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1.
Medicine (Baltimore) ; 99(8): e19237, 2020 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32080126

RESUMEN

The current study aimed to evaluate the status of anxiety among caregivers of children with epilepsy and examine the associated factors.A cross-sectional study was conducted in western China, which consecutively recruited children with epilepsy in 2018. The self-rating anxiety scale (SAS) was used to assess the status of anxiety among caregivers of children with epilepsy. We collected information about aspects of sociodemographic data, disease status, attitude of caregivers towards the disease and family conditions as independent variables, using multiple linear regression to analyze factors related to the status of anxiety among caregivers.A total of 334 participants were included in the study with a response rate of 95.4% (334/350). The mean age of children with epilepsy was 6.05 ±â€Š4.11 years. 7.2% (24/334) of patients were newly diagnosed and 55.4% (185/334) of patients presented with generalized epilepsy. A total of 25.7% (86/334) of caregivers among children with epilepsy presented the symptom of anxiety, with the scores of SAS 44.31 ±â€Š10.558. SAS scores were negatively correlated with the children's age (B = -0.141; standard error = 0.135; P = .008), attitude towards seizures (B = -0.153; standard error = 1.192; P = .004) and medical expenses payment (B = -0.169; standard error = 1.703; P = .002).Symptoms of anxiety are common among caregivers of children with epilepsy in western China. Healthcare providers should pay more attention to caregivers with younger children, difficult financial situation, and greater fear of seizures. Exploring mental health interventions for caregivers is important.


Asunto(s)
Ansiedad/epidemiología , Cuidadores/psicología , Epilepsia/epidemiología , Factores de Edad , Ansiedad/psicología , Niño , Preescolar , China/epidemiología , Estudios Transversales , Epilepsia/psicología , Femenino , Humanos , Modelos Lineales , Masculino
2.
Nephrol Nurs J ; 47(1): 11-20, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32083433

RESUMEN

Patients living with end stage renal disease (ESRD) who are undergoing hemodialysis experience frequent hospitalizations associated with complications of care and exacerbations of illness. Efforts to reduce hospitalizations have had limited success. The purpose of this study was to explore why hospitalizations occur from the perspectives of patients undergoing hemodialysis treatment, their caregivers, and health care providers. Semi-structured interviews and focus groups were conducted with 21 patients living with ESRD, 10 caregivers, and three focus groups with health care professionals. Findings are discussed under four main themes: Graft site/Catheter/Access issues, "My resistance is low," "I could not breathe,"" and "The perfect storm." Results highlight the complexity of care and vulnerability of patients with ESRD. Further interprofessional research is needed to improve transitional care and care delivery for patient populations receiving hemodialysis.


Asunto(s)
Hospitalización/estadística & datos numéricos , Fallo Renal Crónico/terapia , Diálisis Renal , Cuidadores/psicología , Grupos Focales , Humanos , Factores de Riesgo , Participación de los Interesados
3.
Nephrol Nurs J ; 47(1): 23-34, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32083434

RESUMEN

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.


Asunto(s)
Cuidadores/psicología , Diálisis Renal , Humanos , Investigación Cualitativa
4.
Health Qual Life Outcomes ; 18(1): 8, 2020 Jan 07.
Artículo en Inglés | MEDLINE | ID: mdl-31910863

RESUMEN

BACKGROUND: Acute leukemia (AL) not only impairs the quality of life (QOL) of patients, but also affects that of their family caregivers (FCs). Studies on QOL of AL patients and their FCs are limited. This study aimed to evaluate the QOL of AL patients and their FCs, and to explore the factors associated with QOL of patients and of FCs. METHODS: A multicenter cross-sectional study was conducted. The QOL of 196 patient-FC dyads was assessed. The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu) was used for patients, and the 36-item Short-Form Health Survey (SF-36) was used for FCs. Independent-samples t-tests or one-way analysis of variance were used to compare QOL subscale scores between groups with different sociodemographic/clinical characteristics. Multiple regression analysis was conducted to identify the factors associated with QOL of AL patients and their FCs. RESULTS: The total FACT-Leu score for AL patients was 76.80 ± 16.44, and the physical component summary (PCS) and mental component summary (MCS) scores for FCs were 64.67 ± 15.44 and 52.50 ± 13.49, respectively. All QOL subscales for patients (t = 12.96-34.73, p < 0.001) and FCs (t = 2.55-14.36, p < 0.05), except role emotional (t = - 0.01, p = 0.993), were lower than those reported in previous studies. Sex, employment, and chemotherapy were significantly associated with total FACT-Leu score in AL patients (p < 0.05). Age, sex, marital status, education, employment, and relationship to patients were significantly associated with SF-36 PCS or MCS (p < 0.05). CONCLUSIONS: AL patients and their FCs both have lower QOL than the population in previous studies. These findings suggest that not only AL patients' physical and mental health but also overall family QOL should be assessed. Interventions supporting patient-FC dyads should be developed to improve their QOL.


