Caregiver Quality Research Articles

A pilot study to evaluate the feasibility and potential effectiveness of an early palliative care model: "Educate, Nurture, Advise, Before Life Ends for Singapore".

The main objective was to pilot the culturally adapted "Educate, Nurture, Advise, Before Life Ends" for Singapore (ENABLE-SG) model to evaluate its feasibility and potential effectiveness. A single-arm pilot trial of ENABLE-SG among patients with advanced solid tumors and caregivers of these patients was conducted in the outpatient oncology clinic setting. Enrolled participants participated in individual ENABLE-SG psychoeducational sessions weekly. Patients had 6 sessions on the topics of maintaining positivity, self-care, coping with stress, managing symptoms, exploring what matters most and life review. Caregivers had 4 sessions on the topics of maintaining positivity, self-care, coping with stress and managing symptoms. At baseline, 4, 8, and 12 months after enrolment, patient's quality of life was measured using the Functional Assessment of Chronic Illness Therapy - Palliative Care, patient's mood was measured using the Center for Epidemiologic Studies - Depression scale, and caregiver quality of life was measured using the Singapore Caregiver Quality of Life Scale. We enrolled 43 patients and 15 caregivers over a 10-month period from August 2021 to June 2022. Although there was a low approach-to-participation rate, most of those who enrolled completed all ENABLE-SG sessions - 72% for patients and 94% for caregivers. Caregivers had better quality of life over time, specifically in the subscales of mental well-being and experience-meaning. Based on findings from this study, we are planning a randomized waitlist-controlled trial of ENABLE-SG for patients with advanced cancer and their caregivers.

I-Poems: A Window Into the Personal Experiences of Family Caregivers of People Living With Advanced Cancer.

To date, there is little understanding of how caring during advanced cancer can be a transformational experience for personal becoming for family caregivers (FCGs). FCGs experience personal becoming as they create their own meaning of health and illness and choose patterns relating to the self-identity of the past while reaching forward into the unknowns. Gaining greater insight into a potentially positive aspect of cancer caregiving can contribute to FCG well-being and quality of life. This article identifies I-Poems within cancer caregiver narratives and explores them for themes of personal becoming. The narrative environment created space for FCGs to construct and share their voices; at the same time, the analytic method of poetic inquiry provided the voice of the FCGs to be seen, heard, and contextually explored. As a secondary analysis, we used five cancer caregiver narrative texts obtained from the primary study to create individual I-Poems. Each of the I-statements within the cancer caregiver narrative texts was lifted and repositioned into a poem format while retaining the chronological order and voice of the participant. We then explored the I-Poems for converging themes of personal becoming as emerged from the primary narrative-thematic analysis. I-Poems were created from each of the five participant caregivers' narratives and then explored for themes of personal becoming. Each of the participant stories is briefly introduced, followed by their I-Poem. We found that the I-Poems converged with emergent themes and provided a first-person representation of their caring journey and transformation of being. I-Poems are a postmodern form of poetic inquiry that can be used alongside thematic analysis to explore personal meaning of caring for someone with advanced cancer and how FCGs experience personal transformation of self. Although we found I-Poems to be a meaningful and useful form of analysis for some narrative data, we propose an evolved genre of poetic inquiry-We-Poems-to be used in dyadic nursing research and with FCGs who are in partnered relationships.

Quality of life of caregivers at the end of their child's pediatric cancer treatment: cancer-specific worry and material hardship.

