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1.
Medicine (Baltimore) ; 100(14): e25397, 2021 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-33832133

RESUMEN

ABSTRACT: Decision-making to stop cancer treatment in patients with advanced cancer is stressful, and it significantly influences subsequent end-of-life palliative treatment. However, little is known about the extent to which the patient's self-decisions influenced the prognostic period. This study focused on the patient's self-decision and investigated the impact of the self-decision to stop cancer treatment on their post-cancer treatment survival period and place of death.We retrospectively analyzed 167 cases of advanced genitourinary cancer patients (kidney cancer: 42; bladder cancer: 68; prostate cancer: 57) treated at the University of Fukui Hospital (UFH), who later died because of cancer. Of these, 100 patients decided to stop cancer treatment by themselves (self-decision group), while the families of the remaining 67 patients (family's decision group) decided to stop treatment on their behalf because the patient's decision-making ability was already impaired. Differences in the post-cancer-treatment survival period and place of death between the 2 groups were examined. The association between place of death and survival period was also analyzed.The median survival period after terminating cancer treatment was approximately 6 times longer in the self-decision group (145.5 days in self-decision group vs 23.0 days in family's decision group, P < .001). Proportions for places of death were as follows: among the self-decision group, 42.0% of patients died at UFH, 45.0% at other medical institutions, and 13.0% at home; among the family's decision group, 62.7% died at UFH, 32.8% at other medical institutions, and 4.5% at home. The proportion of patients who died at UFH was significantly higher among the family's decision group (P = .011). The median survival period was significantly shorter for patients who died at UFH (UFH: 30.0 days; other institutions/home: 161.0 days; P < .001).Significantly longer post-cancer-treatment survival period and higher home death rate were observed among patients whose cancer treatment was terminated based on their self-decision. Our results provide clinical evidence, especially in terms of prognostic period and place of death that support the importance of discussing bad news, such as stopping cancer treatment with patients.


Asunto(s)
Familia/psicología , Enfermo Terminal/psicología , Neoplasias Urogenitales/mortalidad , Neoplasias Urogenitales/terapia , Privación de Tratamiento/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Actitud Frente a la Muerte , Estudios de Casos y Controles , Toma de Decisiones/fisiología , Femenino , Humanos , Japón/epidemiología , Neoplasias Renales/epidemiología , Neoplasias Renales/mortalidad , Neoplasias Renales/psicología , Neoplasias Renales/terapia , Masculino , Persona de Mediana Edad , Cuidados Paliativos/ética , Cuidados Paliativos/psicología , Pronóstico , Neoplasias de la Próstata/epidemiología , Neoplasias de la Próstata/mortalidad , Neoplasias de la Próstata/psicología , Neoplasias de la Próstata/terapia , Estudios Retrospectivos , Tasa de Supervivencia/tendencias , Cuidado Terminal/ética , Cuidado Terminal/psicología , Neoplasias de la Vejiga Urinaria/epidemiología , Neoplasias de la Vejiga Urinaria/mortalidad , Neoplasias de la Vejiga Urinaria/psicología , Neoplasias de la Vejiga Urinaria/terapia , Neoplasias Urogenitales/patología , Neoplasias Urogenitales/psicología
3.
J Korean Acad Nurs ; 51(1): 15-26, 2021 Feb.
Artículo en Coreano | MEDLINE | ID: mdl-33706328

RESUMEN

PURPOSE: This study aimed to distinguish and describe the types of perceptions of do not resuscitate (DNR) proxy decisions among families of elderly patients in a long-term care facility. METHODS: This exploratory study applied Q-methodology, which focuses on individual subjectivity. Thirty-four Q-statements were selected from 130 Q-populations formed based on the results of in-depth interviews and literature reviews. The P-samples were 34 families of elderly patients in a long-term care hospital in Busan, Korea. They categorized the Q-statements using a 9-point scale. Using the PC-QUANL program, factor analysis was performed with the P-samples along an axis. RESULTS: The families' perceptions of the DNR proxy decision were categorized into three types. Type I, rational acceptance, valued consensus among family members based on comprehensive support from medical staff. Type II, psychological burden, involved hesitance in making a DNR proxy decision because of negative emotions and psychological conflict. Type III, discreet decisions, valued the patients' right to self-determination and desire for a legitimate proxy decision. Type I included 18 participants, which was the most common type, and types II and III each included eight participants. CONCLUSION: Families' perceptions of DNR proxy decisions vary, requiring tailored care and intervention. We suggest developing and providing interventions that may psychologically support families.


