A qualitative analysis of patient and caregiver experiences with myelomeningocele through online discussion boards.

PURPOSE: Patients and caregivers impacted by myelomeningocele (MMC) use online discussion board forums to create community and share information and concerns about this complex medical condition. We aim to identify the primary concerns expressed on these forums with the goal of understanding gaps in care that may merit investment of resources to improve care received by this population. METHODS: Anonymous posts from online MMC discussion boards were compiled using internet search engines. Posts were then analyzed using an adaptation of the Grounded Theory Method, a three-step system involving open, axial, and selective coding of the data by two independent researchers to identify common themes. RESULTS: Analysis of 400 posts written primarily by parents (n = 342, 85.5%) and patients (n = 45, 11.25%) yielded three overarching themes: questions surrounding quality of life, a lack of support for mothers of children with MMC, and confusion with a complex healthcare system. Many posts revealed concerns about management and well-being with MMC, including posts discussing symptoms and related conditions (n = 299, 75.75%), treatments (n = 259, 65.75%), and emotional aspects of MMC (n = 146, 36.5%). Additionally, families, especially mothers, felt a lack of support in their roles as caregivers. Finally, in 118 posts (29.5%), patients and families expressed frustration with navigating a complex healthcare system and finding specialists whose opinions they trusted. CONCLUSIONS: MMC is a complex medical condition that impacts patients and families in unique ways. Analysis of online discussion board posts identified key themes to be addressed in order to improve the healthcare experiences of those impacted by MMC.

Feeding after congenital heart surgery: a mixed-methods study of the caregiver experience.

OBJECTIVES: Feeding difficulties after congenital heart surgery are a common concern for caregivers of children with CHD. Insight into the intricacies of their experience is lacking. With a better understanding, healthcare providers can continue to optimize the approach and support mechanisms for these families. This study will explore the psychosocial impacts on caregivers, define barriers to care, and identify areas to improve their care. STUDY DESIGN: This mixed-methods study combined semi-structured interviews with surveys. Purposive sampling targeted caregivers of a child who underwent heart surgery and was discharged with alternative enteral feeding access. A hybrid inductive-deductive methodology was used to analyse interview transcripts. Survey scores were compared to interview content for concordance. RESULTS: Fifteen interviews were conducted with socio-demographically diverse caregivers. Feeding difficulties were often identified as their greatest challenge, with the laborious feeding schedule, sleep deprivation, and tube management being common contributors. Most caregivers described feeling overwhelmed and worried. Time-intensive feeding schedules and lack of appropriate childcare options precluded caregivers' ability to work. Barriers to care included imperfect feeding education, proximity of specialist clinics, and issues with medical supply companies. Caregiver proposals for improved care addressed easing the transition home, improving emotional support mechanisms, and intensifying feeding therapy for expedited tube removal. CONCLUSION: This study describes the psychosocial toll on the caregiver, typical barriers to care, and ideas for improved provision of care. These themes and ideas can be used to advance the family-centered approach to feeding difficulties after heart surgery.

How do enrollees feel about support in Big Hospices? - The caregiver experience of emotional, spiritual, and bereavement support by profit status among large US providers.

OBJECTIVES: Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver's experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit. METHODS: Retrospective mixed methods of sentiment and quantitative analysis. Sources were online caregiver reviews (n = 4,279), Consumer Assessment of Healthcare Providers and Systems (CAHPS) data on the 50 largest US hospices. RESULTS: Caring and compassionate professionals were lauded in nonprofit (+.57) and for-profit settings (+.46). The nonprofit experience was in the excellent range (+42) for emotional, spiritual, and bereavement support but fell to dissatisfying (-.15) among for-profits. A respectful experience (16%) was much less commonly expressed than a compassionate one (38%). Distribution of CAHPS "Treating patient with respect" (M = 89.62, SD = 2.63) and "Emotional and spiritual support" (M = 89.80, SD = 2.04) limited inter-hospice comparisons. SIGNIFICANCE OF RESULTS: Compassionate professionals were thanked and praised regardless of profit status. Sadly, anger was expressed toward large, for-profits more fixated on census than emotional, spiritual, and bereavement support; thankfully nonprofits were more supportive. CAHPS items for "Treating patient with respect" and "Emotional, spiritual support" offer limited discriminating value since low CAHPS performers always had relatively high scores on these 2, yet otherwise low scores on the remaining 6. Online reviews on the same topics provide a more substantive and realistic appraisal - distinguishing high from low performers. A higher bar than mere respect is needed for the tender experience of death, dying, and grieving. Compassion is an especially relevant addition to CAHPS since caregivers named compassionate staff as a distinguishing factor. Parity for mental health at end of life is a vital research topic. Future research should also explore the caregiver expectations set on admission.

