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1.
J Am Med Dir Assoc ; 25(4): 623-632.e5, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38000443

RESUMO

OBJECTIVES: The COVID-19 pandemic had a profound and pervasive impact on the health of chronic care patients and disrupted care systems worldwide. Our research aimed to assess the impact of the pandemic on chronic care provision and provide recommendations for improving care provision, based on patient experiences. DESIGN: Qualitative semi-structured interviews were held among patients with chronic obstructive pulmonary disease (COPD) or heart failure. SETTING AND PARTICIPANTS: Using stratified sampling, 23 patients with COPD, heart failure, or both were recruited to participate in semi-structured interviews. In the summer of 2021, online interviews were conducted. METHODS: An iterative process was adopted to analyze the data. Going back and forth through the data and our analytical structure, we first coded the data, and subsequently developed categories, themes, and aggregate dimensions. The data were synthesized in a data structure and a data table, which were analyzed using an interpretative approach. RESULTS: We found 3 dimensions through which care might be improved: (1) proactive and adaptive health care organization and use of innovative technologies, (2) assistance in maintaining patient resilience and coping strategies, and (3) health care built on outreaching and person-centered care enabling identification of individual patient needs. Experiences of impaired accessibility to care, altered and unmet care demands and patient needs, and the negative impact of national containment strategies on patient resilience support the need for improvement in these dimensions. CONCLUSIONS AND IMPLICATIONS: The in-depth insight gained on the impact of the pandemic on chronic care provision was used to propose recommendations for improving care, supported by not only the what and how but also the why developments require additional efforts made by policymakers and change agents, augmented by structural use and development of innovations. Health care organizations should be enabled to rapidly respond to changing internal and external environments, develop and implement innovations, and match care to patient needs.


Assuntos
Insuficiência Cardíaca , Doença Pulmonar Obstrutiva Crônica , Humanos , Pandemias , Pesquisa Qualitativa , Insuficiência Cardíaca/terapia , Avaliação de Resultados da Assistência ao Paciente
2.
J Am Med Dir Assoc ; 24(4): 426-433.e2, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36781063

RESUMO

OBJECTIVES: The COVID-19 pandemic has had a profound and pervasive impact on psychosocial health and disrupted care systems world-wide. Our research aims to assess the psychosocial impact of the pandemic and related changes in chronic care provision on patients with chronic obstructive pulmonary disease (COPD) and heart failure. DESIGN: A qualitative survey using semi-structured interviews was held among patients with COPD and heart failure. SETTING AND PARTICIPANTS: Using randomized sampling, 23 patients with COPD, heart failure, or both were recruited to participate in semi-structured interviews. Interviews were held by phone or videocall. The survey was held during the summer of 2021, when strict national containment strategies were widely implemented but gradually loosened and vaccination was ongoing. METHODS: Inductive coding using Gioia's approach was used to analyze the data in Atlas.Ti 9.1 software. Using an iterative approach, the data were synthesized in a data structure and data table, which was analyzed using an interpretative approach. RESULTS: We found 3 aggregate dimensions in which the COVID-19 pandemic has a negative impact on psychosocial health of patients with chronic disease: (1) perceived vulnerability to disease, (2) influence of health policy, and (3) a mismatch of supply and demand of health care. In these dimensions, the impact of the COVID-19 crisis was found to have a negative impact on psychosocial well-being, compounded by national strategies to contain the pandemic and a disruption of chronic care for patients. CONCLUSIONS AND IMPLICATIONS: Health care providers should be aware of a multidimensional nature of psychosocial distress for chronic disease patients due to the COVID-19 crisis. Future practice and health policy could be improved by increasing awareness among health care providers, promote regular attention for psychosocial well-being of patients, provision of clear information related to the pandemic, and strategies to secure continuity of care. Results of this study might be further explored in larger studies.


Assuntos
COVID-19 , Doença Pulmonar Obstrutiva Crônica , Humanos , Pessoal de Saúde/psicologia , Pandemias
3.
Intellect Dev Disabil ; 59(1): 39-54, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33543280

RESUMO

In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.