Asunto(s)
Toma de Decisiones , Familia/psicología , Órdenes de Resucitación/legislación & jurisprudencia , Adulto , Femenino , Hospitales , Humanos , Entrevistas como Asunto , Cuidados a Largo Plazo , Masculino , Persona de Mediana Edad , Q-Sort , República de Corea
4.
Rev Gaucha Enferm ; 42(spe): e20200217, 2021.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-33787726

RESUMEN

OBJECTIVE: To discuss the emotional labor in pediatric nursing considering the repercussions of COVID-19 in childhood and adolescence. METHOD: Reflexion based on theoretical aspects and scientific evidence of emotional labor in pediatric nursing. RESULTS: Given the repercussions of COVID-19 on children and adolescents, it is up to the nurse to recognize them and nurture a non-traumatic and affectionate care. However, measures to control the disease affect the care provided. In this context, emotional labor process become essential, as they guide the management of the child's and family's emotions, associated with the suffering caused by the pandemic and the nurse's emotional experience when caring. CONCLUSION: Emotional support and care processes are essential in pediatrics, especially in a stressful time such as a pandemic, which requires the positive transformation of the intense and disturbing experiences of people for them to achieve psychosocial well-being.


Asunto(s)
/psicología , Emociones , Familia/psicología , Enfermería Pediátrica , Adolescente , /enfermería , Niño , Preescolar , Humanos , Acontecimientos que Cambian la Vida , Rol de la Enfermera , Relaciones Enfermero-Paciente , Personal de Enfermería/psicología , Pandemias , Psicología del Adolescente , Psicología Infantil , Investigación Cualitativa
5.
Intern Med J ; 51(3): 433-435, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-33645873

RESUMEN

Death, grief and bereavement all look different in the current COVID-19 pandemic. Patients and families are suffering as a result of COVID-19 itself, and the measures required to contain it. As a result, health professionals need to be aware of potential for additional psychological distress, as well as the risk of prolonged grief disorder.


Asunto(s)
Aflicción , Familia/psicología , Pesar , Humanos , Pandemias
6.
Glob Health Res Policy ; 6(1): 11, 2021 03 26.
Artículo en Inglés | MEDLINE | ID: mdl-33771230

RESUMEN

BACKGROUND: Although more and more attention has been paid to the psychological consequences of the lockdown policy amongst pregnant women, the underlying mechanism linking the lockdown policy to maternal depression has not been studied in the context of China. This study aimed to explore the association between the lockdown policy and maternal depressive symptoms, and whether such association was mediated by internet use and/or family support. METHODS: This cross-sectional study used multi-stage sampling techniques in central and western China. Data were collected from 1266 pregnant women using a structtured questionnaire that measured internet use, family support, and depressive symptoms. The Patient Health Questionnaire-9 (PHQ-9) was used to measure depressive symptoms. Internet use was measured by length of usage and varierity of purpose for internet use. Family support was measureed by spousal support and parental support. The structural equation modelling was employed to conduct mediation analysis to test the specificity of the hypothetical paths. RESULTS: Overall, 527 respondents (41.63%) presented depressive symptoms. The lockdown policy was negatively associated with depressive symptoms in pregnant women (ß = - 0.925, 95% CI = -1.510, - 0.360). The impact of the lockdown policy on depressive symptoms was partially mediated by internet use (ß = 1.589, 95% CI = 0.730, 2.807) and family support (ß = - 0.162, 95% CI = - 0.341, - 0.017), accounting for 42.67% of the total effect. CONCLUSIONS: The lockdown policy was generally associated with fewer depressive symptoms in pregnant women. The lockdown policy increased maternal depressive symptoms through increased internet use, but decreased maternal depressive symptoms through enhanced family support. The findings suggest that the psychological consequence of the lockdown policy may vary across different populations, and warrant the need to take into consideration the features of subgroups.


Asunto(s)
Depresión/epidemiología , Familia/psicología , Mujeres Embarazadas/psicología , Sistemas de Apoyo Psicosocial , Cuarentena/psicología , China/epidemiología , Estudios Transversales , Depresión/psicología , Política de Salud , Prevalencia
8.
Front Public Health ; 9: 625691, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33604325

RESUMEN

The exceptional circumstances of the Coronavirus disease (COVID-19) pandemic are making the grief processes challenging for families who are losing a relative for COVID-19. This community case study aimed to describe a phone-based primary preventive psychological intervention that has been delivered to these families by the Clinical Psychology unit of an Italian hospital. In particular, the article reports how the intervention has been organized within the overall hospital care pathway for families, the specific contents and components of the intervention, and the seven-phase structure of the intervention. The unique features and related challenges of the intervention, along with the implications for clinical practice, are discussed.


