Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 17 de 17
Filtrar
1.
BMC Public Health ; 24(1): 670, 2024 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-38429719

RESUMO

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.


Assuntos
Cuidadores , Capital Social , Humanos , Grupos de Autoajuda , Apoio Social , Serviço Social
2.
JAMA Netw Open ; 7(2): e2356522, 2024 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-38386323

RESUMO

Importance: Psychoeducational interventions (PEIs), which provide both information and emotional and psychosocial support, may address the unmet needs of the caregivers of adolescent and young adult patients with cancer. Objective: To explore the effects of an instant messaging-delivered PEI on anxiety, depression, quality of life (QOL), and coping and determine whether the intervention reduces caregivers' unmet needs. Design, Setting, and Participants: This randomized clinical trial using an intention-to-treat protocol was conducted from April 1 to September 14, 2022, in a tertiary cancer hospital in China and included caregivers of patients diagnosed with cancer at age 15 to 39 years recruited using convenience sampling. Intervention: Caregivers were allocated 1:1 using a randomized block scheme to the intervention or control group. The intervention group received a 5-week PEI and usual care, whereas the control group received only usual care. The PEI was delivered through articles and calls through an instant messaging application. Main Outcomes and Measures: The primary outcomes were changes in the levels of caregivers' anxiety and depression, measured using the 7-Item Generalized Anxiety Disorder Scale and the Patient Health Questionnaire 9, respectively. The secondary outcomes were changes in the levels of caregivers' QOL, coping, and unmet needs. Results: Of the 160 participants, 92 (57.5%) were male; mean (SD) age was 40.27 (8.33) years. Compared with the control group, the intervention group had significantly greater reduction in severity of anxiety (B = -3.231; 95% CI, -4.746 to -1.716; P < .001) and depression (B = -3.253; 95% CI, -5.052 to -1.454; P < .001), smaller reduction in QOL (B = 13.574; 95% CI, 0.488-26.661; P = .04), and greater reduction in unmet needs (B = -12.136; 95% CI, -18.307 to -5.965; P < .001) after the intervention. Twelve weeks after baseline, the intervention group demonstrated a significantly greater reduction only in severity of anxiety (B = -1.890; 95% CI, -3.382 to -0.397; P = .01). Conclusions and Relevance: In this randomized clinical trial of a mobile instant messaging-delivered PEI, caregivers' unmet needs, anxiety, and depression decreased significantly and QOL declined at a significantly slower rate immediately after the intervention in the intervention group compared with the control group. A sustained effect on anxiety was observed 12 weeks after baseline. Trial Registration: Chinese Clinical Trial Registry identifier: ChiCTR2200055951.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Adulto Jovem , Humanos , Masculino , Adulto , Feminino , Cuidadores , Sistemas de Apoio Psicossocial , Neoplasias/terapia , Ansiedade/terapia
3.
Nurs Ethics ; : 9697330231222595, 2023 Dec 28.
Artigo em Inglês | MEDLINE | ID: mdl-38155364

RESUMO

BACKGROUND: Caring practice begins with awareness of the suffering of patients in a given context. Understanding the interrelationship between the perceived ethical climate of the clinical environment and the ethical sensitivity and caring efficacy of nurses is crucial for strengthening the caring competency of nurses. RESEARCH AIM: This study aimed to examine the associations between the ethical climate of the clinical environment and the ethical sensitivity and caring efficacy of nurses and to investigate the mediating effect of ethical sensitivity on the association between ethical climate and caring efficacy. RESEARCH DESIGN: This was a quantitative study with a cross-sectional descriptive correlational design. The participants completed an online survey that measured the ethical climate, ethical sensitivity and caring efficacy using the Hospital Ethical Climate Survey, Moral Sensitivity Questionnaire-Revised and Caring Efficacy Scale, respectively. PARTICIPANTS AND RESEARCH CONTEXT: The study recruited 293 nurses from two general hospitals that provided acute in-patient and extended care in Hong Kong. ETHICAL CONSIDERATIONS: Ethical approval was obtained from the ethics committee of the university and the hospitals involved. Written consent was obtained from the participants. RESULTS: Ethical climate was associated with caring efficacy (ß = 0.340, p < .001) and ethical sensitivity (ß = 0.197, p < .001). After adjusting for ethical climate, ethical sensitivity was associated with caring efficacy (ß = 0.860, p < .001). Ethical sensitivity showed a significant mediating effect on the association between ethical climate and caring efficacy (indirect effect = 0.169, 95% confidence interval: 0.097 to 0.261), which accounted for 50% of the total effect. CONCLUSIONS: The study reveals the complex and interwoven relationship between contextual and personal factors that affect nurses' caring efficacy from an ethical perspective. It provides insights into the significant roles of ethical climate and ethical sensitivity in strengthening caring efficacy. The results suggest theoretical and clinical implications for professionalisation.

