of the study.Findings:Four thematic categories structured the meaning of the experience:Being an invisible person;supporting patients'wholeness;struggling to trust technologies for human care;and living in uncertainty.These thematic categories were reflective of Van Manen's four lived worlds of body,relation,space,and time.Conclusion:Understanding the experience of family caregivers challenges nurses to express their technological competencies in caring more fully in their human care.Locsin's theory of Technological Competency as Caring in Nursing was used to explain and describe the meaning of the experiences of family caregivers caring for patients who were dependent upon technologies for human care,and foster nursing practice as caring in nursing.

Relation between Family Functioning and Quality of Life among Family Caregivers of Patients with Terminal Cancer Hospitalized in General Wards

Caring for a patient with terminal cancer poses difficulties for family caregivers. Although families of patients with cancer have been classified by type, little is known about the relation between family functioning and quality of life (QOL) in family caregivers. This study aimed to develop a typology of family functioning in family caregivers of patients with terminal cancer and then examine the relation between the family functioning and QOL of family caregivers. From December 2013 to August 2014, fifty-one family caregivers of patients with terminal cancer were recruited at three hospitals in Tokyo, Japan. Perceptions of family functioning were assessed with the Family Relationship Index, and its three subscores were classified into three groups by cluster analysis. Caregivers’ QOL was measured with the Caregiver Quality of Life Index-Cancer. The average total FRI score among 51 caregivers was 8.5 (SD = 2.8). Family functioning was categorized into three clusters: supportive (n = 12), communicative (n = 30), or conflictive (n = 8). Their QOL was categorized into two groups: the communicative group, with relatively high confliction, showed high QOL comparable to the supportive group. Family functioning in the families of patients with terminal cancer hospitalized in general wards was not good. For improving the QOL of family caregivers, it may be important for the family members to express their feelings and distress if they have conflicts.

What Contributes to Satisfaction with Care for Family Caregivers of Terminal Cancer Patients Admitted to General Wards? A Qualitative Study

Satisfaction with care is an important indicator for family caregivers of patients with terminal cancer and is linked to the quality of life. Despite this, few studies have examined the aspects of satisfaction with care of family caregivers of inpatients with cancer in general wards. This qualitative study aimed to elucidate the elements of satisfaction with the care that inpatients with terminal cancer in general wards and their family caregivers receive from medical staff, as perceived by the family caregivers. Semi-structured interviews were conducted with 10 family caregivers of inpatients with terminal cancer. Participants were asked about the care received until then from medical staff, the features of satisfactory care, and the aspects of care they felt were unsatisfactory or could become satisfactory with improvement. The data were analyzed with the content analysis method and the six categories were extracted. For family caregivers of inpatients with terminal cancer in general wards, along with the care identified as important in palliative care, the methods of alleviating symptoms and explaining the patient’s condition were also important. The results highlight the importance of determining a patient-oriented approach and explanations together with each patient and family caregiver, based on an understanding of the long treatment process.

The Impact of Alzheimer’s Disease on the Life of Family Caregivers: A Phenomenological View

The objectives of this study are to describe the perception of caregivers about the process of caring for elders with Alzheimer’s disease, analyze the impact of the care process on the caregiver’s life from the biological and emotional aspects, and discuss the changes in the caregiver’s life in the light of Gestalt Therapy. This was a qualitative and descriptive study with a phenomenological analysis. The results showed that family caregivers are in a vulnerable situation because they are usually women who are also aging or are already elderly, who do not receive the necessary support to meet their needs. Because of the demands of providing care for Alzheimer’s patients, caregivers fail to consider their own issues and develop more mechanized ways of relating to their situation, using crystallization as a defense mechanism. Stress and isolation can adversely affect the physical and mental health of caregivers.