Asunto(s)
Aflicción , Familia/psicología , Teléfono , Servicios de Atención a Domicilio Provisto por Hospital , Humanos , Italia , Servicio de Psiquiatría en Hospital
9.
Front Public Health ; 9: 608358, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33614580

RESUMEN

The COVID-19 pandemic has changed individuals' lifestyles to a great extent, particularly in Italy. Although many concerns about it have been highlighted, its impact on children and adolescents has scarcely been examined. The purpose of this study was to explore behavioral consequences and coping strategies related to the pandemic among families in Italy, by focusing on developmental ages from the caregivers' perspective, 3 weeks into quarantine. An exploratory cross-sectional online survey was conducted over 14 days. Google Forms was employed to conduct the survey. Demographic variables and pre-existing Psychological Weaknesses (PsW) were asked. Adults' sleep difficulties (SleepScore) and coping strategies during quarantine were assessed. Behavioral changes related to quarantine of both subjects completing the form (COVIDStress) and their children (when present) were questioned. Of the 6,871 respondents, we selected 6,800 valid questionnaires; 3,245 declared children aged under 18 years of age (caregivers). PsWs were recognizable in 64.9% among non-caregivers and in 61.5% of caregivers, with a mean PsW score of 1.42 ± 1.26 and 1.30 ± 1.25 over 3 points, respectively. The 95.5% of the non-caregivers and the 96.5% of caregivers presented behavioral changes with a mean COVIDStress of 3.85 ± 1.82 and 4.09 ± 1.79 over 8, respectively (p<0.001). Sleep difficulties were present in the 61.6% of the non-caregivers and in the 64.4% of the caregivers (p < 0.001), who showed higher SleepScores (2.41 ± 1.26 against 2.57 ± 1.38 points over 6, p < 0.001). COVIDStress (and SleepScore) strongly correlated with PsW (p < 0.001). Caregivers observed behavioral changes in their children in the 64.3% of the <6 years old and in 72.5% of 6-18 years old. Caregivers' discomfort related to quarantine (COVIDStress, SleepScore) was strongly associated to behavioral changes in both age groups of <6 and 6-18 (p < 0.001). Presence of caregivers' coping strategies was less associated to behavioral changes in the <6 sample (p = 0.001) but not in the 6-18 (p = 0.06). The COVID-19 pandemic has adversely impacted families in Italy with regard to behavioral changes, especially in high-risk categories with PsWs and caregivers, especially the ones with children aged <6 years. While coping strategies functioned as protective factors, a wide array of stress symptoms had implications for children's and adolescents' behaviors. It is recommended that public children welfare strategies be implemented, especially for higher-psychosocial-risk categories.


Asunto(s)
Conducta del Adolescente , Conducta Infantil , Familia/psicología , Adolescente , Conducta del Adolescente/psicología , Adulto , Anciano , Niño , Conducta Infantil/psicología , Preescolar , Femenino , Encuestas Epidemiológicas , Humanos , Italia/epidemiología , Masculino , Salud Mental , Trastornos del Sueño-Vigilia/epidemiología , Trastornos Relacionados con Sustancias/epidemiología
11.
Holist Nurs Pract ; 35(2): 60-64, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33555718

RESUMEN

Presence of support persons enhances patient and family satisfaction. The introduction of the coronavirus disease-2019 (COVID-19) pandemic has impacted hospital operations and has reduced visitation. A virtual visitation program was implemented in critical care units to replicate visitation by video chat to ease stress on patients and family members to improve communication.