Emerging research suggests that completion of pediatric cancer treatment can be challenging for caregivers given shifting roles and responsibilities. Lower caregiver quality of life (QOL) has been associated with cancer-related variables, higher cancer caregiving strain, and more household material hardship during pediatric cancer treatment. Caregiver QOL at the end of treatment has not been fully investigated but has implications for child and family well-being. Using a psycho-oncology framework, this study aimed to understand the cumulative burden of household material hardship and cancer-related factors on caregiver QOL at the end of treatment. Caregivers (N = 143) of children (Mage=10.51 years) within 1 year of ending active cancer treatment completed self-report questionnaires assessing their QOL, cancer-specific worry, and material hardship (e.g., housing, insurance). Total months of active cancer treatment were extracted from the medical record. Hierarchical linear regression was used to test the relative effects of length of treatment, material hardship, and cancer-specific worry on caregiver QOL. Cancer-specific worry was significantly associated with and accounted for significant variance in caregiver QOL, above and beyond the length of treatment and material hardship. Caregivers who endorsed more cancer-specific worry had poorer QOL. Material hardship was also significantly associated with caregivers' QOL, but length of treatment was not. Caregivers with sufficient resources and less worry about cancer have higher QOL. Findings highlight the importance of end-of-treatment screening of caregivers' subjective cancer-specific worry in addition to material hardship, irrespective of their cancer-related stressors, for ongoing psychosocial support.

Is new tech a pain in the neck? The impact of introducing new technologies in home-care on neck pain: a prospective study

BackgroundHome healthcare services are increasingly utilizing novel technologies to enhance quality and efficiency of caregiving, to reduce workloads and compensate for expected labor shortages in the future due to ageing populations. However, rapid, ongoing implementation of new technologies may demand considerable adaptation for employees. The objective of this study was to prospectively examine associations of newly introduced work technologies with neck pain complaints.MethodsWith a nationally representative prospective sample of home-care workers in Norway (N = 887), we estimated effects of 1) introducing new technologies and 2) the appraised quality of training during implementation on neck pain eight months after.ResultsA majority of employees reported new technologies having been introduced the previous 12 months (73.8%). This was not by itself associated with neck pain. However, perceived high quality of training was associated with less subsequent neck pain, also after adjustment for job demands and job control. The strongest effect was seen for “very good” versus “very poor” quality training (OR 0.35, 95% CI 0.17,0.71, in the fully adjusted model). Cross-lagged path analyses ruled out potential reverse causation stemming from the influence of pain on needs for or appraisals of training.ConclusionThe present findings suggest the introduction of new work technologies has a significant impact on home-care workers’ health, depending on the quality of training during implementation. This highlights the need to include training programs in risk assessments when implementing new technologies.

The burden of alcohol-related caring for others in Australia in the 2021 pandemic period.

The magnitude of caring for others due to excessive alcohol use is unclear in Australia and internationally. This study explores the prevalence, sociodemographic predictors, and consequences of informal care for others due to alcohol use. A survey on harm from others' drinking was conducted among 2,574 Australian adults in November 2021 from national random digit dial and "Life in Australia" panel samples to elicit representative data. Respondents who indicated they had "heavy drinker/s" in their lives (n= 1,585), were asked about their experience of caring for these drinkers and their dependents in the last 12 months. Weighted logistic and linear regressions examined a) sociodemographic factors associated with informal care due to others' drinking, and b) the impact of the caregiving burden on caregiver's financial status, overall health, and quality of life. Overall, 20% of participants reported caregiving responsibilities arising from others' drinking. Older age, unemployment, residing in capital cities and reporting birth in a non-English speaking background country were associated with a reduced likelihood of caregiving, whereas higher education and more frequent risky drinking were associated with an increased likelihood. Caregivers reported significantly higher financial disadvantage, a lower quality of life and poorer overall health. One in five adults reported caring for drinkers in the previous 12 months, with this associated with negative consequences for those providing care. Service providers, health promotion practitioners and policy makers should focus upon younger age groups, those who live in regional areas, and those born in Australia who are at greater risk of being burdened by caregiving due to others' alcohol use.

