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This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program.
Methods
Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software.
Results
Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care.
Significance of results
The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.
The World Health Organization (WHO) proclaimed September 21 as World Alzheimer’s Disease Awareness Day and extended the observance to the entire month. Various awareness campaigns are being conducted around the world, with special emphasis on the importance of education to improve the quality of life for patients, families, and the community at large, and to eliminate stigma and ageism.
It is estimated that there are approximately 44 million people worldwide with some form of dementia, while in the United States it reaches 5.4 million. In Puerto Rico, it is estimated that there are approximately 60,000 people with Alzheimer’s disease. An AARP study (2021) showed that there are over 500,000 caregivers of older adults, making Puerto Rico one of the top three countries with the largest aging population and the 6th country in the world. While in Latin America and the Caribbean there is a prevalence between 6.2 and 6.5 per 100 adults aged 60 years or older (WHO).
This health and social situation require an educated and empowered society to meet the challenges. Muñoz et. al (2023) conducted a qualitative study with caregivers and found that 91% of the participants stated that training would help them provide better care to the elderly. Social work is one of the main disciplines dealing with this social phenomenon and should therefore play a leading role in education and therapeutic intervention.
For the past five years, the Department of Social Work at Inter-American University, Metro Campus, has joined and supported the cause through the celebration of the Alzheimer’s Symposium: A Perspective from the Academy. This event involves the entire university community, as well as the community at large, which includes caregivers, government and non- profit agencies, and professionals from various disciplines. There will be concurrent lectures, Discussions among local and international professionals, a film forum, poster presentations, artistic expressions, and educational tables. The 6th Symposium will be held on September 20, 2024. The Symposium is promoted through various media. This activity has generated alliances, recommendations and new educational projects that contribute to the well-being of older adults.
Introduction: Desatar Argentina is an interdisciplinary group of professionals dedicated to eliminating the use of physical restraints in gerontological care settings. Since its foundation in 2017 under the auspices of the Argentine Society of Gerontology and Geriatrics (SAGG), the group has been committed to promoting respect and dignity for older adults, guided by the International Convention on the Rights of Older Persons.
Mission: Desatar Argentina’s mission is to raise awareness about the harm caused by physical restraints and to promote strategies for their elimination, generating a cultural change within health and social care organizations. We aim to sensitize both society and healthcare professionals about the importance of respecting the dignity of older adults.
Trajectory: Since its inception, Desatar Argentina has undertaken numerous activities, including:
In 2018, the first “Desatar para cuidar’’ event at LedorVador.
In 2019, presenting the research on the effectiveness of a multicomponent intervention program to eliminate physical restraints in a long-term care facility (which also obtained an award) at the XVI Argentine Congress of Gerontology andGeriatrics.
Publications in the SAGG Journal and other media to widely disseminate the group’s message.
Training courses for care home professionals, focusing on tools and strategies to eliminate the use of physicalrestraints.
Future Perspectives: Desatar Argentina will continue to work to:
Promote research and dissemination of new care modalities that prioritize the fundamental rights of olderadults.
Foster ongoing training of health and social care professionals on the risks and alternatives to restraints.
Promote sustainable cultural change within care centers to ensure a restraint-free environment focused on respect and dignity for older adults.
Undertake the evaluation and assessment of chemical restraints.
Promote the elimination of physical restraints in the hospital environment.
Conclusions: Desatar Argentina has shown that it is possible to eliminate physical restraints in long-term care facilities, significantly improving the quality of life for older adults. Continuous training and awareness-raising are essential to promote restraint-free care and transform organizational culture in favor of the rights and dignity of older adults.