Asunto(s)
Cuidadores/psicología , Leucemia Mieloide Aguda/psicología , Calidad de Vida , Adulto , Anciano , China , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Análisis de Regresión , Encuestas y Cuestionarios
5.
BMC Public Health ; 20(1): 18, 2020 Jan 07.
Artículo en Inglés | MEDLINE | ID: mdl-31910840

RESUMEN

BACKGROUND: The health-related quality of life (HRQoL) of adolescents with CP in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). METHODS: Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed using the Cerebral Palsy Quality of Life-Teens proxy-report questionnaire (CPQoL-Teens), adolescent mental health using the Strengths and Difficulty Questionnaire (SDQ) and caregiver mental health using the Depression, Anxiety and Stress Scale (DASS-21). Theoretical and statistical interests (i.e. bivariate analysis, p < 0.05) identified potential predictors which were entered into hierarchical multiple linear regression (HMLR) models in order of clinical significance; HMLR related adolescent clinical characteristics, adolescent and caregiver mental health and proxies of socioeconomic status to CPQoL-Teens dimensions. RESULTS: One hundred fifty-four adolescents with CP (mean age 15y 1mo, SD 1y 8mo, female 31.2%) participated in this study. Twenty-four factors were identified to explore for relationship to adolescent proxy-reported HRQoL. Fifteen of the factors correlated to one or more CPQoL-Teens dimension; strongest correlation was between 'feelings about functioning' and motor impairment (r = 0.545). Nine were predictive of CPQoL-Teens dimensions; adolescent sex, school attendance, severity of motor impairment, hearing and speech impairment, mother's education, primary caregiver depression and stress, and having a sanitary latrine at home resulting in score changes of between 0.79 (95% CI 0.24 to 1.35) to 35.1 (95% CI 6.03 to 64.22). CONCLUSIONS: Many of the factors predicting the proxy-reported HRQoL of adolescents with CP are amenable to intervention, and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.


Asunto(s)
Cuidadores/psicología , Parálisis Cerebral/psicología , Áreas de Pobreza , Calidad de Vida/psicología , Población Rural/estadística & datos numéricos , Adolescente , Bangladesh , Femenino , Humanos , Masculino , Análisis Multivariante , Encuestas y Cuestionarios
6.
Z Gerontol Geriatr ; 53(2): 123-128, 2020 Mar.
Artículo en Alemán | MEDLINE | ID: mdl-31965285

RESUMEN

BACKGROUND AND OBJECTIVE: The aim of the study was to evaluate a specific treatment concept for patients suffering from dementia in a geriatric day clinic with respect to improvement of dementia-related behavioral abnormalities and effects on distress of the caring relatives. MATERIAL AND METHODS: Designed as a naturalistic study with a sample of 34 dementia patients (average age 83 years, 62% female, 82% mild dementia, 18% moderate dementia) surveyed at three time points, the dementia-related behavioral symptoms and the relatives' distress were measured using the neuropsychiatric inventory. A waiting time before treatment was implemented as a control condition. RESULTS: Compared with waiting time, a significant improvement of dementia-related behavioral abnormalities was found after treatment, especially in patients suffering from moderate dementia. The distress of caring relatives was clearly reduced. CONCLUSION: The interprofessional treatment of patients with dementia using a specific program in a geriatric day clinic leads to a clear improvement in behavioral symptoms and positively influences the distress of caring relatives.