Stressful life events and prenatal representations of the child

ABSTRACT Caregivers’ mental representations of their children can be assessed prenatally and are prospectively associated with later caregiving quality and caregiver–child attachment. Compared to balanced, distorted or disengaged representations are linked to insecure caregiver–child attachments. The present study explored factors (i.e. stressful life experiences and positive experiences) that may be linked to risk for distorted and disengaged representations. We used a brief version of the Prenatal Working Model of the Child Interview in a sample of 298 pregnant people (ages 19 to 45 years; M = 30.83, SD = 5.00) between gestational age 11–38 weeks (M = 23.49, SD = 5.70). A greater number of stressful events across three developmental periods (i.e., lifespan, childhood, and pregnancy) were related to increased odds of distorted, compared to balanced classification. Pregnancy stress had the largest association. Positive experiences from childhood did not buffer the association between stress and representations. Findings highlight the importance of stress on prenatal representations of one’s child.

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children.

Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school-aged Autistic children. Eighty-eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7- to 12-years) participated in this cross-sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child-rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well-being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.

Psychological challenges and quality of life in Pakistani parents of children living with thalassemia

PurposeChildren living with thalassemia experience psychological challenges, but despite significant psychosocial burdens, caregivers' psychological wellbeing and quality of life remain understudied, particularly in lower-and-middle-income countries. Design and methodThe current study evaluated these relationships in 100 male and female Pakistani caregivers (23–45 years; 61% female) using Ryff's Psychological Well-Being Scale and the Singapore Caregiver Quality of Life Scale. Caregivers completed questionnaires during regularly scheduled clinic visits for their child. ResultsWe found that Pakistani caregivers in our sample generally had significantly lower (30–40 points) quality of life than a referent sample of caregivers of older adults (ps < 0.001). Self-acceptance and personal growth were consistently significant predictors across quality of life domains. Further, significant interactions were observed. Female caregivers with less self-acceptance had worse mental health and wellbeing and impact on daily life (p < .05). Male caregivers with less personal growth had worse physical health wellbeing (p < .05). ConclusionsOur results demonstrate the importance of considering how distinct aspects of psychological wellbeing, rather than just the overall score, relate to the specific quality of life domains among male and female caregivers. Practice implicationsPediatric nurses are at the frontline of service delivery for children and are in a prime position to observe caregivers who could be at high risk for psychological challenges. Given our findings, future clinical interventions should prioritize support services promoting personal growth and self-acceptance for Pakistani caregivers of children living with thalassemia.

Trajectories of negative and positive experiences of caregiving for older adults with severe dementia: application of group-based multi-trajectory modelling.

Family caregivers of older adults with severe dementia have negative and positive experiences over the course of caregiving. We aimed to delineate joint trajectories (patterns over time) for negative and positive experiences, identify risk factors associated with membership of joint trajectories, and ascertain the association between joint trajectories and caregivers' outcomes after the death of the older adult. Two hundred fifteen family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 2 years, and 6 months after the death of the older adult. Using group-based multi trajectory modelling, we delineated joint trajectories for positive (Gain in Alzheimer Care Instrument) and negative (sub-scales of modified Caregiver Reaction Assessment) experiences of caregiving. We identified four joint trajectories - "very high positive, low negative" (23% of caregivers), "high positive, moderate negative" (28%), "very high positive, moderate negative" (28%), and "high positive, high negative" (21%). Caregivers of older adults with more behavioural symptoms, and who did not receive strong emotional support from family were more likely to have "high positive, moderate negative" or "very high positive, moderate negative" trajectory. Compared to caregivers with "very high positive, low negative" trajectory, caregivers with "very high positive, moderate negative" or "high positive, high negative" trajectories expressed greater grief and distress, with the latter also having lower spiritual well-being and quality of life at 6 months after the death of the older adult. The caregiving experiences for older adults with severe dementia vary between caregivers but remain stable over time. Modifiable risk factors identified for trajectories involving negative experiences of caregiving may be targeted in future interventions to improve the experience of caregiving and caregiver quality of life and distress after the death of the older adult. http://www. gov (NCT03382223).

