Experiences Of Caregivers Research Articles

EXPLORING ARTS-BASED METHODS IN UNPAID CAREGIVING CONTEXTS: A SCOPING REVIEW

Introduction:Unpaid caregiving plays a crucial role in supporting older adults, requiring innovative approaches to understand and enhance caregivers' experiences. Research Objectives: As a response, this scoping review investigates the application of arts-based methods in understanding the caregiving experience, as well as the advantages and limitations of these methods in providing care to diverse populations. Methodology: Building on Arksey and O’Malley's framework, our methodology draws from the Joanna Briggs Institute approach. Eligibility criteria encompassed peer-reviewed publications in English from 2007 to 2022, focusing on unpaid caregivers, arts-based methods, and caregiving experiences. Six comprehensive databases were queried, with the initial searches yielding 761 articles. Full text screening of 66 papers resulted in 19 papers for inclusion in the scoping review. Results: Analysis of the literature revealed the multifaceted applications of arts-based methods in understanding and supporting unpaid caregivers. These encompassed a wide range of creative techniques, such as visual arts, photo elicitation, storytelling, and performance – which provided insights into the emotional, psychological, and social dimensions of caregiving. Findings highlighted the potential for arts-based methods to enhance caregiver well-being, foster self-reflection and self-care, and promote dialogue. Nonetheless, there were notable gaps. Racial and ethnic diversity was often neglected in the studies (addressed in 3 of 19), underscoring the necessity for tailored interventions and methodological considerations for diverse populations. Importantly, dementia caregiving received substantial attention (12 of 19). Final Considerations: This scoping review highlights the growing interest in integrating arts-based methods into caregiving research and interventions amongst qualitative and mixed methods approaches. By mapping out the landscape of existing literature, this review underscores the need for further exploration and methodological refinement to harness the full potential of creative techniques in advancing our understanding of unpaid caregivers' lived experiences. Arts-based approaches hold promise in providing a nuanced and holistic perspective on unpaid caregiving experiences.

Challenges and support experienced by family caregivers seeking antiretroviral therapy services for children living with HIV/AIDS: a phenomenological study in Ghana

BackgroundFamily caregivers of children living with HIV/AIDS in most cases are found to be overwhelmed and under-resourced, yet they are believed to be the primary source of support for children...

Can Stem Cell Therapy be an Effective Therapeutic Option for Complex and Neurological Conditions?

This article explores the feasibility and potential benefits of stem cell therapy as a promising therapeutic intervention for individuals facing severe behavioral and cognitive impairments, targeting underlying neurological mechanisms to offer potential symptom improvement and function restoration, thereby enhancing the quality of life for patients and potentially alleviating stress and burnout among caregivers. The aims of the study include investigating the efficacy of stem cell therapy in addressing these impairments and evaluating its potential to alleviate caregiver burden. Through a comprehensive review of existing literature, clinical trials, and studies, this research synthesizes the mechanisms of stem cell therapy, potential applications, clinical trial outcomes, caregiver experiences, and economic implications. The methods employed involve analyzing diverse data sources to provide a holistic understanding of the possibilities and challenges associated with stem cell therapy. Key outcomes of the study include highlighting promising results from clinical trials targeting conditions such as autism spectrum disorder, Parkinson's disease, and Crohn's disease, which underscore the transformative potential of stem cell therapy in patient care. Additionally, economic implications suggest potential reductions in healthcare costs and alleviation of financial strain on individuals, families, and healthcare providers. Stem cell therapy represents a paradigm shift in healthcare, promising to redefine treatment approaches and alleviate broader societal burdens associated with complex neurological conditions. The relevance of the study lies in emphasizing the need for continued research, ethical considerations, and multidisciplinary collaboration to ensure the safe and effective integration of stem cell therapy into clinical practice, ultimately offering new hope and improved care for patients, caregivers, and healthcare systems worldwide.