The status of caregiver burden and influencing factors among family caregivers in maintenance hemodialysis patients

Objective: To investigate the status of caregiver burden and influencing factors among family caregivers in maintenance hemodialysis (MHD) patients under the background of coronavirus disease 2019, and to provide references for nursing intervention. Methods: From May to August 2020, 237 convenient samples were recruited from the Hemodialysis Centers of The Renmin Hospital of Wuhan University and Zhongnan Hospital of Wuhan University. Questionnaires were conducted with the General Information Questionnaire, Zarit Burden Interview (ZBI), Sense of Coherence-13 (SOC-13) and Perceived Social Support Scale (PSSS). Multiple linear regression was used to analyze the influencing factors of caregiver burden. Results: The score of ZBI among the caregivers was (36.05 ± 14.09). The ZBI of family caregivers was negatively correlated with SOC-13 and PSSS (P < 0.01). Multiple regression results showed that professional status of MHD patients, activity of MHD patients, comprehensibility, manageability and other support were the main influencing factors of their caregiver burden (P < 0.01), which explained 44.4% of the variance. Conclusion: The caregiver burden among family caregivers of MHD patients was above average under the background of COVID-19, which indicated that they felt more burden in the process of caring. Medical staff could give targeted support and guidance in combination with their influencing factors to reduce their caregiver burden further.

Relationship between activities of daily living and depression among older adults and the quality of life of family caregivers

Objective： The purposes of this study were to explore the associations of activities of daily living （ADL） and depression among older adults with family caregivers1 quality of life and provide evidence for improving family caregivers＇ quality of life.Methods： Older adults （n=395） and their family caregivers （n=395） were selected as participants. The ADL scale and Geriatric Depression Scale were used to assess ADL and depression among older adults, and the 36-Item Short Form Health Questionnaire （SF-36） was used to assess family caregivers1 quality of life. Descriptive statistics and multiple linear regression were used to analyze the data.Resslts： The older adults’ ADL and depression scores were 21 ±7 and 11 ±6, respectively. Approximately 69.9% of older adults had declining or severely impaired ADL, and 47.1% had mild or moderate-to-severe depression. Family caregivers＂ mean quality of life score was 529±100. There was a negative correlation of older adults＇ ADL and depression with caregivers＇ quality of life. The correlation coefficient between ADL and the SF-36 mental component summary score was stronger than it was with the SF-36 physical component summary score.Conclusions： The ADL and depression of older adults influenced family caregivers＇ quality of life. Psychological health deserves closer attention, especially that of caregivers of disabled older adults.

Effect of Narrative Therapy on the Psychological Status and Life Quality of Family Caregivers of Adolescents with First-episode Depression

[Objectives]The research aimed to explore the effect of narrative therapy on the negative emotion,quality of life,care burden and nursing satisfaction of family caregivers of adolescents with first-episode depression.[Methods]Using convenient sampling method,the family caregivers of the adolescents with first-episode depression hospitalized in the Children and Adolescents Psychology Department of a GradeⅢLevel A hospital in Shiyan City,Hubei Province from July 2021 to April 2022 were selected as the research objects.The coin toss method was used to determine the test group and the control group,with 60 cases in each group.The control group received routine nursing care,and the experimental group implemented narrative therapy on this basis.Self-rating anxiety scale,self-rating depression scale,health status questionnaire(SF-36),and caregiver burden inventory were used to evaluate the anxiety and depression level,quality of life,and care burden level of the caregivers before and after the intervention.The nursing satisfaction questionnaire was used to evaluate the nursing satisfaction to the caregivers after the intervention.[Results]After 8 weeks of intervention,4 cases fell off in the control group and 3 cases fell off in the intervention group.The scores of anxiety and depression in the two groups were lower than those before intervention,and the scores in the test group were significantly lower than those in the control group(P<0.05).The life quality scores of life vitality,emotional function and mental health dimensions were higher than before the intervention,and the scores in the test group were significantly higher than those in the control group(P<0.05).The total score of care burden and the scores in time dependence,development limitation and physiological dimension of the two groups were lower than those before intervention,but the difference was not statistically significant(P>0.05).[Conclusions]Narrative therapy can effectively alleviate the negative emotions of family caregivers of adolescents with first-episode depression,and improve their quality of life and nursing satisfaction,but not their care burden.