Solving the Autism Puzzle: Creating a Broad-Spectrum Tool to Improve Care Delivery in the Clinical Setting.

PURPOSE: The purpose of this quality improvement (QI) project was to develop and implement an assessment tool to identify a patient's specific needs due to autism spectrum disorder (ASD). The use of an individualized plan of care related to sensory and behavioral differences correlates with improved experiences in the perioperative setting for patients with ASD. DESIGN: Mixed methods, pre-post survey, retrospective data comparison. METHODS: Metrics planned to evaluate intervention outcomes included: (1) Comparison of pre and postsurvey data obtained from perioperative staff members following ASD education, (2) Evaluation of the number of behavior response team calls made compared to retrospective data, and (3) Survey response data from families assessing the perceived experience of perioperative stay. FINDINGS: Two hundred and fifty staff members responded to the learning needs survey; 164 in the preperiod and 86 in the postperiod. The perioperative process for these patients improved from the pre- to the postperiod in its ability to meet the needs of patients with autism (P < .001). Overall, respondents rated the sensory aids and the behavioral and sensory assessment tool as very useful (Median = 5, IQR = 2) and stated that they are likely to continue to use the tools in the future when caring for patients with autism (Median = 5, IQR = 1). CONCLUSIONS: The caregivers of study patients felt they had a high level of satisfaction with their surgery or procedure experience. Health care providers also reported increased confidence working with individuals with ASD in the perioperative environment and satisfaction with the intervention program.

[The cultural diversity of professionals in migrant care]. / La diversité culturelle des professionnels au profit des soins aux personnes migrantes.

A qualitative study was carried out with five professionals in a pediatric intensive care unit in 2022. Semi-structured interviews were used to find out how they felt about patients from their own culture, and about the role of their mother tongue in hospital care. Caregivers find it difficult to bring their own culture to the fore when caring for their patients. A description of the obstacles they encounter, as well as the advantages, is included.

Multiple System Atrophy Caregivers' Experience: A Mixed Methods Study.

BACKGROUND: Multiple system atrophy (MSA) is a rare Parkinson-plus syndrome with rapid progression and a high symptom burden. The experience of caregivers of people with MSA has not been closely examined. We therefore sought to document the impact of MSA on caregivers using a mixed methods approach. METHODS: Patients and caregivers were recruited from a movement disorders program in Edmonton, Canada. Participants completed the following survey instruments based on their own or their loved one's symptoms: 36-Item Short-Form Health Survey (SF-36), Multiple System Atrophy health-related Quality of Life scale (MSA-QoL), and Hospital Anxiety and Depression Scale (HADS). Caregivers also completed the Zarit Burden Interview and HADS based on their own experience. Qualitative data were obtained through semi-structured interviews. RESULTS: Nine people with MSA (PwMSA) (age range: 48-78 years) and 11 caregivers (49-76 years) participated. All completed surveys; 7 PwMSA and 10 caregivers were interviewed. Eight PwMSA had the parkinsonian type of MSA (MSA-P) and one a mixed type. Caregivers had on average mild-moderate caregiver burden and mild anxiety. Caregiver burden and anxiety were correlated. Qualitative subthemes under the caregiving theme included keeping the patient safe, caregivers' own health, and communication symptoms cause frustration. The rapid progression of illness was bewildering to caregivers and increased their workload. Public home care services were invaluable to caregivers' maintaining their loved ones at home. Caregivers were inventive in finding sources of hope and quality of life for their loved ones. CONCLUSION: Publicly funded home care was essential for caregivers of PwMSA in this study. Caregiver support is needed to provide this unrecognized workforce with information and resources to face this challenging condition.

The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping.