North Carolina Caregiver Listening Study: Caregiver Experiences and Perspectives on Services and Supports in an Aging U.S. State

ABSTRACT Family caregivers experience health, financial, and social burdens related to caregiving responsibilities. North Carolina has an estimated 1.3 million caregivers, equating to a value of $13.1 billion per year. Caregiving demands warrant additional understanding of the caregiver lived experiences. Our objective was to document these North Carolina caregiver experiences during the era of COVID-19 through focus groups. Participants were recruited through diverse community organizations. All 44 caregivers who completed interest solicitation surveys were invited to participate; 29 caregivers participated across 11 groups. Thematic analysis was used to code and synthesize transcripts from each participant using Dedoose software and guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Themes included: caregiver routines (caregiving as an all-encompassing role; dimensions of support); most challenging parts (exhaustion and defeat; lacking support; evolving relationships); most rewarding parts (care recipient resilience; quality time; sense of purpose); social service and healthcare system interactions (positive interactions; negative interactions; inaccessible services); COVID-19 impacts on caregiving (opportunities; challenges); and caregiver suggestions for system improvements (increasing financial support; improved coordination; ideological shifts). Caregivers shared unmet needs, challenges, and opportunities for improvement. Examining these needs and experience-informed recommendations can help advance additional caregiving research, policy-making, and program development.

Lived experiences of caregivers with infants treated at home with continuous invasive or noninvasive ventilation.

Caring for children dependent upon continuous invasive ventilation in the home setting requires extensive expertise, coordination, and can result in impaired caregiver quality of life. Less is known regarding the experiences of caregivers with children requiring continuous noninvasive ventilation. To evaluate caregiver experiences with invasive and noninvasive home mechanical ventilation, and to compare parental quality of life based on the child's mode of ventilation. Caregivers of infants who were discharged home with continuous ventilatory support were recruited to complete semi-structured qualitative interviews. Interviews explored their decision-making process, the transition to home, and health related quality of life. Caregivers of 16 children were interviewed, of whom eight were treated with continuous invasive ventilation, and eight with continuous noninvasive ventilation. The decision to pursue home ventilation in both groups was greatly influenced by the desire to be discharged and reunite the family at home. Following the transition to home, caregivers from both groups described high rates of insomnia, emotional distress, work disruption and familial hardship. Despite this, parents were overwhelmingly pleased with the decision to proceed with home ventilation and perceived their children to be living enriched lives outside of the hospital. Factors associated with easing the transition to home were in-hospital training and the presence of a robust support system. Lives of families with children dependent on continuous mechanical ventilation are characterized by isolation, lifestyle disruption, adverse mental and physical health consequences, and impaired interpersonal relationships, irrespective of the mode of ventilation.

Experiences of Caregivers in Disclosing HIV Status to Children Infected with HIV in Mopani District, South Africa

Background Caregivers are confronted with difficulties in determining the ideal period to initiate HIV disclosure to the child infected with HIV. Moreover, caregivers are uncertain about how to facilitate the HIV disclosure process, and opportunities to start the discussion are frequently missed until a later stage. Caregivers often fear that the child will be affected psychologically and have poor cognitive ability to comprehend the nature of the illness. Objective The objective of the study is to explore and describe the experiences of primary caregivers regarding HIV disclosure to children infected with HIV. Methods A qualitative, explorative, and descriptive study was conducted at 4 selected ART facilities in the Mopani district. Where face-to-face semi-structured interviews were conducted until data saturation with 16 primary caregivers. Data was analysed and coded using the ATLAS.ti 9 program, according to the thematic method of analysis. Results Analysis of data identified three main themes that described the experience of caregivers regarding HIV disclosure in children, which are cues to disclose HIV status to children, experiences of the event of HIV status disclosure to children, and caregiver’s experiences of healthcare providers’ role in HIV disclosure process. Conclusion Caregivers revealed that they initiated the HIV disclosure process to the children because of their personal and child-related factors. However, they perceived HIV disclosure as a difficult process to initiate, because of lack of skills, knowledge, and support from healthcare providers. Caregivers perceived children as too young to receive HIV disclosure information and they feared that the child would react negatively.