Exploring the Experiences of Personal Recovery among Mental Health Consumers and Their Caregivers Receiving Strength- Based Family Interventions

Background:This study explored the personal recovery of consumers and their caregivers receiving the strength-based family intervention.Method:A three-year project was implemented with 43 dyads from 5 community psychiatric rehabilitation agencies in northern,central,and Southern Taiwan.This paper presents qualitative analysis with a focus on describing the experiences of personal recovery.To gain a deeper understanding of the participants’personal experiences and perspectives,semi-structured in-depth interviews were conducted on three occasions(six months after the inception of the experiment,18 months after,and when the participants left the services of this study).Over the three occasions,a total of 27 consumers and 28 caregivers were interviewed.Data analysis was conducted based on grounded theory.Results:Consumers expressed positive experiences in the domain of the recovery process(positive sense of self,taking responsibility,and better coping)and on the objective indicators of recovery(functioning,interpersonal interaction,and family relationship).Caregivers experienced lessened psychological burdens.They also revealed improvements to their sense of self(recovery process)and subjective indicators of recovery outcomes,including feeling empowered and having a better quality of life.Moreover,they had better interaction with consumers(objective domain of recovery).Conclusion:These findings suggest that the strength-based perspective is an acceptable,culturally-compatible approach among Chinese mental health consumers and their caregivers.The investigators suggest that additional resources would be necessary to support a change in the service system in Taiwan so that family-based services can be provided to promote the recovery of mental health consumers and their family caregivers.

Psychological distress, family functioning, and social support in family caregivers for patients with dementia in the mainland of China

Background Dementia is a chronic progressive disease seriously affecting the patient＇s daily life and working skills and may cause the patient disability and dependence. Thus, caring for dementia patients inevitably falls on families in the mainland of China. Unfortunately, there are rarely enough reports available about mental health and social support in family caregivers for domestic dementia patients. This study aimed to investigate the changes in psychological status and social support in domestic dementia family caregivers and hope the government and relevant departments pay more attention to the family caregiver＇s psychological change, which may be better for dementia patients. Methods Fifty-eight immediate family caregivers （family group） for dementia patients, including 21 Alzheimer＇s disease （AD） and 37 vascular dementia inpatients, were recruited for interview. Fifty-eight age- and sex-matched normal volunteers （control group） were also interviewed in the same period. The psychiatric distress was assessed by the Symptom Checklist 90 （SCL-90）, family functioning was assessed by the Family Assessment Device （FAD）, and the social support was assessed by the Multidimensional Scale of Perceived Social Support （MSPSS）. Group differences were analyzed using unpaired t test for comparison of SCL-90, FAD, and MSPSS mean scores. Pearson＇s correlation coefficient was used to find the association between the various dimensions of FAD and the social support from dementia family caregivers. Results Except phobic anxiety dimension, the other dimensions of SCL-90 mean scores were significantly higher in the family group than those in the control group （P 〈0.05）. In the family group, except affective involvement dimension, the other dimensions of FAD mean scores were within the scope of unhealthy family functioning. Significant differences in problem solving, communication, roles, affective responsiveness, behavioral control, general functioning, and the total MSPSS mean scores were seen between the family group and the control group （P 〈0.01）. Except affective involvement dimension, the other dimensions of the family functioning correlated with the perceived social support in the family group （P 〈0.05 or 0.01）. Conclusions Dementia patients have a negative effect on families＇ mental health in the mainland of China. Dementia family caregivers experience defected family functioning and low levels of social support.

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.

Caregiver empowerment program based on the adaptation model increase stroke family caregiver outcome

Objective:Post-stroke disability and psychosocial disorders cause burdens for the families of stroke patients,including physical and financial burdens.The physical and psychological health of family caregivers determines the quality of care they provide to patients.The purpose of this study was to identify the effectiveness of the Caregiver Empowerment Program Based on the Adaptation Model(CEP-BAM)in increasing the family caregiver’s coping ability against various problems and reducing their burden while caring for the stroke patient.Methods:This research was a quasi-experimental study with pre-and post-test control group design.The intervention group received CEP-BAM,while the control group received a conventional intervention in the form of a discharge planning program for family caregivers in the hospital.The samples were caregivers who care for and facilitate the recovery of stroke patients during their convalescence at home.We selected the samples from the population using the stratified random sampling method.The number of samples completed in the study was 40 in the intervention group and 40 in the control group.Measurement of outcome variables(coping and caregiver burden)was carried out 4 times including pre-test before the intervention,post-test 1 at 4 months after the intervention,post-test 2 at 5 months after the intervention,and post-test 3 at 6 months after the intervention.Results:There were significant differences in caregiver’s coping(P=0.016)and caregiver’s burden(P=0.009)in measurements between the two groups.Conclusions:The CEP-BAM interventions were effective in increasing adaptive coping strategies and reducing the burden of caregivers 4 months and continuing 6 months after the intervention.

