Palliative and Supportive Care最新文献

{"title":"Loneliness among cancer caregivers: A narrative review","authors":"T. Gray, D. Azizoddin, P. Nersesian","doi":"10.1017/S1478951519000804","DOIUrl":"https://doi.org/10.1017/S1478951519000804","url":null,"abstract":"Abstract Objective Providing care to a loved one with cancer places demands on caregivers that result in changes to their daily routines and disruptions to their social relationships that then contribute to loneliness. Though caregivers’ psychosocial challenges have been well studied, loneliness — a determinant of health — has not been well studied in this population. This narrative review sought to describe the current evidence on loneliness among caregivers of cancer patients. We aimed to (1) define loneliness, (2) describe its prevalence, (3) describe the association between loneliness and health outcomes, (4) describe risks and consequences of loneliness among cancer caregivers, (5) identify ways to assess loneliness, and (6) recommend strategies to mitigate loneliness in this unique population. Method We used evidence from articles listed in PubMed, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, book chapters, and reports. Articles were reviewed for the following inclusion criteria: (1) published in English, (2) caregivers of cancer patients, (3) loneliness as a study variable, and (4) peer-reviewed with no restriction on the timeframe of publication. Caregivers were defined as relatives, friends, or partners who provide most of the care and support for someone with cancer. Results Eighteen studies met inclusion criteria and were included in the analysis. Caregivers’ experiences of loneliness can contribute to negative effects on one's social, emotional, and physical well-being. Social support interventions may not be sufficient to address this problem. Existing recommendations to mitigate loneliness include cognitive and psychological reframing, one-on-one and group therapy, befriending, resilience training, and technology-based interventions. Significance of results Limited attention to loneliness in cancer caregivers poses a twofold problem that impacts patient and caregiver outcomes. Interventions are critically needed to address loneliness as a determinant of health in caregivers, given their pivotal role in providing care and impacting health outcomes for people with cancer.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"36 1","pages":"359 - 367"},"PeriodicalIF":0.0,"publicationDate":"2020-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85537319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of a multidisciplinary quality of life intervention on sleep quality in patients with advanced cancer receiving radiation therapy","authors":"Melanie T. Gentry, P. Atherton, M. Lapid, Preetha Sharone Rosen, S. Kung, J. Richardson, Shehzad K. Niazi, W. Bobo, M. Clark, T. Rummans","doi":"10.1017/S1478951519000750","DOIUrl":"https://doi.org/10.1017/S1478951519000750","url":null,"abstract":"Abstract Objectives Sleep disturbances are prevalent in cancer patients, especially those with advanced disease. There are few published intervention studies that address sleep issues in advanced cancer patients during the course of treatment. This study assesses the impact of a multidisciplinary quality of life (QOL) intervention on subjective sleep difficulties in patients with advanced cancer. Method This randomized trial investigated the comparative effects of a multidisciplinary QOL intervention (n = 54) vs. standard care (n = 63) on sleep quality in patients with advanced cancer receiving radiation therapy as a secondary endpoint. The intervention group attended six intervention sessions, while the standard care group received informational material only. Sleep quality was assessed using the Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS), administered at baseline and weeks 4 (post-intervention), 27, and 52. Results The intervention group had a statistically significant improvement in the PSQI total score and two components of sleep quality and daytime dysfunction than the control group at week 4. At week 27, although both groups showed improvements in sleep measures from baseline, there were no statistically significant differences between groups in any of the PSQI total and component scores, or ESS. At week 52, the intervention group used less sleep medication than control patients compared to baseline (p = 0.04) and had a lower ESS score (7.6 vs. 9.3, p = 0.03). Significance of results A multidisciplinary intervention to improve QOL can also improve sleep quality of advanced cancer patients undergoing radiation therapy. Those patients who completed the intervention also reported the use of less sleep medication.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"1 1","pages":"307 - 313"},"PeriodicalIF":0.0,"publicationDate":"2020-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75992924","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact of the caregiver burden on the effectiveness of a home-based palliative care program: A mediation analysis","authors":"Angela J. Pereira-Morales, Luis Enrique Valencia, Luis H. Rojas","doi":"10.1017/S1478951519000749","DOIUrl":"https://doi.org/10.1017/S1478951519000749","url":null,"abstract":"Abstract Objective The growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program. Method Sixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program. Results The association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program. Significance of results To our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"15 1","pages":"332 - 338"},"PeriodicalIF":0.0,"publicationDate":"2020-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89389158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Too much to do for death","authors":"Henry Bair","doi":"10.1017/S1478951519000634","DOIUrl":"https://doi.org/10.1017/S1478951519000634","url":null,"abstract":"","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"2 1","pages":"370 - 371"},"PeriodicalIF":0.0,"publicationDate":"2020-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"91176726","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"PAX volume 18 issue 3 Cover and Front matter","authors":"","doi":"10.1017/s1478951520000346","DOIUrl":"https://doi.org/10.1017/s1478951520000346","url":null,"abstract":"","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"10 1","pages":"f1 - f4"},"PeriodicalIF":0.0,"publicationDate":"2020-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87819418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Woman Mother Son_after","authors":"A. S. Daniel, Miguel Julião","doi":"10.1017/s1478951519001056","DOIUrl":"https://doi.org/10.1017/s1478951519001056","url":null,"abstract":"","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"77 1","pages":"372 - 373"},"PeriodicalIF":0.0,"publicationDate":"2020-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75170211","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Aromatherapy improves nausea, pain, and mood for patients receiving pediatric palliative care symptom-based consults: A pilot design trial","authors":"M. Weaver, Jacob E