BACKGROUND: Care transitions have a significant impact on patient health outcomes and care experience. However, there is limited research on how clients receiving care in the home care sector experience the hospital-to-home transition. An essential strategy for improving client care and experience is through client engagement efforts. The study's aim was to provide insight into the care transition experiences and perspectives of home care clients and caregivers of those receiving home care who experienced a hospital admission and returned to home care services by thematically and illustratively mapping their collective journey. METHODS: This study applied a qualitative descriptive exploratory design using a patient journey mapping approach. Home care clients and their caregivers with a recent experience of a hospital discharge back to the community were recruited. A conventional inductive approach to analysis enabled the identification of categories and a collective patient journey map. Follow-up interviews supported the validation of the map. RESULTS: Seven participants (five clients and two caregivers) participated in 11 interviews. Participants contributed to the production of a collective journey map and the following four categories and themes: (1) Touchpoints as interactions with the health system; Life is changing; (2) Pain points as barriers in the health system: Sensing nobody is listening and Trying to find a good fit; (3) Facilitators to positive care transitions: Developing relationships and gaining some continuity and Trying to advocate, and (4) Emotional impact: Having only so much emotional capacity. CONCLUSIONS: The patient journey map enabled a collective illustration of the care transition depicted in touchpoints, pain points, enablers, and feelings experienced by home care recipients and their caregivers. Patient journey mapping offers an opportunity to acknowledge home care clients and their caregivers as critical to quality care delivery across the continuum.

[Caregivers' experiences with extreme prematurity]. / Vécu des soignants face à l'extrême prématurité.

Neonatal intensive care units receive very immature premature newborns. Mortality and morbidity rates remain high in this particularly fragile population. Caregivers involved with the child and his or her parents may experience moral distress. There are few studies on the experience of caregivers in these situations. Training, service architecture and sharing of experiences with specifically trained psychologists can improve this experience in these highly technical services.

Assessing the experience of the quality of care of patients living with multiple sclerosis and their caregivers: The MusiCare questionnaire.

BACKGROUND AND PURPOSE: Patients with a chronic illness, such as multiple sclerosis (MS), and their natural caregivers have a specific experience of healthcare and health services. These experiences need to be assessed to evaluate the quality of care. Our objective was to develop a French-language questionnaire to evaluate the quality of care as experienced by MS patients and their natural caregivers. METHODS: Eligible patients had been diagnosed with MS according to the McDonald criteria. Eligible caregivers were individuals designated by the patients. The MusiCare questionnaire was developed in two standard phases: (i) item generation, based on interviews with patients and caregivers; and (ii) validation, consisting of validity, reliability, external validity, reproducibility, and responsiveness measures. RESULTS: In total, 1088 patients (n = 660) and caregivers (n = 488) were recruited. The initial 64-item version of MusiCare was administered to a random subsample (n = 748). The validation process generated a 35-item questionnaire. Internal consistency and scalability were satisfactory. Testing of the external validity revealed expected associations between MusiCare scores and sociodemographic and clinical data. The questionnaire showed good reproducibility and responsiveness. CONCLUSIONS: The availability of a reliable and validated French-language self-report questionnaire probing the experience of the quality of care for MS will allow the feedback of patients and caregivers to be incorporated into a continuous healthcare quality-improvement strategy.

Living with Dysphagia in the Community: Caregivers "do whatever it takes."

The psychological and psychosocial impacts of dysphagia on patients are well documented, however, caregiver perspectives have received limited attention and findings have been predominantly in the head and neck cancer population. The aim of this study was to understand the experience of supporting a person with dysphagia of varying aetiologies in the community from the caregiver perspective. Using a qualitative descriptive approach grounded in phenomenology, caregivers of a person with dysphagia living at home were interviewed (n = 15). Thematic analysis revealed an overarching theme of "You do whatever it takes," describing the caregiver experience of supporting a family member/friend with dysphagia at home. This theme was underpinned by three subthemes where caregivers described (1) being a caregiver; (2) support networks; and (3) practicalities of living with dysphagia. Caregivers voiced a range of pertinent issues experienced when caring for a family member/friend with dysphagia including how personal attributes and life experience impact the caregiver role. Demonstrated through the practical and emotional supports caregivers provided, it was apparent they are instrumental in supporting a family member/friend with dysphagia to live at home and in the community successfully. Through understanding the caregiver experience, health professionals will be in a better position to involve and support caregivers who play a vital role in those living with dysphagia in the community. Incorporating caregivers as direct recipients of dysphagia services will ensure the practical and psychosocial needs of caregivers are addressed, enabling optimal care for people with dysphagia living at home.

Patients' and caregivers' experiences of using continuous glucose monitoring to support diabetes self-management: qualitative study.