Assuntos
Planejamento Antecipado de Cuidados , Deficiência Intelectual , Comunicação , Humanos , Deficiência Intelectual/terapia , Cuidados Paliativos
4.
J Appl Res Intellect Disabil ; 33(2): 160-171, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31441581

RESUMO

BACKGROUND: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. METHOD: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis. RESULTS: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. CONCLUSIONS: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.


Assuntos
Planejamento Antecipado de Cuidados , Deficiência Intelectual , Cuidados Paliativos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
5.
BMC Palliat Care ; 18(1): 72, 2019 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-31455326

RESUMO

BACKGROUND: The need for palliative care is increasing. Since almost every junior doctor will come across palliative care patients, it is important to include palliative care in the undergraduate curriculum. The objective of this research is to gather undergraduate students' views on palliative care in terms of its importance, their confidence in and knowledge of the domain. METHODS: Final-year medical students at four Dutch medical faculties were surveyed. The questionnaire measured their views on the education they had received, their self-reported confidence in dealing with palliative care patients and their knowledge of palliative care. RESULTS: Two hundred twenty-two medical students participated in this study. Students considered palliative care education relevant, especially training in patient-oriented care and communication with the patient. Students felt that several topics were inadequately covered in the curriculum. Overall, the students did not feel confident in providing palliative care (59.6%), especially in dealing with the spiritual aspect of palliative care (77%). The knowledge test shows that only 48% of the students answered more than half of the questions correctly. CONCLUSION: The students in this study are nearly junior doctors who will soon have to care for palliative patients. Although they think that palliative care is important, in their opinion the curriculum did not cover many important aspects, a perception that is also in line with their lack of confidence and knowledge in this domain. Therefore, it is important to improve palliative care education in the medical curriculum.


Assuntos
Educação de Graduação em Medicina/normas , Cuidados Paliativos/métodos , Estudantes de Medicina/psicologia , Adulto , Atitude do Pessoal de Saúde , Currículo/normas , Currículo/tendências , Educação de Graduação em Medicina/métodos , Feminino , Humanos , Masculino , Países Baixos , Estudantes de Medicina/estatística & dados numéricos , Inquéritos e Questionários
6.
J Pain Symptom Manage ; 54(6): 938-960.e1, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28797850

RESUMO

CONTEXT: Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients' understanding, reflection, and discussion of goals, values, and preferences for future care. There is evidence for the general palliative care population that ACP increases compliance with patients' end-of-life preferences and improves quality of care near the end of life. OBJECTIVES: To gain insight into what is known about the use and effects of ACP in palliative care for people with intellectual disabilities (IDs). METHODS: Four databases were searched systematically: PubMed, PsycINFO, Embase, and CINAHL. A stepwise procedure was used to identify relevant studies based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. The review included empirical quantitative, qualitative, and mixed methods studies concerning people with ID who receive palliative care or who died non-acutely, and describing ACP. Methodological quality was graded using a critical appraisal tool. RESULTS: A total of 14 studies were included. Most studies examined the perspective of professionals and/or relatives. None of the studies focused on the perspective of patients with ID. The studies concerned different elements of ACP, mainly decision-making and organizational policies. No effect studies were found. Obstructing factors were difficulties in recognizing palliative needs and uncertainties among relatives and professionals about their roles and tasks in ACP. Conducive factors were good working relationships between professionals and relatives. CONCLUSION: There are some indications that ACP could be useful for people with ID, but more knowledge is needed about whether and how ACP should be used.