A fluctuating intensity of care: A qualitative study on the experiences of informal caregivers of patients with critical limb-threateningischemia.

Informal caregivers play a significant role in providing care for older, often vulnerable, patients, and supporting them as they live with chronic diseases. Due to the rising prevalence of older vascular patients and their use of healthcare, the role of their informal caregivers will become more important. However, little is known about the experiences of informal caregivers of patients with critical limb-threatening ischemia and the impact of informal care on different aspects of these caregivers' lives. In addition, literature does not describe the burden this role brings with it, or lack thereof. Therefore a qualitative study using a phenomenological approach, specifically interpretive phenomenological analysis, was used to gain insight into the experiences of the primary informal caregivers of patients with chronic limb-threatening ischemia. Data were collected via semi-structured interviews and focus groups discussions. Fifteen primary informal caregivers of patients with critical limb-threatening ischemia under the care of the vascular surgeon at a tertiary teaching hospital in the Netherlands were included. Data analysis yielded three themes: the perceived identity of this group of caregivers; the varying intensity of informal care; and the collaboration between informal carers, their care recipients and the professional care provider within the vascular surgery department. In contrast to carers of other chronic diseases, the shifting intensity of care that informal caregivers of critical limb-threatening ischemia patients experience seems to prevent long-term overload. Adapting to that fluctuating situation requires flexibility from healthcare providers within the vascular surgery department. In addition, professionals need to involve informal caregivers in the patient's decision-making process and recognize their role in that process.

Healthcare and social care professionals’ experiences of respite care: a critical incident study

ABSTRACT Introduction Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers’ delays in using it. The experiences of informal caregivers are well-studied, but the professionals’ experiences of respite care quality and critical incident management are underexplored. Aim To explore professionals’ experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents. Materials and methods A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted. Results Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals’ positive approach. Conclusions The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.

Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis - a qualitative study.

Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention. A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11. Twenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland. Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden. Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.

Experiences of the family caregivers of persons with schizophrenia in north Indian region: A qualitative inquiry

IntroductionFamily caregivers with schizophrenia struggle with psychological, social, and other challenges due to stigma, lack of adequate information, and maladaptive coping strategies. We aimed to explore the experiences of caregivers of persons with schizophrenia (PwS) to comprehend the emotional challenges and other burdens and coping strategies utilized. MethodsWe subscribed to a phenomenological approach and interviewed nine caregivers in-depth. Audio-recorded interviews were transcribed and translated from Hindi to English. Thematic analysis was performed using the seven-step Colaizzi's method. ATLAS.ti.22 was used for the analysis of the data. ResultsFive themes emerged from the data: 1) general understanding of schizophrenia, 2) emotional burden, 3) Disruption in personal and socio-occupational life, 4) challenges in caregiving, and 5) coping strategies. Caregiving adversely affected the quality of life socially and financially. Schizophrenia stigmatized families, trapped them in their homes, and left them no choice but to get support from informal networks. Also, caregivers experienced a lack of healthcare facilities in the vicinity and reported a substandard level of formal care. ConclusionGiving care to PwS entails financial, social, emotional, and physical burden. Feelings of frustration, helplessness, uncertainty, and loss are common. Transformation of personal, professional, and social life are usual consequence of caregiving. Generally, caregivers cope through addictions or spiritual means. Significant perceived requirements include a lack of knowledge about the condition and how to manage it as well as inadequate support services. Emotional and financial support and community support services near home may ease the burden of caregiving for PwS.