Asunto(s)
Síntomas Conductuales/complicaciones , Cuidadores/psicología , Demencia/terapia , Servicios de Salud para Ancianos/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Síntomas Conductuales/terapia , Demencia/diagnóstico , Demencia/psicología , Femenino , Humanos , Masculino , Resultado del Tratamiento
7.
Health Qual Life Outcomes ; 18(1): 5, 2020 Jan 06.
Artículo en Inglés | MEDLINE | ID: mdl-31907046

RESUMEN

BACKGROUND: The evidence regarding patient related outcomes in children with infrequent congenital heart defects (I-CHD) is very limited. We sought to measure quality of life (QoL) in children with I-CHD, and secondarily, to describe QoL changes after one-year of follow-up, self-reported by children and through their caregivers' perspective. METHODS: We assembled a cohort of children diagnosed with an I-CHD in a cardiovascular referral center in Colombia, between August 2016 and September 2018. At baseline and at one-year follow-up, a clinical psychology assessment was performed to establish perception of QoL. The Pediatric Quality of Life Inventory (PedsQL) 4.0 scale was used in both general and cardiac modules for patients and for their caregivers. We used a Mann-Whitney U test to compare scores for general and cardiac modules between patients and caregivers, while a Wilcoxon test was used to compared patients' and caregivers' baseline and follow-up scores. Results are presented as median and interquartile range. RESULTS: To date, QoL evaluation at one-year follow-up has been achieved in 112/157 patients (71%). Self-reported scores in general and cardiac modules were higher than the QoL perceived through their caregivers, both at baseline and after one-year of follow-up. When compared, there was no statistically significant difference in general module scores at baseline between patients (median = 74.4, IQR = 64.1-80.4) and caregivers scores (median = 68.4, IQR = 59.6-83.7), p = 0.296. On the contrary, there was a statistical difference in baseline scores in the cardiac module between patients (median = 79.6, IQR = 69.7-87.4) and caregivers (median = 73.6, IQR = 62.6-84.3), p = 0.019. At one-year of follow-up, scores for the general module between patients (median = 72.8, IQR = 59.2-85.9) and caregivers (median = 69.9, IQR = 58.1-83.7) were not statistically different (p = 0.332). Finally, a significant difference was found for cardiac module scores between patient (median = 75.0, IQR = 67.1-87.1) and caregivers (median = 73.1, IQR = 59.5-83.8), p = 0.034. CONCLUSIONS: QoL in children with I-CHD can be compromised. However, children have a better perception of their QoL when compared with their caregivers' assessments. To provide high-quality care, besides a thorough clinical evaluation, QoL directly elicited by the child should be an essential aspect in the integral management of I-CHD.


Asunto(s)
Cardiopatías Congénitas/psicología , Calidad de Vida/psicología , Cuidadores/psicología , Niño , Preescolar , Colombia , Femenino , Estudios de Seguimiento , Humanos , Masculino , Autoinforme
8.
Gesundheitswesen ; 82(2): 196-201, 2020 Feb.
Artículo en Alemán | MEDLINE | ID: mdl-31698475

RESUMEN

AIM OF THE STUDY: Live-in caregivers who provide household- and person-related services for the elderly in need of care in German private households mostly come from abroad. These labour conditions generally do not meet any tariff or labour law-related binding regulations. Live-in caregivers are additionally exposed to social isolation and the confusion of work and privacy. The study is full of gaps because the target group cannot be reached easily. The aim of the present study was to qualitatively explore the work and health situation of live-in caregivers with a focus on workplace-related stressors and resources. METHODOLOGY: The recruitment process was carried out via placement agencies, online portals, social network platforms as well as care associations. Nine semi-structured interviews were conducted with live-in care-givers in private households. The evaluation was based on Mayring's content analysis with inductive category formation. RESULTS AND CONCLUSIONS: Permanent presence, communication difficulties and interpersonal conflicts are daily burdens for live-in caregivers. These burdens are associated with impaired mental and physical health in terms of exhaustion, insomnia, increased irritability and depression symptoms. However, live-in caregivers also receive support from third parties and distance themselves emotionally and locally from the direct care situation. The feeling of gratitude, the experience of being accepted and also financial security are mentioned as further relevant resources. While the target group can be made visible through resource-intensive recruiting efforts in the research context, the introduction of a common occupational definition is necessary in the political context.