Assuntos
Planejamento Antecipado de Cuidados , Deficiência Intelectual , Cuidados Paliativos , Tomada de Decisão Clínica , Humanos , Cuidados Paliativos/métodos
7.
Appl Nurs Res ; 36: 1-8, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28720227

RESUMO

INTRODUCTION: Co-creative methods, having an iterative character and including different perspectives, allow for the development of complex nursing interventions. Information about the development process is essential in providing justification for the ultimate intervention and crucial in interpreting the outcomes of subsequent evaluations. This paper describes a co-creative method directed towards the development of an eHealth intervention delivered by registered nurses to support self-management in outpatients with cancer pain. METHODS: Intervention development was divided into three consecutive phases (exploration of context, specification of content, organisation of care). In each phase, researchers and technicians addressed five iterative steps: research, ideas, prototyping, evaluation, and documentation. Health professionals and patients were consulted during research and evaluation steps. RESULTS: Collaboration of researchers, health professionals, patients and technicians was positive and valuable in optimising outcomes. The intervention includes a mobile application for patients and a web application for nurses. Patients are requested to monitor pain, adverse effects and medication intake, while being provided with graphical feedback, education and contact possibilities. Nurses monitor data, advise patients, and collaborate with the treating physician. CONCLUSION: Integration of patient self-management and professional care by means of eHealth key into well-known barriers and seem promising in improving cancer pain follow-up. Nurses are able to make substantial contributions because of their expertise, focus on daily living, and their bridging function between patients and health professionals in different care settings. Insights from the intervention development as well as the intervention content give thought for applications in different patients and care settings.


Assuntos
Dor do Câncer/enfermagem , Educação de Pacientes como Assunto/métodos , Autocuidado/métodos , Autogestão/métodos , Telemedicina/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais , Manejo da Dor/métodos
8.
Eur J Oncol Nurs ; 23: 97-105, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27456381

RESUMO

PURPOSE: Cancer pain is a prevalent and distressing symptom. To enhance self-management in outpatients, a multi-component intervention was developed, integrating patient self-management and professional care through healthcare technology. This article describes feasibility of the intervention in everyday practice. METHOD: Patients with moderate to severe cancer pain (n = 11) and registered nurses specialized in pain and palliative care (n = 3) participated in a four-week study. The intervention involved daily monitoring, graphical feedback, education, and advice by means of a mobile application for patients and a web application for nurses. Learnability, usability and desirability were measured in patients with a 20-item questionnaire (1-5 scale), higher scores indicating better feasibility. Patients' adherence was based on completion rates from server logs. Single semi-structured interviews with patients and a focus group interview with nurses provided insight into experiences. RESULTS: Questionnaire findings confirmed learnability (4.8), usability (4.8) and desirability (4.6) of the application for patients. Average completion rates were 76.8% for pain monitoring, 50.4% for medication monitoring and 100% for education sessions. Interviews revealed that patients were pleased with the simplicity of the mobile application and appreciated different components. Nurses agreed upon the added value and were mostly positive about the possibilities of the web application. Patients and nurses provided ideas for improvements relating to the content and technical performance of the intervention. CONCLUSIONS: Study results demonstrate feasibility of the intervention in everyday practice. Provided that content-related and technical adjustments are made, the intervention enables patients with cancer pain to practice self-management and nurses to remotely support these patients.


Assuntos
Assistência Ambulatorial , Dor do Câncer/terapia , Internet , Aplicativos Móveis , Manejo da Dor , Autocuidado , Adulto , Idoso , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Inquéritos e Questionários , Adulto Jovem
9.
BMC Cancer ; 15: 416, 2015 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-25986294

RESUMO

BACKGROUND: Pain is a prevalent and distressing symptom in patients with cancer, having an enormous impact on functioning and quality of life. Fragmentation of care, inadequate pain communication, and reluctance towards pain medication contribute to difficulties in optimizing outcomes. Integration of patient self-management and professional care by means of healthcare technology provides new opportunities in the outpatient setting. METHODS/DESIGN: This study protocol outlines a two-armed multicenter randomized controlled trial that compares a technology based multicomponent self-management support intervention with care as usual and includes an effect, economic and process evaluation. Patients will be recruited consecutively via the outpatient oncology clinics and inpatient oncology wards of one academic hospital and one regional hospital in the south of the Netherlands. Irrespective of the stage of disease, patients are eligible when they are diagnosed with cancer and have uncontrolled moderate to severe cancer (treatment) related pain defined as NRS≥4 for more than two weeks. Randomization (1:1) will assign patients to either the intervention or control group; patients in the intervention group receive self-management support and patients in the control group receive care as usual. The intervention will be delivered by registered nurses specialized in pain and palliative care. Important components include monitoring of pain, adverse effects and medication as well as graphical feedback, education, and nurse support. Effect measurements for both groups will be carried out with questionnaires at baseline (T0), after 4 weeks (T1) and after 12 weeks (T2). Pain intensity and quality of life are the primary outcomes. Secondary outcomes include self-efficacy, knowledge, anxiety, depression and pain medication use. The final questionnaire contains also questions for the economic evaluation that includes both cost-effectiveness and cost-utility analysis. Data for the process evaluation will be gathered continuously over the study period and focus on recruitment, reach, dose delivered and dose received. DISCUSSION: The proposed study will provide insight into the effectiveness of the self-management support intervention delivered by nurses to outpatients with uncontrolled cancer pain. Study findings will be used to empower patients and health professionals to improve cancer pain control. TRIAL REGISTRATION: NCT02333968 December 29, 2014.


