Life Of Caregivers Research Articles

Multimorbidity in neurodegenerative diseases: a network analysis

ABSTRACT The socioeconomic costs of neurodegenerative diseases (NDs) are highly affected by comorbidities. This study aims to enhance our understanding of the prevalent complications of NDs through the lens of network analysis. A multimorbidity network (MN) was constructed based on a longitudinal EHR dataset of 93,647,498 diagnoses of 824,847 patients. The association between the conditions was measured by two metrics, i.e. Phi-correlation and Cosine Index (CI). Based on multiple network centrality measures, a fused ranking list of the prevalent multimorbidities was provided. Finally, class-level networks depicting the prevalence and strength of diseases in different classes were constructed. The general MN included 928 diseases and 337,253 associations. Considering a 99% confidence level, two networks of 575 relationships were constructed based on Phi-correlations (73 diseases) and CI (102 diseases). Five out of 19 ICD-9 categories did not appear in either of the networks. Also, ND’s immediate MNs for the top 50% of the significant associations included 42 relationships, whereas the Phi-correlation and CI networks included 36 and 34 diseases, respectively. Thirteen diseases were identified as the most notable multimorbidities based on various centrality measures. The analysis framework helps practitioners toward better resource allocations, more effective preventive screenings, and improved quality of life for ND patients and caregivers.

Challenges Faced By Families of SMA Patients

SMA, a genetic neuromuscular disease that affects the control of muscle movement and results in severe motor disorders, is among the rare diseases. Due to the low prevalence of rare diseases and serious problems with correct diagnosis, there may be delays in diagnosis. When the studies on SMA are examined, it is known that the issues related to diagnosis are mostly emphasised, but a limited number of studies have been conducted on the current issues of patients with SMA or their caregivers. In addition to studies on treatment, it would be useful to consider the patient and his/her environment together in studies on the quality of life of patients and caregivers. Examining the concept of quality of life in SMA disease will form the basis for studies on quality of life, and at the same time, the continuity of studies on the subject will be ensured. In this sense, current issues the treatment of patients diagnosed with SMA was addressed in this study. The fact that these patients experience significant deficiencies such as respiratory impairment, malnutrition and skeletal deformity causes them to face difficulties in meeting their basic needs, especially in nutrition and toileting. These problems reduce the quality of life of patients and their relatives. Therefore, early diagnosis and providing medical, psychological, and social support to patients and their relatives will be effective in their quality of life. In this review, recommendations were made to address the current issues of SMA patients and their relatives.

Cannabinoids and Genetic Epilepsy Models: A Review with Focus on CDKL5 Deficiency Disorder

Pediatric genetic epilepsies, such as CDKL5 Deficiency Disorder (CDD), are severely debilitating, with early-onset seizures occurring more than ten times daily in extreme cases. Existing antiseizure drugs frequently prove ineffective, which significantly impacts child development and diminishes the quality of life for patients and caregivers. The relaxation of cannabis legislation has increased research into potential therapeutic properties of phytocannabinoids such as cannabidiol (CBD) and Δ9-tetrahydrocannabinol (THC). CBD’s antiseizure properties have shown promise, particularly in treating drug-resistant genetic epilepsies associated with Lennox–Gastaut syndrome (LGS), Dravet syndrome (DS), and Tuberous Sclerosis Complex (TSC). However, specific research on CDD remains limited. Much of the current evidence relies on anecdotal reports of artisanal products lacking accurate data on cannabinoid composition. Utilizing model systems like patient-derived iPSC neurons and brain organoids allows precise dosing and comprehensive exploration of cannabinoids’ pharmacodynamics. This review explores the potential of CBD, THC, and other trace cannabinoids in treating CDD and focusing on clinical trials and preclinical models to elucidate the cannabinoid’s potential mechanisms of action in disrupted CDD pathways and strengthen the case for further research into their potential as anti-epileptic drugs for CDD. This review offers an updated perspective on cannabinoid’s therapeutic potential for CDD.

