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COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers.

ABSTRACT: BACKGROUND:Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers. METHODS:Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out. RESULTS:Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness. CONCLUSIONS:The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.

SUBMITTER: Soto-Rubio A

PROVIDER: S-EPMC7567384 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers.

Soto-Rubio Ana A Valero-Moreno Selene S Díaz José Luis JL Andreu Yolanda Y Pérez-Marín Marián M

PloS one 20201016 10

<h4>Background</h4>Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers.<h4>Methods</h4>Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regress ...[more]

PMID: 33064747

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Project description:BackgroundThe objective of the current study was to determine the best set of predictors of psychological disorders, regrets, health-related quality of life, and mental health function among bereaved caregivers of patients with cancer, thereby identifying promising targets for interventions to improve bereavement adjustment.MethodsCoping with Cancer is a longitudinal study of patients with advanced cancer and their informal caregivers who were enrolled from 2002 to 2008. The main outcome measure was bereavement adjustment of 245 caregivers (eg, depression, anxiety, and regrets) 6 months after the loss of the patient. The Structured Clinical Interview of the Diagnostic and Statistical Manual of Mental Disorders determined whether caregivers met the criteria for major depressive disorder or an anxiety disorder. Changes in health-related quality of life and mental health function from baseline to after the patient's death were assessed with the Medical Outcomes Study Short Form (SF-36).ResultsGreater than 50% of the caregivers reported regret about the cancer patient's end-of-life care; better patient quality of death (adjusted odds ratio, 0.77; 95% confidence interval, 0.67-0.88) reduced the risk of bereavement regret. The incidence of major depressive disorder or anxiety among the bereaved caregivers was 12.6% and was less likely for caregivers with better mental health before the loss of the patient (adjusted odds ratio, 0.03; 95% confidence interval, 0.004-0.25). Better patient quality of death also predicted improved caregiver health-related quality of life (adjusted standardized beta, .28; P < .001). The completion of a do-not-resuscitate order was found to be predictive of improved mental health from before the death of the patient to after the death (adjusted standardized beta, .29; P < .001).ConclusionsReducing caregiver distress, encouraging advance care planning by patients, and improving patients' quality of death appear to be promising targets of interventions to improve caregiver bereavement adjustment.

Project description:Institutionalization is an exceptional and temporary measure that occurs when there is a violation of rights; lasting until the family reintegration or, in the impossibility of this, the placement in a substitute family through adoption. Among the main reasons for institutionalization in Brazil are the financial difficulties, abandonment, domestic violence, drug addiction, homelessness of the responsible for the child, sexual abuse, and the loss of parents by death or imprisonment. Although children and adolescents have their rights assured when they are institutionalized, the care provided in these spaces does not include all their needs and demands, which may damage their affective-relational development. Maternal deprivation in the first years of life can be detrimental to the development of these children, if not provided by adequate substitute care. Therefore, to understand which place the institutionalized baby occupies in the imaginary of the social caregivers and, from this, how is established the relationship regarding the care, is of fundamental importance to assess and address the risk factors in child development at this stage of life and in situation of institutionalization. This is an exploratory and descriptive study, developed in a childcare institution, located in the city of São Paulo, Brazil, capable of accommodating up to 20 babies between 0 and 2 years old. Data collection was performed with nine employees, eight social caregivers and one general service assistant who work directly in the care of the institutionalized babies. Drawing-Story with Theme (DS-T) procedures were used. Qualitative analysis was based on Interpretative Phenomenological Analysis. The appreciation of the nine applied Drawing-Story procedures allowed the establishment of three discussion axes representations of baby, baby care, and early separation process. This study concluded that the difficulties that permeate the context of caregivers’ work are the high turnover of institutionalized children, as well as employees, the difficulty of dealing with processes of bonding and breaking bonds and no recognition of the profession. We highlight that the place that these babies occupy in the imaginary of these caregivers influences the bond they establish with the children hence the care offered to the babies. It is also noteworthy that these caregivers exhibited anguish and suffering from the reasons they believed led the children to be institutionalized.

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COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers.

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COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers.

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