BACKGROUND: Continuous glucose monitoring (CGM) enables users to view real-time interstitial glucose readings and provides information on the direction and rate of change of blood glucose levels. Users can also access historical data to inform treatment decisions. While the clinical and psychological benefits of CGM are well established, little is known about how individuals use CGM to inform diabetes self-management. We explored participants' experiences of using CGM in order to provide recommendations for supporting individuals to make optimal use of this technology. METHODS: In-depth interviews (n = 24) with adults, adolescents and parents who had used CGM for ≥4 weeks; data were analysed thematically. RESULTS: Participants found CGM an empowering tool because they could access blood glucose data effortlessly, and trend arrows enabled them to see whether blood glucose was rising or dropping and at what speed. This predicative information aided short-term lifestyle planning and enabled individuals to take action to prevent hypoglycaemia and hyperglycaemia. Having easy access to blood glucose data on a continuous basis also allowed participants to develop a better understanding of how insulin, activity and food impacted on blood glucose. This understanding was described as motivating individuals to make dietary changes and break cycles of over-treating hypoglycaemia and hyperglycaemia. Participants also described how historical CGM data provided a more nuanced picture of blood glucose control than was possible with blood glucose self-monitoring and, hence, better information to inform changes to background insulin doses and mealtime ratios. However, while participants expressed confidence making immediate adjustments to insulin and lifestyle to address impending hypoglycaemia and hypoglycaemia, most described needing and expecting health professionals to interpret historical CGM data and determine changes to background insulin doses and mealtime ratios. While alarms could reinforce a sense of hypoglycaemic safety, some individuals expressed ambivalent views, especially those who perceived alarms as signalling personal failure to achieve optimal glycaemic control. CONCLUSIONS: CGM can be an empowering and motivational tool which enables participants to fine-tune and optimize their blood glucose control. However, individuals may benefit from psycho-social education, training and/or technological support to make optimal use of CGM data and use alarms appropriately.

Family caregivers' experience of activities of daily living handling in older adult with stroke: a qualitative research in the Iranian context.

BACKGROUND: Patients with stroke require additional support from family to live independently in the area of activities of daily living. Family members are usually the main caregivers of stroke patients. Comprehensive explanation of ADL handling from family caregivers' view is lacking. AIM: This study explores and describes family caregivers' experiences about the strategies to handle activities of daily living (ADL) dependency of elderly patient with stroke in the Iranian context. METHOD: A qualitative content analysis approach was conducted to analyse data. Nineteen family caregivers participated in the study from multiple physiotherapy clinics of physiotherapy in Sari (Iran) between September 2013 and May 2014. Data were generated through in-depth interviews, and content analysis method was used to analyse the data and determine themes. FINDINGS: The findings show that family caregivers manage the ADL dependency of their elderly stroke patients through seven strategies including encouraging physical movements, providing personal hygiene, nutritional consideration, facilitating religious activities, filling leisure time, and facilitating transfer and assisting in financial issues. CONCLUSION: Family has an important role in handling of elderly stroke patients' ADL dependency. Health practitioners can take benefit from the findings to help the stroke families play more active role in the handling ADL dependency of their patients after stroke.

Autism Spectrum Disorder in Down Syndrome: Experiences from Caregivers.

This study aimed to learn about the experiences of families of individuals with a dual diagnosis of Down syndrome (DS) and autism spectrum disorder (ASD) (DS-ASD), and to document the journey from early concerns to diagnosis and intervention. Caregivers completed an online survey describing their journey raising a child with DS-ASD. Survey responses were analyzed qualitatively and coded into categories to highlight common themes. Stereotypy, severe communication impairments, and behavioral difficulties prompted caregivers to pursue further evaluation. There was a mean 4.65-year gap between first noticing symptoms and receiving an ASD diagnosis. Several therapeutic interventions were identified as beneficial, including behavioral and communication support. Caregivers expressed frustration and described high levels of stress and social isolation. The diagnosis of ASD in children with DS is often delayed, and caregivers' initial concerns are frequently dismissed. Raising a child with DS-ASD can lead to social isolation and elevated caregiver stress. More research is needed to tailor diagnostic algorithms and therapeutic interventions to the unique needs of this patient population. Caregivers yearn for improved understanding of DS-ASD, more targeted therapies and educational programs, and more overall support.

Experiences of Parents and Caregivers of Children Who Underwent Gastrostomy Tube Insertion.