Assuntos
Assistência Ambulatorial/métodos , Aplicativos Móveis , Neoplasias/complicações , Manejo da Dor/métodos , Dor/enfermagem , Autocuidado/métodos , Assistência Ambulatorial/economia , Computadores de Mão , Humanos , Dor/etiologia , Manejo da Dor/economia , Manejo da Dor/instrumentação , Medição da Dor , Educação de Pacientes como Assunto , Qualidade de Vida , Projetos de Pesquisa , Autocuidado/economia , Autocuidado/instrumentação
10.
Ned Tijdschr Geneeskd ; 159: A8121, 2015.
Artigo em Holandês | MEDLINE | ID: mdl-25563780

RESUMO

Pain is common in patients with cancer (33-64%) and can be divided into background and breakthrough pain (BTP). BTP is a passing, acute pain that occurs despite the use of analgesia to control background pain. BTP may arise spontaneously or be provoked by certain movements or activities. It lasts 30-60 minutes and is generally self-limiting and is often undertreated. We describe 2 patients aged 68 and 57 years with metastatic disease who were admitted for pain management. BTP was inadequately managed during their hospital stay. Both patients had to wait too long before they received their BTP medication, causing the BTP to have passed its peak. After consultation with their nurses, both patients were allowed to have one dose of breakthrough medication in advance, which resulted in better treatment of their BTP. Every hospitalized patient with BTP should have one dose of breakthrough medication ready for taking in advance.


Assuntos
Analgésicos/uso terapêutico , Dor Irruptiva/tratamento farmacológico , Manejo da Dor/métodos , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Manejo da Dor/normas , Medição da Dor
11.
Support Care Cancer ; 17(8): 1089-99, 2009 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-19104843

RESUMO

INTRODUCTION: The prevalence of pain in patients with cancer is still too high. Factors relating to ineffective pain treatment fall into three categories: the health care system, professional care providers, and patients. In patients, various barriers lead to noncompliance. Previous educational interventions have increased their knowledge of pain and decreased short-term pain levels. In this randomized controlled trial, the authors investigated how an intensive home-based education program given by nurses affected short-term and long-term pain levels. MATERIALS AND METHODS: One hundred and twenty cancer patients were randomized to receive either the pain education program (PEP) or usual care. Pain, knowledge, quality of life, anxiety, and depression were measured at baseline and after 4 and 8 weeks. In the intervention group, effects on symptom levels were communicated to the treating physician. RESULTS: The level of pain had decreased at 4 weeks, but not at 8 weeks. Significant decreases in pain only persisted in those patients with a high pain score at baseline. Knowledge of pain significantly increased in the intervention group. No correlation was found between increased pain knowledge and decreased pain levels. CONCLUSIONS: The PEP given by nurses lowered pain intensity levels in cancer patients and increased their knowledge of pain. More attention should be paid to patient education and to communication between patients and health professionals regarding pain and pain management.


