"A strong reason why I enjoy coming to work": Clinician acceptability of a palliative and supportive care intervention (PACT) for older adults with acute myeloid leukemia and their care partners.

INTRODUCTION: Studies about clinician acceptability of integrative palliative care interventions in the inpatient and outpatient cancer settings are limited. In this study, we examined clinician acceptability of a NIH-funded interdisciplinary PAlliative and Supportive Care inTervention (PACT) for older adults with acute myeloid leukemia (AML) and their care partners that transcends both inpatient and outpatient settings. MATERIALS AND METHODS: Data was collected using semi-structured interviews with clinicians who were directly involved in PACT. The domains of the Theoretical Framework of Acceptability were used to guide the qualitative analysis. RESULTS: The clinicians consisted of occupational therapists (37%), physical therapists (25%), registered nurses (25%), and a clinical rehabilitation manager (13%). Five themes were identified in the thematic analysis: (1) Emotions and affect towards the intervention, (2) Intervention coherence and self-efficacy, (3) Barriers, burden, and opportunity costs of delivering the intervention, (4) Usefulness and effectiveness of the intervention, and (5) Recommendations to improve intervention delivery. DISCUSSION: All clinicians found the PACT intervention highly acceptable and expressed the positive impact of the intervention on job fulfillment and satisfaction. Our findings provide evidence to inform the delivery and implementation of future large scale integrative palliative care intervention trials.

Forgone healthcare for medically vulnerable groups during the pandemic era: experiences of family caregivers of young adults with substance use disorders in Zambia.

Introduction: Scholars worldwide have defined the COVID-19 pandemic as a mass-disabling event of our time. The situation is grave for families experiencing financial hurdles while caring for young adults in recovery from addiction problems. Methods: Using semi-structured interviews with 30 purposively selected family caregivers (FCGs) of young adults with substance use disorders (SUDs) in Lusaka, Zambia, this study reveals several factors influencing forgone healthcare for this medically vulnerable group. Results: Financial challenges and huge out-of-pocket bills; caregivers' perceived far-fetched recovery of the young adult; the cost of medication and transportation; the young adult's little perceived need for healthcare service use, their runaway and treatment elusive tendencies; caregiver concerns about contracting the virus, and the stigma associated with it; and a fragmented child and adolescent mental health system influenced forgone healthcare. The young adults were often unavailable for days and months, posing challenges to the continuity of care. Despite caregivers' acknowledgment of the availability of healthcare professionals, young adults with problematic substance use had limited access to SUD recovery services, resulting in adverse health outcomes. Results also show that most family caregivers encountered challenges in accessing and purchasing psychotropic medications, which were difficult to find during the lockdowns. Some family caregivers lost their sources of income by being laid off from work due to the pandemic and skipping work to attend to caregiving responsibilities. Most of those in self-employment had to close their business and stay home to look after their youth. Several caregivers kept their youth at home because they failed to access private residential SUD recovery services. Family caregivers mostly relied on outpatient public health services, alternative medicine from traditional healers, and faith-based healing, all of which some young adults rarely accessed because of their problematic behaviors of escaping healthcare. Conclusion: These identifiable risk factors, and their detrimental consequences highlight the need for interventions to improve healthcare access for this vulnerable population. Supporting FCGs of addicted young adults is crucial in ensuring the well-being of both the caregivers and care recipients. Further research is warranted to explore potential solutions, such as peer support programs, policy changes, and education initiatives for carers and recipients in the (post) pandemic era.

Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

A Comparative Analysis of Spiritual Care Needs Among Cancer Patients Receiving Home Care and Their Caregivers in Turkey.

