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BMC Palliat Care ; 20(1): 83, 2021 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-34098905


BACKGROUND: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where 'silence as virtue' is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. METHODS: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. RESULTS: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. CONCLUSION: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients' and caregivers' psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a 'whole unit.' At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

Cuidadores , Neoplasias , China , Estudos Transversais , Humanos , Recém-Nascido , Neoplasias/terapia , Pesquisa Qualitativa
Support Care Cancer ; 29(3): 1683-1698, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32776164


OBJECTIVES: To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context. METHODS: This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment. RESULTS: Four hundred nineteen patient-caregiver dyads completed this survey. Patients' unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers' commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients' greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers' poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05). CONCLUSIONS: Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions.

Cuidadores/psicologia , Determinação de Necessidades de Cuidados de Saúde/normas , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Grupo com Ancestrais do Continente Asiático , China , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Inquéritos e Questionários
BMC Palliat Care ; 18(1): 68, 2019 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-31387575


BACKGROUND: To determine the validity, reliability and acceptability of the Mandarin Chinese version of the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv) for measuring problems and palliative care needs among patients with advanced cancer. METHODS: This was a validation study using a forward- and backward- translation procedure, a panel of experts and a cross-sectional study design. The Mandarin Chinese version of the PNPC-sv was translated by four independent translators. The translated Chinese version was further reviewed by an expert panel to identify its content validity. A pilot test was conducted in 10 advanced cancer patients to preliminarily assess the face validity, readability and clarity of the pre-final version of the PNPC-sv. 178 patients with advanced cancer, regardless of their gender and types of cancer diagnosis, were further recruited through a convenience sampling from three tertiary hospitals in China to assess the psychometric properties of the PNPC-sv Mandarin Chinese version. Content validity was measured using the content validity index (CVI). Construct validity was estimated via confirmatory factor analysis and the contrasted groups approach. Concurrent validity was identified by analysing the correlations between the EORTC Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) and the PNPC-sv. Reliability of the PNPC-sv was examined with the internal consistency reliability and item-to-total correlations. Several closed-ended and open-ended questions were designed to explore its acceptability. RESULTS: 174 patients completed the questionnaires. High content and face validity were determined after the two rounds of assessment with the expert panel and the patients. An excellent CVI of 1.0 was achieved and patients rated the PNPC-sv as a useful instrument for assessing their problems and needs (mean score = 7.99, 0-10 scale) and reported the items were not particularly sensitive and easy to understand. The majority of the fit indexes meet the critical criteria, with the Chi-square divided by degrees of freedom (x2/df) being 1.58 and 2.05, and the root mean squared error of approximation (RMSEA) being 0.06 and 0.07 for the problem part and need-for-care part, respectively. In relation to the contrasted groups analysis, it clearly discriminated the differences on the sub-scores of Activities of Daily Life (ADL), spiritual and psychological problems and needs between male and female patients; ADL, physical, social and financial problems and needs between age groups; and autonomic problems and needs between patients with different cancer stages. Statistically significant correlations (p < 0.05) were detected between the PNPC-sv and the EORTC QLQ-C30 in the majority of the sub-scores (positive correlations) and total scores (negative correlations). The Cronbach's alpha of the total scale was 0.88 and 0.91 for the problem part and need-for-care part, respectively. The Cronbach's alpha of the subscales were generally above 0.70. Item-to-total correlations were generally acceptable, with the majority of the values being above 0.40. The PNPC-sv questionnaire was reported to be convenient and easy to understand, and the average time for completing was 11 min. CONCLUSIONS: The Mandarin Chinese version of the PNPC-sv is a valid, reliable and user-friendly instrument for measuring problems and palliative care needs among patients with advanced cancer. Further research is needed to further examine its psychometric properties particular internal structure in a larger patient sample.

Cuidados Paliativos/normas , Psicometria/normas , Adulto , Idoso , China , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Psicometria/instrumentação , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários , Tradução , Estudos de Validação como Assunto
BMC Palliat Care ; 17(1): 96, 2018 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-30037346


BACKGROUND: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment. METHODS: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes. RESULTS: Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified  unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies. CONCLUSION: Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated  from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

Cuidadores/psicologia , Determinação de Necessidades de Cuidados de Saúde/normas , Neoplasias/terapia , Humanos , Neoplasias/psicologia , Assistência ao Paciente/métodos , Assistência ao Paciente/tendências , Prevalência , Inquéritos e Questionários
J Palliat Care ; 33(4): 215-241, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29774777


