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Family caregivers play an important role in advanced disease patient care. The goal of this study was to characterize the family caregiver in palliative care, evaluating the circumstances and consequences of care and preparation for the loss of the loved one. This is a quantitative, prospective and longitudinal study. The sample consisted of 60 family caregivers, mostly women, married with an average age of 44.53 years. Most caregivers cohabit with the patient, and they spend the greater part of their day caring for the patient and a significant part quit their jobs or reduce working hours to be with the patient. The highest burden caregivers also showed higher levels of anxiety, depression, somatization and less social support. The most dysfunctional family caregivers reported little social support and those caregivers who were less prepared for the death of the patient showed more symptoms of peritraumatic dissociative experience. Most caregivers were aware of the severity of the illness of their family member and the proximity of death, and considered that the patient was very well taken care of in the palliative care service.

Abstract

Resumo: O luto pode ser definido como um conjunto de reações emocionais, físicas, comportamentais e sociais que surgem como resposta a uma perda significativa. O objetivo do estudo foi traduzir, adaptar e validar para a população brasileira o instrumento de avaliação do luto prolongado PG-13. A amostra foi constituída por 115 familiares enlutados que preencheram um questionário on-line. Desses familiares, 76,5% eram do sexo feminino, 50,4% casados, idade média de 41,32 anos, e com tempo médio de luto de 29,29 meses. A incidência de luto prolongado foi de 10,43%. Todos os itens do modelo reestruturado do PG-13 apresentaram pesos fatoriais superiores a 0,5, eram estatisticamente significativos e com confiabilidades individuais adequadas. A consistência interna foi de 0,940 e a validade convergente avaliada pela VEM foi de 0,593. É possível concluir que o PG-13 apresenta confiabilidade individual, de construto e validade convergente, podendo assim contribuir para o diagnóstico do luto prolongado.Palavras-chave: estudos de validação; psicometria; luto; luto prolongado; PG-13. ADAPTATION AND VALIDATION FOR THE BRAZILIAN POPULATION TO ASSESS-MENT INSTRUMENT PROLONGED GRIEF DISORDER -PG-13Abstract: Grief may be defined as a set of emotional, physical, behavioral, and social reactions that appear in response to a significant loss. The study aims at translating, adapting and validating, for the Brazilian population, the assessment tool of prolonged grief PG-13. The sample consisted of 115 bereaved family members who completed a questionnaire online. Of these families, 76,5% were female, 50,4% were married, mean age of 41,32 years and a mean time of grief 29,29 months. The incidence of prolonged grief was 10,43%. All items on the restructured model PG-13 showed higher factor weights 0,5, they were statistically significant and had appropriate individual reliabilities. The Cronbach's alpha was 0,940 and the convergent validity assessed by VEM was 0,593. Therefore, we conclude that the PG-13 has individual and construct reliability and convergent validity that could also contribute to the diagnosis of prolonged grief.

Caregivers are particularly vulnerable to experience intense levels of distress following the loss. The aim of this prospective pilot study is to determine the incidence of prolonged grief disorder symptoms among caregivers. A total of 73 bereaved families responded to the Prolonged Grief Disorder Evaluation Instrument (PG-13) at 6 and 12 months following their loss. The incidence of prolonged grief disorder at the first assessment was 28.8%, and it decreased to 15.1% at the second assessment. The prevalence of prolonged grief disorder declined significantly over time (p = .041). In the second evaluation, six bereaved individuals continued to meet criteria for a diagnosis of prolonged grief disorder, 15 remitted, and 4 new (incident) cases emerged. The important differences in values that occur after 12 months suggest time is important in distinguishing between those at risk for persistent distress and those whose grief symptomatology will decrease with time.

The aim of the study is to identify the mediators of complicated grief in a Portuguese sample of caregivers. Grief mediators were prospectively evaluated using a list of risk factors completed by the palliative care team members, during the predeath and bereavement period. More than 6 months after the death, we applied PG-13 to diagnose prolonged grief disorder (PGD). The sample was composed of 64 family caregivers. Factors associated with PGD were insecure and dependent relationship, unresolved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are relevant, but we must consider the reciprocal influence among factors, as well as their impact on specific symptoms.

This study aims to validate the Portuguese population the instrument PG-13 (Prolonged Grief Disorder), created by Prigerson et al. (2007) for diagnosis of prolonged grief, whose criteria are: the experience of loss generating intense longing and yearning for the deceased that extends for a period exceeding six months; emotional, cognitive and behavioral symptoms, dysfunction and meaningful life social and occupational functioning. The population includes 102 caregivers of patients accompanied by Support Team Palliative Care, Hospital Santa Maria. The participants are mostly female (82.4%) with mean age of 58.87 (SD: 13.41) and range between 15 and 84 years. Most respondents are widowed (62.1%), and 93.2% of these people are mourning the loss of a spouse. The second largest group of subjects corresponds to married persons (29.5%) who lost one of the parental figures (64.3%) and brothers (14.3%). Deceased family members have an average age of 68.68 (SD: 11.50), with amplitude between 27 and 89 years. The gender distribution in the group of deceased patients are 57.8% male and 42.2 % female. The internal consistency in the instrument is considered very good (a=.932). We found that 22.5% of the population manifests symptoms of prolonged grief. There were no significant differences in terms of socio-demographic variables or in the circumstances of illness and death. Prolonged Grief Disorder is more prevalent in female subjects (91.3%), widowed (68.2%) and in cases where the deceased was being the spouse (65.2%).

The sundry circumstances that affect end-of-life care can have a determining role in the result of this experience, particularly in psychological morbidity levels before and after bereavement. The aim of this study is to describe the prevalence of psychopathological symptoms and overburden among family caregivers in palliative care and to identify the circumstances associated with care provision. An attempt was made to evaluate the progress of psychopathological symptoms, identifying circumstantial factors that can interfere in acute grief. The sample consisted of 75 Portuguese caregivers, mostly women and patients' daughters. The results show that caregivers more involved with patient care bear a greater burden and are more likely to manifest psychopathological symptoms, which persist in acute grief. Moreover, the existence of peritraumatic symptoms seem to contribute significantly to the overall state of distress in acute grief. Social support has a protective effect in the different symptomatologic situations and are closely related to family dynamics. These results suggest the possibility of early identification of the most vulnerable caregivers and the adverse circumstances that affect them.