RESUMO
PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I. METHODS: Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018-2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals' (HCPs') written documentation of the CSNAT-I, and from semi-structured interviews with HCPs. RESULTS: The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15-27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: "knowing what to expect in the future," "dealing with feelings and worries," and "understanding the illness." These domains together with "knowing who to contact if concerned" and "talking to the patient about the illness" were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue. CONCLUSION: The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs' overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive. ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Cuidadores , Dinamarca , Humanos , Avaliação das NecessidadesRESUMO
PURPOSE: Quality of life and symptomatology in patients with malignancies admitted to comprehensive cancer centres are rarely investigated. Thus, this study aimed to investigate symptomatology and health-related quality of life of inpatients with cancer. METHODS: A prospective, cross-sectional study was carried out on two occasions 5 weeks apart in haematology and oncology departments at a comprehensive cancer centre. Assessment included demographic data, WHO performance status (PS), EORTC QLQ-C30 and pain scales of brief pain inventory. Comparisons were analysed using Wilcoxon two-sample test, rank tests and Fisher's exact test. RESULTS: One hundred twenty-four patients were analysed, mean age=59 years (SD=13.7), 42% admitted to haematological department; lung cancer was the most frequent diagnosis (15%). Low health-related quality of life and severe symptom burden, especially fatigue and appetite loss, were observed among the inpatients. In addition, role and social functions appeared to be more impaired in haematology patients than in those admitted to oncology (P=0.0372 and 0.0167, respectively). On the other hand, pain and constipation were more severely affected in oncology patients (P=0.0194 and 0.0064, respectively). CONCLUSIONS: Patients in the wards of haematology and oncology had pronounced symptomatology and low quality of life. A more systematic focus on the amelioration of problems with functioning and symptoms among inpatients with malignant diseases is warranted.
Assuntos
Institutos de Câncer , Neoplasias/fisiopatologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Dinamarca , Fadiga/etiologia , Feminino , Hospitalização , Humanos , Neoplasias Pulmonares/fisiopatologia , Neoplasias Pulmonares/psicologia , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Dor/etiologia , Estudos Prospectivos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark. METHODS: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up. RESULTS: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes. CONCLUSION: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals. TRIAL REGISTRATION NUMBER: NCT03466580.