“Walk me through the final day”: A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day

Background: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. Aim: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. Design: Qualitative, thematic analysis, research using semi-structured interviews. Setting/participants: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. Results: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. Conclusions: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

The Experiences of Family Caregivers After Losing a Patient with Advanced Cancer: A Qualitative Study

Background: In patients with advanced cancer, family caregivers are crucial in providing care throughout the illness, particularly towards the end of life. These caregivers often face unique challenges and emotions that may differ significantly from those experienced by other family members following the patient’s death. Objectives: The purpose of this study was to explore the experiences of family caregivers following the loss of a patient with advanced cancer. Methods: A qualitative study was conducted in Iran from June 2023 to January 2024 to explore the experiences of family caregivers after the death of a patient with advanced cancer. Using purposive sampling, face-to-face, in-depth semi-structured interviews were carried out with 14 Iranian family caregivers of cancer patients. The interviews were subjected to conventional content analysis for thematic extraction. To ensure the trustworthiness and rigor of the study, Lincoln and Guba's criteria were applied. Results: Data analysis and abstraction resulted in the formation of three main categories with eight sub-categories. The categories extracted from the caregivers' experiences were: Caregiver's inconsolable mourning, Unforgettable experience of caring for loved ones, and Constant mind involvements. Conclusions: The different experiences of family caregivers after the death of a patient and the more intense emotions they experience indicate that caregivers require additional attention and support following the loss. Consequently, health systems should identify these individuals during the patient care process and provide targeted support after the patient's death.

A narrative review of community-based dementia care in India: experiences, challenges, and policy initiatives.

India is facing a significant increase in the aging population who are at risk for dementia. This review evaluates recent literature on community-based care, focusing on caregiver experiences, challenges and policy initiatives. Dementia care in India is traditionally provided by family members who take on the role of caregivers. Studies on caregiver experiences have reflected high caregiving burden and related impact on their mental health. During the pandemic, caregivers experienced several unprecedented challenges in providing care, emphasizing the need for more research on community-based dementia care across the country. Telehealth and online caregiver training were identified as viable alternatives to support community dementia care. However, it may not be a feasible mode of delivery suitable across the Indian context, underscoring the need for culturally relevant and acceptable interventions. India is currently undertaking concerted policy efforts for dementia care through multiple initiatives like the National Program for Healthcare of the Elderly, the Mental Healthcare Act, and initiatives like the Atal Vayo Abhyuday Yojna. These initiatives aim to address the healthcare requirements of the elderly; nevertheless, a comprehensive evaluation of their impact is yet to be discerned. There is a need for comprehensive research, to inform evidence-based policy and improve dementia care systems in India. Addressing gaps in existing dementia care capacities and healthcare initiatives, along with tailoring interventions to India's diverse contexts are critical for effective community care for dementia.

Family Caregivers' Experiences during the COVID-19 Pandemic: Qualitative Study.

Background: The COVID-19 pandemic imposed lockdown measures that affected caregiving. Understanding caregivers' context provides reveals their adaptive strategies to continue caring in this situation of uncertainty and isolation. Objective: To better understand the caregiving experiences of caregivers looking after dependent individuals living in the community during the pandemic. Design: Qualitative research, phenomenological approach. Setting: Primary healthcare centers in Madrid region (Spain). Participants: 21 family caregivers. Methods: Purposive and theoretical sampling was used to recruit caregivers across nurses from primary healthcare centers. Participants were interviewed using a semi-structured interview guide to explore the caring experience. Interview transcripts were evaluated using thematic analysis. Results: The findings were categorized into two themes: "Caregivers during lockdown-providing care in a time of adversity" and "Caregiving toward normality". The sub-themes identified were the re-structuring of before-care services and the introduction of new care approaches, managing the dependent person's health problems, looking after oneself, and dealing with adversity. To adapt to the new normal, strategies were put in place designed to recover confidence and trust, reincorporate assistance, and reconnect with others. Conclusions: Care intensified during the pandemic. Caregivers took on the task without assistance, focusing on preventing contagion and protecting themselves to be able to continue giving care.

The burden of atopic dermatitis in Australia: Medical care, treatment satisfaction, financial impact, long-term control and quality of life.