5.
Palliat Med ; 37(8): 1168-1182, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37395316

RESUMO

BACKGROUND: Cancer-related fatigue is a complex multidimensional concept. However, little is known about the experience of cancer-related fatigue in people with advanced lung cancer. How they emotionally react to and cope with the experience of cancer-related fatigue according to cultural influences has not been extensively explored. AIM: To explore the experience of cancer-related fatigue, its impacts and emotional reactions to and coping strategies for cancer-related fatigue amongst people with advanced lung cancer in China. DESIGN: This was a cross-sectional, descriptive qualitative study with face-to-face semi-structured interviews. Data were analysed using content analysis. SETTING/PARTICIPANTS: Twenty-one people with advanced lung cancer who experienced cancer-related fatigue were recruited in a hospital setting. RESULTS: Four themes were identified: multifaceted experiences of cancer-related fatigue, impacts of cancer-related fatigue, negative perceptions of cancer-related fatigue and avoiding cancer-related fatigue. The multifaceted experience of cancer-related fatigue had physical, psychological and social impacts along the cancer trajectory. Informants regarded it as a sign of a 'bad ending', searched for root causes and had negative attitudes towards role changes. Avoiding coping strategies included not discussing cancer-related fatigue, refusing encouragement and support, hiding feelings, withdrawing from social life and attempting to control cancer-related fatigue. CONCLUSION: The findings provide insights into the lack of flexibility of people with advanced lung cancer to adapt to the multidimensional experience of cancer-related fatigue. The reactions and coping towards cancer-related fatigue are profoundly influenced by Chinese culture. Developing psychological interventions based on the cultural background are highly recommended to cultivate the ability to cope flexibly with stressful events and live a meaningful cancer life.


Assuntos
Adaptação Psicológica , Neoplasias Pulmonares , Humanos , Estudos Transversais , Pesquisa Qualitativa , Neoplasias Pulmonares/complicações , Fadiga/etiologia
6.
Asia Pac J Oncol Nurs ; 10(8): 100262, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37497154

RESUMO

Objective: This study aimed to examine the reliability and validity of the Chinese version of the Acceptance and Action Questionnaire for Cancer (C-AAQ-Cancer) in patients with advanced lung cancer. Methods: In Phase I, the AAQ-Cancer was translated from English to Chinese. In Phase II, an expert panel was invited to examine the content validity of the translated instrument, and pilot testing was performed. In Phase III, a total of 200 patients with advanced lung cancer from a university-affiliated hospital in central China were recruited to test the construct validity of the translated AAQ-Cancer using exploratory factor analysis, and reliability was assessed based on internal consistency and test-retest reliability. Results: The semantic equivalence and content validity index of the C-AAQ-Cancer were satisfactory. Exploratory factor analysis indicated that the C-AAQ-Cancer contained the following five subscales: cancer concerns, blunting, blame, distancing, and behavioral disengagement. These subscales explain 68.28% of the total variance. The Cronbach's α coefficient of the scale was 0.87, and the test-retest reliability was 0.839. Conclusions: This study evaluated the psychometric properties of the C-AAQ-Cancer. The findings support the reliability and validity of this instrument in evaluating experiential avoidance or acceptance levels in patients with advanced lung cancer.