Although medical advancements have improved the mortality of CHD, morbidity still exists, impacting patient quality of life. Returning to baseline in the early surgical recovery phase is an area of potential improvement. This preliminary project aims to qualitatively understand CHD family perspectives concerning the immediate postoperative recovery phase. The participating patients enrolled in the Enhanced Recovery After Surgery program, a postsurgical symptom management tool utilised in adult centres and broadening into pediatrics. Twenty-three of 27 contacted families answered open-ended questions 1 to 3 months postoperatively regarding difficulties experienced during their first week home. They reviewed a list of symptoms including: difficulties with pain, nausea, activity, sleep, appetite, bowel or urinary systems, and taking medications. A qualitative thematic analysis was performed with the open responses, as well as a quantitative assessment of the types of issues that made recovery challenging. Participants struggled most with sleep (78%), returning to activity (70%), and pain (57%). Open-ended responses suggested that an inability to do daily activities, sleep (frequently impacted by pain), and inadequate resources most negatively impacted recovery. Given these findings, investigating postoperative sleep regimens and effective pain plan components may prove useful, in addition to the further development of early mobility programs. The positive and negative experiences highlighting the desire for readily available medical guidance enforce the need for open communication between families and team members, potentially aided by digital tools. Ultimately, further data could support the development of a standardised protocol to better the immediate postoperative quality of life for CHD families.
Quality of life is decreased in bipolar disorders (BD) and contributes to poor prognosis. However, little is known about the causal pathways that may affect it. This study aimed to explore health-related QoL (HRQoL) in BD and investigate its relationship with cognition and psychosocial functioning.
Methods
This multicenter cross-sectional study used a neuropsychological battery to assess five cognition domains. Functioning was evaluated using global and domain-based tools, and health-related HRQoL was assessed using the EQ-5D-3L. Structural equation modeling was used to test whether the association between cognition and HRQoL would be mediated by functioning in BD while controlling for covariates such as residual depression, anxiety, antipsychotic medication, and psychotic features.
Results
We included 1 190 adults with euthymic BD. The model provided a good fit for the data. In this model, the direct effect of cognition on HRQoL was not significant (β = − 0.03, z = −0.78, p = 0.433). The total effect of cognition on HRQoL was weak, albeit significant (β = 0.05, z = 3.6, p < 0.001), thus suggesting that cognition affected HRQoL only indirectly through functioning. Anxiety was associated with decreased functioning (β = −0.27, z = −7.4, p < 0.001) and QoL (β = −0.39, z = −11.8, p < 0.001).
Conclusions
These findings suggest that improving cognition may not directly lead to a higher HRQoL. Cognitive remediation is expected to improve HRQoL only through functioning enhancement. They also reveal the potential importance of functional remediation and reduction of comorbid anxiety symptoms in improving HRQoL in BD.
Older adults often have a heightened awareness of death due to personal losses. In many low- and middle-income countries, including Nigeria, conversation about end-of-life issues and advanced care planning (ACP) among older adults is gradually emerging. Our study explored older adults’ knowledge and perceptions towards advanced directives and end-of-life issues in a geriatric care setting in Nigeria.
Methods
A cross-sectional study was conducted among older adults (aged ≥60 years) in a geriatric outpatient clinic. Data were collected using an interviewer-administered, semi-structured questionnaire, tested at a significance level set at alpha 0.05.
Results
The study included 204 participants with a mean age of 71.3 ± 7.2 years, predominantly female (67.2%). Few of the participants have heard about end of life (20.1%), living will (19.1%), power of attorney (19.6%), and ACP (25.9%). About 29.9% of the respondents considered having a living will, of which about 34.4% have written one. Only 23 (11.3%) would consider discussing ACP in the future, 32 (15.7%) would discuss place of care, and 30 (14.7%) place of death. Preparedness for end of life and knowledge of ACP was higher among males, those with formal education, and those with good self-rated health (p < 0.05).
Significance of results
The study highlighted gap in awareness and engagement in ACP among older adults in a country like Nigeria. This lack of knowledge can lead to inadequate end-of-life care and unpreparedness for critical health decisions for older adults in Africa. Thus, improving awareness and understanding of ACP can empower older adults, ensuring their end-of-life preferences are respected, enhancing the quality of care, and reducing the emotional and financial burden on families.