This study was conducted to determine and compare the spiritual care needs of cancer patients and their caregivers. A comparative descriptive, cross-sectional design was employed in this study. The study comprised 102 patients who were registered in the hospital's home care unit, as well as their caregivers (total number = 204). The data were collected using a personal information form and the Spiritual Care Needs Inventory. The cancer patients had a mean age of 69.5 years, while their caregivers' mean age was 53.1 years. According to the results, the cancer patients needed more spiritual care than their caregivers (p < 0.01). Patients' spiritual care needs differed significantly by employment status (p < 0.05). However, gender, educational level, and marital status did not have a significant difference in the spiritual care needs of the patients and their caregivers (p > 0.05). Moderately positive and significant (p < 0.05) correlations between patients and their caregivers were found for the total Spiritual Care Needs Inventory scores (r = 0.449), the meaning and hope subscale (r = 0.378), and the caring and respect subscale (r = 0.546). It is important to evaluate the spiritual needs of patients with cancer and their caregivers. In this evaluation, it is essential to elicit the perspectives of cancer patients and their caregivers concerning spiritual needs and religion. Effective spiritual care for patients and their caregivers can only be provided if their beliefs and priorities are taken into consideration.

Music therapy for supporting informal carers of adults with life-threatening illness pre- and post-bereavement; a mixed-methods systematic review.

BACKGROUND: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). METHODS: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. RESULTS: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. CONCLUSIONS: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. SYSTEMATIC REVIEW PRE-REGISTRATION: PROSPERO [CRD42021244859].

Supportive care for elderly patients with cancer.

This review highlights the significance of supportive care for elderly patients with cancer and their caregivers. Supportive care for older patients with cancer focuses on improving their quality of life by addressing physical, psychological, social, and spiritual aspects related to the treatment and care of the patient. Patient-reported outcomes and family involvement may play significant roles in providing holistic support. Interdisciplinary collaboration among healthcare professionals ensures effective treatment and enhances the patient's journey throughout the disease trajectory.

Managing Gastrointestinal Symptoms Resulting from Treatment with Trofinetide for Rett Syndrome: Caregiver and Nurse Perspectives.

Rett syndrome (RTT) is a rare genetic neurodevelopmental disorder mainly affecting female individuals. Trofinetide was recently approved as the first treatment for RTT, largely on the basis of results from the phase 3 LAVENDER trial, in which trofinetide showed improvements in core symptoms of RTT compared with placebo. However, gastrointestinal (GI) symptoms such as diarrhea and vomiting were commonly reported side effects, and taste was also a reported issue. The objective of this article is to describe the perspectives of five caregivers of girls in trofinetide clinical trials as well as those of three nurse trial coordinators, with a focus on management of GI symptoms of trofinetide treatment.Audio Abstract available for this article. Audio Abstract: Jane Lane provides an overview and discusses key findings of the article titled "Managing Gastrointestinal Symptoms Resulting from Treatment with Trofinetide for Rett Syndrome: Caregiver and Nurse Perspectives." (MP4 83274 KB).

Online mindfulness-based stress reduction improves anxiety and depression status and quality of life in caregivers of patients with severe mental disorders. / ç½‘ç»œæ­£å¿µå‡åŽ‹ç–—æ³•å¯æ”¹å–„ä¸¥é‡ç²¾ç¥žéšœç¢æ‚£è€ ç §æ–™è€ ç„¦è™‘æŠ‘éƒçŠ¶æ€åŠå ¶ç”Ÿæ´»è´¨é‡.

OBJECTIVES: To explore the effects of online mindfulness-based stress reduction (MBSR) on the anxiety and depression status, and quality of life in the caregivers of patients with severe mental disorders. METHODS: Ninety-three caregivers for patients with schizophrenia or bipolar disorder, who were hospitalized in Yunnan Provincial Mental Hospital in March 2021, were enrolled and randomly divided into control group (n=47) and MBSR intervention group (n=46). Both groups received basic health education and rehabilitation skill training, while the intervention group received additional online MBSR for 8 weeks. The anxiety and depression status, and the quality of life of the caregivers were evaluated by Self-rating Anxiety Scale (SAS), Self-rating Depression Scale (SDS) and the 36-item Short Form Health Survey (SF-36) before and 8 weeks after intervention, respectively. RESULTS: Thirteen caregivers dropped out of the study, and 80 subjects (40 in each group) were included in the final analysis. At the baseline, there were no significant differences in SAS, SDS and SF-36 scores between two groups (all P>0.05). Compared with the baseline, SAS and SDS scores in the intervention group significantly decreased after 8 weeks of intervention (both P<0.01) and were significantly lower than those in the control group (both P<0.01). There were no significant changes in the control group (all P>0.05). Except the physiological function dimension, the total score and the scores of each dimension of SF-36 in the intervention group were significantly increased after 8-week intervention (all P<0.05), and were significantly higher than those in the control group (all P<0.01). There were no significant changes in the control group before and after intervention (all P>0.05). CONCLUSIONS: Online MBSR can reduce the anxiety and depression levels, improve the quality of life in the caregivers of patients with severe mental disorders.