7.
PLoS One ; 18(6): e0287510, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37352190

RESUMO

Financial hardship is a common challenge among patients with kidney failure and may have negative health consequences. Therefore, financial status is regarded as an important determinant of health, and its impact needs to be investigated. This cross-sectional study aimed to identify the differences in patient-reported and clinical outcomes among kidney failure patients with different financial status. A total of 354 patients with kidney failure were recruited from March to June 2017 at two hospitals in Hong Kong. The Dialysis Symptoms Index and Kidney Disease Quality of Life-36 were used to evaluate patient-reported outcomes. Clinical outcomes were retrieved from medical records and assessed using the Karnofsky Performance Scale (functional status) and Charlson Comorbidity Index (comorbidity level). Patients were stratified using two dichotomised variables, employment status and income level, and their outcomes were compared using independent sample t-tests and Mann-Whitney U-tests. In this sample, the employment rate was 17.8% and the poverty rate was 61.2%. Compared with other patients, increased distress of specific symptoms and higher healthcare utilization, in terms of more emergency room visits and longer hospital stays, were found in patients with poorer financial status. Low-income patients reported a decreased mental quality of life. Financially underprivileged patients experienced health inequity in terms of impaired outcomes. Attention needs to be paid to these patients by providing financial assessments and interventions. Additional research is warranted to confirm these findings and understand the experience of financial hardship and health equity.


Assuntos
Qualidade de Vida , Insuficiência Renal , Humanos , Estresse Financeiro , Estudos Transversais , Diálise Renal , Iniquidades em Saúde
8.
J Clin Nurs ; 32(17-18): 6179-6195, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37149735

RESUMO

AIMS AND OBJECTIVES: To map and synthesise the literature on loneliness at end-of-life and identify key knowledge gaps in loneliness research. BACKGROUND: Declined health conditions, reduced social engagement, loss of social roles, and fear of death may lead to loneliness at end-of-life. However, systematic information about loneliness at end-of-life is scant. METHODS: This scoping review followed the methodology proposed by Arksey and O'Malley. Nine electronic databases were searched from January 2001 to July 2022. Studies about loneliness at end-of-life were included. Two review authors independently screened and selected relevant studies and performed the data charting. The PAGER framework was employed to collate, summarise and report the results. The PRISMA-ScR checklist was included. RESULTS: A total of 23 studies were included in this review (12 qualitative, 10 quantitative, and one mixed-methods design). There was not reliable data about the prevalence of loneliness among adults at end-of-life internationally. Three or 20-item UCLA loneliness scale was frequently used to measure loneliness. Factors predisposed adults at end-of-life to loneliness included passive and active withdrawal from social networks, inability to share emotions and to be understood, and inadequate support on spirituality. Four strategies were identified to alleviate loneliness, yet none have been substantiated in clinical trials. Interventions facilitating spirituality, social interactions and connectedness seem effective in alleviating loneliness. CONCLUSIONS: This is the first scoping review on loneliness at end-of-life, synthesising evidence from qualitative, quantitative, and mixed-methods studies. Loneliness among adults at end-of-life is under-investigated and there is a prominent need to address existential loneliness at end-of-life. RELEVANCE TO CLINICAL PRACTICE: All nurses should proactively assess loneliness or perceived social isolation for clients with life-limiting conditions, regardless of social networks. Collaborative efforts (e.g., medical-social collaborations) to promote self-worthiness, social engagement and connectedness with significant others and social networks are needed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.