Caregiver experiences of caring for family members with urostomy: a qualitative study.

In China, bladder tumors rank first for morbidity and mortality among urological and reproductive system tumors. Total radical cystectomy plus urinary flow conversion is the gold standard for the treatment of muscle-layer invasive bladder cancer. With an increasing number of radical cystectomies each year, the number of patients living with urostomy is growing. After discharge, primary care of urostomy patients is given at home, and high demands are placed on home caregivers due to issues of privacy and the complexity of replacing the urostomy device. This research explored the challenges faced by the family caregivers of urostomy patients. We used descriptive qualitative research methods to conduct interviews with twenty-five family caregivers of patients with urostomy. Survey subjects were from five general hospitals. All interviews were recorded, transcribed, and analyzed using thematic analysis. Three critical challenges were identified-confusion, family crisis, and struggle psychology. Within these three themes, six sub-themes wereconstructed by coders. They were knowledge and skill deficiency, strong insecurities and uncertainties, role conflict, economic burden, emotional overwhelmed and calm acceptance. Family caregivers play a critical role in patient care, and especially in urostomy care. Caregiving is associated with significant challenges that hinder the family caregiver's ability to effectively care for the patient, further diminishing the caregiver's quality of life. Therefore, healthcare professionals should consider the challenges faced by family caregivers and take measures to obviate them through education, preparation, and support.

A Prospective Study to Compare Caregivers' Knowledge and Perception of Cancer Pain with Patients' Pain Assessment and to Evaluate their Quality of Life.

Family caregivers (FCGs) play a crucial role in the home care of terminally ill patients. Therefore, evaluating their comprehension of patients' symptoms and doctors' advice becomes crucial. Moreover, this might negatively impact their quality of life (QOL). Thus, the purpose of the study was to examine FCGs' perception and understanding of cancer pain in relation to patients' pain assessments, as well as the effect this has on their own QOL. The family pain questionnaire (FPQ) and patient pain questionnaire (PPQ) were used for both patient as well as their FCGs. The scores for each subscale, knowledge, and experience were calculated. Furthermore, FCGs' own QOL was assessed using the caregiver quality of life index-cancer (CQOLC) questionnaire. Results were statistically analysed. The FCGs of 93 individuals were examined. The Cronbach alphas for the current dataset showed that the FPQ (0.754) and PPQ (0.759) overall reliability scales were satisfactory. The knowledge, experience, and total average scores for the PPQ (FPQ) subscales were reported as 35.91 (35.31), 27.19 (26.86), and 63.10 (62.17), respectively. The knowledge, experience, and overall scales of the PPQ (FPQ) were evaluated to provide median scores of 37 (36), 28 (25), and 65 (62) correspondingly. A t-test was used to determine the significance of the observed average differences (d) for knowledge (0.602), experience (0.333), and overall (0.935). The results showed that there were no significant differences (P > 0.05). An inverse relationship was elicited between the total QOL and the pain assessment scores of FCGs, as well as the age of the patient. The difference was, however, majorly statistically non-significant (P > 0.5). Further, statistical significance was found only between the burden component of the CQOLC and the age of the patients (P = 0.034), as well as total pain knowledge (P = 0.007) and total pain scores (P = 0.001) of the FCGs'. As per our analysis, FCGs had less knowledge and experience of patients' pain, though statistically , it was not significant. The age of the patient, as well as total pain knowledge and total pain scores of the FCGs' were found to affect the QOL of FCGs'. Studies with large sample sizes might help in strengthening the findings.

Working-Age Caregivers of Stroke Survivors: Needs, Concerns, and Quality of Life.

