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Experimental and Clinical... Jan 2024This study aimed to investigate the effects of care burden on the quality of life of parents who have children who have undergone solid-organ transplant.
OBJECTIVES
This study aimed to investigate the effects of care burden on the quality of life of parents who have children who have undergone solid-organ transplant.
MATERIALS AND METHODS
The research was conducted as a descriptive correlational study. Researchers collected data through face-to-face interviews with parents of patients registered in the Solid Organ Transplantation and Pediatric Nephrology outpatient clinic of Akdeniz University Hospital. The data collection tools included a Descriptive Information Form, the SF-36 Quality of Life Scale, and the Zarit Caregiver Burden Scale. Data were analyzed using descriptive statistics, percentages, Pearson correlation analysis, t tests, analysis of variance, and the Kruskal-Wallis test.
RESULTS
Parents in the study had a mean age of 32.12 ± 5.42 years; 100% of the parent participants were mothers. Among children who received transplants, 55.8% were boys. Solid-organ transplant types included 86% with liver transplants and 6.9% with kidney transplants. The mean burden of care score of parents was 38.72 ± 7.12, and the mean quality of life score was 28.14 ± 1.49. A significant negative correlation was found between the care burden of parents and their quality of life.
CONCLUSIONS
Families of children with solid-organ transplants face a significant care burden, which negatively affects their quality of life. The burden extends beyond parents to siblings and the overall family dynamics. Health care providers should recognize and address this burden by implementing comprehensive support services tailored to the specific needs of these families. A multidisciplinary approach involving various professionals is necessary to provide effective support. Interventions such as respite care, support groups, counseling services, and educational programs can help alleviate the burden and improve the overall well-being of these families. Future research should aim to develop targeted interventions and explore the experiences of these families in more depth.
Topics: Child; Male; Female; Humans; Adult; Quality of Life; Caregiver Burden; Parents; Liver Transplantation; Psychological Tests; Self Report
PubMed: 38385411
DOI: 10.6002/ect.MESOT2023.P78 -
Health Research Policy and Systems Feb 2024Government purchase of social forces to participate in old age care services can release the burden of social care. Current research on performance evaluation in this...
BACKGROUND
Government purchase of social forces to participate in old age care services can release the burden of social care. Current research on performance evaluation in this field mainly focussed on the establishment of appropriate evaluation indices. However, discussion on the policy implementation deviation is scarce. This study aimed to evaluate the performance of China's local government purchase of old age care services, analyse the characteristics of related policies and explore their deviation.
METHODS
The persons who participated in the Training of the Trainer (ToT) organized by the Red Cross Society were enrolled. The policy documents were obtained from the official websites. The K-means cluster was used to determine the project performance grades. We compared the project performance grades between service objects and undertakers with different characteristics utilizing the non-parametric test. Based on the framework of 'Collaborative Participation - Project Performance Objective', we analysed the content of relevant policy aiding by NVivo 12.
RESULTS
Data of project performance were collected from 306 participants. The standardized mean score of the efficiency dimension was the lowest (0.70 ± 0.24). The projects were divided into four grades: poor (17.0%), average (27.5%), good (12.4%) and excellent (43.1%). There were statistically significant differences in project performance grades only between advanced ageing groups (Z = 2.429, P = 0.015). As well, the policy also mentioned that the services focus should be tilted towards the oldest old. The purchasers mainly involved the Ministry of Civil Affairs and Health management departments in the policy. Respite services were less mentioned in the responsibilities of the undertakers. The requirement for efficiency and effectiveness was mentioned in less than half of the policy documents.
CONCLUSION
Policy attention is needed for the responsibilities and functions of the intermediate purchasing force, as well as more precise directions and responsibilities of undertakers. The purchasers and undertakers should improve management abilities and capacity of old age care services and focus on associated factors to achieve the best marginal benefit. In addition, the embedded performance evaluation needs to be updated periodically to bridge the deviation between policy implementation and policy formulation.
Topics: Humans; Aged, 80 and over; Policy Making; Local Government; Policy; China
PubMed: 38360665
DOI: 10.1186/s12961-024-01108-8 -
BMJ Open Feb 2024This study aimed to investigate the relationship between the use of inpatient respite care and the overall survival of homebound patients without cancer admitted to a... (Observational Study)
Observational Study
OBJECTIVES
This study aimed to investigate the relationship between the use of inpatient respite care and the overall survival of homebound patients without cancer admitted to a hospital ward in order to assess the potential impact of inpatient respite care on the duration of home care.
DESIGN
This was a single-centre, hospital ward-based retrospective observational study.
SETTING AND PARTICIPANTS
From March 2011 to September 2018, 393 cancer-free older patients (median age, 84.0 years; 53.9% women) receiving continuous medical care at home through clinics were enrolled upon admission to a hospital ward.
PRIMARY OUTCOME MEASURES
Continuous cumulative survival curves were generated using the Kaplan-Meier method for two groups: inpatient respite care users and non-users. Additionally, prognostic factors associated with all-cause mortality were assessed using the Cox proportional hazards model.