Assuntos
Solidão , Isolamento Social , Adulto , Humanos , Solidão/psicologia , Isolamento Social/psicologia , Emoções , Espiritualidade , Morte
9.
Asia Pac J Oncol Nurs ; 9(8): 100102, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36092683

RESUMO

Objective: The present study aimed to examine the feasibility and preliminary effects of Acceptance and Commitment Therapy (ACT) on fatigue interference and health-related quality of life in patients with advanced lung cancer. Methods: In a single-blinded, parallel-group randomized controlled trial, 40 patients with advanced lung cancer were randomized to either the intervention group, which received the four-session individual ACT in 4 weeks, or the control group, which received usual care. The outcomes were evaluated at baseline and one week postintervention. Results: Intervention feasibility and acceptability were established with a high attendance rate of 88.75% and a high retention rate of 75%. Approximately 95% of the participants reported satisfaction with the intervention. Despite the insignificant effects on fatigue interference, statistically significant interactions effects of ACT for health-related quality of life (P â€‹= â€‹0.001), cancer-related fatigue (P â€‹< â€‹0.001), depressive symptoms (P â€‹< â€‹0.001), anxiety (P â€‹< â€‹0.001), and distress (P â€‹= â€‹0.003) were noted. Conclusions: This pilot trial supports the feasibility and acceptability of conducting ACT for patients with advanced lung cancer. The findings show the potential positive effects of ACT on health-related quality of life. Future studies with full-scale samples are recommended to evaluate the long-term effects of ACT on fatigue interference.

10.
Int J Nurs Stud ; 133: 104317, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35850058

RESUMO

BACKGROUND: Fatigue, sleep disturbance, and depression are frequent concurrent symptoms in patients with breast cancer. Exercise is a promising strategy for symptom management, but the effect of dance as an exercise modality for managing the fatigue-sleep disturbance-depression symptom cluster has not been evaluated yet. OBJECTIVES: This study examined the effects of a 16-week dance program on reducing symptoms and improving the quality of life of patients with breast cancer who underwent adjuvant chemotherapy. METHODS: A prospective, assessor-blinded, two-arm randomized controlled design was used. Adult female patients with breast cancer who were scheduled for adjuvant chemotherapy were recruited from two university-affiliated hospitals in a city in northwest China. Participants in the dance group received six sessions of hospital-based dance instruction and 16 weeks of home-based practice. The dance intervention was culturally adapted for the Chinese population. The control group received general health consultation. Outcomes including fatigue, sleep disturbance, depression, and quality of life were evaluated at baseline and after the third and sixth cycles of chemotherapy. The intention-to-treat principle and a generalized estimating equation were used to analyze data. RESULTS: A total of 279 individuals were assessed for eligibility, and 176 eligible participants were successfully recruited. The majority of the participants (n = 140, 79.6%) were diagnosed with stages I-II breast cancer and had undergone mastectomy (n = 155, 88.1%). The baseline characteristics were similar between the two groups. Participants in the intervention group reported less severe fatigue, sleep disturbance, and depression. In addition, a lower incidence of the symptom cluster (P = 0.003) and an increase in quality of life (P = 0.001) were found in the intervention group compared with the control group at week 17. CONCLUSIONS: A culturally specific dance intervention is a promising method for managing the fatigue-sleep disturbance-depression symptom cluster and promoting the quality of life in Chinese women with breast cancer receiving adjuvant chemotherapy. Given its acceptability and practicality, this program may be incorporated in routine cancer care.


Assuntos
Neoplasias da Mama , Transtornos do Sono-Vigília , Adulto , Neoplasias da Mama/complicações , Neoplasias da Mama/tratamento farmacológico , Depressão/etiologia , Depressão/terapia , Fadiga/etiologia , Feminino , Humanos , Mastectomia , Estudos Prospectivos , Qualidade de Vida , Sono , Transtornos do Sono-Vigília/terapia , Síndrome
11.
BMJ Open ; 12(6): e063691, 2022 06 17.
Artigo em Inglês | MEDLINE | ID: mdl-35715187