Asunto(s)
Cuidadores , Composición Familiar , Estrés Psicológico , Lugar de Trabajo , Anciano , Cuidadores/psicología , Alemania , Humanos , Investigación Cualitativa , Lugar de Trabajo/psicología
9.
Dev Neurorehabil ; 23(1): 18-30, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31042403

RESUMEN

Purpose: To conduct a qualitative investigation of engagement in pediatric rehabilitation therapy.Methods: Interviews were conducted with 10 youth, 10 caregivers, and 10 service providers. Transcripts were analyzed thematically using an inductive approach.Results: Themes illustrated three perspectives: engagement as a connection with components of the therapy process, engagement as working together, and engagement as an affective and motivational process. Engagement created valued connections with therapy components and forward momentum for therapy.Conclusions: The themes supported a view of engagement as complex, transactional, and multidimensional. Participants focused on different, yet not discrepant, aspects of engagement. Youth focused on having fun and personal connection with service providers. Caregivers provided a more complex perspective encompassing both their own and their child's engagement, with an emphasis on relationship, understanding what is taking place, and feeling valued in the process. Service providers highlighted goal attainment and the value of engagement in bringing about outcomes.


Asunto(s)
Cuidadores/psicología , Rehabilitación Neurológica/normas , Enfermeras Pediátricas/psicología , Satisfacción del Paciente , Adolescente , Niño , Familia/psicología , Femenino , Humanos , Masculino , Motivación , Enfermeras Pediátricas/normas , Participación del Paciente , Encuestas y Cuestionarios
10.
Health Psychol ; 39(1): 29-36, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31535879

RESUMEN

OBJECTIVE: Over 20% of patients with heart failure (HF) experience clinical depression, which is associated with higher rates of mortality, morbidity, and hospitalization. Support from family members or friends (whom we refer to as care partners [CPs]) can lower the risk of these outcomes. We examined whether HF patients with depression received assistance from CPs living outside of their homes. Further, we examined whether patient depression was associated with support-related strain among out-of-home CPs. METHOD: We analyzed baseline survey data from 348 HF patients with reduced ejection fraction and their CPs. Patients with scores on the Center for Epidemiological Studies Depression Scale-10 (Kohout, Berkman, Evans, & Cornoni-Huntley, 1993) of ≥10 were classified as having clinically significant depressive symptoms (i.e., depression). Outcomes included CP-reported hr per week helping with health care and talking with patients via telephone and scores on the Modified Caregiver Strain Index. Negative binomial regression models examined differences in the amount of in-person and telephone support for patients with and without depression, controlling for patients' comorbidities, living alone, CP geographic distance, and CP emotional closeness to the patient. RESULTS: CPs provided more in-person support to HF patients with depression (M = 3.64 hr) compared with those without depression (M = 2.60 hr per week, incident rate ratio [IRR] = 1.40, p = .019). CPs provided more telephone support to patients with depression (M = 3.02 hr) compared with those without depression (M = 2.09 hr per week, IRR = 1.42, p < .001). Patient depression had no effect on caregiver burden (IRR = 1.00, p = .843). CONCLUSION: Patients with clinically significant depressive symptoms receive more in-person assistance and telephonic support from CPs. Despite that additional contact, caregiver burden was not greater among the supporters of depressed patients. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Asunto(s)
Cuidadores/psicología , Depresión/psicología , Insuficiencia Cardíaca/psicología , Adaptación Psicológica , Anciano , Femenino , Humanos , Masculino , Apoyo Social
11.
J Clin Nurs ; 29(1-2): 20-30, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31531993

RESUMEN

AIM: To explore the impact of cultural beliefs of dementia as witchcraft in sub-Saharan Africa. BACKGROUND: The population of sub-Saharan Africa is ageing, which increases the number of those at risk of dementia. Mental health and physical diseases that affect behaviour have often been associated with witchcraft. Accusations of witchcraft leave individuals vulnerable and at risk. METHOD: A systematic review, which followed the Preferred Reporting for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and completed a PRISMA checklist. CINAHL, PsycINFO, Web of Knowledge, PubMed and Science Direct databases were searched for relevant studies published from their inception to 31 May 2019 by applying appropriate Medical Subject Headings. Data analysis adhered to Thomas and Harding's thematic synthesis. RESULTS: The review identified limited literature on this topic, with only five papers meeting the inclusion and exclusion criteria. Studies explored health provision, and knowledge and beliefs of dementia in Tanzania and South Africa. Three themes emerged as follows: (a) poor knowledge of dementia, including the belief of dementia as witchcraft; (b) challenges of supporting a family member with dementia in the community; and (c) health-seeking behaviours of and for people with dementia. CONCLUSION: There remains a need for dementia awareness and education across sub-Saharan Africa communities, including faith and traditional healers, and healthcare professionals to support pluralistic healthcare provision. Nurses are the best-placed healthcare professionals to support these initiatives and the development and implementation of low-resource nonpharmacological interventions to support people with dementia and their families living in the community. RELEVANCE TO CLINICAL PRACTICE: Nurses working in sub-Saharan Africa and those caring for patients from sub-Saharan Africa can only provide person-centred care and support for a person with dementia and their family if they understand their cultural beliefs, one of which may include witchcraft.