Gastrostomy feeding is a route of enteral nutrition for children with feeding difficulties. This study investigated caregiver experiences of the transition to gastrostomy feeding. A survey was administered to caregivers of children <18 years in a major pediatric center in Ireland. Experiences of decision-making, support, and adjusting to tube feeding were examined. Seventy-six caregivers participated. Median satisfaction with the information provided by the hospital was high. Almost half (48%) spoke to another caregiver of a child with a gastrostomy prior to their own child's gastrostomy insertion and most (88%) felt reassured by this. Concerns following insertion included managing the tube and their child's oral intake and feelings about the tube. The oral intake of 83% of children who had some intake prior to gastrostomy insertion did not change or increased following insertion. Most (89%) would make the same decision to insert the tube. Feelings associated with the transition included relief and stress. Gastrostomy tube insertion presents logistical and psychosocial challenges for caregivers. Peer support from other caregivers may alleviate some of these challenges.

Support needs of people with Multiple System Atrophy.

BACKGROUND: Multiple system atrophy (MSA) is a neurodegenerative disease with presentations including parkinsonism, autonomic disturbances, gait impairment and mood disorders. The progressive nature of MSA results in a significant deterioration in quality of life for patients. OBJECTIVES: To investigate the needs of people with MSA (PwMSA) in the United Kingdom (UK) and the support provided to them. METHODS: A survey of members of the UK's MSA Trust including PwMSA and former carers explored questions on the physical, emotional, personal and financial impact of MSA and on support received. RESULTS: There were 284 valid responses from PwMSA and 371 responses from former carers. Difficulties with movement were universally experienced by PwMSA. The majority of former carers reported these as difficult or very difficult to manage (90 %), followed by autonomic problems (85 %) and breathing, speech or swallowing problems (81 %). PwMSA also reported fatigue (96 %), mood disorders (80 %) and social isolation (82 %). 41 % of former carers felt that the emotional needs of PwMSA had not been met. Many also reported inadequately covered financial needs (48 %). Equipment used most commonly included mobility equipment (90 %). The majority received support from neurologists (95 %) and GPs (92 %), but few from palliative care or mental health professionals. Satisfaction was highest for support from palliative services (95 %) and specialist nurses (91 %). CONCLUSION: This survey demonstrates the high burden of MSA across various aspects of life for PwMSA. It suggests that whilst there is good provision of neurology services and physical equipment, there is a need to improve support for their emotional and social needs.

Understanding dentatorubral-pallidoluysian atrophy (DRPLA) symptoms and impacts on daily life: a qualitative interview study with patients and caregivers.

Background: Dentatorubral-pallidoluysian atrophy (DRPLA) is a rare, neurodegenerative disorder with no disease-modifying treatments. There is a dearth of information in the literature about the patient and caregiver experience living with DRPLA. Objectives: This study aimed to (1) understand symptoms experienced by adult- and juvenile-onset DRPLA populations and their impact on daily life and (2) explore patient and caregiver treatment goals and clinical trial participation preferences. Design: The study was a qualitative interview study. Methods: Interviews were conducted remotely with adult patients with DRPLA and caregivers. Participants described patient symptoms and the impact of those symptoms on daily life, and they discussed treatment goals and potential clinical trial participation. There were 18 patients described in the interviews with two patients and seven caregivers. Some participants were caregivers to multiple patients with DRPLA. Results: Interview transcripts were coded for themes, and reported symptoms were summarized with descriptive statistics. Adult-onset patients (N = 7) experienced difficulty with ataxia (100%), cognition (100%), fine motor skills (100%), gross motor skills (100%), speech (100%), personality changes (100%), and seizures (57%). Juvenile-onset patients (N = 11) experienced difficulty with ataxia (100%), sleep (100%), speech (100%), jerking/twitching (83%), behavior (82%), cognition (82%), fine motor skills (82%), gross motor skills (82%), sensory sensitivity (75%), and seizures (64%). When considering aspects of DRPLA to target for future treatment, patients prioritized ataxia/mobility (100%), juvenile-onset caregivers prioritized ataxia/mobility (60%) and independence (60%), and adult-onset caregivers prioritized personality (60%). Almost all patients (93%) would participate in a clinical trial if given the opportunity, but travel to a clinical site could pose a participation barrier for half. Conclusion: This study found that there are symptom domains that are relevant across the DRPLA population, but there is heterogeneity within each domain based on the age of symptom onset and disease stage, which has implications for clinical trial design.