RESUMO

INTRODUCTION: Many family caregivers experience significant burdens, especially those who take care of patients with chronic organ failure. Although the social welfare system offers some material assistance, a more sustainable approach to supporting caregivers is warranted. This study aims to explore the social capital (ie, the internal strengths of a community that facilitate different social roles) available for these family caregivers. METHODS AND ANALYSIS: A participatory design based on Trochim's concept mapping framework will be used in this study. A total of 119 participants, including patients, family caregivers, professionals and other community members, will be recruited from the community. The study will be divided into three phases. In Phase I, qualitative methods will be used to prepare and generate statements. Participants will be asked to share their views on social capital for family caregivers through interviews. In Phase II, quantitative methods will be used to arrange these statements into a concept map, and participants will be asked to complete a questionnaire to prioritise the statements. Statistical methods will be used to create a map based on the responses. In Phase III, the concept map will be used to formulate action plans. The findings will be presented to the public to produce recommendations for social policy. ETHICS AND DISSEMINATION: This study was approved by The Chinese University of Hong Kong Survey and Behavioural Research Ethics Committee (Reference No.: SBRE-20-714). Informed consent will be obtained from all participants. This study will reveal which forms of social capital can be mobilised to support family caregivers of patients with chronic organ failure. Recommendations on policies to improve the caregiving experience, strengthen social capital and enhance social care will be produced. Findings will be disseminated through academic conferences and journals, as well as local media to create a greater social impact. TRIAL REGISTRATION NUMBER: ChiCTR2100044171.


Assuntos
Cuidadores , Capital Social , Humanos , Apoio Social , Inquéritos e Questionários
12.
Artigo em Inglês | MEDLINE | ID: mdl-34574463

RESUMO

BACKGROUND: Many patients on maintenance dialysis experience financial hardship. Existing studies are mainly cost analyses that quantify financial hardship in monetary terms, but an evaluation of its impact is also warranted. This review aims to explore the definition of financial hardship and its relationship with symptom burden among patients on dialysis. METHODS: A literature search was conducted in November 2020, using six electronic databases. Studies published in English that examined the associations between financial hardship and symptom burden were selected. Two reviewers independently extracted data and appraised the studies by using the JBI Critical Appraisal Checklists. RESULTS: Fifty cross-sectional and seven longitudinal studies were identified. Studies used income level, employment status, healthcare funding, and financial status to evaluate financial hardship. While relationships between decreased income, unemployment, and overall symptom burden were identified, evidence suggested that several symptoms, including depression, fatigue, pain, and sexual dysfunction, were more likely to be associated with changes in financial status. CONCLUSION: Our findings suggest that poor financial status may have a negative effect on physical and psychological well-being. However, a clear definition of financial hardship is warranted. Improving this assessment among patients on dialysis may prompt early interventions and minimize the negative impact of financial hardship.


Assuntos
Estresse Financeiro , Diálise Renal , Estudos Transversais , Emprego , Humanos , Desemprego
13.
Nurs Res ; 70(1): 34-43, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32991531

RESUMO

BACKGROUND: Patients with end-stage renal disease receiving dialysis experience a significant symptom burden. Identifying factors associated with this burden may improve symptom management. However, specific evidence about patients' experiences is lacking. OBJECTIVES: The aim of this study was to explore factors that are associated with patients' symptom experiences. METHODS: The convergent parallel mixed methods design was used. In the quantitative component, the Dialysis Symptom Index was used to assess the symptom burden of 271 participants to examine its associations with patient characteristics using correlation coefficients and multivariate regression analyses. In the qualitative component, associated factors reported by 10 participants were identified through semistructured interviews using content analysis. Assessments were conducted at enrollment, 6 months, and 12 months. After separate data analyses, findings were integrated using side-by-side comparison and joint display. RESULTS: Several significant associations were identified between patient characteristics and symptom burden, and the participants described four categories of factors (i.e., treatment related, pathophysiological, situational, dietary) associated with a higher symptom burden during their interviews. Across both components of this study, three factors were consistent (i.e., employment, hyperphosphatemia, anemia). Participants described several factors not reported previously. DISCUSSION: This study explored subjective and objective factors influencing the symptom experiences of patients with end-stage renal disease using a mixed methods design. These risk factors can be used to identify high-risk patients. Our findings suggest that participants relied on laboratory results and treatments to explain their symptom experiences. These findings suggest that assessment of both subjective and objective factors is needed to explore patients' symptom experiences.