To determine the associations among iron status, depressive/anxiety symptoms, and quality of life (QoL) throughout pregnancy.
Design:
This longitudinal study recruited participants in their 1st trimester (< 13 weeks; n=116) and followed in their 2nd (n=71) and 3rd (n=71) trimesters. Sociodemographic, food security, anxiety, depressive symptoms, and QoL questions were collected. Hemoglobin (Hb), ferritin (Ft), and transferrin saturation (TSAT) were determined. Women were categorized as iron improvers or non-improvers based on changes in iron status. Associations were assessed using difference-in-difference analyses.
Setting:
Cape Coast, Ghana between October 2017 to September 2018.
Participants:
Pregnant women, 18-38 years.
Results:
Improvement in Ft levels from the 1st to 2nd trimester were associated with reduced depressive symptoms (-2.96 vs -0.58, p=0.028), and higher overall QoL (13.99 vs 1.92, p=0.006) particularly role physical (23.32 vs -2.55, p=0.025) and role emotional (27.50 vs 10.06, p=0.025) subscales. Improvement in Hb levels during the same period were linked to less anxiety, particularly fear factor (-2.62 vs -0.51, p=0.020); and worsened physical health aspect of QoL (-21.80 vs -3.75, p=0.005). Improvement in TSAT levels from 2nd to 3rd trimester were associated with increased total anxiety (1.56 vs -0.64, p=0.030) and panic factor (0.45 vs -0.26, p=0.004) and decreased total QoL (-1.08 vs 7.94, p=0.017), specifically role physical (-10.98 vs 11.93, p=0.018).
Conclusion:
Increases in iron status from first to second trimester were related to improvements in psychosocial wellbeing, implying potential benefit of iron supplementation on affect in early pregnancy. Larger studies are needed to confirm these findings.
The coronavirus pandemic has caused concern in the community, especially in patients. Spirituality, hopelessness, and quality of life have an impact on the management of the process in cancer patients during these crisis periods. To investigate COVID-19 anxiety’s mediating role in hopelessness’ relationships with the quality of life and spiritual well-being among cancer patients.
Methods
This study used a cross-sectional design to collect data from cancer patients using self-administered questionnaires. The study recruited 176 cancer patients receiving treatment at a university hospital. The participants completed measures of spiritual well-being, COVID-19 anxiety, hopelessness, and quality of life. Following preliminary analyses, a mediation model was analyzed using the PROCESS macro for SPSS, with the bootstrap method applied (model 4).
Results
The results showed that spiritual well-being was negatively associated with COVID-19 anxiety and hopelessness, and positively associated with the quality of life. COVID-19 anxiety was associated positively with hopelessness, and negatively with the quality of life. Moreover, COVID-19 anxiety mediated the relationship between hopelessness, spiritual well-being, and quality of life.
Significance of results
This study provides evidence for COVID-19 anxiety’s mediating role in the relationship between spiritual well-being and quality of life and hopelessness among cancer patients. The findings suggest that interventions aimed at reducing COVID-19 anxiety may be effective in reducing hopelessness among cancer patients, by promoting higher levels of spiritual well-being and improving quality of life.
Following the declaration of the pandemic, students’ education has to be done at a distance due to the COVID-19 pandemic. This study evaluated the association of university students’ COVID-19 phobia, pain severity, sleep quality, physical activity, fatigue levels, and quality of life on students’ achievement.
Methods
This cross-sectional survey was conducted by including 353 students from the university faculty of health sciences. The Pain Quality Assessment Scale was used to assess pain, the Fatigue Severity Scale to evaluate fatigue, the COVID-19 Phobia Scale to assess fear of disease, the International Physical Activity Questionnaire Short Form to evaluate physical activity level, and the Jenkins Sleep Scale to assess sleep quality, The Short Form-36 to determine the quality of life, and Online Learning Systems Acceptance Scale to evaluate satisfaction with distance education. Multiple linear regression and path analysis were conducted to identify factors associated with academic achievement.
