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1.
Contemp Clin Trials ; 141: 107535, 2024 06.
Artículo en Inglés | MEDLINE | ID: mdl-38614446

RESUMEN

BACKGROUND: Few clinical trials include a detailed protocol for stakeholder engagement in the design and execution of the clinical trial. Deliver-EE is a pragmatic clinical trial to assess how different types of home-delivered meals can affect older adults' health and well-being. We present the protocol for stakeholder engagement in this national, multi-site trial and initial findings from our efforts. METHODS: Twenty-nine participants were recruited to two stakeholder advisory panels. The "Lived Experience Perspectives" panel is defined as the clients, caregivers, and meal delivery drivers with first-hand knowledge and lived experiences with meal delivery. The "System Perspectives" panel is defined as representatives from the larger financial, clinical, regulatory, and operational environments in which meal delivery to homebound older adults operate. Together, these two groups holistically represent interested parties that coordinate the interdependent elements of meal delivery to homebound older adults in order to: 1) inform our understanding of what matters most to older adults, their families, and the larger health and social care systems; 2) provide strategies to overcome challenges conducting the study; 3) enhance dissemination and uptake of study findings; and 4) identify opportunities for future research. RESULTS: Although stakeholder partners share a common goal of using home-delivered meals as a method to improve outcomes for homebound older adults, individuals have different goals for participating as advisors in this research. CONCLUSIONS: Understanding what individual stakeholders hope to gain from their participation is critical in designing an effective engagement protocol and critical for meaningful and rigorous stakeholder engagement in clinical trials.


Asunto(s)
Personas Imposibilitadas , Comidas , Participación de los Interesados , Humanos , Anciano , Femenino , Masculino , Cuidadores , Investigación sobre la Eficacia Comparativa , Anciano de 80 o más Años , Servicios de Atención de Salud a Domicilio/organización & administración , Vida Independiente , Servicios de Alimentación/organización & administración , Proyectos de Investigación
2.
Orphanet J Rare Dis ; 19(1): 172, 2024 Apr 19.
Artículo en Inglés | MEDLINE | ID: mdl-38641814

RESUMEN

BACKGROUND: The 'diagnostic odyssey' is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of 'red flags' that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. RESULTS: Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. CONCLUSIONS: This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients' history and experiences with healthcare providers. These findings could be used to develop a clinical decision­making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the 'diagnostic odyssey' and improve the patient experience.


Asunto(s)
Atención a la Salud , Enfermedades Raras , Humanos , Niño , Enfermedades Raras/diagnóstico , Cuidadores , Personal de Salud
3.
Appetite ; 198: 107356, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38636668

RESUMEN

Caregiver feeding practices during the complementary feeding period (6 months-2 years) may be particularly important for infants with Down syndrome (DS) as they are at higher risk for later health conditions (e.g., obesity, diabetes) that can be influenced by early feeding practices. However, how well caregivers of infants with DS are meeting infant feeding evidence-based practices is relatively unknown. Caregivers of infants with DS (N = 75) and caregivers of typically developing (TD) infants (N = 66) aged 0-2 years completed an online survey about their infant feeding practices and information sources. Caregiver practices and information sources were statistically compared between groups. Results indicated that there are significant differences in the feeding practices of caregivers of infants with DS when compared to caregivers of TD infants. Caregivers of infants with DS were less likely to meet infant feeding evidence-based practices than caregivers of TD infants. Caregivers of infants with DS were also more concerned about their infant's food intake and later weight status. Some individual feeding practices also significantly differed between groups, with caregivers of infants with DS more likely to meet evidence-based practices of purchasing iron rich foods and avoiding added salt, but less likely to use responsive feeding practices than caregivers of TD infants. Caregivers of infants with DS were also less likely to receive information about how to navigate the complementary feeding period than caregivers of TD infants. Coupled with existing research, the results of the present study suggest that infant feeding evidence-based practices should be reviewed for their appropriateness for this population and additional support for caregivers of infants with DS should be implemented to help them navigate this important period.