Asunto(s)
Cuidadores/psicología , Demencia/enfermería , Hechicería/psicología , Asistencia Sanitaria Culturalmente Competente , Demencia/psicología , Familia/psicología , Conocimientos, Actitudes y Práctica en Salud , Humanos , Sudáfrica , Tanzanía
12.
J Clin Nurs ; 29(1-2): 31-52, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31532022

RESUMEN

AIMS AND OBJECTIVES: To analyse the experiences of older people with a diagnosed functional mental illness and their carers in relation to mental health service delivery and analyse the experiences of health and social care professionals who care for and treat older people who have a diagnosed functional mental illness. BACKGROUND: The prevalence of functional mental illness in older adults is notable but to date has received less research attention than dementia. Older adults with functional mental illness have life expectancy of up to 20 years less than the rest of the population. Therefore, the experiences of older adults with functional mental illness, their carers and healthcare professionals, in relation to mental health services, need further exploration. DESIGN: Integrative literature review. METHODS: A five-stage process was informed by Whittemore and Knafl. MeSH was used. Keyword searches of MEDLINE, CINAHL, Cochrane Library, PsycINFO, EMBASE and AMED were conducted between January 2000-October 2017. Titles were screened, and data were extracted manually and analysed using narrative synthesis. The PRISMA checklist was used. RESULTS: A total of 342 articles were deemed potentially relevant to this review. Once inclusion and exclusion criteria were applied, 28 articles were included. The literature presented an overarching theme "determinants influencing older people with functional mental illness use of services." The overarching theme is supported by two main themes: inevitable consequences of ageing and variations of the availability of healthcare services for older people with functional mental illness. CONCLUSION: Several determinants influence use of services by older people with functional mental illness. Older people with functional mental illness often perceived they did not have a mental health need. Within the literature, there was little acknowledgement of the experiences of older people with functional mental illness regarding their support needs. RELEVANCE TO CLINICAL PRACTICE: This integrative review has highlighted that some older people with functional mental illness do not seek mental health support because they believe that functional mental illness is an inevitable consequence of ageing; this is mirrored at times by healthcare professionals and carers. In addition to this finding, different views prevail regarding the impact that ageless and age-defined mental health service delivery models have on the needs of older people with functional mental illness. Further research is required to understand these findings.


Asunto(s)
Envejecimiento/psicología , Cuidadores/psicología , Trastornos Mentales/psicología , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Actitud Frente a la Salud , Femenino , Servicios de Salud para Ancianos/organización & administración , Humanos , Trastornos Mentales/enfermería , Servicios de Salud Mental
13.
Dev Sci ; 23(1): e12843, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31045301

RESUMEN

What aspects of infants' prelinguistic communication are most valuable for learning to speak, and why? We test whether early vocalizations and gestures drive the transition to word use because, in addition to indicating motoric readiness, they (a) are early instances of intentional communication and (b) elicit verbal responses from caregivers. In study 1, 11 month olds (N = 134) were observed to coordinate vocalizations and gestures with gaze to their caregiver's face at above chance rates, indicating that they are plausibly intentionally communicative. Study 2 tested whether those infant communicative acts that were gaze-coordinated best predicted later expressive vocabulary. We report a novel procedure for predicting vocabulary via multi-model inference over a comprehensive set of infant behaviours produced at 11 and 12 months (n = 58). This makes it possible to establish the relative predictive value of different behaviours that are hierarchically organized by level of granularity. Gaze-coordinated vocalizations were the most valuable predictors of expressive vocabulary size up to 24 months. Study 3 established that caregivers were more likely to respond to gaze-coordinated behaviours. Moreover, the dyadic combination of infant gaze-coordinated vocalization and caregiver response was by far the best predictor of later vocabulary size. We conclude that practice with prelinguistic intentional communication facilitates the leap to symbol use. Learning is optimized when caregivers respond to intentional vocalizations with appropriate language.