Assuntos
Fadiga/fisiopatologia , Falência Renal Crônica/fisiopatologia , Falência Renal Crônica/terapia , Satisfação do Paciente , Diálise Renal/efeitos adversos , Diálise Renal/psicologia , Avaliação de Sintomas/métodos , Idoso , Fadiga/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença
14.
J Adv Nurs ; 77(3): 1391-1402, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33249651

RESUMO

AIM: To understand the storied experiences of accessing symptom management services of patients with end-stage kidney disease (ESKD) who are receiving maintenance dialysis. DESIGN: Narrative inquiry. METHODS: Ten patients with ESKD who were receiving dialysis were recruited at two regional hospitals in Hong Kong and interviewed three times each between July 2017-July 2018 to capture their narratives. The data were analysed using the narrative inquiry approach from the perspective of Levesque's framework of access to care. RESULTS: Five themes emerged from the participants' narratives. The first theme illustrated access to care as a process by which symptom management needs were met. However, clinicians occasionally identified patients based on their diseases instead of their needs and this process was affected differently by interpersonal and system factors. The themes 'building trust' and 'facilitating communication' described interpersonal factors that were essential to maintaining a constructive patient-clinician partnership. The themes 'balancing efficiency' and 'navigating fragmented system' described system-related factors. CONCLUSIONS: This study identified the factors that influenced the delivery and/or reception of symptom management services for patients with ESKD who were receiving dialysis. The results suggest that healthcare services should be streamlined based on patients' needs and that this process should address the important elements of trust and communication. IMPACT: The study's results suggest potential improvements to symptom management services that would enable patients' needs to be addressed in a timely and humanistic manner.


Assuntos
Falência Renal Crônica , Comunicação , Hong Kong , Humanos , Falência Renal Crônica/terapia , Narração , Pesquisa Qualitativa , Diálise Renal
15.
J Clin Nurs ; 29(13-14): 2589-2601, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32279368

RESUMO

AIMS AND OBJECTIVES: To explore the experience of multiple concurrent symptoms over time and their impact on daily living in patients with end-stage renal disease undergoing dialysis. BACKGROUND: Patients undergoing dialysis experienced multiple concurrent symptoms because of the disease and treatment. Evidence suggests that these symptoms cluster around and have a significant impact on quality of life. However, the experience of this impact remained not clear. DESIGN: A longitudinal descriptive qualitative study. METHODS: Ten patients were purposely selected from the cohort of a longitudinal quantitative study in Hong Kong. A total of 28 face-to-face semi-structured interviews were conducted between July 2017 and July 2018. Interviews were audiotaped, transcribed and analysed using a thematic analysis approach. Findings were reported following the COREQ checklist. RESULTS: Four themes emerged from the data. The first theme "complex symptom experience" described a dynamic pattern of symptoms among patients. Although patients were unaware of the relationships among symptoms, a cluster of tiredness, breathlessness, dizziness and sleep disturbance was identified in the narratives of individual symptoms. The report of symptom experience and its change revealed a unique pattern of symptom perception. The three other themes illustrated the impact of multiple concurrent symptoms on daily living, namely "decreased physical functioning," "changes in social functioning" and "diet and fluid restrictions." CONCLUSIONS: Patients perceived dynamic and complex symptom experiences. This perception appears to be modulated by a number of factors. In addition, these experiences had negative and positive effects on patients' daily living. RELEVANCE TO CLINICAL PRACTICE: Patients perceived unique impact of symptoms on daily living. Therefore, a nurse-led person-centred approach of care is warranted. In addition to routine symptom assessment, nurses need to capture the specific impact of symptoms on day-to-day life. Based on this assessment, symptom management interventions (e.g. health education, referral) can be tailor-made and prioritised.