The purpose of this study was to characterize the unmet needs and concerns of working-age caregivers of stroke survivors and to explore the relationships between these unmet needs and concerns and factors such as stroke survivor functional independence, caregiver strain, caregiver self-efficacy, caregiver perceived social support, and caregiver quality of life (QoL). Cross-sectional descriptive design was used in this study. Participants ( N = 103) completed an online survey. Descriptive statistics, bivariate Pearson correlation, and linear regression analysis was performed. Negative correlations were found between caregiver needs and concerns and both stroke survivor functional independence and caregiver self-efficacy. Positive correlations were identified between caregiver needs and concerns and caregiver strain. In multiple regression models, stroke survivor functional independence, caregiver self-efficacy, race, and gender were statistically significantly associated with caregiver QoL. Results of this study can inform nurses as they collaborate with informal caregivers and researchers in optimizing the rehabilitation and discharge process and aiding in the support of caregiver QoL. Working-age caregivers of stroke survivors expressed many needs and concerns. These needs, along with other factors, can affect outcomes including QoL in caregivers and stroke survivors.

Effect of cognitive training on cognitive function in community-dwelling older people with mild-to-moderate dementia: A single-blind randomised controlled trial.

The purpose of this assessor-blinded, randomised controlled trial was to determine the effect of computerised cognitive training (CT) on executive function, processing speed and working memory in 61 people with mild-to-moderate dementia. The primary outcomes were forward Digit Span and Trail Making Tests (TMT) at the completion of the 6-month intervention. Secondary outcomes included cognitive and physical performance, rate of falls, participant and caregiver's quality of life and usability and adherence to the CT program. The study was registered with the Australian and New Zealand Clinical Trials Registry (ACTRN12617000364370). Intervention group (n = 31) participants averaged 81 min of CT per week, and system usability scores were acceptable (participants: 68.8 ± 22.1; caregivers: 79.4 ± 23.5). There were no statistically significant differences in cognitive or physical performance outcomes between the intervention and control groups at 6- or 12-months (between-group differences [95% CI] for primary outcomes at 6-months: Forward Digit Span -0.3 [-0.8, 0.3]; TMT-A 2.7 s [-14.1, 19.5]; TMT-B -17.1 s [-79.3, 45.2]). At the 12-month follow-up reassessment, the intervention group reported significantly more depressive symptoms and had lower caregiver-rated participant quality of life and higher caregiver quality of life compared to control. This study showed no benefit of the CT program on working memory, processing speed and executive function. Future studies are required to better understand how CT can be used to improve cognitive and physical functioning in older people with mild-moderate dementia.

Experiences of financial toxicity among caregivers of cancer patients: a meta-synthesis of qualitative studies.

The purpose of this study was to explore the experience of financial toxicity among caregivers of cancer patients and to provide recommendations for subsequent intervention strategies. Computer searches of PubMed, EmBase, The Cochrane Library, Web of Science, CINAHL (EBSCO), CNKI, Wanfang database, and SinoMed for qualitative studies experience of financial toxicity among caregivers cancer patients. The search time frame was from the establishment of the database to May 2023. The quality of included studies was assessed using the Qualitative Research Checklist from the Joanna Briggs Institute (JBI) Reviewer's Manual. The meta-synthesis was integrated following the meta-aggregation method proposed by the Joanna Briggs Institute (JBI) and reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. A total of nine studies were included, distilling 25 qualitative findings into nine new categories and synthesizing three synthesized findings: caregivers have strong negative experiences that affect their family relationships, daily work and life; caregivers use different strategies to cope with financial toxicity; needs and expectations of caregivers coping with financial toxicity. Financial toxicity among caregivers of cancer patients affects their daily lives. Receiving timely recognition of this financial burden and providing assistance to enhance their coping skills are crucial in mitigating its impact. Healthcare professionals should focus on the financial toxicity experienced by caregivers of people with cancer, address their supportive needs, and develop a comprehensive support system to improve caregivers' coping abilities and quality of life.

Readiness for hospital discharge and its association with post-discharge outcomes among oesophageal cancer patients after oesophagectomy: A prospective observational study.