Understanding dentatorubral-pallidoluysian atrophy (DRPLA) symptoms and impacts on daily life through interviews with patients and caregivers Why was the study done? Dentatorubral-pallidoluysian atrophy (DRPLA) is a rare and progressive brain disorder. Little is known about the patient and caregiver experience living with DRPLA and this lack of information has hindered the development of patient-focused treatments and the measurement of outcomes that are most meaningful to caregivers and patients. What did the researchers do? To address this problem, researchers conducted interviews with patients and caregivers of DRPLA to (1) better understand symptoms experienced by adult- and juvenile-onset DRPLA populations and their impact on daily life and (2) explore patient and caregiver treatment goals and clinical trial participation preferences. What did the researchers find? Eighteen patients were described in the interviews. Adult-onset patients (onset at age 20 or older) experienced difficulty with coordination, cognition, motor skills, speech, personality changes, and seizures. Juvenile-onset patients (onset before age 20) experienced difficulty with coordination, sleep, speech, jerking/twitching, behavior, cognition, motor skills, sensory sensitivity, and seizures. When considering symptoms to prioritize for future treatment, patients and caregivers identified coordination/mobility, independence, and personality as important. Nearly all participants indicated they would participate in a clinical trial if given an opportunity, however half expressed that travel to a clinical site could pose a barrier. What do the findings mean? This study provides a better understanding of the symptoms experienced by DRPLA patients and their impact on daily life. Additionally, it identifies important targets for treatment and considerations when designing clinical trials for DRPLA such as the barrier caused by travel to a clinical site.

Qualitative Study of the Patient Experience with Venglustat for Gaucher Disease Type 3 in a Phase 2 Open-Label, Multicenter, Multinational Study (LEAP).

INTRODUCTION: Gaucher disease type 3 (GD3) is a genetic, progressive lysosomal storage disorder characterized by visceral manifestations and chronic neurologic symptoms (e.g., horizontal ophthalmoplegia/supranuclear gaze palsy, ataxia, dystonia). The investigational agent venglustat is being studied in combination with imiglucerase as potential treatment for systemic and neuronopathic manifestations of GD3 in a single-arm, open-label, phase 2 trial (LEAP; N = 11). To understand perceived changes in GD3 symptoms from the perspectives of patients, caregivers, and clinicians, we conducted a qualitative case study of selected LEAP participants. METHODS: Four patients in LEAP (age range, 20-28 years), four of their caregivers, and three clinicians involved in LEAP were interviewed individually by moderators using semi-structured guides. Clinicians' perceptions were based on observation of interviewed patients and those in LEAP who were not interviewed, as well as information provided by other staff involved in LEAP, patients, and caregivers. RESULTS: Reported changes in GD3 symptoms varied among patients and among reporters. Only eye movement was spontaneously mentioned as improved by at least one patient, caregiver, and clinical expert. Symptom improvement also varied in terms of time to improvement. Within the first weeks, improvements were seen in understanding new information or complex instructions, remembering the weekday, eye movement, tremor, and seizures. Changes in alertness, engagement and responsiveness, memory, and concentration appeared after months or a year. Most caregivers and all clinical experts reported greater patient independence (e.g., increased ability to perform activities of daily living or travel independently during the trial) as a perceived treatment effect on a GD3 impact. For one patient who perceived benefits from venglustat therapy, pharmacokinetic analyses during LEAP found low to undetectable venglustat levels in their plasma and cerebrospinal fluid. CONCLUSION: Outcomes from this study provide insights into GD3 symptoms and the early signaling of changes reported during venglustat therapy. TRIAL REGISTRATION: ClinicalTrials.gov identifier, NCT02843035.

Stigma, lost opportunities, and growth: Understanding experiences of caregivers of persons with mental illness in Tamil Nadu, India.

This study aimed to address gaps in understanding of the lived experiences of caregivers of persons with mental illness in low-income countries. It was conducted among caregivers of persons with mental illness making use of a free non-governmental clinic in and around Chennai, India. The study adopted a qualitative methodology, with semi-structured interviews and life history exercises (n = 29) and six focus group discussions with caregivers (n = 21) and mental health professionals and community-based workers (n = 39). The experiences of caregivers were analyzed in the framework of "The Banyan model of caregiving," which identifies six phases. Major themes in caregivers' experience were: embarrassment and losing honor; fear; awareness; stigma and social exclusion; and reduced social interaction and loneliness. Posttraumatic growth considered as the result of caregiver experiences was found to consist mainly of personal growth and focusing on positive life experiences. Lost opportunities particular to the context of Tamil Nadu were described as the inability to get married, obtaining less education than desired, and loss of employment. Siblings faced lower levels of burden, while elderly mothers experienced especially high levels of burden and lack of happiness in life. Caregiver gains were identified as greater compassion for other people with disabilities, resulting in a desire to help others, as well as increased personal strength and confidence. Understanding the nuances of the caregiving experiences over time can provide a framework to devise more fine-tuned support structures that aim to prevent reductions in social interaction and lost opportunities, and improve a sense of meaning, in order to assist caregivers to continue providing care for their relatives with mental illness in a context with scarce mental health resources.