Assuntos
Neoplasias/complicações , Papel do Profissional de Enfermagem , Dor/psicologia , Educação de Pacientes como Assunto/métodos , Idoso , Ansiedade/epidemiologia , Ansiedade/etiologia , Comunicação , Depressão/epidemiologia , Depressão/etiologia , Feminino , Seguimentos , Conhecimentos, Atitudes e Prática em Saúde , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais/psicologia , Dor/epidemiologia , Dor/etiologia , Relações Profissional-Paciente , Qualidade de Vida , Fatores de Tempo
12.
Pflege Z ; 60(11): 620-5, 2007 Nov.
Artigo em Alemão | MEDLINE | ID: mdl-18062627

RESUMO

A large number of breast cancer patients receiving adjuvant chemotherapy is suffering from fatigue. Until now there has been a lack of knowledge concerning the course of fatigue in breast cancer patients between two cycles of adjuvant chemotherapy. Therefore a prospective cohort study was conducted including 151 breast cancer patients from six hospitals in The Netherlands. The object of the study was to investigate the course of fatigue between the third and the fourth cycles of adjuvant chemotherapy, and to prove whether that course is influenced by different chemotherapy schedules. The patients were treated either with a doxorubicin containing schedule (21 or 28 days) or with a combination of cyclophosphamide, methotrexate, and 5-fluorouracil (CMF, 28 days). To assess fatigue patients were asked to write a diary cotaining the Shortened Fatigue Questionnaire (SFQ) from the beginning of the third cycle to the start of the fourth one. All days after completion of the third chemotherapy treatment were analysed. The main hypothesis to be tested was that the maximum fatigue level occurs in the first four days after treatment. Results revealed a chaotic pattern of fatigue between both cycles of chemotherapy in each of the treatment group. Smooth (splines) curves showed an average highest level of fatigue on day 3 post treatment. For the regimens with 28-days-intervalls another peak of fatigue was registered on day 11. A significant larger number of patients experienced maximum fatigue levels before day 5. The course of fatigue in the CMF group was significantly different compared with both doxorubicin groups. Women of the CMF group experienced lower fatigue peaks than patients of other groups. The results confirm the main hypothesis. The first days after treatment with chemotherapy are the worst ones for breast cancer patients. The course of fatigue is significantly related to the type of chemotherapy. Knowing these effects patients can better prepare oneself and their daily living for the time of adjuvant chemotherapy.


Assuntos
Neoplasias da Mama/enfermagem , Quimioterapia Adjuvante/enfermagem , Fadiga/enfermagem , Adulto , Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Quimioterapia Adjuvante/efeitos adversos , Pesquisa em Enfermagem Clínica , Estudos de Coortes , Ciclofosfamida/administração & dosagem , Ciclofosfamida/efeitos adversos , Doxorrubicina/administração & dosagem , Doxorrubicina/efeitos adversos , Esquema de Medicação , Fadiga/induzido quimicamente , Feminino , Fluoruracila/administração & dosagem , Fluoruracila/efeitos adversos , Humanos , Metotrexato/administração & dosagem , Metotrexato/efeitos adversos , Pessoa de Meia-Idade , Países Baixos
13.
Cancer Nurs ; 29(6): 467-77, 2006.
Artigo em Inglês | MEDLINE | ID: mdl-17135820