Asunto(s)
Cuidados Críticos/métodos , Telecomunicaciones/normas , Visitas a Pacientes , Actitud del Personal de Salud , /transmisión , Cuidados Críticos/tendencias , Familia/psicología , Humanos , Unidades de Cuidados Intensivos/organización & administración , Unidades de Cuidados Intensivos/tendencias , Pandemias/prevención & control , Pacientes/psicología , Telecomunicaciones/tendencias
12.
Nurs Res ; 70(2): 106-113, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33630533

RESUMEN

BACKGROUND: Hospitals need to prevent, respond to, and learn from safety risks and events perceived by patients and families, who in turn rely on nurses to respond to and report their safety concerns. OBJECTIVES: The aim of the study was to describe the process by which bedside nurses evaluate and determine the appropriate response to safety concerns expressed by patients or their families. METHODS: A qualitative design was employed. We recruited inpatient bedside nurses in an 811-bed Midwest academic medical center. Nurses provided demographic information and participated in semistructured interviews designed to elicit narratives related to evaluation and response to patient- or family-expressed safety concerns. Data analysis and interpretation were guided by grounded theory. RESULTS: We enrolled 25 nurses representing 22 units. Based on these nurses' experiences, we developed a grounded theory explaining how nurses evaluate a patient or family safety concern. Nurses make sense of the patient's or family's safety concern in order to take action. Achieving this goal requires evaluation of the meaningfulness and reasonableness of the concern, as well as the potential effect of the concern on the patient. Based on this nursing evaluation, nurses respond in ways designed to (a) manage emotions, (b) immediately resolve concerns, (c) involve other team members, and (d) address fear or uncertain grounding in reality. Nurses reported routinely handling safety concerns at the bedside without use of incident reporting. DISCUSSION: Safety requires an interpersonal and evaluative nursing process with actions responsive to patient and family concerns. Safety interventions designed to be used by nurses should be developed with the dynamic, cognitive, sensemaking nature of nurses' routine safety work in mind. Being sensitive to the vulnerability of patients, respecting patient and family input, and understanding the consequences of dismissing patient and family safety concerns are critical to making sense of the situation and taking appropriate action to maintain safety. Measuring patient safety or planning improvement based on patient or family expression of safety concerns would be a difficult undertaking using only standard approaches. A more complex approach incorporating direct patient engagement in data collection is necessary to gain a complete safety picture.


Asunto(s)
Rol de la Enfermera/psicología , Relaciones Enfermero-Paciente , Personal de Enfermería en Hospital/psicología , Seguridad del Paciente/estadística & datos numéricos , Empatía , Familia/psicología , Femenino , Teoría Fundamentada , Humanos , Masculino , Investigación Cualitativa
13.
Psicol. educ. (Madr.) ; 27(1): 85-92, ene. 2021. tab, graf
Artículo en Inglés | IBECS | ID: ibc-199712

RESUMEN

The present study is aimed at observing the degree to which family support and control determine academic performance in Mathematics and Language, and at understanding how this relationship is mediated by a series of factors related to students' motivation (self-efficacy), their study habits, the learning environment perceived at school, their school satisfaction, and a history of school retention. On this premise, a study was proposed in 44 Compulsory Secondary Education (CSE) schools, selecting 1,316 students (938 enrolled in the first, and 378 in the second year). Data confirm that both parental support and control directly influence academic performance in both subjects, but also indirectly through the mediator variables, which in the case of support are environment, satisfaction, study habits and self-efficacy, whereas in the case of control they are habits and retention


El presente estudio tiene como objetivo observar en qué medida el apoyo y el control de la familia determinan el rendimiento académico en Matemáticas y Lengua y comprender cómo esta relación está mediada por una serie de factores relacionados con la motivación (autoeficacia) de los estudiantes, sus hábitos de estudio, el ambiente de aprendizaje percibido en la escuela, su satisfacción escolar y su historial de repeticiones. Con esta premisa, se propuso un estudio en 44 escuelas de Educación Secundaria Obligatoria (ESO), seleccionando 1,316 estudiantes (938 matriculados en el primer año y 378 en el segundo). Los datos confirman que tanto el apoyo como el control de los padres influyen directamente en el rendimiento académico en ambas materias, pero también indirectamente a través de las variables mediadoras, que en el caso del apoyo son el ambiente, la satisfacción, los hábitos de estudio y la autoeficacia, mientras que en el caso del control son los hábitos y la retención


Asunto(s)
Humanos , Masculino , Femenino , Niño , Adolescente , Rendimiento Académico/psicología , Familia/psicología , Estudiantes/psicología , Matemática , Lenguaje , Educación Primaria y Secundaria , Encuestas y Cuestionarios , Análisis de Clases Latentes , Satisfacción Personal , Autoeficacia , España
14.
Psicol. educ. (Madr.) ; 27(1): 93-99, ene. 2021.
Artículo en Inglés | IBECS | ID: ibc-199713