Asunto(s)
Cuidadores/psicología , Comunicación , Conducta del Lactante , Desarrollo del Lenguaje , Femenino , Fijación Ocular , Gestos , Humanos , Lactante , Lenguaje , Masculino , Vocabulario
14.
Pflege ; 33(1): 34-42, 2020 Feb.
Artículo en Alemán | MEDLINE | ID: mdl-31842660

RESUMEN

Challenges in dementia care at home - The situation at home of a married couple Abstract. Background: People with dementia and their relatives are faced with major challenges due to complex dementia symptoms. Families need information and counselling in order to find adequate dementia care services tailored to their needs. AIM: This case report's objective is to exemplify the domestic situation of a married couple who is faced with significant challenges within the family and the care system due to the husband's dementia and Parkinson's disease. METHODS: The Dementia Care Nurse project included case monitoring; by means of different assessments relevant information was recorded and the family's situation described. RESULTS: The family's problems and their need for support were multifaceted and entailed reimbursement of costs, application for care services as well as management of challenging behaviours and reduction of the caregiver's psychosocial burden. CONCLUSIONS: The family, particularly the spouse caregiver, was effectively supported in meeting the challenges of dementia, e. g. by drawing on professional services and sorting out entitlement to benefits. From the perspective of the experience in the project, independent counselling structures such as a case management approach are indispenable in order to stabilise the domestic situation.


Asunto(s)
Cuidadores , Demencia , Adaptación Psicológica , Cuidadores/psicología , Consejo , Humanos
15.
J Clin Nurs ; 29(1-2): 195-207, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31610045

RESUMEN

AIMS AND OBJECTIVES: To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. BACKGROUND: The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. DESIGN: An interpretative qualitative design. METHODS: Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. RESULTS: Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: "a deep sense of loss," "an overwhelming process," "parents making transitions happen," "a shock to the adult healthcare system" and "the unbearable pressure." Nurses were often seen as instrumental to counteracting some of these challenges. CONCLUSIONS: There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. RELEVANCE TO CLINICAL PRACTICE: Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.


Asunto(s)
Cuidadores/psicología , Familia/psicología , Discapacidad Intelectual/enfermería , Transición a la Atención de Adultos/organización & administración , Adolescente , Adulto , Femenino , Humanos , Discapacidad Intelectual/psicología , Masculino , Persona de Mediana Edad , Relaciones Profesional-Familia , Investigación Cualitativa , Escocia , Adulto Joven
16.
Support Care Cancer ; 28(1): 303-308, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31044306

RESUMEN

PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed. RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons). CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.


Asunto(s)
Actitud Frente a la Muerte , Servicios de Salud del Niño , Emociones , Neoplasias , Padres/psicología , Cuidado Terminal/psicología , Adolescente , Adulto , Conducta , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Niño , Preescolar , Femenino , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Cuidados Paliativos al Final de la Vida/psicología , Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Humanos , India/epidemiología , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Neoplasias/psicología , Neoplasias/terapia , Cuidados Paliativos/psicología , Cuidados Paliativos/estadística & datos numéricos , Relaciones Padres-Hijo , Aceptación de la Atención de Salud/psicología , Encuestas y Cuestionarios , Cuidado Terminal/estadística & datos numéricos
17.
Hu Li Za Zhi ; 66(6): 90-97, 2019 Dec.
Artículo en Chino | MEDLINE | ID: mdl-31802459

RESUMEN

This report discusses an experience of taking care of a breast cancer patient with rapidly deteriorating, fungating wounds and herpes simplex virus wounds and describes the physical and psychological effects on the patient and the related decreases in the quality of life of both the patient and her caregivers. Nursing care was implemented from December 14th, 2017 to January 23rd, 2018. Data collection was performed through direct caregiving, observation, interviews, and chart review. Three major problems were identified: difficulties with wound care, psychological distress of the patient, and the coping problems of the caregivers. Based on these problems, nursing interventions were implemented. During the period, fungating wound care guidelines were used to teach the patient and her caregivers the core principles of fungating wound management. Meanwhile, the COPE framework (creativity, optimism, planning, and expert information) was applied to train the patient and her caregivers how to develop problem-solving skills and build self-confidence. Finally, the patient and her family successfully overcame these challenges. The patient was relieved of stress and anxiety, became better able to self-manage her symptoms, sustain hope for the future, and improve her perception of body self-image. We suggested that the patient and her family be considered a single, supportive unit and then helped them cope with the disease and build self-care confidence in order to improve their life quality and to coexist with the disease. We hope that our clinical experience will be taken as a reference by patient caregivers.