Recommendations for Psychosocial Support for Long-Distance Caregivers of Terminally Ill Patients

ContextThe provision of appropriate psychosocial support has a significant impact on quality of life for informal caregivers of terminally ill patients. Long-distance caregivers have specific wishes and needs for psychosocial support. ObjectivesTo date, no formal support measures for long-distance caregivers of terminally ill patients have been developed in Germany. The national Delphi study aimed at systematically and empirically generating recommendations for psychosocial support measures, tailored to this population. MethodsRecommendations were formulated on the basis of qualitative interviews exploring the support experiences and unmet needs of long-distance caregivers of terminally ill patients. Experts from hospice and palliative care rated the relevance and feasibility of 10 recommendations using two 4-point Likert-type scales. Additionally, suggestions for improvement were captured via free text fields. Recommendations were deemed to have achieved consensus when ≥ 80% of participants indicated “strongly agree” or “somewhat agree” for both relevance and feasibility. ResultsA total of 26 experts completed two Delphi rounds. Following the first round, eight of the 10 recommendations were revised according to participant feedback. After the second round, consensus was achieved for five of these revised recommendations. Three recommendations were rejected, as participants regarded them unfeasible due to a perceived lack of personnel resources. ConclusionThe consensus-based recommendations represent the first empirically grounded guidelines in Germany aimed at addressing the psychosocial needs of long-distance caregivers of terminally ill patients. The recommendations seek to raise awareness among both professional and voluntary workers regarding the specific support requirements of this understudied population.

Caring for Carers: Association between Care-giving and Quality of Life of Family Carers of Spinal Cord Injury Survivors in Pakistan

Caring for someone with a spinal cord injury (SCI) has always been a family endeavor in developed as well as developing countries like Pakistan. Majority of people with SCI need assistance of others to carry out daily life activities i.e., eating, self-care, transportation and this functional dependence of patients on their attendant affect Quality of Life (QOL) of caregivers. Present study was designed to find the relationship between caregiver burden, psychosocial factors and QOL among caregivers. Caregiver Burden Inventory-SCI and WHOQOL was used to measure study variables. Cross-sectional research design having purposive sampling technique was used to gather data from spinal units of various hospitals of Pakistan. Sample size includes N= 255 family caregivers of SCI patients. Correlation analyses were applied to find the relationship between psychosocial factors, caregiver burden and QOL. Results showed that caregiver burden was significantly negatively correlated with quality of life and positively correlated with care-giving hours, duration of injury, and number of helpers involved in care-giving process. Furthermore, female caregivers showed high level caregiver burden and low levels of quality of life as compared to male counterparts. Similarly, married persons scored higher on caregiver burden and whose patients had paraplegic nature of injury. In Pakistan, there are no respite care programs for carers, The abovementioned findings are helpful in planning psychotherapeutic interventions and tailored caregiver training programs to lessen the impact of caregiver burden on caregivers and to boost their quality of life.

The effect of dwelling size on the mental health and quality of life of female caregivers living in informal tiny homes in Hong Kong

BackgroundAlthough the adverse impact of substandard informal housing has been widely documented, most studies concentrated on developing societies, thereby leaving informal housing in developed regions underexplored. This study examines Hong Kong, where limited dwelling size is a distinctive feature that characterises informal housing, to explore the impact of housing informality on mental health, with a particular focus on dwelling size. It centers on subdivided units (SDUs), which are tiny compartments partitioned from a large domestic quarter, to understand how housing informality and housing size affect the mental well-being of female caregivers, who typically bear the brunt of the housework.MethodsIn partnership with nongovernment organisations in three SDU-abundant districts, this mixed-methods study conducted a survey on 413 female caregivers aged 18—65 and qualitative research combining ethnographic observations and in-depth interviews on 36 families living in SDUs in Hong Kong between 2021 and 2023. The mental health outcomes and health-related quality of life (HRQoL) of the participants were assessed by using the Depression, Anxiety, and Stress Scale-21 and a EuroQol-5 Dimension-5 Level questionnaire.ResultsDepression, anxiety and stress were prevalent across the female caregivers living in SDUs (12.4%), as well as a significantly lower HRQoL compared with that of the general population (0.882 vs. 0.919). Findings showed that a total floor area smaller than 13.0 m2 was associated with increased likelihood of experiencing anxiety and depression and reduced HRQoL. Cramped living space adversely affected the caregivers’ well-being through the 1) physical, 2) relational and 3) personal aspects of home experiences. Negative experiences at home can cause housework burnout, exacerbate family conflicts and lead to feelings of repression and low self-efficacy.ConclusionsThis study contributes to the understanding of the consequences of housing informality in diverse geographical contexts and illuminates the effect of dwelling size by identifying the mechanisms through which housing size can affect the mental well-being of residents, which may vary depending on their family status. The findings yield important policy implications, including the need to establish a minimum space standard for subdivided residential dwellings and ensure equitable access to community spaces for deprived families.

Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study

BackgroundSickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.MethodsValidated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.ResultsSixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.ConclusionCaring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.

Assessment of the Quality of Life and Family Function in Attention Deficit Hyperactivity Disorder Caregivers in Al-Ahsa, Saudi Arabia.

Background Attention deficit hyperactivity disorder (ADHD) is the most prevalent neurobehavioral disorder in children and teenagers. The condition is debilitating, affecting numerous cognitive and behavioral processes and leading to substantial long-term consequences. Affected individuals, their families, and society as a whole bear a heavy functional, psychological, and financial cost. Aim The objective of this study was to evaluate the quality of life (QOL) among parents of children with ADHD diagnoses, as well as the burden and level of dysfunction in the family. Additionally, to ascertain the sociodemographic factors that influence these issues. Methods This cross-sectional study used an online survey to collect data from caregivers of children with a confirmed diagnosis of any type of ADHD who were exhibiting symptoms before the age of seven, speaking Arabic fluently and consented to take part in the study. The Arabic version questionnaire of the World Health Organization Quality of Life instrument (WHOQOL-BREF) was used to assess the QOL, and the Zarit Burden Interview questionnaire was employed to assess the degree of the experienced burden. Participants were recruited by a systematic random sampling method. Results A total of 103 ADHD caregivers were included in the study. A total of 89 out of 103 (86.4%) participants reported having various degrees of burden. There was a significant relation between the marital status of the caregiver and the degree of burden (p=0.024). Divorced caregivers were (4, 57.1%) severely burdened. Ninety out of 103 participants (87.4%) reported having dysfunctional families, and the majority of them (60, 60.1%) reported moderate family dysfunction. All quality-of-life domains were negatively impacted, with the environmental domain experiencing the most disruption. The overall four subdomains of QOLdid not differ significantly with various sociodemographic characteristics. Conclusion There was a high prevalence of burden and family dysfunctionamong caregivers of ADHD children. Marital status was associated with a significant impact on the level of burden.In addition, there was a detrimental influence on every aspect of quality of life, with the environmental domain suffering the most. It is important to take into account family therapy and other interventions that strengthen caregivers' and families' relationships.

Exploring Factors Influencing the Physical and Mental Quality of Life of Caregivers of Cancer Patients: A Cross-Sectional Study at Hassan II University Hospital Center.

Background Cancer is a serious public health problem worldwide, causing an impact not only on the patient's quality of life (QoL) but also on their caregiver. This study aims to assess the socio-demographic characteristics, physical and mental QoL, and associated factors among caregivers of cancer patients at the Hassan II University Hospital Center in Fez, Morocco. Methods This is a cross-sectional study of 247 caregivers of cancer patients. Their QoL including physical and mental health aspects was assessed using a 12-item Short Form health survey (SF-12). Statistical analysis was conducted utilizing IBM SPSS Statistics for Windows v26.0 (IBM Corp., Armonk, USA). This included calculating frequency distributions and percentages. The general and socio-demographic data associated with QoL were analyzed using the student's t-test and one-way analysis of variance (ANOVA). Only variables with p-value <0.05 were considered statistically significant. Results The majority of the participants were 40 years old and over, and 54.3% of the total participants were women. The average physical QoL score was 47.32 (±7.08), while the average mental QoL score was 31.64 (±14.44).For caregivers, certain personal attributes and circumstances were found to influence their mental and physical QoL. Age, gender, and being unemployed were common factors impacting both the mental and physical well-being of caregivers. Moreover, being married (P=0.019) was an additional factor affecting their physical QoL. In contrast, specific aspects related to the caregiving role itself also played a significant role. Caregivers who were close family members of patients (P=0.0001) and those providing care for patients with genitourinary cancer (P=0.048) experienced a notable detrimental effect on their mental QoL. Conclusion This study highlights several factors associated with the poor QoL of caregivers, such as gender, age, professional activity, and the relationship with the patient. It is imperative to establish a specific support system for caregivers of cancer patients, including social and economic assistance, to enhance their physical and mental QoL.