RESUMEN

The aim of the present study is to describe the behavioral and emotional disturbances in the Fragile X Syndrome (FXS) and to analize the impact of having a member with FXS on different aspects of family functioning. A sample of 79 parents with a member with FXS and 80 parents with a member with typical development participated in the study. Results showed that between 17% and 66% of children and adolescents with FXS displayed significant behavioral and emotional disturbances and fewer prosocial behaviors. In addition, after controlling for behavioral and emotional difficulties, our results showed that families affected by FXS experienced a more negative impact on feelings about parenting, finances, siblings, and the degree of difficulty of living with a child or adolescent with FXS, and greater family adaptability and cohesion than the comparison group. In conclusion, our results highlight that it is important to consider these differences in clinical practice when supporting and counselling families affected by FXS


El objetivo del presente estudio es describir las alteraciones conductuales y emocionales en el síndrome de X frágil (SXF) y analizar las reperecusiones de tener un miembro con SXF en diferentes aspectos del funcionamiento familiar. Participaron 79 padres con un miembro con SXF y 80 padres con un miembro con desarrollo típico. Los resultados mostraron que entre el 17% y el 66% de los niños y adolescentes con SXF mostraron trastornos conductuales y emocionales significativos y menos comportamientos prosociales. Además, después de controlar las dificultades emocionales y de comportamiento, nuestros resultados mostraron que las familias afectadas por SXF experimentaron un impacto más negativo en los sentimientos relativos a la crianza de los hijos, las finanzas, los hermanos y el grado de dificultad de vivir con un niño o adolescente con SXF y más capacidad de adaptación familiar y cohesión que el grupo de comparación. Como conclusión, nuestros resultados destacan que en la práctica clínica es importante tener en cuenta estas diferencias al apoyar y asesorar a las familias afectadas por SXF


Asunto(s)
Humanos , Masculino , Niño , Adolescente , Síndrome del Cromosoma X Frágil/psicología , Familia/psicología , Problema de Conducta/psicología , Síntomas Afectivos/psicología , Conducta del Adolescente/psicología , Encuestas y Cuestionarios , Composición Familiar , Factores Socioeconómicos , Perfil de Impacto de Enfermedad
16.
PLoS One ; 16(1): e0244873, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33400700

RESUMEN

BACKGROUND: Multiple studies have highlighted the negative impact of COVID-19 and its particular effects on vulnerable sub-populations. Complementing this work, here, we report on the social patterning of self-reported positive changes experienced during COVID-19 national lockdown in Scotland. METHODS: The CATALYST study collected data from 3342 adults in Scotland during weeks 9-12 of a national lockdown. Using a cross-sectional design, participants completed an online questionnaire providing data on key sociodemographic and health variables, and completed a measure of positive change. The positive change measure spanned diverse domains (e.g., more quality time with family, developing new hobbies, more physical activity, and better quality of sleep). We used univariate analysis and stepwise regression to examine the contribution of a range of sociodemographic factors (e.g., age, gender, ethnicity, educational attainment, and employment status) in explaining positive change. RESULTS: There were clear sociodemographic differences across positive change scores. Those reporting higher levels of positive change were female, from younger age groups, married or living with their partner, employed, and in better health. CONCLUSION: Overall our results highlight the social patterning of positive changes during lockdown in Scotland. These findings begin to illuminate the complexity of the unanticipated effects of national lockdown and will be used to support future intervention development work sharing lessons learned from lockdown to increase positive health change amongst those who may benefit.


Asunto(s)
/psicología , Cuarentena/psicología , Aislamiento Social/psicología , Adulto , Ansiedad/epidemiología , Ansiedad/prevención & control , /prevención & control , Control de Enfermedades Transmisibles/métodos , Estudios Transversales , Ejercicio Físico/psicología , Familia/psicología , Femenino , Humanos , Masculino , Escocia/epidemiología , Sueño/fisiología , Higiene del Sueño , Estrés Psicológico/prevención & control , Estrés Psicológico/psicología , Encuestas y Cuestionarios
17.
Epidemiol Psychiatr Sci ; 30: e3, 2021 Jan 08.
Artículo en Inglés | MEDLINE | ID: mdl-33416043