OBJECTIVES: This study aimed to obtain an overview of the current research status of palliative care in Mainland China and identify research directions for future studies by characterizing palliative care studies conducted among patients with any life-limiting illness in Mainland China and published in a peer-reviewed journal before November 2016. METHODS: A review guide with 7 categories was initially developed based on existing international palliative care definitions and guidelines through content analysis. Ten databases were used to identify relevant studies from the inception of online cataloging to November 2016. Studies conducted in Mainland China and their research topic that fell within one of the categories of the review guide were included for further analysis. Descriptive analysis was adopted to summarize the relevant findings. RESULTS: 54 studies found to be relevant were included for the analysis. Three studies on "palliative care education and training" (category 1) asserted that education and training programs were scant in Mainland China and that only 1 program had been devised within the health-care context of Shanghai. Five studies on "palliative care screening and timely identification" (category 2) highlighted the absence of early screening criteria or checklists and referral procedures for palliative care. Thirty-one studies on "palliative care needs assessment (n = 12/31) and implementation (n = 19/31)" (category 3) were identified, and various methodological flaws were observed in most of these included studies. Twelve studies on "advanced decision-making" (category 4) were identified, all of which focused on investigating the attitudes of patients with cancer, their families, and/or health-care professionals toward advanced decision-making only. The percentage of patients, family members, and health-care professionals who held positive attitudes toward advanced decision-making were varied and suboptimal, particularly for family members (51.4%-58.0%). Five studies on "caring for patients at the end of life" (category 5) were identified, and the experience of health-care professionals in caring for those patients was explored. No studies relating to "death and bereavement care" (Category 6) and "psychological support for palliative care providers" (Category 7) were identified. CONCLUSION: The current research status of palliative care in Mainland China remains at an early stage with minimal palliative care services used. Although several knowledge gaps were identified, the first step, which should be addressed, is assessing the palliative care needs. An appropriate and ongoing needs assessment could provide important information for constructing comprehensive education and training programs of palliative care, identifying prognostic factors of timely palliative care referral, and developing evidence-based and tailored palliative care services.

Pesquisa Biomédica/tendências , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , China , Feminino , Previsões , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Projetos de Pesquisa
J Clin Nurs ; 14(4): 510-7, 2005 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-15807759


AIM AND OBJECTIVE: To explore in depth the experiences of nurses' caring for SARS patients in Hong Kong. BACKGROUND: Severe Acute Respiratory Syndrome (SARS) dramatically demonstrates the global havoc that can be wreaked by a newly emerging infectious disease. The current literature either has a predominantly biomedical focus or deals with the psychological impact on healthcare workers. Published studies on the lived experience of nurses caring for SARS patients are currently lacking. DESIGN: A phenomenological design. METHODS: Using methods consistent with Husserl's philosophy, eight Registered Nurses working in three regional hospitals in Hong Kong were invited to participate in sharing their lived experience of caring for SARS patients and data were analysed using Colaizzi's approach. RESULTS: The three major themes explicated were: the various emotions experienced in caring for SARS patients, the concept of uncertainty and revisiting the 'taken for granted' features of nursing. CONCLUSION: These themes, when taken together, describe the essence of the voyage undertaken by nurses who cared for SARS patients during the outbreak. The findings of this study indicate that extensive and ongoing support is needed to prepare and enable nurses to care for SARS patients during a crisis and make it easier for nurses to deal with the various uncertainties. RELEVANCE TO CLINICAL PRACTICE: The essence of caring for SARS patients is highlighted in this study. The experience of caring for SARS patients prompts nurses to find meaning in their experience(s), and to develop knowledge and attitudes on how best to care for patients and prepare for a new crisis in the future. This paper considers a more in-depth understanding of the lived experience of nurses during the crisis and the relevance of this perspective for education and support of nurses.

Adaptação Psicológica , Atitude do Pessoal de Saúde , Doenças Transmissíveis Emergentes/enfermagem , Recursos Humanos de Enfermagem no Hospital/psicologia , Síndrome Respiratória Aguda Grave/enfermagem , Adulto , Doenças Transmissíveis Emergentes/epidemiologia , Doenças Transmissíveis Emergentes/psicologia , Surtos de Doenças/estatística & dados numéricos , Emoções , Empatia , Medo , Feminino , Frustração , Conhecimentos, Atitudes e Prática em Saúde , Hong Kong/epidemiologia , Humanos , Masculino , Narração , Papel do Profissional de Enfermagem , Relações Enfermeiro-Paciente , Pesquisa Metodológica em Enfermagem , Poder Psicológico , Pesquisa Qualitativa , Síndrome Respiratória Aguda Grave/epidemiologia , Síndrome Respiratória Aguda Grave/psicologia , Apoio Social , Incerteza