Health-Related Quality of Life of Family Caregivers in the United States, 2021–2022: A National Cross-Sectional Analysis

Health-Related Quality of Life of Family Caregivers in the United States, 2021–2022: A National Cross-Sectional Analysis

FATORES ASSOCIADOS À QUALIDADE DE VIDA DE CUIDADORES DE IDOSOS COM DEMÊNCIA

The objective of this study was to analyze the factors that influence the quality of life of caregivers of elderly people with Alzheimer's dementia. An integrative literature review study was conducted using the secondary databases Virtual Health Library, Latin American and Caribbean Health Sciences Literature, Scientific Electronic Library Online and Online System for Search and Analysis of Medical Literature based on the specific descriptors retrieved in the Health Sciences Descriptors. The factors associated with the quality of life of caregivers of elderly people with Alzheimer's dementia were burden, functional decline and dependence of the elderly to perform activities of daily living, degree of dementia severity, longer time since diagnosis and living with the demented elderly, socioeconomic conditions, psychological stress and decline in social relationships, environment domain, psychological and physical. It is essential that care is also cared for, both from the point of view of health and in relation to public policies of social security and assistance.

Aducanumab in Alzheimer's Disease: A Critical Update.

Alzheimer's disease (AD) is a complex neurological disorder that results in cognitive decline. The incidence rates of AD have been increasing, particularly among individuals 60 years of age or older. In June 2021, the US FDA approved aducanumab, the first humanized monoclonal antibody, as a potential therapeutic option for AD. Clinical trials have shown this drug to effectively target the accumulation of Aβ (beta-amyloid) plaques in the brain, and its effectiveness is dependent on the dosage and duration of treatment. Additionally, aducanumab has been associated with improvements in cognitive function. Biogen, the pharmaceutical company responsible for developing and marketing aducanumab, has positioned it as a potential breakthrough for treating cerebral damage in AD. However, the drug has raised concerns due to its high cost, limitations, and potential side effects. AD is a progressive neurological condition that affects memory, cognitive function, and behaviour. It significantly impacts the quality of life of patients and caregivers and strains healthcare systems. Ongoing research focuses on developing disease-modifying therapies that can halt or slow down AD progression. The pathogenesis of AD involves various molecular cascades and signaling pathways. However, the formation of extracellular amyloid plaques is considered a critical mechanism driving the development and progression of the disease. Aducanumab, as a monoclonal antibody, has shown promising results in inhibiting amyloid plaque formation, which is the primary pathological feature of AD. This review explores the signaling pathways and molecular mechanisms through which aducanumab effectively prevents disease pathogenesis in AD.

Receiving and adjusting to a diagnosis of ALS: A qualitative study with informal caregivers.

Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers. The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis. We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the "diagnosis journey." Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on "diagnosis communication pitfalls" where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants' reactions and adjustments post-ALS diagnosis are described in "the aftermath of diagnosis." In this third theme, we highlight participants' shock and their need to rethink overall life plans and roles in their family. Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.

Barriers and Strategies to Effective Serious Illness Communication for Patients with End-Stage Liver Disease in the Intensive Care Setting.

Background: Patients with end-stage liver disease (ESLD) often require Intensive Care Unit (ICU) admission during the disease trajectory, but aggressive medical treatment has not resulted in increased quality of life for patients or caregivers. Methods: This narrative review synthesizes relevant data thematically exploring the current state of serious illness communication in the ICU with identification of barriers and potential strategies to improve performance. We provide a conceptual model underscoring the importance of providing comprehensible disease and prognosis knowledge, eliciting patient values and aligning these values with available goals of care options through a series of discussions. Achieving effective serious illness communication supports the delivery of goal concordant care (care aligned with the patient's stated values) and improved quality of life. Results: General barriers to effective serious illness communication include lack of outpatient serious illness communication discussions; formalized provider training, literacy and culturally appropriate patient-directed serious illness communication tools; and unoptimized electronic health records. ESLD-specific barriers to effective serious illness communication include stigma, discussing the uncertainty of prognosis and provider discomfort with serious illness communication. Evidence-based strategies to address general barriers include using the Ask-Tell-Ask communication framework; clinician training to discuss patients' goals and expectations; PREPARE for Your Care literacy and culturally appropriate written and online tools for patients, caregivers, and clinicians; and standardization of documentation in the electronic health record. Evidence-based strategies to address ESLD-specific barriers include practicing with empathy; using the "Best-Case, Worst Case" prognostic framework; and developing interdisciplinary solutions in the ICU. Conclusion: Improving clinician training, providing patients and caregivers easy-to-understand communication tools, standardizing EHR documentation, and improving interdisciplinary communication, including palliative care, may increase goal concordant care and quality of life for critically ill patients with ESLD.