Effects of Mindfulness Based Interventions in Adults and Older Adults Caregivers of Patients with Early Stage Alzheimer's Disease: A Randomized Pilot Study.

Background: Many studies have highlighted the effect of training with mindfulness-based interventions (MBIs) on the psycho-physical rebalancing of patients suffering from various pathologies, and their families. Objective: In this study, the effect of a training with mindfulness-based stress reduction (MBSR) on quality of life and emotion regulation (depression) was verified in caregivers (CGs) of patients affected by Alzheimer's disease at early stage (AD-P). Methods: In this randomized controlled study, 22 CGs (age≥60 years) were treated with MBIs, in particular MBSR, and 22 CGs had no treatment. Tests (T0-T1 six months) included: SF 36-Quality of Life (QoL); Caregiver Burden Inventory (CBI); FACIT-Spiritual-Well-Being; Beck Depression Inventory (BDI); Everyday Cognition scales; and Mini-Mental State Examination (for AD-P). Results: Significant differences emerged between T0 and T1 for CGs with MBSR in the following dimensions: Depression-BDI (p > 0.001), Burden CBI-Total (0.001), CBI-Time dependent burden (p < 0.001), CBI-Developmental burden (p < 0.001), CBI-Physical burden (p < 0.001); and pain (p = 0.002) all decreased; while CBI-Social burden (p = 0.004), QoL-Health Role Limitation (p < 0.000), QoL-Role-Limitation-Emotional-Problem (p < 0.000), QoL-Energy-fatigue (p < 0.000), QoL-Emotional Well-Being (p < 0.001), QoL-Social Well Being (p = 0.010), and QoL-General Health (p = 0.004) increased. The control group of untreated CG showed a significant worsening in the dimensions of Physical functioning (p = 0.036) and pain (p = 0.047). Conclusions: AD-CGs treated with MBI reduced their burden and depression and experienced an improvement in all the dimensions of quality of life.

Identifying longitudinal healthcare pathways and subsequent mortality for people living with dementia in England: an observational group-based trajectory analysis.

BACKGROUND: The number of people living with dementia (PLWD) continues to increase, particularly those with severe symptomatology. Severe symptoms and greater ill-health result in more acute care need. Early healthcare interventions can prove beneficial. Healthcare use has not been analysed as a holistic set of interlinked events. This study explores different healthcare pathways among PLWD, social or spatial inequalities in healthcare pathways and subsequent mortality risk. METHODS: Group-based trajectory models (GBTM) were applied to electronic healthcare records. We generated clusters of PLWD with similar five-year, post-diagnosis trajectories in rates of primary and secondary healthcare use. Potential social and spatial variations in healthcare use clusters were examined. Cox Proportional Hazards used to explore variation in subsequent mortality risk between healthcare use clusters. RESULTS: Four healthcare use clusters were identified in both early- (n = 3732) and late-onset (n = 6224) dementia populations. Healthcare use variations were noted; consistent or diminishing healthcare use was associated with lower subsequent mortality risk. Increasing healthcare use was associated with increased mortality risk. Descriptive analyses indicated social and spatial variation in healthcare use cluster membership. CONCLUSION: Healthcare pathways can help indicate changing need and variation in need, with differential patterns in initial healthcare use post-diagnosis, producing similar subsequent mortality risk. Care in dementia needs to be more accessible and appropriate, with care catered to specific and changing needs. Better continuity of care and greater awareness of dementia in primary can enhance prospects for PLWD. Research needs to further illuminate holistic care need for PLWD, including health and social care use, inequalities in care, health and outcomes.