Results
It was found that age (B = 0.045; P = 0.040), BMI (B = −0.200; P = 0.004), and physical (B = 0.128; P = 0.008), psychological (B = 0.057; P = 0.012) and social (B = 0.189; P = 0.018) domains of quality of life were associated with the level of achievement.
Conclusions
Precautions must be taken to improve students’ academic achievement and quality of life in preparing for the future against infectious and epidemic diseases.
Polycystic ovary syndrome (PCOS) is a common hormonal disorder in women of reproductive age, associated with increased risks of metabolic disorders, depression and reduced quality of life. This study examined the impact of the Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) diet on mental health, PCOS-related quality of life (PCOSQ), anthropometric indices, hirsutism, and metabolic/hormonal parameters in women with PCOS. Total of 52 women with PCOS, aged between 18 and 45 years, were randomly assigned to either the low calorie MIND diet group or the control group. Anthropometric data, depression and anxiety scores, serum levels of gonadotropins (luteinizing hormone [LH], follicle-stimulating hormone [FSH]), PCOSQ, and Ferriman-Gallwey score were evaluated before and after the intervention. Outcomes were assessed at baseline and at the end of the 8-week follow-up period. After 8 weeks, the MIND diet significantly reduced depression (β –3·03; 95 % CI: [–5·36, –0·70]; P = 0·011) and anxiety (β –3·54; 95 % CI: [–6·60, –0·49]; P = 0·024) scores compared with the control group. The MIND diet group exhibited significant increases in the emotion (β 0·63; 95 % CI: [0·18, 1·08]; P = 0·007) and body hair (β 0·65; 95 % CI: [0·03, 1·28]; P = 0·04) domains of the PCOSQ compared to the control group. The changes in other parameters did not show significant differences between the two groups. Both the MIND diet and control groups showed improvements in weight and BMI, with a slight advantage for the MIND diet group. These findings suggest that the MIND diet may be beneficial for improving mental health and some aspects of PCOSQ in women with PCOS.
Evidence indicates that ketamine is highly effective, has a lower side effect profile and is better tolerated compared to many augmentation strategies for refractory depression. This, combined with data on psychiatric treatment outcome mediators, suggests that earlier intervention with ketamine could improve outcomes for patients suffering from refractory depression.
People with bipolar disorder (BD) often show inaccurate subjective ratings of their objective cognitive function. However, it is unclear what information individuals use to formulate their subjective ratings. This study evaluated whether people with BD are likely using information about their crystallized cognitive abilities (which involve an accumulated store of verbal knowledge and skills and are typically preserved in BD) or their fluid cognitive abilities (which involve the capacity for new learning and information processing in novel situations and are typically impaired in BD) to formulate their subjective cognitive ratings.
Method:
Eighty participants diagnosed with BD and 55 control volunteers were administered cognitive tests assessing crystallized and fluid cognitive abilities. Subjective cognitive functioning was assessed with the Cognitive Failures Questionnaire (CFQ), daily functioning was rated using the Multidimensional Scale of Independent Functioning (MSIF) and the Global Assessment of Functioning Scale (GAF), and quality of life was assessed with the Quality of Life in Bipolar Disorder scale (QoL.BD).
Results:
The BD group exhibited considerably elevated subjective cognitive complaints relative to controls. Among participants with BD, CFQ scores were associated with fluid cognitive abilities including measures of memory and executive function, but not to crystallized abilities. After controlling for objective cognition and depression, higher cognitive complaints predicted poorer psychosocial outcomes.
Conclusions:
Cognitive self-reports in BD may represent a metacognitive difficulty whereby cognitive self-appraisals are distorted by a person’s focus on their cognitive weaknesses rather than strengths. Moreover, negative cognitive self-assessments are associated with poorer daily functioning and diminished quality of life.
We describe a development and feasibility study of a Sitting Simple Baduanjin program for advanced cancer patients suffering from the fatigue–sleep disturbance symptom cluster. This study was to evaluate the practicality and safety of the Sitting Simple Baduanjin intervention and determine its preliminary efficacy.