To examine the level and influencing factors of discharge readiness among patients with oesophageal cancer following oesophagectomy and to explore its association with post-discharge outcomes (post-discharge coping difficulty and unplanned readmission). Oesophageal cancer is common and usually treated via oesophagectomy in China. The assessment of patient's discharge readiness gradually attracts attention as patients tend to be discharged more quickly. Prospective observational study. The STROBE statement was followed. In total, 154 participants with oesophageal cancer after oesophagectomy were recruited in a tertiary cancer centre in Southern China from July 2019 to January 2020. The participants completed a demographic and disease-related questionnaire, the Quality of Discharge Teaching Scale and Readiness for Hospital Discharge Scale before discharge. Post-discharge outcomes were investigated on the 21st day (post-discharge coping difficulty) and 30th day (unplanned readmission) after discharge separately. Multiple linear regressions were used for statistical analysis. The mean scores of discharge readiness and quality of discharge teaching were (154.02 ± 31.58) and (138.20 ± 24.20) respectively. The quality of discharge teaching, self-care ability, dysphagia and primary caregiver mainly influenced patient's discharge readiness and explained 63.0% of the variance. The low discharge readiness could predict more risk of post-discharge coping difficulty (r = -0.729, p < 0.01) and unplanned readmission (t = -2.721, p < 0.01). Discharge readiness among patients with oesophageal cancer following oesophagectomy is influenced by various factors, especially the quality of discharge teaching. A high discharge readiness corresponds to good post-discharge outcomes. Healthcare professionals should improve the discharge readiness by constructing high-quality discharge teaching, cultivating patients' self-care ability, mobilizing family participation and alleviating dysphagia to decrease adverse post-discharge outcomes among patients with oesophageal cancer. Patients with oesophageal cancer after oesophagectomy who met the inclusion criteria were recruited.

Patient and Caregiver Satisfaction and Quality of Life during Peanut Oral Immunotherapy at a Pediatric Academic Food Allergy Center

Patient and Caregiver Satisfaction and Quality of Life during Peanut Oral Immunotherapy at a Pediatric Academic Food Allergy Center

Long-Term Consequences of Parenting by Another Child in a Population with Child Malnutrition

Malnutrition is a pervasive health concern around the world. Its impact is related to its severity, age at which it begins, and duration. As of now, the impact of the mother’s psychological variables on maltrunition have been hardly studied. In particular, research showing the impact of having a mother raised by a child instead of an adult is absent from the literature. The goal of this work was to fill that gap. The sample consisted of 111 mother-child dyads assisting the Argentinean centers, that support families whose children are exposed to resource scarcity conditions and diagnosed with malnutrition. In Particular, we aimed to assess the effect of being reared by a child on future caregiver quality and stress responses, in a population with child malnutrition. Given the absence of previous studies, the nature of the present work was exploratory. We found that mothers that were raised by a child reported higher levels of perceived stress at present and a lower quality of caregiving during infancy. Additionally, they feel incapable of coping with their problems and unable to control the events that affect them. These findings are discussed in the context of Attachment Theory and social buffering.

ENABLE-SG (Educate, Nurture, Advise, Before Life Ends for Singapore) as a proactive palliative care model: protocol for a hybrid type 1 effectiveness-implementation randomized wait-list controlled trial