RESULTS
The Kaplan-Meier curves for inpatient respite care users without cancer admitted to the hospital ward demonstrated a longer median survival time than non-users. Subgroup analyses for patients with or without neurological disorders yielded similar results. The HR for inpatient respite care use, after adjusting for age, sex and other confounding variables, was 0.480 (95% CI: 0.328 to 0.703, p<0.001).
CONCLUSIONS
Homebound patients without cancer receiving inpatient respite care during the study period in Japan demonstrated higher overall survival than those who did not receive respite care. Subgroup analysis of patients with neurological disorders yielded similar results. Further studies are needed to investigate the benefits of inpatient respite care, including the exploration of appropriate methods for its use.
Topics: Aged, 80 and over; Female; Humans; Male; Hospitals; Inpatients; Japan; Neoplasms; Nervous System Diseases; Respite Care; Retrospective Studies
PubMed: 38346882
DOI: 10.1136/bmjopen-2023-078871 -
Journal of Eating Disorders Feb 2024This research explores experiences of compassion among 2S/LGBTQ + Canadians living with eating disorders in the context of eating disorder treatment and community...
This research explores experiences of compassion among 2S/LGBTQ + Canadians living with eating disorders in the context of eating disorder treatment and community support. There is a growing body of scholarship showing disparities in eating disorder care for those within 2S/LGBTQ + communities. Among the reported concerns is a potential lack of compassion in eating disorder treatment and recovery settings, something which may serve to exacerbate feelings of isolation and perpetuate misunderstandings of 2S/LGBTQ + people's experiences. In an effort to understand these dynamics more deeply, we conducted semi-structured interviews with 2S/LGBTQ + Canadians who have experienced eating disorder care. The data collected were then subjected to Foucauldian discourse analysis, which produced three interconnected discursive considerations: feeling lack of structural compassion, 2S/LGBTQ + communities as places of respite, and 2S/LGBTQ + caregiving. One of the common threads among these discursive considerations was cis-heteronormativity ingrained in eating disorder treatment settings and health care systems more broadly. Our findings underscore the critical need for more enhanced compassion for 2S/LGBTQ + patients in eating disorder care settings. We conclude that compassion, when implemented on the levels of individual clinicians, policy and procedure, and institutions, may represent an avenue toward disrupting ingrained cis-heteronormativity and the associated discursive power structures contained in health care systems.
PubMed: 38326869
DOI: 10.1186/s40337-024-00981-6 -
BMC Nursing Jan 2024As China's population ages, the demand for care for the disabled elderly is increasing, and family caregivers find it challenging to meet the comprehensive care needs of...
A qualitative study on the willingness and influencing factors of master of geriatric nursing specialist postgraduates to volunteer for home respite care for disabled elderly families.
BACKGROUND
As China's population ages, the demand for care for the disabled elderly is increasing, and family caregivers find it challenging to meet the comprehensive care needs of the disabled elderly. Through home respite services, families of the disabled elderly can receive help and support from specialized nursing professionals to ease the burden on family caregivers and provide high-quality services. This study explores the willingness and influencing factors of Master of Geriatric Nursing Specialist postgraduates in China to volunteer to provide home respite services for disabled elderly individuals.
METHODS
A qualitative study based on Grounded Theory used Strauss and Corbin's programmatic version. A purposive sampling method was employed to conduct semi-structured interviews with 12 Master of Geriatric Nursing Specialist postgraduates from a tertiary hospital in Changsha, Hunan Province, China.
RESULTS
The willingness of Master of Geriatric Nursing Specialist postgraduates to volunteer to provide home respite services for the disabled elderly was established as a core category, which was influenced by three main categories: personal factors, service object factors, and social factors, and nine categories formed from 39 initial concepts were included under the main category.
CONCLUSIONS
Influenced by China's traditional cultural background, Master of Geriatric Nursing Specialist postgraduates in China have shown high motivation in volunteering to provide home respite services for the families of the disabled elderly but have been challenged by several challenges from China's healthcare environment and education system. Relevant departments need to adopt a series of policies and measures to increase volunteers' willingness to participate in respite care and promote its development.
PubMed: 38233888
DOI: 10.1186/s12912-024-01710-9 -
Genetics in Medicine : Official Journal... Apr 2024Rare genetic neurodevelopmental disorders associated with intellectual disability require lifelong multidisciplinary care. Clinical practice guidelines may support... (Review)
Review
PURPOSE
Rare genetic neurodevelopmental disorders associated with intellectual disability require lifelong multidisciplinary care. Clinical practice guidelines may support healthcare professionals in their daily practice, but guideline development for rare conditions can be challenging. In this systematic review, the characteristics and methodological quality of internationally published recommendations for this population are described to provide an overview of current guidelines and inform future efforts of European Reference Network ITHACA (Intellectual disability, TeleHealth, Autism, and Congenital Anomalies).