Methods
This work employed a single-arm mixed-methods approach. The primary outcome measures were feasibility (i.e., recruitment, adherence, and satisfaction) and safety. Validated self-report questionnaires were used to evaluate the preliminary effects of the program, including fatigue, sleep quality, and quality of life at the 4th, 8th, and 12th weeks of the intervention. Qualitative interviews were also conducted after the program.
Results
A total of 30 participants were enrolled, of which 23 (77%) completed the 12-week Sitting Simple Baduanjin program. The mean adherence rate was 88% and no adverse events were reported. Statistically significant improvements were observed in terms of fatigue, sleep quality, and quality of life after program completion. Four themes emerged from the qualitative interview data: (a) acceptability of the Sitting Simple Baduanjin technique, (b) perceived benefits of exercise, (c) barriers, and (d) facilitators.
Significance of Results
The findings support the feasibility of the Sitting Simple Baduanjin program for advanced cancer patients and show promise in improving patients’ levels of the fatigue–sleep disturbance symptom cluster and quality of life.
The neutropenic diet (ND) is often recommended to people with cancer to reduce infection risk despite recommendations of clinical guidelines advising against its use. While recent literature suggests the ND does not reduce infection risk, other outcomes related to health, nutrition, and lifestyle are unknown. The aim of this review is to systematically scope the literature on the ND in people with cancer for all outcomes related to clinical health, nutrition, and lifestyle. Scientific databases were systematically searched. Eligible studies were in English, people with any cancer type, consuming an ND, any age group, date, or setting. Eligible study types were randomised control trials, observational studies, systematic reviews, and meta-analyses. Twenty-one studies met the inclusion criteria. Outcomes of interest found were infection rates, fever, mortality, antibiotic use, gastrointestinal side effects, comorbidities, biochemistry, hospitalisation, nutritional status, quality of life (QoL), well-being, and financial costs. Most research has focused on infection and mortality rates with few assessing hospitalisation rates, nutritional status, financial costs, and QoL. Most included studies found no significant differences between ND and comparator diet for mortality, antibiotics use, comorbidities, and QoL; however, several studies reported the ND significantly increased the risk of infection. Gaps in the literature included effect of ND on QoL in an adult population, microbiome, lifestyle changes, and financial burden. Further research is needed regarding how the ND affects the microbiome and QoL of its consumers, but in the interim, it is important for hospitals providing an ND to their patients to liberalise the ND wherever possible.
An aberrant right subclavian artery represents the most common aortic arch vascular anomaly. Conventional wisdom states that these anomalies do not result in dysphagia, but rather serve as “red herrings”. Clearly, in the vast majority of cases, this holds true. Nonetheless, one should never say never.
Methods:
Herein, we present a cohort of four children with debilitating dysphagia resulting from an aberrant right subclavian artery. Subclavian reimplantation via a right posterolateral thoracotomy was performed successfully in all cases.
Results:
Dysphagia resolved postoperatively, and all patients were able to advance to a normal diet. They were able to gain appropriate weight postoperatively and continue to do well at most recent clinical follow-up.
Conclusions:
This case series suggests that aberrant right subclavian artery anatomy should be considered a potential aetiology of dysphagia, albeit rarely. Surgical intervention for select patients can provide dramatic resolution of symptoms.
Patients with univentricular hearts can only be palliated by a staged surgical procedure that carries a high morbidity and mortality risk. The aim of this study was to examine the emotional demands, psychosocial burden, and quality of life of parents with children with univentricular hearts compared to parents of children with a simple heart defect, those with no heart defect and children with chronic diseases.
Methods:
An anonymous questionnaire was created to interview parents about their quality of life, stressors, needs, strategies for coping with illness, and partnership satisfaction.