BackgroundSpecialist palliative care is often provided late in the patient’s disease trajectory in response to uncontrolled symptoms. Shifting from this reactionary illness-stress paradigm to a proactive health-wellness approach, the ENABLE (Educate, Nurture, Advise, Before Life Ends) telehealth model aims to enhance the coping, stress and symptom management, self-care, and advance care planning skills of patients with advanced cancers and their caregivers. The ENABLE model has been culturally adapted to Singapore (ENABLE-SG) and pilot-tested. A hybrid type 1 effectiveness-implementation design will be used to evaluate the effectiveness of ENABLE-SG while collecting real-world implementation data.MethodsThis single-centre, assessor-blind, wait-list (immediately vs. 6 months) randomized controlled trial will recruit 300 adult patients within 60 days of an advanced cancer diagnosis and their family caregivers from the National Cancer Centre of Singapore. ENABLE-SG comprises structured psychoeducational sessions with a telehealth coach, covering essential topics of early palliative care. Participants will be assessed at baseline and every 3 months until patient’s death, 12 months (caregivers), or end of study (patients). The primary outcome is patient quality of life 6 months after baseline. Secondary patient-reported outcomes include mood, coping, palliative care concerns, and health status. Secondary caregiver-reported outcomes include caregiver quality of life, mood, coping, and care satisfaction. Mixed-effects regression modelling for repeated measurements will be used. To assess the effectiveness of ENABLE-SG versus usual care, patient and caregiver outcomes at 6 months will be compared. To compare earlier versus delayed ENABLE-SG, patient and caregiver outcomes at 12 months will be compared. Within the hybrid type 1 effectiveness-implementation design, implementation outcomes will be evaluated in both the early and delayed groups. Acceptability, adoption, appropriateness, and feasibility will be assessed using a feedback survey and semi-structured interviews with a purposive sample of patients, caregivers, and healthcare providers. Transcribed interviews will be analysed thematically. Other implementation outcomes of penetration, fidelity, and cost will be assessed using records of study-related processes and summarized using descriptive statistics. A cost-effectiveness analysis will also be conducted.DiscussionThis study will assess both effectiveness and implementation of ENABLE-SG. Insights into implementation processes can facilitate model expansion and upscaling.Trial registrationRegistered prospectively on ClinicalTrials.gov, NCT06044441. Registered on 21/09/2023.

Identifying barriers and facilitators to care for infants with bronchopulmonary dysplasia after NICU discharge: a prospective study of parents and clinical stakeholders.

Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance immediate caregiving activities with future health outcomes; and integrating primary care, specialty, and community supports. Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

Global Research on Care-Related Burden and Quality of Life of Informal Caregivers for Older Adults: A Bibliometric Analysis

As global populations continue to undergo demographic aging, the role of caregivers in providing essential support and assistance to older adults has become increasingly prominent. This demographic shift has led to a growing reliance on informal caregivers, often family members, who take on the responsibilities of caring for older adults. This not only affects immediate family dynamics but also holds broader implications for societal sustainability. The primary objective of this bibliometric analysis is to comprehensively examine the worldwide research output related to the quality of life and caregiver burden among individuals providing care to older adults. By understanding the worldwide research output related to caregivers and their quality of life and burden, we can assess the long-term sustainability of caregiving practices. We retrieved studies with titles containing the terms “caregivers”, “burden”, “quality of life”, and “aged” from the Web of Science (WOS) database. The collected publications were then subjected to analysis using the “bibliometric” package in the R programming environment. A total of 44 publications from 2006–2023 were included in the analysis. Spain emerged as the leading contributor in terms of the number of publications, accounting for 21.9%, followed by the USA at 16.5% and China at 13.6%. The most prolific institution was Kaohsiung Medical University, Taiwan, responsible for 25% of the publications. Among the authors, Cura-Gonzalez I.D. had the highest number of articles, contributing four publications, or 9.1% of the total output. An analysis of co-occurring keywords revealed that the predominant focus of the research revolved around caregiver burden, quality of life, health, care, stress, and impact, reflecting enduring areas of interest within this field. This bibliometric analysis may serve as a tool to provide insights into the current state of research on caregiver burden and quality of life among those caring for older adults. The results of this study can contribute to the assessment of research strategies and the encouragement of global cooperation in the field of care for older adults. By considering the multidimensional nature of caregiving challenges and promoting international cooperation, strides can be made towards sustainable caregiving practices that ensure the wellbeing of both caregivers and the aging population, thus safeguarding the sustainability of healthcare systems worldwide.