Robinson, C. Wichman","doi":"10.1017/S1478951519000555","DOIUrl":"https://doi.org/10.1017/S1478951519000555","url":null,"abstract":"Abstract Objective The role of aromatherapy in supportive symptom management for pediatric patients receiving palliative care has been underexplored. This pilot study aimed to measure the impact of aromatherapy using validated child-reported nausea, pain, and mood scales 5 minutes and 60 minutes after aromatherapy exposure. Methods The 3 intervention arms included use of a symptom-specific aromatherapy sachet scent involving deep breathing. The parallel default control arm (for those children with medical exclusion criteria to aromatherapy) included use of a visual imagery picture envelope and deep breathing. Symptom burden was sequentially assessed at 5 and 60 minutes using the Baxter Retching Faces scale for nausea, the Wong-Baker FACES scale for pain, and the Children's Anxiety and Pain Scale (CAPS) for anxious mood. Ninety children or adolescents (mean age 9.4 years) at a free-standing children's hospital in the United States were included in each arm (total n = 180). Results At 5 minutes, there was a mean improvement of 3/10 (standard deviation [SD] 2.21) on the nausea scale; 2.6/10 (SD 1.83) on the pain scale; and 1.6/5 (SD 0.93) on the mood scale for the aromatherapy cohort (p < 0.0001). Symptom burden remained improved at 60 minutes post-intervention (<0.0001). Visual imagery with deep breathing improved self-reports of symptoms but was not as consistently sustained at 60 minutes. Significance of results Aromatherapy represents an implementable supportive care intervention for pediatric patients receiving palliative care consults for symptom burden. The high number of children disqualified from the aromatherapy arm because of pulmonary or allergy indications warrants further attention to outcomes for additional breathing-based integrative modalities.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"14 1","pages":"158 - 163"},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81808371","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Adapting the Portuguese dignity question framework for adolescents: ages 10–18","authors":"Miguel Julião, B. Antunes, A. Santos, Maria Ana Sobral, Sara Albuquerque, Filipa Fareleira, Daniela Runa, Paulo Faria de Sousa, P. Chaves, Célia Gonçalves, Duarte Soares, H. Chochinov","doi":"10.1017/S1478951519000798","DOIUrl":"https://doi.org/10.1017/S1478951519000798","url":null,"abstract":"Abstract Objective Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18). Method Five stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic. Results DT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others. Significance of results We developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"77 1","pages":"199 - 205"},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72861639","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Validation of the caregiver oncology quality of life questionnaire in Portuguese caregivers of myeloma patients","authors":"M. G. Pereira, Margarida Vilaça, M. Pereira, Rosário Bacalhau, S. Monteiro, Bruna Fernandes, S. Faria, Gabriela Ferreira","doi":"10.1017/S1478951519000476","DOIUrl":"https://doi.org/10.1017/S1478951519000476","url":null,"abstract":"Abstract Objective Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view. Method This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support. Result The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90). Significance of results The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"57 1","pages":"178 - 185"},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82095393","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A commentary on: Pirola et al. (2019) “Validation of the Brazilian version of the Shame and Stigma Scale (SSS-Br) for patients with head and neck cancers”","authors":"Susana S A Miguel, S. Caldeira","doi":"10.1017/S1478951519000725","DOIUrl":"https://doi.org/10.1017/S1478951519000725","url":null,"abstract":"Dear Editor, We are writing this letter concerning the paper “Validation of the Brazilian version of the Shame and Stigma Scale (SSS-Br) for patients with head and neck cancers” (Pirola et al., 2019) recently published ahead of print in Palliative and Supportive Care. This paper reports a methodological study aiming to validate a scale in a sample of head and neck cancer patients. The title was particularly interesting for us. First, because our research is focused on the validation of nursing diagnoses in the same patients. Second, because the diagnoses we are validating also concern subjective phenomena, but different from shame and stigma. We are studying “disturbed body image” and “situational low self-esteem”. Tools are very important in facilitating the assessment and precise diagnosis in healthcare. As so, validation studies are more than welcome to provide valid and reliable tools. But, the authors (Pirola et al., 2019) seem to have difficulties in totally assessing some scale’s items and domains due to subjectivity when saying that “statements that may be interpreted in a broad manner by patients.”We totally agree with authors and congratulate the rigor and clarity in describing and interpreting the results. This is a common feeling when studying these patients and when studying subjective topics. This was critical when we selected the method to validate nursing diagnoses in this patients. We are using mixed-method research that merges quantitative and qualitative procedures and is widely known to be adequate to study subjectivity: Q methodology (Akhtar-Danesh et al., 2008; Simons, 2013; Watts and Stenner, 2013; Ramlo, 2015). A defining principle is that the different points of vieware amenable to systematic analysis (Simons, 2013). Qmethodology differs from qualitative research because it analyses data using correlation and factor analysis, which is more comparable to quantitative methods (Simons, 2013). Thismethod is seen to be as adequate for research about subjective concepts such as values, beliefs, and attitudes, and can be assessed objectively and scientifically to generate hypotheses or develop theories (Lee et al., 2008). The Q methodology has been used in nursing care, with patients and their families, in studying perspectives on the experiences of being cared, attitudes, perceptions, feelings, and values, aiming to effectively explore and compare the subjectivity and capture the human experience (Simons, 2013; Ho and Gross, 2015). Head and neck cancer patients are often excluded from research due to impaired verbal communication. We congratulate Pirola et al. (2019) for including these patients in this study concerning such important phenomena. The inclusive nature of the research method could be positive in reducing the stigma and shame for not being select for research, as sometimes not being able to verbally communicate or having impaired communication is an exclusion criterion in studies with head and neck patients (Barich","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"22 1","pages":"250 - 251"},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76286503","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}