Effect of family caregiver nursing education on patients with rheumatoid arthritis and its impact factors:A randomized controlled trial

BACKGROUND Rheumatoid arthritis(RA)is a common autoimmune disease.Nursing education for family caregivers is considered a workable and effective intervention,but the validity of this intervention in RA has not been reported.AIM To explore whether family caregiver nursing education(FCNE)works on patients with RA and the factors that influence FCNE.METHODS In this randomized controlled study,a sample of 158 pairs was included in the study with 80 in the intervention group and 78 in the control group.Baseline data of patients and caregivers was collected.The FCNE intervention was admi-nistered to caregivers,and inflammation level indicators,disease activity indicators and mood disorder indicators of patients were followed up and analyzed.RESULTS Baseline characteristics of the intervention and the control groups had no significant difference.Indicators were significantly reduced in the intervention group compared to the control group.The intervention group showed significant differences in stratification of relationship,education duration and age.CONCLUSION The effect of FCNE on RA is multifaceted,weakening inflammation level,alleviating disease activity and relieving mood disorder.Relationship between caregiver and patient,caregiver’s education level and patient’s age may act as impact factors of FCNE.

Experiences of implementing a coping mechanism for the elderly who face chronic diseases while living with the family: a phenomenology study

Objective: Physical and psychological stress causes harm to the health status of the elderly with chronic diseases. This study aimed to understand coping mechanisms of the elderly with chronic conditions who live with their family. Methods: This study was conducted using a descriptive phenomenology method from the experience of 13 older adults with chronic disease. The study processes were interviewed, tape recorded, transcribed, and explored from the transcripts using Colaizzi’s descriptive phenomenological method. The steps of the descriptive phenomenology process are bracketing, intuiting, analyzing, and describing. Results: The coping mechanisms used by the elderly with chronic diseases are (1) the behavioral focus coping ways by doing sports, and physical activities;(2) Focus on spirituality has been implemented by fasting, chanting, dhikr, and prayer;(3) The cognitive focus by working on hobbies or habitual activities and helping each other;(4) The social interaction focus was by interacting with friends, family, and neighbors. Conclusions: This shows that elderly adults with disease conditions try to adapt various forms of coping mechanisms, which positively affects their psychological state. Families which have elderly with chronic diseases are expected to provide nurturing and psychological support to them so that the elderly can consistently apply coping mechanisms to overcome and tackle chronic diseases. Understanding the coping mechanism implementation of the elderly who have chronic diseases by their family can guide health specialists in designing psychological and spiritual approach interventions.

Family care intervention for children with epilepsy:A literature review

Family care plays an important role in the health maintenance of children with epilepsy.In this paper,the relevant literatures of family nursing intervention were collected and summarized.There are two main methods of family care intervention for children with epilepsy:Family-managed care interventions and family-centered care interventions.It is not only spread the knowledge of epilepsy,but more importantly,improve the ability of family caregivers to manage the disease,and improve family function and reduce the behavior of children with epilepsy effectively.

Intensive care environment: Perspective of relatives of critically ill patient sustained by health technology

The intensive care unit(ICU)is a complex setting by nature,and some have described it as bizarre due to its numerous sirens that sound when anything is dangerous,constant activity,equipment,bright lights,and high fatality rate.The demands placed on nurses to care for critically ill patients in this environment frequently prevent nurses and other health‑care professionals from acknowledging the feelings of patient’s relatives or family caregivers,resulting in a hostile environment from the patient’s relative’s perspective.When a patient’s family enters the ICU,they feel that hospital administrators do little to nothing to alleviate their discomfort and fear.Despite research demonstrating the importance of providing a homely environment for patients’families,In Nigeria ICU is still far behind how a conventional ICU environment should be structured to accommodate patient’s relations in the unit.The goal of this study was to look at the patient’s relative’s perspective on providing care for a critically ill patient in an ICU,with a focus on the unit’s complexity and overall experience.Based on the findings of this study,we recommend that hospital administrators ensure that the environment of the upcoming ICU is designed to meet the needs of patient’s relatives by addressing identified environmental concerns,like caring neglect,by providing a friendly and stress‑free environment.