METHODS
MEDLINE, Embase, and Orphanet were systematically searched to identify guidelines for conditions classified as "rare genetic intellectual disability" (ORPHA:183757). Methodological quality was assessed using the Appraisal of Guidelines, Research, and Evaluation II tool.
RESULTS
Seventy internationally published guidelines, addressing the diagnosis and/or management of 28 conditions, were included. The methodological rigor of development was highly variable with limited reporting of literature searches and consensus methods. Stakeholder involvement and editorial independence varied as well. Implementation was rarely addressed.
CONCLUSION
Comprehensive, high-quality guidelines are lacking for many rare genetic neurodevelopmental disorders. Use and transparent reporting of sound development methodologies, active involvement of affected individuals and families, robust conflict of interest procedures, and attention to implementation are vital for enhancing the impact of clinical practice recommendations.
Topics: Humans; Intellectual Disability; Quality Improvement; Evidence-Based Medicine; Neurodevelopmental Disorders; Consensus
PubMed: 38224026
DOI: 10.1016/j.gim.2024.101071 -
BMC Palliative Care Jan 2024Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and...
BACKGROUND
Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home.
METHODS
A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method.
RESULTS
The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation.
CONCLUSION
Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.
Topics: Adult; Humans; Caregivers; Grounded Theory; Family; Death; Neoplasms; Palliative Care; Qualitative Research
PubMed: 38212707
DOI: 10.1186/s12904-024-01350-5 -
PloS One 2024Medical Respite Programs (MRPs) characterize a care model that has been developed to address the health care and social needs of persons experiencing homelessness by...
Medical Respite Programs (MRPs) characterize a care model that has been developed to address the health care and social needs of persons experiencing homelessness by providing post-acute hospital care in a safe environment. Although this model has been shown to reduce hospitalizations, improve health outcomes and increase access to health services, prior studies of MRP programs and outcomes have been limited to individual sites and may not generalize to the population of individuals receiving MRP care. This study protocol describes a mixed method design to collect organizational, provider, and patient-level data from a sample of MRPs.
Topics: Humans; Research Design; Social Problems; Ill-Housed Persons; Hospitalization
PubMed: 38206961
DOI: 10.1371/journal.pone.0295543 -
Surgery Apr 2024Unhoused patients have worse surgical outcomes than the general population. However, the drivers of this inequity have not been studied.
BACKGROUND
Unhoused patients have worse surgical outcomes than the general population. However, the drivers of this inequity have not been studied.
METHODS
We conducted 26 semi-structured interviews of clinicians who care for patients with surgical disease, using a purposive sampling strategy to intentionally recruit participants with significant experience caring for unhoused patients across different roles. We used thematic analysis to analyze the resulting data.
RESULTS
We conducted 26 interviews: 11 with surgeons (42%), 8 with internal medicine physicians (30%), 2 with surgical advanced practice providers (8%), 3 with social workers or case managers (11%), and 2 with registered nurses (8%). One-third of the participants worked in either medical respite or street medicine programs. We identified 5 themes, each of which was most relevant at a distinct point along the spectrum of surgical care: (1) patients and clinicians face multiple challenges meeting preoperative requirements, (2) although surgeons do not make major operative decisions based on housing status, some take it into consideration for minor care decisions, (3) clinicians perceive that unhoused patients have negative postoperative experiences in the hospital, (4) discharge options for unhoused patients are commonly imperfect, which can lead to inadequate postoperative care, (5) challenges with formal communication between surgeons and non-surgeons are amplified when caring for unhoused patients.
CONCLUSION
Clinicians who care for unhoused patients with surgical disease relayed multiple challenges throughout all phases of surgical care and relied on both formal and informal mechanisms to mitigate these challenges. There may be opportunities to intervene and improve access to surgical care for this vulnerable group.
Topics: Humans; Patient Discharge; Hospitals; Surgeons; Communication; Qualitative Research
PubMed: 38142144
DOI: 10.1016/j.surg.2023.11.009 -
Journal of the American Medical... Feb 2024Investigate how people with chronic obstructive pulmonary disease (COPD)-an example of a progressive, potentially fatal illness-are using digital technologies (DTs) to...
OBJECTIVES
Investigate how people with chronic obstructive pulmonary disease (COPD)-an example of a progressive, potentially fatal illness-are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness.
MATERIALS AND METHODS
A transformative mixed methods study was conducted in Canada with people with COPD (n = 77) or with a progressive lung condition (n = 6). Stage-1 interviews (n = 7) informed the stage-2 survey. Survey responses (n = 80) facilitated the identification of participants for stage-3 interviews (n = 13). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages.
RESULTS
Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity.
DISCUSSION AND CONCLUSION
We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. "Quality of life informatics" should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.
Topics: Humans; Consumer Health Informatics; Mental Health; Palliative Care; Pulmonary Disease, Chronic Obstructive; Quality of Life
PubMed: 38134954
DOI: 10.1093/jamia/ocad234