Developing a best-practice agenda for music therapy research to support informal carers of terminally ill patients pre- and post-death bereavement: a world café approach.

BACKGROUND: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement. METHODS: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations. RESULTS: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research. CONCLUSIONS: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services.

Patients' and caregivers' perspectives of the atopic dermatitis journey.

BACKGROUND: Understanding the patient journey is important to optimize care for patients with atopic dermatitis (AD) and overcome challenges in diagnosis and management. OBJECTIVE: To explore patient and caregiver perspectives regarding their experience with AD. METHODS: Patients and caregivers of patients with AD completed a pre-meeting survey and were invited to join an advisory board meeting in their country (China, Hong Kong, Ireland, Japan and Lebanon) to discuss the survey results. Data were analyzed descriptively. RESULTS: The survey included 31 participants (patients and caregivers) from Hong Kong (n = 7), China (n = 7), Ireland (n = 6), Japan (n = 6) and Lebanon (n = 5). The most challenging factors in the AD journey were management of symptoms before a confirmed diagnosis (68%), sudden recurrence of flares or worsening of symptoms (68%) and lifestyle changes (52%). In terms of overall AD management, 35% of participants indicated that AD was managed well, 23% had a clear treatment plan and 19% were generally satisfied with disease management. A collaborative relationship with healthcare professionals was favored. CONCLUSION: A holistic assessment of AD includes understanding patient and caregiver preferences, needs, experiences and disease perceptions. Addressing the identified gaps may improve the management of AD.

Trends in private caregiving cost after implementing a comprehensive nursing service covered by national health insurance: Interrupted time series.

BACKGROUND: The Korean government has implemented a comprehensive nursing care service system (CNS) to mitigate the stress faced by caregivers. OBJECTIVE: This study aimed to assess trends in the estimated average costs of private caregiving and determine the difference in costs between those using CNS and those not using it. DESIGN: A comparative interrupted time series analysis with a 2-year lag period verified total private caregiving cost trends; biannual differences in costs were evaluated based on using CNS. PARTICIPANTS: The main unit of analysis was episode. We extracted a total of 6418 episodes of hospitalization in acute care settings that included the use of caregiving services (formal, informal caregiving and CNS). METHODS: We conducted segmented regression to assess the impact of CNS on total private caregiving costs using data from 2012 to 2018, excluding the years 2015 and 2016 of the Korean Health Panel dataset. RESULTS: We presented that the immediate mean difference in total private caregiving costs between CNS users and non-users was -444.7 USD two years after the implementation of the CNS policy (95 % CI -714.5 to -174.5, p-value 0.001). Among individuals living in rural areas, two years after the implementation of the CNS policy, there was a significant immediate mean cost difference of -476.9 USD in total private caregiving costs between CNS users and non-users (p-value 0.011). Similarly, for episodes with a Charlson Comorbidity Index (CCI) score of 0 to 1, there was a substantial immediate mean cost difference in total private caregiving costs between CNS users and non-users, amounting to -399.9 USD two years after the CNS policy (p-value 0.008). CONCLUSIONS: This study evaluated the trend of total private caregiving costs between groups using and not using CNS. After two years of being covered by CNS health insurance, those who utilized CNS paid $433 less for their total private caregiving cost over a 6-month period, compared to those who did not use CNS. The adoption of CNS may be an effective system for relieving the financial burden on inpatients in need of private caregiving services. TWEETABLE ABSTRACT: Korean Comprehensive Nursing Service reduces private caregiving costs.

The Role of Spirituality for Coping with Cancer and the Spiritual Care Needs of Women with Breast Cancer and their Family Caregivers in Turkey: A Qualitative Study.