Perspectives and Challenges of Family Members in Providing Mental Support to Cancer Patients:A Qualitative Study in Beijing,China

This study explores the perspectives and challenges faced by family members providing mental support to cancer patients in Beijing,China.The primary objective is to understand the emotional and practical roles family members undertake and the difficulties they encounter.Utilizing a qualitative research design,data were collected through semi-structured interviews with family caregivers of cancer patients.Thematic analysis revealed several key themes:the dual burden of emotional support and caregiving responsibilities,the impact on daily life and personal well-being,the role and effectiveness of external support systems,perceptions of medical staff support,and the common challenges and conflicts faced in caregiving.The findings highlight the critical need for comprehensive support systems that address both the emotional and practical needs of family caregivers.Recommendations for enhancing family-centered support programs in oncology settings are discussed.

Developing an evidence-based and theory informed intervention to involve families in patients care after surgery: A quality improvement project

Objectives: In the post-surgical setting,active involvement of family caregivers has the potential to improve patient outcomes by prevention of surgical complications that are sensitive to fundamental care.This paper describes the development of a theoretically grounded program to enhance the active involvement of family caregivers in fundamental care for post-surgical patients.Methods: We used a quality improvement project following a multi-phase design.In Phase 1,an iterative method was used to combine evidence from a narrative review and professionals' preferences.In Phase 2,the logic model underlying the program was developed guided by four steps: (1) confirm situation,intervention aim,and target population;(2) documented expected outcomes,and outputs of the intervention;(3) identify and describe assumptions,external factors and inputs;and (4) confirm intervention components.Results: Phase 1 identified a minimum set of family involvement activities that were both supported by staff and the narrative review.In Phase 2,the logic model was developed and includes (1) the inputs (e.g.educational-and environmental support),(2) the ultimate outcomes (e.g.reduction of postoperative complications),(3) the intermediate outcomes (e.g.behavioural changes),and (4) immediate outcomes (e.g.improved knowledge,skills and attitude).Conclusions: We demonstrated how we aimed to change our practice to an environment in which family caregivers were stimulated to be actively involved in postoperative care on surgical wards,and how we took different factors into account.The description of this program may provide a solid basis for professionals to implement the family involvement program in their own setting.

Survey of Bereavement Care Provided by Home-Visit Nurses for Bereaved Families in Japan

Purpose: This study aims to investigate the implementation conditions of bereavement care for bereaved families and the relationship between demographics of home-visit nurses and rates of provision of bereavement care. Methods: A self-rating anonymous questionnaire survey was conducted with 2200 facilities randomly selected from among the members of the Home-visit Nursing Stations of the National Nursing Business Association. Calculating the rates of provision of each pre- and post-bereavement care item of the survey, we performed a multiple logistic regression analysis to investigate the relationship between the demographics of home-visit nurses and rates of provision of care. Statistical processing employed SPSS ver. 21.0 with the significance level set at 5%. Results: A total of 688 responses were collected (collection rate, 31.3%), and 649 were included in the analysis. “Approval of the care that the family has provided” and “Involvement in the care together with the family and listening to their thoughts” were frequently provided in both pre- and post-bereavement care;however, the rate of provision of “Provided continued support/life planning until the family fully recovers social life” was low. More care services were provided by home-visit nurses working in facilities with 24-hour services in pre-bereavement, and by those with longer home-visit nursing experience in post-bereavement. Conclusions: Home-visit nurses provide many post-bereavement care services. However, continued care that helps bereaved families fully recover their social life, including life planning, is less frequently provided. Bereavement care provision rates vary depending on the facility type, whether the facility offers 24-hour services, and the length of home-visit nursing experience.