Asunto(s)
Cuidadores , Síndrome de Down , Conducta Alimentaria , Fenómenos Fisiológicos Nutricionales del Lactante , Humanos , Lactante , Cuidadores/psicología , Masculino , Femenino , Conducta Alimentaria/psicología , Adulto , Preescolar , Encuestas y Cuestionarios , Desarrollo Infantil , Recién Nacido , Alimentos Infantiles
4.
J Geriatr Oncol ; 15(3): 101740, 2024 04.
Artículo en Inglés | MEDLINE | ID: mdl-38513534

RESUMEN

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.


Asunto(s)
Cuidadores , Leucemia Mieloide Aguda , Humanos , Anciano , Leucemia Mieloide Aguda/terapia , Cuidados Paliativos
5.
J Pain Symptom Manage ; 67(6): 490-500, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38447621

RESUMEN

OBJECTIVES: Concurrent chemoradiation to treat head and neck cancer (HNC) may result in debilitating toxicities. Targeted exercise such as yoga therapy may buffer against treatment-related sequelae; thus, this pilot RCT examined the feasibility and preliminary efficacy of a yoga intervention. Because family caregivers report low caregiving efficacy and elevated levels of distress, we included them in this trial as active study participants. METHODS: HNC patients and their caregivers were randomized to a 15-session dyadic yoga program or a waitlist control (WLC) group. Prior to randomization, patients completed standard symptom (MDASI-HN) and patients and caregivers completed quality of life (SF-36) assessments. The 15-session program was delivered parallel to patients' treatment schedules. Participants were re-assessed at patients' last day of chemoradiation and again 30 days later. Patients' emergency department visits, unplanned hospital admissions and gastric feeding tube placements were recorded over the treatment course and up to 30 days later. RESULTS: With a consent rate of 76%, 37 dyads were randomized. Participants in the yoga group completed a mean of 12.5 sessions and rated the program as "beneficial." Patients in the yoga group had clinically significantly less symptom interference and HNC symptom severity and better QOL than those in the WLC group. They were also less likely to have a hospital admission (OR = 3.00), emergency department visit (OR = 2.14), and/or a feeding tube placement (OR = 1.78). CONCLUSION: Yoga therapy appears to be a feasible, acceptable, and possibly efficacious behavioral supportive care strategy for HNC patients undergoing chemoradiation. A larger efficacy trial is warranted.


Asunto(s)
Cuidadores , Quimioradioterapia , Neoplasias de Cabeza y Cuello , Calidad de Vida , Yoga , Humanos , Masculino , Femenino , Cuidadores/psicología , Persona de Mediana Edad , Neoplasias de Cabeza y Cuello/terapia , Anciano , Resultado del Tratamiento , Proyectos Piloto , Estudios de Factibilidad , Adulto
6.
Nutrients ; 16(6)2024 Mar 16.
Artículo en Inglés | MEDLINE | ID: mdl-38542773

RESUMEN

Responsive feeding (RF), the reciprocal feeding approach between caregiver and child that promotes child health, is understudied among low-income caregivers. This mixed methods study with low-income caregivers of 12-to-36-month-olds aimed to (1) assess variability in RF and associations with children's dietary intake, and (2) explore caregivers' perceptions of RF. Caregivers (n = 134) completed an online survey with RF questions (n = 25), grouped into environmental (meal environment, caregiver modeling, caregiver beliefs) and child (self-regulation, hunger/satiety cues, food for reward, food acceptance) influences scores. Children's recent food group consumption was loaded onto healthy and less healthy intake scores. In an adjusted multiple linear regression analysis, greater RF scores for environmental and child influences were associated with greater healthy intake scores (p's < 0.01). Greater scores for environmental influences were also associated with lower scores for unhealthy intake (p < 0.01). From focus groups with a separate sample of caregivers (n = 24), thematic analysis uncovered that two themes aligned (trust in child cues, positive strategies to encourage children to eat non-preferred foods) and two misaligned (lack of trust in child cues, use of force/bribery) with RF. Complementary integration of quantitative and qualitative findings can inform future interventions with low-income caregivers, encouraging trust in young children's hunger/satiety cues and positive strategies for food acceptance to improve diet quality.