RESUMEN

AIMS: Family carers supporting an individual with psychosis often experience poorer mental health, however, little is known about specific risk factors among these carers. We investigated the associations between demographic, caregiving characteristics and mental health outcomes in family carers supporting an individual with psychosis and compared carers' outcomes with general population norms. METHODS: We analysed baseline data from the COPe-support randomised controlled trial of online psychoeducation and peer support for adult carers supporting an individual with psychosis between 2018 and 2020. We collected carers' demographic and health outcome data, including wellbeing using Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS as primary outcome), quality of life using EQ-5D-5L and caregiving experience assessed with Experience of Caregiving Inventory. We tested associations between carers' demographic and caregiving characteristics for each outcome in turn and meta-analysed carers' WEMWBS and EQ-5D-5L with Health Survey England (HSE) general population data from 2016 and 2017, respectively. RESULTS: The 407 carers of people with psychosis had a mean WEMWBS score of 42.2 (s.d. 9.21) and their overall weighted pooled WEMWBS score was 7.3 (95% confidence interval (CI) -8.6 to -6.0, p < 0.01) lower than the HSE general population sample, indicating carers have poorer mental wellbeing by more than double the minimum clinically important difference of 3 points on WEMWBS. Among all caring relationships, partners had poorer wellbeing compared to parents with lower WEMWBS score (-6.8, -16.9 to 3.3, p = 0.03). Single carers had significantly poorer wellbeing (-3.6, -5.6 to -1.5, p < 0.01) and a more negative caregiving experience than those who were cohabiting. Spending more than 35 h per week caregiving increased carers' negative experience significantly (p = 0.01). CONCLUSION: Carers of people with psychosis have poorer mental health than non-carers. Partners, lone carers and those spending more than 35 h per week on caring were found to be most at risk of poor mental health. Based on the results, we advocate that the details of carers for individuals with psychosis should be added to the existing carers or severe mental illness registers at all general practitioner surgeries and for their wellbeing screened routinely. Future large-scale prospective studies are needed to develop a predictive model to determine risk factors, hence to aid early identification of carers' support needs. Such understandings are also useful to inform tailored intervention development.


Asunto(s)
Cuidadores/psicología , Familia/psicología , Salud Mental/estadística & datos numéricos , Trastornos Psicóticos/psicología , Calidad de Vida/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
18.
Medicina (Kaunas) ; 57(1)2021 Jan 07.
Artículo en Inglés | MEDLINE | ID: mdl-33430175

RESUMEN

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members' quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient's reported quality of life scores and their family members' mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.


Asunto(s)
Familia/psicología , Síndrome de Fatiga Crónica/fisiopatología , Calidad de Vida , Adolescente , Adulto , Niños Adultos/psicología , Anciano , Anciano de 80 o más Años , Costo de Enfermedad , Emociones , Síndrome de Fatiga Crónica/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Padres/psicología , Esposos/psicología , Adulto Joven
20.
J Pain Symptom Manage ; 61(4): e1-e4, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33476753

RESUMEN

CONTEXT: People bereaved from COVID-19 report higher levels of grief than people bereaved from natural causes. The full impact of this onslaught of grief will not be known for some time. Ensuring high-quality bereavement care in the context of COVID-19 presents unprecedented challenges to end-of-life care. OBJECTIVES: We aimed to determine how psychological symptoms explain functional impairment. METHODS: A sample of people bereaved through COVID-19 (N = 307) in the United States completed demographic questions and self-report measures of neuroticism; symptoms of depression, generalized anxiety, posttraumatic stress, separation distress, and dysfunctional grief; and functional impairment due to a COVID-19 loss. RESULTS: Most participants' scores were in the clinical ranges for generalized anxiety, depression, dysfunctional grief, and functional impairment. Functional impairment scores were not associated with age, gender, and time since loss but were associated with being diagnosed with COVID-19, having received professional help with the loss, and a close relationship to the deceased. A logistic regression model showed that, after controlling for covariates, the odds of functional impairment significantly increased by 27% for higher scores in separation distress, 25% for higher scores in dysfunctional grief, and 13% for higher scores in posttraumatic stress. CONCLUSION: People bereaved because of COVID-19 are at risk of functional impairment, especially if they have symptoms of separation distress, dysfunctional grief, and/or posttraumatic stress. Attention to identifying and treating functional impairment may be important in facilitating grieving persons' full participation in social and economic life during and after the pandemic.


Asunto(s)
Aflicción , /psicología , Familia/psicología , Distrés Psicológico , Recuperación de la Función , Adulto , Femenino , Cuidados Paliativos al Final de la Vida , Humanos , Masculino , Persona de Mediana Edad , Factores de Riesgo , Trastornos por Estrés Postraumático/epidemiología , Estrés Psicológico/epidemiología , Factores de Tiempo , Adulto Joven
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