Asunto(s)
Neoplasias de la Mama/enfermería , Neoplasias de la Mama/psicología , Cuidadores/psicología , Femenino , Humanos , Calidad de Vida , Estrés Psicológico
18.
Epidemiol Psychiatr Sci ; 29: e81, 2019 Dec 16.
Artículo en Inglés | MEDLINE | ID: mdl-31839018

RESUMEN

AIMS: Patients with severe mental disorders in low-resource settings have limited access to services, resulting in overwhelming caregiving burden for families. In extreme cases, this has led to the long-term restraining of patients in their homes. China underwent a nationwide initiative to unlock patients and provide continued treatment. This study aims to quantify household economic burden in families after unlocking and treatment, and to identify factors associated with increased burden due to schizophrenia. METHODS: A total of 264 subjects were enrolled from three geographically diverse provinces in 2012. Subjects were patients with schizophrenia who were previously put under restraints and had participated in the 'unlocking and treatment' intervention. The primary outcome was the current household economic burden, obtained from past year financial information collected through on-site interview. Patient disease characteristics, treatment, outcomes and family caregiving burden were collected as well. Univariate and multivariate linear regression were used to construct risk factor models for indirect economic burden. RESULTS: After participating in the intervention, 85% of patients continued to receive mental health services, 70% used medication as prescribed and 80% were never relocked. Family members reported significantly decreased caregiving burden after receiving the intervention. Mean direct and indirect household economic burdens were CNY963 (US$31.7) and CNY11 724 (US$1670) per year, respectively, while family total income was on average CNY12 108 (US$1913) per year. Greater disease severity and poorer patient psychosocial function at time of study were found to be independent factors related to increased indirect burden. CONCLUSIONS: The 'unlocking and treatment' intervention has improved the lives of patients and families. Indirect burden due to disease is still a major economic issue that needs to be addressed, potentially through improving treatment and patient functioning. Our findings contribute to the unravelling and eventual elimination of chronic restraining of mentally ill patients in low-resource settings.


Asunto(s)
Cuidadores/psicología , Costo de Enfermedad , Costos de la Atención en Salud , Gastos en Salud , Servicios de Salud Mental/economía , Esquizofrenia/terapia , Adolescente , Adulto , China/epidemiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Esquizofrenia/economía , Psicología del Esquizofrénico , Encuestas y Cuestionarios , Adulto Joven
19.
Rev. Esc. Enferm. USP ; 53: e03466, Jan.-Dez. 2019.
Artículo en Inglés, Español | LILACS, BDENF - Enfermería | ID: biblio-1020391

RESUMEN

RESUMEN Objetivo Describir la experiencia del cuidado familiar a la mujer con cáncer de mama durante el tratamiento, desde la perspectiva de los cuidadores en el contexto mexicano. Método Estudio cualitativo fenomenológico. Fueron realizadas entrevistas en profundidad con cuidadores de mujeres sobrevivientes de cáncer de mama seleccionados mediante muestreo intencional, acumulativo y secuencial. Se llevó a cabo un análisis de contenido convencional. Resultados Participaron siete cuidadores. Los cuidadores refieren sus experiencias positivas y negativas al asumir su rol de cuidadores informales en el contexto familiar. Sobre la fortaleza de la reciprocidad del cuidado y su recompensa, prevalecen los momentos críticos, los sentimientos negativos y la falta de recursos de apoyo durante la experiencia. Ello permite entender el vínculo del cuidado informal para potenciarlo con estrategias de afrontamiento y orientación especifica por parte del personal de enfermería. Conclusión Los participantes experimentaron una transformación en su identidad como cuidadores y al ser conscientes de su experiencia, fueron capaces de describir sus cualidades lo que incrementa sus estrategias de afrontamiento tanto de la enfermedad como de los desafíos del cuidado.