Asunto(s)
Cuidadores , Dieta Saludable , Humanos , Preescolar , Niño , Dieta , Ingestión de Alimentos , Comidas , Conducta Alimentaria
7.
BMC Psychiatry ; 24(1): 230, 2024 Mar 26.
Artículo en Inglés | MEDLINE | ID: mdl-38532365

RESUMEN

BACKGROUND: Studies suggest that individualized music listening is an effective, non-pharmacological intervention for improving the quality of life of people with dementia in the institutional care setting. Noting that most people with dementia live at home, we conduct a randomized controlled trial to assess the feasibility and effectiveness of an app-based individualized music listening intervention for people with dementia in the home care setting. The intervention is delivered by family caregivers. METHODS: We will recruit N = 130 dyads consisting of one person with dementia living at home and their family caregiver. After a baseline assessment, dyads are randomly assigned by gender to either the intervention or control group. People with dementia in the intervention group listen to individualized music playlists for 20 min every other day for six weeks via the self-developed Individualized Music and Dementia app. The control group receives standard care. All dyads complete paper-and-pencil questionnaires six weeks before the start of the intervention (T0), directly before the intervention (T1), directly after the intervention (T2), and six weeks later (T3). During the intervention period, all caregivers also complete daily ecological momentary assessments via the app. During three home visits, a trained project member will observe the dyads and collect hair samples. After the intervention, semi-structured interviews will be conducted to collect information about participants' experiences with the app and intervention. The primary outcome is the attainment of individual goals established during the baseline assessment. Secondary outcomes are the well-being, physiological stress and quality of life of people with dementia and their caregivers; people with dementia's behavioural and psychological symptoms of dementia, resistance during care, and reactions to the music; caregivers' burden of care, positive aspects of care, and caregiving self-efficacy; and the quality of the caregiver-care recipient interaction. DISCUSSION: Our study will assess the extent to which an app-based individualized music listening intervention is feasible and effective for enhancing the well-being and quality of life of people with dementia living at home and their family caregivers. TRIAL REGISTRATION: German Clinical Trials Register DRKS00025502 and ISRCTN registry ISRCTN68084105, https://doi.org/10.1186/ISRCTN68084105.


Asunto(s)
Demencia , Servicios de Atención de Salud a Domicilio , Musicoterapia , Humanos , Cuidadores/psicología , Demencia/psicología , Demencia/terapia , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto
8.
Front Public Health ; 12: 1250608, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38525347

RESUMEN

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.


Asunto(s)
Cuidadores , Trastornos Relacionados con Sustancias , Niño , Adolescente , Humanos , Adulto Joven , Cuidadores/psicología , Pandemias , Zambia/epidemiología , Atención a la Salud , Trastornos Relacionados con Sustancias/terapia
9.
J Pediatr Rehabil Med ; 17(1): 97-106, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38427509

RESUMEN

PURPOSE: This study aimed to assess the effectiveness of simple and basic home-based exercise programs (HEPs), including pediatric massage (PM), executed by caregivers at their homes in the management of children with spastic cerebral palsy (CP). METHODS: Sixty-eight children with spastic CP (diplegia) aged 4-12 years were randomly assigned to PM and HEP groups for a randomized controlled trial continuing from November 01, 2021 to June 2022. Parents provided home-based exercises to both groups, five times a week for 12 weeks. However, the PM group was additionally provided with PM. Modified Ashworth Scale (MAS), Gross Motor Function Measure (GMFM-88) and Gross Motor Function Classification System (GMFCS) were used for evaluation of spasticity and gross motor activity at baseline as well as after six and 12 weeks of intervention. Comparative analysis of data was carried out with SPSS-20. RESULTS: Mean age in HEP and PM groups was 6.65±2.12 and 7.09±2.22 years respectively. Data revealed homogeneity of both groups at the beginning of study. The PM group showed a statistically significant decrease in MAS scores after six and 12 weeks of intervention (p < 0.05) when compared with the HEP group, but similar changes did not happen in GMFM scores and GMFCS levels. However, comparative analysis revealed statistically significant change in GMFM scores and GMFCS levels (p < 0.05) when compared from baseline to 12 weeks of intervention in both groups. CONCLUSION: PM along with HEPs can be used effectively to reduce spasticity and to improve gross motor ability if performed for a period of at least six and 12 weeks respectively. In conjunction with HEPs, PM has better outcomes in the management of tone and movement disorders of spastic CP than HEPs alone.