Assuntos
Falência Renal Crônica/psicologia , Qualidade de Vida , Atividades Cotidianas/psicologia , Dispneia/etiologia , Fadiga/etiologia , Feminino , Humanos , Falência Renal Crônica/fisiopatologia , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Transtornos do Sono-Vigília/etiologia
16.
J Pain Symptom Manage ; 60(1): 70-79.e1, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31981596

RESUMO

CONTEXT: Patients with end-stage renal disease receiving dialysis experience multiple concurrent symptoms. A person-centered understanding of patients' symptom experiences may offer insights into individualized management. OBJECTIVES: We identified subgroups of patients based on their symptom experiences and the characteristics that differentiated among these subgroups. Outcomes associated with these subgroups were evaluated. METHODS: A total of 354 patients on dialysis were recruited at two regional hospitals in Hong Kong. While the Dialysis Symptom Index was adopted to assess symptoms, the Kidney Disease Quality of Life 36 and Karnofsky Performance Status Scale were used to evaluate the quality of life outcomes. Information on health care utilization and mortality were retrieved from medical records. Subgroups of patients were identified using latent class analysis based on the occurrence ratings. Differences in characteristics and outcomes were determined using Chi-squared test, analysis of variance, and Cox regression analysis. RESULTS: Three latent classes were identified: low (37.8%), moderate physical-low psychological (29.7%), and moderate physical-high psychological (32.5%). Higher comorbidity burden and lower serum albumin levels differentiated between the low and moderate physical-low psychological classes. The moderate physical-high psychological class had the highest number of symptoms, poorest quality of life outcomes, and more unscheduled clinic visits. A shorter mean survival time (421 vs. 431 days) was also found. CONCLUSION: Consistent with findings in other chronic conditions, subgroups of patients on dialysis have unique symptom experiences. Therefore, an individualized approach to symptom management is warranted. Our findings offer a phenotypic characterization for research on the underlying mechanisms for these symptom experiences.


Assuntos
Falência Renal Crônica , Diálise Renal , Comorbidade , Hong Kong/epidemiologia , Humanos , Falência Renal Crônica/terapia , Qualidade de Vida
17.
J Pain Symptom Manage ; 59(1): 67-76, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31419542

RESUMO

CONTEXT: Patients with end-stage renal disease undergoing dialysis experience multiple concurrent symptoms. These symptoms cluster together and have negative impacts on patient outcomes. However, information on changes in symptom clusters over time is limited. OBJECTIVES: This longitudinal study examined the stability of symptom clusters and their impacts on health-related quality of life and functional status over a period of one year. METHODS: Eligibility criteria were patients diagnosed with end-stage renal disease; had received dialysis consecutively for at least three months; and had given written informed consent. Dialysis Symptom Index, Kidney Disease Quality of Life 36, and Karnofsky Performance Status Scale were used to evaluate the impacts of symptom clusters and outcomes. Exploratory factor analyses and multiple regression analyses were used to determine symptom clusters and their associations with patient outcomes. RESULTS: Among the 354 recruited patients, 271 completed the 12-month assessment. Four symptom clusters were identified across the three assessments, namely, uremic, gastrointestinal, skin, and emotional. Within each cluster, the specific symptoms were varied. The uremic symptom cluster accounted for the largest amount of variability. Across the three assessments, a higher uremic cluster factor score was associated with poorer physical well-being, whereas a higher emotional cluster factor score was consistently associated with poorer mental well-being. CONCLUSION: Symptoms in patients on dialysis clustered in relatively stable patterns. The four symptom clusters identified had consistent negative effects on various aspects of patients' well-being. Our findings suggest the need for ongoing symptom assessment and early recognition of symptoms that may contribute to adverse patient outcomes.


Assuntos
Falência Renal Crônica/terapia , Qualidade de Vida , Diálise Renal , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Sintomas , Síndrome
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...