Atopic dermatitis patients and caregivers experience a high physical, mental and financial burden in Australia. We outline how the current care model impacts disease management and patients' quality of life via a survey of 265 Australian patients and caregivers to capture the experience of managing atopic dermatitis (AD) in Australia. Patients report an unsatisfactory quality of life and a high burden of disease with poor long-term control and low treatment satisfaction. They also reported changing spending and saving patterns to fund medical care. Patient experience improves with more specialised care that incorporates shared decision-making and patient/caregiver training beyond the clinic visit. These results highlight the need for improved general practitioner (GP) education, expedited access to medical specialists, greater patient involvement in treatment choices and more financial assistance to improve the experience of Australian patients and caregivers.

Pediatric Cancer Communication on Twitter: Natural Language Processing and Qualitative Content Analysis.

During the COVID-19 pandemic, Twitter (recently rebranded as "X") was the most widely used social media platform with over 2 million cancer-related tweets. The increasing use of social media among patients and family members, providers, and organizations has allowed for novel methods of studying cancer communication. This study aimed to examine pediatric cancer-related tweets to capture the experiences of patients and survivors of cancer, their caregivers, medical providers, and other stakeholders. We assessed the public sentiment and content of tweets related to pediatric cancer over a time period representative of the COVID-19 pandemic. All English-language tweets related to pediatric cancer posted from December 11, 2019, to May 7, 2022, globally, were obtained using the Twitter application programming interface. Sentiment analyses were computed based on Bing, AFINN, and NRC lexicons. We conducted a supplemental nonlexicon-based sentiment analysis with ChatGPT (version 3.0) to validate our findings with a random subset of 150 tweets. We conducted a qualitative content analysis to manually code the content of a random subset of 800 tweets. A total of 161,135 unique tweets related to pediatric cancer were identified. Sentiment analyses showed that there were more positive words than negative words. Via the Bing lexicon, the most common positive words were support, love, amazing, heaven, and happy, and the most common negative words were grief, risk, hard, abuse, and miss. Via the NRC lexicon, most tweets were categorized under sentiment types of positive, trust, and joy. Overall positive sentiment was consistent across lexicons and confirmed with supplemental ChatGPT (version 3.0) analysis. Percent agreement between raters for qualitative coding was 91%, and the top 10 codes were awareness, personal experiences, research, caregiver experiences, patient experiences, policy and the law, treatment, end of life, pharmaceuticals and drugs, and survivorship. Qualitative content analysis showed that Twitter users commonly used the social media platform to promote public awareness of pediatric cancer and to share personal experiences with pediatric cancer from the perspective of patients or survivors and their caregivers. Twitter was frequently used for health knowledge dissemination of research findings and federal policies that support treatment and affordable medical care. Twitter may serve as an effective means for researchers to examine pediatric cancer communication and public sentiment around the globe. Despite the public mental health crisis during the COVID-19 pandemic, overall sentiments of pediatric cancer-related tweets were positive. Content of pediatric cancer tweets focused on health and treatment information, social support, and raising awareness of pediatric cancer.

Caregiver Experiences of Racialization While Accessing Early Intervention (EI) Services for their Children

Early intervention (EI) services—including but not limited to speech, physical, occupational, and mental health therapies—have been proven to significantly benefit young children’s development, shaping their readiness for school and offering pivotal support for caregivers. However, racial disparities persist in identification for and access to EI services. Little is known about the ways in which racism affects how caregivers experience and navigate the screening and EI referral process. Through in-depth qualitative interviews, we explored the experiences of nine minoritized caregivers with experience seeking EI services in the San Francisco Bay Area. Using Critical Race Theory, we investigated how caregivers are racialized in the process. Our findings elucidate mechanisms of racialization, including but not limited to provider bias, managing stereotype threat, and dismissal of caregiver concerns. We also highlight ways in which such racialization contributes to disparities in who receives EI services. Understanding how this process racializes its users will elucidate pathways of change toward a more equitable system, in which minoritized children receive screening and early intervention services in a timely and appropriate manner.