This study aims at determining the spiritual care needs of women with breast cancer and their family caregivers, as well as the effect of spirituality on coping with this illness. This qualitative research utilized a phenomenological design. In-depth individual interviews were conducted with breast cancer women and family caregivers. A total of 26 participants (13 women with breast cancer and 13 family caregivers) were involved. The data were examined using inductive thematic analysis. Three main themes were identified: "Being diagnosed with breast cancer; its emotional and life-related impacts;" "Spirituality in fighting with cancer;" and "Caring period and needs". The results showed that the diagnosis and treatment of breast cancer have multifaceted effects on women and their family caregivers. Spirituality was found to be an essential factor in coping with cancer for women with cancer and their family caregivers. In addition, the results showed that women and family caregivers have some unmet spiritual care needs.

Health and social care needs of people living with dementia: a qualitative study of dementia support in the Victorian region of Gippsland, Australia.

INTRODUCTION: There is a lack of information about the experiences of people living with dementia and their carers, especially in rural and regional areas. Understanding these experiences helps to identify gaps and unmet needs within the health system and improve quality of care and outcomes for people living with dementia. The aim of this study was to improve our knowledge of dementia support needs. This included access to health and social care services and supports for people living with dementia and those who provide informal or formal support to someone living with dementia. METHODS: Interviews were conducted with 26 participants from the Gippsland region of Victoria, Australia with knowledge of dementia care. Purposive sampling engaged people with lived experience, carers/family members and health professionals delivering dementia care and social services. Discussions centred around participants' experiences of support services, the diagnosis process and what they thought was needed to improve the services and supports offered. Thematic analysis of the data was undertaken using the framework method. RESULTS: The interview data indicated that the needs of many people living with dementia and their carers were not currently being met. The themes were limited access to services and supports, including primary and specialist care, often impacted by lack of knowledge of care options, difficulty navigating the system and funding models as a barrier, leading to delays in getting a diagnosis and accessing specialist services; lack of holistic care to enable people living with dementia to 'live well'; and stigma impacted by a lack of knowledge of dementia among professionals and in the community. Relationship-centred care was described as a way to improve the lives of people living with dementia. CONCLUSION: Key areas for improvement include increasing community awareness of dementia and available local services, more support to obtain an early dementia diagnosis, increased help to navigate the system, especially immediately after diagnosis, and easier access to appropriate home support services when they are needed. Other recommendations include person-centred care across settings - supported by funding models, more education and communication skills training for health professionals and care staff - and greater support for and increased recognition of carers.

Investigation of the effect of Jacobson's relaxation technique on the fatigue of family caregivers of hemodialysis patients: a single-blinded randomized controlled trial.

BACKGROUND: Caring for hemodialysis patients could be a heavy burden on family caregivers, causing them to become fatigued and decrease their quality of life. This study aimed to investigate whether Jacobson's relaxation can help alleviate the fatigue of family caregivers of hemodialysis patients. METHODS: This randomized controlled trial was conducted in 2021. Sixty-six family caregivers of hemodialysis patients were recruited by convenience sampling from a referral hospital in Tehran, Iran, and assigned randomly by coin toss to two groups of experimental (n = 32) and control (n = 34). Caregivers in the experimental group performed Jacobson's relaxation three times a week, each time for 30-45 min, for 30 days. The score and severity of fatigue before, 2 weeks after, and 1 month after the intervention were measured with the Fatigue Severity Scale. Data analysis was performed in the statistics software SPSS using descriptive statistics (frequency, percentage, mean, and standard deviation) and analytic statistics (Independent Samples t-test, Mann-Whitney U test, Chi-Square test, Fisher's exact test, and RM-ANOVA test). The significance level was less than 0.05. RESULTS: The fatigue scores of the experimental and control groups were not significantly different before the intervention (4.42 ± 0.42 vs. 4.38 ± 0.42, P = 0.696). However, the experimental group had significantly lower fatigue scores than the control group 2 weeks after the intervention (4.11 ± 0.63 vs. 4.39 ± 0.42, P = 0.036) and 1 month after the intervention (3.5 ± 0.71 vs. 4.4 ± 0.44, P = 0.001). The results also showed a significant drop in the fatigue score of the experimental group after the intervention (P < 0.0001), but no such change in the control group (P = 0.662). CONCLUSION: Jacobson's relaxation technique was effective in alleviating the fatigue of family caregivers of hemodialysis patients. Nurses are therefore recommended to promote the technique as a safe and easy method of fatigue management for family caregivers.