Results:
73 families participated in the study. Parents of children with univentricular hearts experience a significantly higher psychosocial burden, limitations in daily life, and distress in family interactions, as well as greater emotional distress compared to the other study groups. When comparing the families of children with other chronic diseases (e.g. cystic fibrosis, chronic arthritis and diabetes), these differences remained significant.
Conclusion:
The study confirms a higher psychosocial burden, restrictions in daily life and a lower quality of life of parents with children with univentricular hearts, compared to parents of children with simple heart defects and parents of heart-healthy children or those with other chronic diseases. Since this condition persists until adolescence and adulthood, the families are exposed to special challenges and stresses throughout their lives. This has yet to be adequately addressed in the management of these families.
This study investigates neuropsychological and psychosocial outcomes in patients with traumatic brain injury (TBI) and post-traumatic epilepsy (PTE) compared to a healthy control group.
Method:
Utilizing a quasi-experimental cross-sectional design, the research involved patients with TBI and PTE referred from a Taiwanese medical center. An age- and education-matched control group of healthy adults without traumatic injuries was also recruited. The study involved analyzing retrospective medical records and applying a comprehensive suite of neuropsychological tests and psychosocial questionnaires.
Results:
Executive function measures revealed significantly reduced performance in both the TBI and PTE groups compared to controls. Specifically, the MoCA scores were lowest in the PTE group, followed by the TBI group, and highest in the controls. Measures of subjective symptomatology showed comparably elevated levels in both the TBI and PTE groups relative to controls.
Conclusion:
The research suggests that PTE may intensify the difficulties faced by individuals with TBI, but its impact on overall recovery might not be significant, considering the trajectory of the brain injury itself. Notably, the MoCA results indicate that cognitive deficits are more pronounced in PTE patients compared to those with TBI, underscoring the necessity for targeted neuropsychological assessments. Further investigation is essential to explore PTE’s broader neuropsychological and psychosocial impacts. These findings advocate for tailored care strategies that address both neuropsychological and psychosocial needs, ensuring comprehensive management of TBI and PTE.
Meningiomas are common brain neoplasms that can significantly influence health-related quality of life (HRQOL), yet the factors influencing HRQOL in adult patients remain unclear. We aimed to bridge this knowledge gap by determining these key factors.
Methods:
We conducted a systematic review, searching EMBASE, MEDLINE, CINAHL, Scopus and PsycINFO up to February 2024. We included original, peer-reviewed studies focusing on adult patients (>18 years) with current or past meningioma at any stage of treatment that measured HRQOL or its proxies in relation to patient-, tumour- and treatment-related factors. Two independent reviewers screened abstracts and full-texts, selecting studies with an acceptable risk of bias for data extraction and narrative synthesis. The protocol of this review was registered on PROSPERO (# CRD42023431097).
Results:
Of N = 3002 studies identified, N = 31 studies were included. Key factors found to influence HRQOL in adult meningioma patients include surgery, radiotherapy, neurological function, functional status, comorbidities, sleep quality, psychological impairment, age and employment. Factors related to tumour characteristics yielded inconsistent findings. Heterogeneity and inconsistencies in HRQOL measurement across studies hindered definitive conclusions about the impact of factors on HRQOL.
Conclusion:
Our review elucidates the multifaceted influences on HRQOL in meningioma patients, with significant variability due to patient-, tumour- and treatment-related factors. We emphasize the need for standardized, disease-specific HRQOL assessments in meningioma patients. Collaborative efforts towards consistent, large-scale, prospective research are essential to comprehensively understand and improve HRQOL, thereby enhancing tailored care for this population.
This study addresses the challenges of the ageing population, focusing on enhancing the life of caregivers and the elderly. It proposes a multifaceted solution that allows dependents to live close to their carers, enabling oversight without a need for constant presence. The paper employs empirical studies to ensure a deep understanding of caregiving, capturing the breadth and depth of challenges. Presenting a novel design solution, Hygge, combines physical and system design with technology integration. This prioritises accessibility, cost, maintenance, and adaptability for diverse needs.