RESUMO

The purpose of this study was to determine the course of fatigue in patients with breast cancer between 2 cycles of adjuvant chemotherapy, from the day of administration until the day of the next infusion. In a prospective cohort study, a sample of 151 patients with breast cancer receiving adjuvant chemotherapy was recruited from 6 hospitals in mainly the south of the Netherlands. Patients reported their experience of fatigue in a diary, the Shortened Fatigue Questionnaire, on a daily basis between the third and fourth treatment with adjuvant chemotherapy. Patients were treated with either a doxorubicin containing schedule or with cyclophosphamide, methotrexate, and 5-fluorouracil (CMF, 28 days). In the 28-day regimens, infusions were given on day 1 and day 8. The days after completion of the third and the start of the fourth treatment with chemotherapy were statistically analyzed. We tested the hypothesis that the maximum fatigue score occurs in the first 4 days after treatment. The mean age of the sample was 47.2 years (SD = 8.8). Most women (84%) were married or lived together with a partner. The majority (80%) of all patients had been diagnosed with stage II breast cancer. The division between mastectomies (47%) and lumpectomies (52%) was approximately equal. Sixty percent of the patients received radiotherapy before the third treatment with chemotherapy and/or in the period they kept the diary. A chaotic pattern of fatigue between the 2 cycles of chemotherapy emerged. Smooth (splines) curves showed an average highest level of fatigue on day 3 from the start. For the 28-day regimens, another distinct peak was seen around day 11. A relatively larger number of patients experienced peak fatigue levels before day 5. The course of fatigue in the CMF group was significantly different compared with the doxorubicin regimens. The fatigue peak in the CMF group was lower. Women taking cyclophosphamide orally experienced the peak level of fatigue significantly later. Influences of other variables were not observed in any chemotherapy group. Cancer-related fatigue has a chaotic nature. The first days after treatment with chemotherapy are the worst. The type of chemotherapy has a significant impact on the course of fatigue. Improved understanding of the nature and course of fatigue could equip healthcare providers better for informing patients about what they may expect. Future research should include interventions aimed at reducing or coping with fatigue.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Quimioterapia Adjuvante/efeitos adversos , Fadiga/induzido quimicamente , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Neoplasias da Mama/cirurgia , Esquema de Medicação , Feminino , Humanos , Estudos Prospectivos
14.
Palliat Med ; 20(6): 585-92, 2006 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-17060251

RESUMO

INTRODUCTION: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. METHODS: The national register of the consultations of the PCC teams was analysed for a two-year period. RESULTS: Spiritual issues played a role in 8.4% of palliative care consultations, of which 4.1% were by phone and 18.3% were bedside consultations. Often spiritual issues were raised by the consultant during the exploration of the request from the caregiver; the discipline of the consultant rather than the discipline of the requesting professional or the patient characteristics determined whether or not such issues were raised. The main support given by the consultant was in coaching the professional caregiver on how to address these issues. DISCUSSION: This study demonstrates the important role of PCC team consultants in exploring and identifying the spiritual needs of patients about whom they are consulted. Although continued education in spiritual care for palliative care professionals is essential, PCC team consultants will play an important role in drawing the attention of healthcare professionals to the need to recognize and address the spiritual needs of their patients.


Assuntos
Cuidadores/educação , Cuidados Paliativos/psicologia , Equipe de Assistência ao Paciente/organização & administração , Espiritualidade , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Consultores , Atenção à Saúde/organização & administração , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Países Baixos
15.
Cancer Nurs ; 29(5): E1-13, 2006.
Artigo em Inglês | MEDLINE | ID: mdl-17006105

RESUMO

The purpose of this study was to determine the course of the activity level, seen as a dimension of fatigue, as a function of chemotherapy within a breast cancer population receiving adjuvant chemotherapy. The second purpose of this study was to determine the course of the interference of fatigue, in general, with daily activities within a breast cancer population receiving adjuvant chemotherapy. In a prospective cohort study, a sample of 157 patients with breast cancer was interviewed, at the first, third, and fifth cycle of adjuvant chemotherapy as well as 4 and 12 weeks after the last cycle of adjuvant chemotherapy. The chemotherapy was administered with either a doxorubicin-containing schedule or cyclophosphamide, methotrexate, and 5-fluorouracil. These 2 groups were compared. The activity level was measured by the Multidimensional Fatigue Inventory. A linear multilevel model was used to analyze the course. The revised Piper Fatigue Scale was used to examine the behavioral changes in the interference of fatigue with activities of daily living. A logistic multilevel model was used to analyze the course of this interference over time. The activity level seems to be rather stable during the treatment with chemotherapy. After the completion of chemotherapy, an improvement is observed. The activity levels reported at the first and the last measurement do not significantly differ. The course of the activity level is not affected by the type of chemotherapy regimen. Age, having children, and the stage of breast cancer turn out to be important determinants of the course of activity level. At all measurement occasions, women with a mastectomy were significantly more hampered in their activity level than women that had undergone a lumpectomy. The longer the duration of radiotherapy, the less active, and the longer the time interval between the last radiotherapy session and the measurement point, the more active patients were at that measurement point. A phenomenon not easy to explain is that the activity level in women who had received, in total, more chemotherapy treatments was significantly less diminished than those who had received fewer treatments. During the study period, in approximately 15% to 35% of the sample, fatigue interferes considerably with their daily living activities. Furthermore, the interference of fatigue with activities in daily life first increases after the start of chemotherapy and decreases after the completion of chemotherapy. Fatigue definitely affects the daily living activities of patients with breast cancer receiving adjuvant chemotherapy. With this knowledge, healthcare providers can inform patients on what they can expect. Further research should include the trajectory preceding chemotherapy and a healthy control group.