Caregivers' experiences of accessing HIV Early Infant Diagnosis (EID) services and its barriers and facilitators, India.

BACKGROUND: India has rolled out Early Infant Diagnosis (EID) program for HIV infection in all states. EID program consists of testing of Infants exposed to HIV periodically over 18 months of age which is a multi-step complex testing cascade. Caregivers represent the primary beneficiary of EID program i.e., infants exposed to HIV and face multiple challenges to access EID services. As part of national EID program outcome assessment study, this study narrates caregivers' perspectives on barriers and facilitators to access and utilize EID services. METHODS: The study was conducted in 31 integrated counselling and testing centres (ICTCs) located in 11 high burden HIV states. A total of 66 in-depth interviews were conducted with caregivers' of infants enrolled in EID program. Thematic analysis was carried out to help identify themes underlying barriers and facilitators to access EID services and utilization from caregivers' perspectives. RESULTS: The stigma and discrimination prevalent in society about HIV remains a key demand side (caregiver-level) barrier. Non-disclosure or selective disclosure of HIV status led to missed or delayed EID tests and delayed HIV diagnosis and initiation of Anti-Retroviral Therapy (ART) for infants exposed to HIV. On supply side (health system-level), accessibility of healthcare facility with EID services was reported as a key barrier. The distance, time and cost were key concerns. Many caregivers faced difficulties to remember the details of complex EID test schedule and relied on a phone call from ICTC counsellor for next due EID test. Delayed EID test results and lack of communication of test results to caregiver were reported as primary barriers for completing the EID test cascade. DISCUSSION: The study reports caregiver-level and health system-level barriers and facilitators for access to EID services from the caregivers' perspectives. While, decentralisation and single window approaches can improve the access, timely communication of test results to the caregiver also need to be built in with appropriate use of technology. A holistic intervention including PLHIV support networks and the peer-led support mechanisms would be useful to address societal factors. CONCLUSION: The study findings have high significance for developing program implementation strategies to improve access and to build right-based and patient-centred EID services.

Towards an integrated type 1 diabetes management in low-resource settings: barriers faced by patients and their caregivers in healthcare facilities in Ghana.

BACKGROUND: In Low-Middle-Income Countries (LMICs), young people living with Type 1 Diabetes Mellitus (T1DM) face structural barriers which undermine adequate T1DM management and lead to poor health outcomes. However, research on the barriers faced by young people living with T1DM have mostly focused on patient factors, neglecting concerns regarding plausible barriers that may exist at the point of healthcare service delivery. OBJECTIVE: This study sought to explore barriers faced by young people living with T1DM and their caregivers at the point of healthcare service delivery. METHODS: Data were drawn from a qualitative research in southern Ghana. The research was underpinned by a phenomenological study design. Data were collected from 28 young people living with T1DM, 12 caregivers, and six healthcare providers using semi-structured interview guides. The data were collected at home, hospital, and support group centres via face-to-face interviews, telephone interviews, and videoconferencing. Thematic and framework analyses were done using CAQDAS (QSR NVivo 14). RESULTS: Eight key barriers were identified. These were: shortage of insulin and management logistics; healthcare provider knowledge gaps; lack of T1DM care continuity; poor healthcare provider-caregiver interactions; lack of specialists' care; sharing of physical space with adult patients; long waiting time; and outdated treatment plans. The multiple barriers identified suggest the need for an integrated model of T1DM to improve its care delivery in low-resource settings. We adapted the Chronic Care Model (CCM) to develop an Integrated Healthcare for T1DM management in low-resource settings. CONCLUSION: Young people living with T1DM, and their caregivers encountered multiple healthcare barriers in both in-patient and outpatient healthcare facilities. The results highlight important intervention areas which must be addressed/improved to optimise T1DM care, as well as call for the implementation of a proposed integrated approach to T1DM care in low-resource settings.