RESUMO Objetivo Descrever a experiência do cuidado familiar com a mulher com câncer de mama durante o tratamento, do ponto de vista dos cuidadores no contexto mexicano. Método Estudo qualitativo fenomenológico. Foram realizadas entrevistas em profundidade com cuidadores de mulheres sobreviventes ao câncer de mama selecionados por meio de amostragem intencional, acumulativa e sequencial. Foi realizada uma análise de conteúdo convencional. Resultados Participaram sete cuidadores. Os cuidadores relatam suas experiências positivas e negativas ao assumir seu papel de cuidadores informais no contexto familiar. Sobre a força da reciprocidade do cuidado e sua recompensa, prevalecem os momentos críticos, os sentimentos negativos e a falta de recursos de apoio durante a experiência. Isso permite entender o vínculo do cuidado informal para potencializá-lo com estratégias de enfrentamento e orientação específica por parte do pessoal de enfermagem. Conclusão Os participantes experimentaram uma transformação na sua identidade como cuidadores e, ao ser conscientes da sua experiência, foram capazes de descrever suas qualidades, o que aumenta suas estratégias de enfrentamento tanto da doença quanto dos desafios do cuidado.


ABSTRACT Objective To describe the experience of family care to women with breast cancer during treatment from the perspective of caregivers in the Mexican context. Method Qualitative phenomenological study. In-depth interviews were conducted with caregivers of women who survived breast cancer. Participants were selected by intentional, cumulative and sequential sampling. A conventional content analysis was performed. Results Participation of seven caregivers, who reported their positive and negative experiences when assuming their role as informal caregivers in the family context. On the strength of the reciprocity of care and its reward, prevailed critical moments, negative feelings, and lack of support resources during the experience. This enables the understanding of the informal care bond in order to enhance it with coping strategies and specific guidance from the nursing staff. Conclusion Participants experienced a transformation in their identity as caregivers and by being aware of their experience, they could describe their qualities, which increased their coping strategies with the disease and the care challenges.


Asunto(s)
Humanos , Femenino , Adulto , Persona de Mediana Edad , Anciano , Neoplasias de la Mama/terapia , Familia , Cuidadores/psicología , Enfermería Oncológica , Entrevista , Investigación Cualitativa
20.
BMC Public Health ; 19(1): 1721, 2019 Dec 23.
Artículo en Inglés | MEDLINE | ID: mdl-31870334

RESUMEN

BACKGROUND: Community acquired pneumonia is responsible for 16% of under 5 mortality in India, probably due to delayed recognition and qualified care seeking. Therefore these deaths could possibly be averted by creating community awareness and promoting care seeking from qualified physicians in the government system. The objective of study was to assess the effectiveness of facility-based and village-based behavior change communication interventions delivered to community using validated information, education and communication materials, along with infrastructural strengthening of health facilities, for change in care seeking from government system for community acquired pneumonia in rural Lucknow, India. METHOD: Community based open labeled behavioral trial in 2 by 2 factorial design was conducted in eight rural blocks of Lucknow, northern India. Trained community health workers conducted Pneumonia Awareness Sessions once a month for the care givers of children using validated information, education and communication materials either at the villages or at government health facilities. Prior infrastructural strengthening of public health facilities was done to provide optimal care to cases. Pre packed pneumonia drug kits were provided which had amoxicillin, paracetamol and an instruction card on their use as well as pictorial representation of danger signs of pneumonia. RESULTS: Study lasted from October 2015 to September 2018. Adherence to conduct of facility-based intervention was 93.0% (279/300) and to village-based intervention was 73.4% (7638/10410). In village-based intervention there was 79.3% (p < 0.0001) increase from a baseline of 3.3% (14/420) and facility-based intervention 68.9% (p = 0.02) increase from a baseline of 5.35% (21/392) in cases of possible pneumonia treated at government health facilities. CONCLUSION: Conduct of structured pneumonia awareness session using validated information, education and communication material at village level with infrastructural strengthening resulted in improved qualified care seeking from government facilities for community acquired pneumonia. TRIAL REGISTRATION: AEARCTR-0003137, retrospectively registered on 10/July/2018.


Asunto(s)
Infecciones Comunitarias Adquiridas/prevención & control , Comunicación en Salud/métodos , Neumonía/prevención & control , Servicios de Salud Rural , Cuidadores/educación , Cuidadores/psicología , Preescolar , Agentes Comunitarios de Salud/psicología , Infecciones Comunitarias Adquiridas/mortalidad , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , India/epidemiología , Lactante , Masculino , Aceptación de la Atención de Salud , Neumonía/mortalidad , Evaluación de Programas y Proyectos de Salud
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