Pōuritanga: Whānau Māori experiences of end-of-life caregiving, death and tangihanga (funeral customs) during New Zealand’s COVID-19 lockdowns

ABSTRACT During the COVID-19 outbreak a four-level alert system placed social restrictions on New Zealanders to minimise the spread of the virus. Hospices provided community-based care reduced to telecommunications in some regions. Marae (ancestorial gathering places) were closed, and families had to stay in their ‘bubbles.’ This article presents the findings of the Rapua te Mārama study to highlight bereaved Māori families end of life caregiving, death and tangihanga (funeral) experiences during COVID-19 Lockdowns. We highlight how the disruptions impacted Māori death customs and how whānau adapted. Lockdowns impacted the relational processes that underpinned whānau caregiving. Due to the pandemic restrictions there was a lack of palliative care provision within the home. Tangihanga (funeral customs) and Māori death customs were affected; despite this whānau honoured the rangatiratanga (self-determination) of their ill and dying.

How adult children experience and cope with their parents’ diagnosis of multiple myeloma: A qualitative exploration

PurposeThe aim of this study was to understand and explore the caregiving experience of adult children of patients with multiple myeloma (MM) during diagnosis and initial treatment based in Chinese filial piety culture. MethodsA descriptive phenomenology study was conducted to investigate semi-structured interview responses from the adult children (N = 22) of MM patients within three months after diagnosis. Colaizzi's descriptive analysis framework was employed to analyze data. This study was reported following the COREQ checklist. ResultsFour themes and twelve subthemes were identified from the interviews. (1) Commitment to filial piety. Participants subconsciously fulfilled their commitment to filial piety by supporting their parents, obeying their wishes, providing emotional comfort, and protecting them from harm. (2) Experiencing multiple dilemmas. They faced challenges such as difficult treatment decisions, insufficient caregiving preparation, emotional distress, and role conflict. (3) Benefiting from setbacks. The caregiving experience allowed participants to cherish the present more and to establish a new view of life. (4) Adaptive coping. Family supports and self-adaptation are effective coping strategies to achieve their good psychosocial adaptation. ConclusionsOur study provides a culturally sensitive perspective on the caregiving experience of adult children of patients with MM. This study found that Chinese culture, especially filial piety culture, influenced the experiences and coping strategies of MM caregivers. Healthcare providers should focus on the challenges faced by adult children and develop various strategies to help them cushion the burden and adjust to caregiving roles, such as supportive care programs, meaning-centered psychotherapy, and family-centered medical communication interventions.

Utility of next generation sequencing in paediatric neurological disorders: experience from South Africa

Next generation sequencing (NGS)-based tests have become routine first-line investigative modalities in paediatric neurology clinics in many high-income countries (HICs). Studies from these countries show that these tests are both cost-effective and reliable in diagnosing many complex childhood neurological diseases. However, NGS-based testing in low-and middle-income countries (LMICs) is limited due to affordability constraints. The primary objective of this study was to evaluate the diagnostic yield and impact of targeted gene panel sequencing in a selected paediatric cohort attending a tertiary paediatric neurology clinic in the Western Cape Province of South Africa. This retrospective study included 124 consecutive paediatric patients with neurological disease, aged 6 weeks to 17 years, referred for NGS-based multi-gene panel testing over a 41-month period. Twenty-four different disease group-specific panels were utilized. A caregiver experience questionnaire was administered when a pathogenic variant was identified. The overall study diagnostic yield (DY) was 45% (56/124 patients). The diagnostic yield in this study is similar to previously reported paediatric cohorts in HICs. The high yields for neuromuscular disorders (52%) and early epileptic encephalopathies (41%) suggest that NGS-based panels may be more cost-effective as first-line testing in well-defined phenotypes. The latter finding argues for early inclusion of all children with developmental epileptic encephalopathies (DEE), as early diagnosis leads to better treatment and avoidance of unnecessary investigations.