Assuntos
Atividades Cotidianas , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Neoplasias da Mama/tratamento farmacológico , Fadiga , Adulto , Idoso , Neoplasias da Mama/complicações , Neoplasias da Mama/cirurgia , Quimioterapia Adjuvante , Estudos de Coortes , Feminino , Humanos , Mastectomia Segmentar , Pessoa de Meia-Idade
16.
Support Care Cancer ; 13(11): 920-8, 2005 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-15772813

RESUMO

GOALS OF WORK: Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care. METHODS: As part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care. MAIN RESULTS: Professional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables. CONCLUSIONS: The results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.


Assuntos
Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Padrões de Prática Médica/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Assistência Terminal/normas , Competência Clínica , Comportamento Cooperativo , Hospitais , Humanos , Países Baixos , Cuidados Paliativos/normas , Atenção Primária à Saúde , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Garantia da Qualidade dos Cuidados de Saúde
17.
J Pain Symptom Manage ; 27(1): 53-60, 2004 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-14711469

RESUMO

Palliative care in The Netherlands is mainly provided by generalist professionals who are part of the regular health care system. In order to provide good quality palliative care, they need options for training and consultation. Therefore, Palliative Care Consultation (PCC) teams were established, which inform, support, and advise professional caregivers involved with patients in palliative care without taking over responsibility. This study is the first nationwide study on PCC teams. Investigated was the nature and effect of consultations by registration and evaluation of consultations given by 19 PCC teams during a one-year period. Sixty-one percent of the requesting caregivers were primary care professionals and the problems discussed covered the entire field of palliative care, although physical problems played a dominant role. Although the patient was often not seen by the consultant, the consultant appeared to be able to identify more problems than initially discussed by the requesting professional. The types of problems discussed were hardly related to patient characteristics but more related to the discipline of the professional caregiver. According to the requesting professionals, consultation was helpful and contributed to improving the quality of palliative care.


Assuntos
Cuidadores , Comportamento do Consumidor , Cuidados Paliativos , Encaminhamento e Consulta , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Avaliação de Programas e Projetos de Saúde
18.
Cancer Nurs ; 25(4): 283-97; quiz 298-9, 2002 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-12181497

RESUMO

The aim of this literature review was to evaluate the prevalence and course of fatigue in patients with breast cancer undergoing adjuvant chemotherapy and to examine factors relating to fatigue. Fatigue is one of the most common side effects of chemotherapy. High and fluctuating prevalence rates of fatigue have been found not only during but also after adjuvant chemotherapy. The intensity of fatigue seems to be stable throughout the treatment cycles, despite the common perception that more chemotherapy treatments lead to greater fatigue. The first two days after a chemotherapy treatment seem to be the worst period. The influence of factors such as pain, impaired quality of sleep, and depression are be highly consistent across several studies, although it is often not clear whether it is the symptoms that cause the fatigue or vice versa. The outcomes of the studies indicate that several symptoms are interrelated in a network of symptoms. Factors such as changes in weight, menopausal symptoms, coping, social support, and biochemical changes have been mentioned in the literature as potentially contributing to fatigue. Results have been conflicting and need further study.


Assuntos
Antineoplásicos/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Fadiga/induzido quimicamente , Adulto , Idoso , Idoso de 80 Anos ou mais , Quimioterapia Adjuvante/efeitos adversos , Fadiga/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica
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