Adult patient and carer experiences of planning for hospital discharge after a major trauma event: a qualitative systematic review.

PURPOSE: To identify, evaluate and synthesize qualitative literature on adult patients and carer experiences of planning for discharge from an acute setting after a major trauma event. METHODS: The JBI approach to meta-aggregation was followed. Qualitative studies exploring patient and carer discharge planning experiences of major trauma were included in the systematic review. A comprehensive search was conducted in five databases, supplemented by grey literature. Eligible studies were appraised for methodological quality by two reviewers and data extracted using standardized JBI tools. RESULTS: Four synthesized findings emerged using 69 findings from sixteen papers. (i) Patients and carers feel generally unprepared to manage at home after discharge, (ii) early identification of patients' post discharge needs allows for appropriate referrals and supports to be organised prior to discharge, (iii) patients and carers value participation in the discharge planning process to facilitate a considered, organized and timely discharge from hospital (iv) the timely presentation, delivery, language used, format and relevancy of information impacts how patients and carers manage their discharge. CONCLUSION: This meta-synthesis demonstrates that patients and carers predominantly have poor experiences of discharge planning after major trauma. Adoption of patient centered principles may improve patient and carer experiences of the discharge planning process.IMPLICATIONS FOR REHABILITATIONPatients and their carers benefit from a client-centred approach where their needs are recognised and their collaboration encouraged in important decisions, and if they are adequately prepared to reintegrate into their community.Patients can benefit from having a trauma pathway healthcare professional to provide support and advocacy services throughout their hospital admission and after discharge.Discharge planning that is organised, prepared and collaborative leads to a more positive patient experience.Discharge information should be individualised and presented in an easily accessible format for patients and carers.

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design.

Background. Patients and caregivers facing complex health decisions must make sense of unfamiliar, emotionally challenging information and experiences. For patients with hematological malignancy, bone marrow transplant (BMT) may be the best chance for a cure but has significant risk of morbidity and mortality. This study aimed to investigate and support patient and caregiver sensemaking as they consider BMT. Methods. Ten BMT patients and 5 caregivers engaged in remote participatory design (PD) workshops. Participants drew timelines of their memorable experiences leading up to BMT. Then, they used transparency paper to annotate their timelines and design improvements to this process. Results. Thematic analysis of drawings and transcripts revealed a 3-phase sensemaking process. In phase 1, participants were introduced to BMT and understood it as a possibility, not an inevitability. In phase 2, they focused on meeting prerequisites including remission and donor identification. Participants came to believe they needed transplant, consequently describing BMT not as a decision between viable options, but that transplant was their "only chance" for survival. In phase 3, participants attended an orientation detailing the extensive risks of transplant, leading to anxiety and doubt. Participants designed solutions that provided reassurance to those grappling with the life-altering impacts of transplant. Conclusions. For patients and caregivers navigating complex health decisions, sensemaking is a dynamic, ongoing process that affects expectations and emotional well-being. Interventions targeting reassurance alongside risk information can alleviate emotional impact and facilitate expectation development. The integration of PD and sensemaking methodologies enables participants to create holistic, tangible representations of experiences while empowering stakeholder engagement in intervention design. This method could be applied to other complex medical contexts to understand lived experiences and develop effective support interventions. Highlights: Bone marrow transplant patients and caregivers experienced an evolving, emotionally challenging process of gradually understanding the transplant procedure and its risks.The solutions that participants designed centered on providing reassurance alongside risk information, suggesting future interventions could target emotional support as patients attempt to meet prerequisites and grapple with the risks of the potentially curative procedure.By viewing the challenges of complex medical decisions in terms of sensemaking and applying visual methods such as participatory design, researchers can facilitate expression of the dynamic, multifaceted, emotional components of experience and empower stakeholder involvement in intervention design.