Asunto(s)
Parálisis Cerebral , Niño , Humanos , Preescolar , Cuidadores , Espasticidad Muscular , Terapia por Ejercicio , Masaje
10.
BMC Palliat Care ; 23(1): 66, 2024 Mar 08.
Artículo en Inglés | MEDLINE | ID: mdl-38454420

RESUMEN

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.


Asunto(s)
Padres , Calidad de la Atención de Salud , Niño , Humanos , Padres/psicología , Cuidadores , Personal de Salud , Consenso , Encuestas y Cuestionarios
11.
J Pediatr Nurs ; 76: 167-175, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38412708

RESUMEN

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.


Asunto(s)
Cuidadores , Humanos , Niño , Cuidadores/psicología , Estados Unidos , Padres/psicología , Servicios de Atención de Salud a Domicilio , Enfermedad Crónica/terapia , Femenino , Masculino , Carga del Cuidador/psicología
12.
Zhejiang Da Xue Xue Bao Yi Xue Ban ; 53(1): 108-115, 2024 Jan 31.
Artículo en Inglés, Chino | MEDLINE | ID: mdl-38310084

RESUMEN

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.


Asunto(s)
Trastornos Mentales , Atención Plena , Humanos , Calidad de Vida , Cuidadores , Depresión/terapia , China , Ansiedad/terapia
13.
J Relig Health ; 63(2): 1490-1503, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38305825

RESUMEN

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.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Neoplasias , Terapias Espirituales , Humanos , Persona de Mediana Edad , Anciano , Cuidadores , Estudios Transversales , Turquía , Espiritualidad
14.
Ugeskr Laeger ; 186(4)2024 01 22.
Artículo en Danés | MEDLINE | ID: mdl-38305319

RESUMEN

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.


Asunto(s)
Neoplasias , Cuidado Terminal , Humanos , Anciano , Calidad de Vida , Cuidados Paliativos , Cuidado Terminal/psicología , Neoplasias/terapia , Neoplasias/psicología , Cuidadores/psicología
15.
BMC Palliat Care ; 23(1): 33, 2024 Feb 07.
Artículo en Inglés | MEDLINE | ID: mdl-38326820

RESUMEN

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.


Asunto(s)
Aflicción , Musicoterapia , Humanos , Cuidadores , Enfermo Terminal , Pesar , Cuidados Paliativos
16.
Adv Ther ; 41(4): 1305-1317, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38378975

RESUMEN

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).


Asunto(s)
Enfermedades Gastrointestinales , Síndrome de Rett , Femenino , Humanos , Cuidadores , Causalidad , Enfermedades Gastrointestinales/inducido químicamente , Enfermedades Gastrointestinales/tratamiento farmacológico , Glutamatos/uso terapéutico , Síndrome de Rett/complicaciones , Síndrome de Rett/tratamiento farmacológico , Síndrome de Rett/diagnóstico
17.
Int J Nurs Stud ; 152: 104689, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38308934

RESUMEN

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.


Asunto(s)
Hospitalización , Servicios de Enfermería , Humanos , Análisis de Series de Tiempo Interrumpido , Cuidadores , Programas Nacionales de Salud
18.
BMC Palliat Care ; 23(1): 55, 2024 Feb 27.
Artículo en Inglés | MEDLINE | ID: mdl-38408966

RESUMEN

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].


Asunto(s)
Aflicción , Musicoterapia , Adulto , Humanos , Calidad de Vida/psicología , Cuidadores/psicología , Pesar
19.
BMC Geriatr ; 24(1): 150, 2024 Feb 14.
Artículo en Inglés | MEDLINE | ID: mdl-38350866

RESUMEN

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.


Asunto(s)
Demencia , Humanos , Demencia/diagnóstico , Demencia/epidemiología , Demencia/terapia , Atención a la Salud , Instituciones de Salud , Apoyo Social , Inglaterra/epidemiología , Cuidadores
20.
J Alzheimers Dis ; 97(4): 1923-1930, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38306028

RESUMEN

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.


Asunto(s)
Enfermedad de Alzheimer , Atención Plena , Humanos , Anciano , Enfermedad de Alzheimer/terapia , Enfermedad de Alzheimer/psicología , Cuidadores/psicología , Calidad de Vida/psicología , Proyectos Piloto , Dolor
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