Psychometric validation of the Persian version of the CarerQol-7D instrument on caregivers of patients with multiple sclerosis.

Background: Providing informal care can deeply influence, both physically and emotionally, the quality of life (QoL) of caregivers, especially when the disease becomes chronic. CarerQol-7D is one of the most common instruments for measuring informal care. We aimed to develop a Persian version of the CarerQol-7D in the context of Iranian caregivers of patients with multiple sclerosis (MS). To this end, we investigated the validity and reliability of the mentioned instrument. Methods: In this cross-sectional study using consecutive sampling method, the backward-forward translation method was used to achieve the Persian version of CarerQol-7D. Structural equation modeling (SEM) was used to perform confirmatory factor analysis (CFA). Cronbach's alpha was also reported for this instrument for the evaluation of internal consistency. Results: This tool was evaluated based on a sample of 452 caregivers of patients with MS from Sina Hospital, Tehran, Iran. Most of the participants were men (62.6%) and spouses of patients (56.6%). Based on the correlation of caregivers' characteristics, the clinical validity of this tool was observed to be relatively moderate. The Cronbach's alpha for this tool was estimated to be 65%. The normed fit index (NFI) (0.906), relative fit index (RFI) (0.812), incremental fit index (IFI) (0.948), Tucker-Lewis index (TLI) (0.892), comparative fit index (CFI) (0.946), and root mean square error of approximation (RMSEA) (0.049) were the model fit indices for the CarerQol-7D instrument. Conclusion: The findings showed good internal consistency and strong validity of the CarerQol-7D. Thus, we suggest researchers use this instrument to measure the QoL of caregivers for use in economic evaluations.

Impact of hemispherotomy on quality of life and burden of caregivers in children and adolescents: a retrospective observational study.

To evaluate QOL and caregiver burden of children and teenagers submitted to hemispherotomy for pharmacoresistant epilepsy, by comparing pre and post-surgical intervention data. Retrospective analysis of pediatric patients submitted to surgical hemispherotomy before intervention (preOP) and their follow-up at 6months (6M PO) and 2years (2Y PO) after surgery. QOL was evaluated through the Quality of Life in Childhood Epilepsy (QVCE-50) questionnaire and caregiver burden, through the Zarit Burden Interview (ZBI) tool. Twenty-two patients were included in the study. Sixteen patients (72%) were classified as Engel I at 2Y PO follow-up. QVCE-50 scale showed improvement of total QOL at 2Y PO. In relation to QVCE-50-specific domains, there was an improvement in the physical domain and in the cognitive-education a decrease in psychological and a stabilization in social/familiar domain scores. The majority of caregivers classified their burden as mild to moderate, with no PO improvement. Hemispherotomy represents an effective seizure control treatment, as well as it contributes to improvement of QOL, particularly in the physical domain and in spite of children's physical and cognitive limitations. However, no improvement in caregiver burden was observed, probably due to the chronic condition of these patients, which might be worsened by social issues.

Insomnia symptoms among caregivers of persons with cognitive decline in an outpatient memory clinic

BackgroundSignificant insomnia symptoms can have important impacts on the health and quality of life of caregivers of persons with cognitive decline (PwCD). ObjectiveTo characterize the prevalence of clinically significant insomnia symptoms using the recommended community cutoff for the Insomnia Severity Index (ISI; ≥10) and identify correlates of the presence of symptoms. MethodsEighty PwCD caregivers were recruited from a memory and aging care clinic in an academic medical center and completed all study procedures (Mage = 66.05 ± 13.45 years; 93.75 % non-Hispanic White, 71.00 % spouses, 81.25 % co-dwelling with PwCD). Caregivers completed the ISI, Hospital Anxiety and Depression Scale, and Zarit Burden Interview (12-item). ResultsOne-third of PwCD caregivers reported clinically significant insomnia symptoms. Caregivers reporting these symptoms were more likely to report difficulty sleeping due to stressful/anxious thoughts about the PwCD compared to caregivers without insomnia symptoms (p < .001). No group differences were detected between caregivers with and without insomnia symptoms based on reported frequency of PwCD nighttime care needs or behaviors. Caregivers with insomnia symptoms endorsed significantly higher depression symptoms, anxiety symptoms, and caregiving psychological burden (ps < 0.001). ConclusionsPwCD stress and psychological burden, but not PwCD nighttime factors, appear to be associated with clinically significant insomnia symptoms among PwCD caregivers. Existing evidenced-based treatments for insomnia, such as cognitive behavioral therapy for insomnia, may be effective in this cohort.

Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis – the SAPIENCE study protocol

BackgroundN-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined.MethodsSAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another.DiscussionSAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.

Quality of Life, Coping Strategies, and Psychosocial Support Status of Caregivers Having Children With Neurodevelopmental Disabilities: A Cross-Sectional Study From Bangladesh.

Background Although caregiving is considered a normal phenomenon for parents, delivering care to a child with neurodevelopmental disabilities can be taxing and disastrously impact parents' quality of life (QoL). This study explored the relationship between QoL, coping strategies, and psychosocial support status of caregivers of children with neurodevelopmental disabilities. Methodology This cross-sectional study included 906 caregivers of children having neurodevelopmental disabilities utilizing the World Health Organization Quality of Life Brief and Perceived Stress Scale. A tailored questionnaire gauged coping strategies and psychosocial support. Linear regression was used to identify significant contributors. Results Most caregivers (78.8%) experienced a moderate level of stress, and their QoL scores were 14.4 (SD = 2.5) for physical health, 12.0 (SD = 2.4) for psychological health, 14.6 (SD = 1.9) for social relationships, and 12.1 (SD = 2.1) for the environment. Mothers had the lowest QoL of all caregivers. Negative influences on QoL encompassed caregiver and child age, perceived stress, and lower socioeconomic status. A higher coping score positively predicted a high health-related QoL score. Gender differences were observed in psychosocial support sources. Conclusions The study underscores the need for policymaking considering findings to develop psychosocial intervention programs for enhancing the QoL of caregivers of children with neurodevelopmental disabilities.

Mediating Role of Social Support and Family Functioning on Quality of Life of Family Caregivers of Individuals With Alcohol Use Disorder

Background: Caring for persons with alcohol use disorder (AUD) significantly affects the quality of life (QoL) of caregivers. According to Lazarus and Folkman’s Stress and Coping Model (1984), the severity of alcohol consumption (SAC) is a major stressor for AUD caregivers. These stressors impact well-being, with QoL linked to caregivers’ coping resources, especially social support (SS) and family functioning (FF). The study aimed to investigate the mediating roles of SS and FF in the relationship between the SAC and caregivers’ QoL. Material and Methods: A cross-sectional study was conducted in two psychiatric hospitals in Amritsar city, Punjab. We used a purposive sampling technique to collect data from 128 family caregivers aged 18 and above who were caring for male patients with AUD aged between 20 and 65. The assessment tools used were the World Health Organization Quality of Life-Brief Version (WHOQOL-BREF), Alcohol Use Disorders Identification Test (AUDIT), Family Assessment Device (FAD), and PGI Social Support Questionnaire (PGI SSQ). Results: There is a significant and partial mediation of the association between SAC and QoL by both SS and FF ( P &lt; .001, 99% CI). Moreover, SAC (r = –0.519), FF (r = –0.603), and SS (r = 0.641) showed significant correlations with caregivers’ QoL ( P &lt; .001). The mean scores for SAC, SS, FF, and QoL were 22.66 (11.38), 50.88 (9.45), 127.18 (43.85), and 84.13 (18.70), respectively, suggesting moderate SAC in patients, moderate to high perceived SS levels, moderate perception of family dysfunction, and moderate to high QoL among the caregivers. Conclusion: SAC detrimentally impacts caregivers’ QoL both directly and indirectly through SS and FF, with the latter serving as mediators, partially mitigating SAC’s negative impact. Clinical implications underscore the importance of tailored interventions, emphasizing the strengthening of support systems and consideration of diverse FF domains for personalized approaches. The findings contribute valuable insights for developing targeted interventions customized to the specific needs of AUD caregivers to enhance their overall QoL.