Diagnosis, epilepsy treatment and supports for neurodevelopment in children with Dravet Syndrome: Caregiver reported experiences and needs.

BACKGROUND: Dravet syndrome is a rare infantile onset epilepsy syndrome encompassing treatment resistant epilepsy and neurodevelopmental difficulties. There is limited data regarding caregiver experiences of diagnosis, treatment and supports for the associated neurodevelopmental problems. METHOD: Semi-structured interviews were conducted with caregivers of 36/48 children (75% of total population in Sweden) with Dravet syndrome. Data was analysed using thematic analysis. RESULTS: Regarding the diagnostic experience, themes were: Delays in diagnostic process, genetic testing not optimal, communication of Dravet syndrome diagnosis and support and information soon after diagnosis. Caregivers felt that delays in diagnosis and testing could have been avoided whilst experiences of communication of diagnosis and support after diagnosis varied. In terms of treatment for seizures, the themes were: Satisfied with treatment, emergency treatment, treatment with antiseizure medications, strategies to control seizures via temperature regulation/avoidance of infections and use of equipment and aids. Caregivers were in the main accepting that seizures in Dravet syndrome are very difficult to treat and that seizure freedom is often an unachievable goal. Many felt frustrated that they were expected to take responsibility with respect to choice of medication. They often employed strategies (e.g., avoidance of physical activity) to reduce seizures or their impact. In terms of supports for neurodevelopmental problems, the themes were: Struggled to access support, lack of integrated healthcare and satisfaction with school. Many caregivers felt that accessing necessary supports for their children and developmental and behavioural needs was a struggle and that the provision of support often lacked integration e.g., lack of collaboration between child's disability service and school. Caregivers also expressed a desire that there would be better knowledge of Dravet syndrome in emergency departments and schools, that care would be better integrated and that there would be more supports for assessment and interventions regarding the associated neurodevelopmental problems. CONCLUSION: The responses of caregivers of children with Dravet syndrome highlight the need for supports from diagnosis for both epilepsy and neurodevelopmental problems. Good examples of provision were identified but parents often felt they lacked support and support often came from providers who lacked knowledge of the syndrome. Collaboration between medical, disability and school services was often lacking.

Dyadic Art Appreciation and Self-Expression Program (NCGG-ART) for People with Dementia or Mild Cognitive Impairment and Their Family Caregivers: A Feasibility Study.

BACKGROUND: Non-pharmacological interventions effective for depressive mood and bilateral relationships among persons with cognitive impairment (PwCI) and their family caregivers (FCGs) have not been established. OBJECTIVE: To examine the feasibility of a newly developed group-based art appreciation and self-expression program (NCGG-ART) for dyads of PwCI and their FCGs. METHODS: This pilot randomized control trial included 34 dyads of PwCI diagnosed with mild to moderate Alzheimer's disease or mild cognitive impairment, and their FCGs, from an outpatient rehabilitation service (Holistic Physio-Cognitive Rehabilitation [HPCR]). Participants were randomly divided equally into the HPCR (control group) or NCGG-ART and HPCR (intervention group) groups. Both included 1-hour weekly, 6-week programs. The primary outcome was depressive symptoms among FCGs assessed using the Patient Health Questionnaire-9 (PHQ-9). Feasibility outcomes included participant satisfaction and motivation. FCGs were interviewed about their experiences and feelings regarding the program, which were analyzed using content analysis. RESULTS: Thirty-two dyads (intervention group:16; control group:16) completed the study period. High participation rates, satisfaction, and motivation were demonstrated throughout the intervention. Scores in the PHQ-9 among FCGs did not show positive effects: mean changes in the score were 1.3 for the intervention group and -0.8 for the control group (Cohen d:0.56). However, the qualitative analysis revealed favorable experiences and feelings of the FCGs, such as positive emotions, social interactions, and person-centered attitudes to and positive relationships with PwCI. CONCLUSIONS: This program demonstrated high feasibility with FCGs' favorable responses to emotions and relationships with PwCI, ensuring future investigations with a confirmatory study design.