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BACKGROUND: Providing the right care for each individual patient is a key element of quality palliative care. Complexity is a relatively new concept, defined as the nature of patients' situations and the extent of resulting needs. Classifying patients according to the complexity of their care needs can guide integration of services, anticipatory discussions, health service planning, resource management and determination of needs for specialist or general palliative care. However, there is no consistent approach to interpreting and classifying complexity of patient needs. AIM: The aim of this article is to identify and describe classification systems for complexity of patient care needs in palliative care. DESIGN: Narrative systematic review (PROSPERO registration number CRD42020182102). DATA SOURCES: MEDLINE, Embase, CINAHL and PsychINFO databases were searched without time limitations. Articles were included that described classification systems for complexity of care requirements in populations with palliative care needs. RESULTS: In total, 4301 records were screened, with nine articles identified reporting the use of patient classification systems in populations with palliative care needs. These articles included the use of six classification systems: HexCom, Perroca Scale, AN-SNAP, Hui Major Criteria, IDC-Pal and PALCOM. These systems were heterogenous in the manner they determined complexity of care needs. The HexCom and IDC-Pal systems contained items that covered all domains of complexity as described by Hodiamont; personal, social support, health care team and environment. CONCLUSION: Although six classification systems have been developed, they access differing aspects of care needs and their application has been limited. The HexCOM and IDC-Pal systems offer the broadest determinations of complexity from an individual perspective. Further research is needed to apply these systems to populations external to those in which they were developed, and to appreciate how they may integrate with, and impact, clinical care.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Atenção à Saúde , Humanos , Equipe de Assistência ao Paciente , Qualidade da Assistência à SaúdeRESUMO
BACKGROUND: Patients express a variety of needs, some of which are labeled social and spiritual. Without an in-depth exploration of patients' expressions of these needs, it is difficult to differentiate between them and allocate appropriate healthcare interventions. AIM: To gain insight into the social and spiritual needs of patients with a life-limiting illness and the distinction between these needs, as found in the research literature. DESIGN: A mixed-methods systematic review and meta-aggregation were conducted following the Joanna Briggs Institute (JBI) approach to qualitative synthesis and the PALETTE framework and were reported according to the PRISMA statement. This review was registered in PROSPERO (CRD42019133571). DATA SOURCES: The search was conducted in PubMed, EMBASE, CINAHL, Scopus, and PsycInfo. Eligible studies reported social and spiritual needs from the patients' perspective and were published between January 1st 2008 and October 2020. The quality of evidence was assessed using JBI Critical Appraisal Tools. RESULTS: Thirty-four studies (19 qualitative, 1 mixed-methods, and 14 quantitative) were included. The five synthesized findings encompassing social and spiritual needs were: being autonomous, being connected, finding and having meaning, having a positive outlook, and dealing with dying and death. CONCLUSION: What literature labels as social and spiritual needs shows great similarities and overlap. Instead of distinguishing social from spiritual needs based on patients' linguistic expressions, needs should always be explored in-depth. We propose a socio-spiritual approach that honors and preserves the multidimensionality of patients' needs and enables interdisciplinary teamwork to allocate patient-tailored care.
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Cuidados Paliativos , Humanos , Pesquisa QualitativaRESUMO
In this retrospective study, determinants of unbearable suffering in hospice patients who died due to euthanasia were analyzed. The four dimensions of suffering (physical, psychological, social, and existential) were used as a framework. 28 patients (5% of all admitted patients in nine years) were included. Most patients indicated 3-5 determinants, predominantly a combination of physical (96% of patients) and existential determinants (89%). Fatigue, anorexia, and dry mouth were the most prevalent and severe symptoms. Psychological (21%) and social determinants (4%) were much less often described. The results of this study may be used to assess determinants playing a role in euthanasia requests.
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Eutanásia , Hospitais para Doentes Terminais , Ansiedade , Humanos , Estudos Retrospectivos , Estresse PsicológicoRESUMO
ABSTRACTObjective:Insight into symptoms as predictors for anxiety may help to foster early identification of anxiety and to ameliorate anxiety management. The aim of this study was to determine which frequently occurring symptoms are predictors for anxiety in advanced cancer patients recently admitted to a hospice. METHOD: Symptom burden was measured in patients admitted to a hospice who died ≤3 month after admission using the Utrecht Symptom Diary. This is a Dutch-translated and adapted version of the Edmonton Symptom Assessment System to self-assess the 11 most prevalent symptoms and overall well-being on a 0-10 numerical rating scale. Multiple linear regression analysis was employed to analyze the predictive value of fatigue, nausea, pain, dyspnea, depressed mood, insomnia, and well-being on anxiety. RESULTS: A total of 211 patients were included, 42% of whom were men, and the median age was 71 years (range = 31-95). Anxiety was uncommon and rarely severe: 25% had a score ≥1, and 14% had a score >3. After correction for age, gender, and marital status, depressed mood (p = 0.00) and dyspnea (p = 0.01) were independent predictors for anxiety and explained 23% of the variance in anxiety. SIGNIFICANCE OF RESULTS: Hospice inpatients with advanced cancer who suffer from dyspnea and/or depressed mood are at increased risk for anxiety. Treatment of dyspnea and depressed mood may contribute to adequate anxiety management. Further research should explore other factors associated with anxiety, especially in the psychological, social, and spiritual domains.
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Ansiedade/diagnóstico , Técnicas de Apoio para a Decisão , Neoplasias/psicologia , Síndrome , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/etiologia , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Hospitais para Doentes Terminais/organização & administração , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Países Baixos , Estudos Prospectivos , Estudos Retrospectivos , Índice de Gravidade de DoençaRESUMO
BACKGROUND: A majority of patients prefer to die at home. Specialist palliative care aims to improve quality of life. Hospice assist at home is a Dutch model of general/specialised palliative care within primary care, collaboratively built by general practitioners and a hospice. AIM: The aims of this study are to explore whether hospice assist at home service enables patients at hometo express end-of-life preferences and die in their preferred location. In addition, this study provides insight into symptomburden, stability and early referral. DESIGN: A retrospective cross-sectional evaluation study was performed (December 2014-March 2015), using hospice assist at home patient records and documentation. Primary outcome includes congruence between preferred and actual place of death. Secondary outcomes include symptom burden, (in)stability and early identification. SETTING/PARTICIPANTS: Between June 2012 and December 2014, 130 hospice assist at home patients, living at home with a life expectancy <1 year, were enrolled. Hospice assist at home, a collaboration between general practitioners, district nurses, trained volunteers and a hospice team, facilitates (1) general practitioner-initiated consultation by Nurse Consultant Hospice, (2) fortnightly interdisciplinary consultations and (3) 24/7 hospice backup for patients, caregivers and professionals. RESULTS: A total of 130 patients (62 (48%) men; mean age, 72 years) were enrolled, of whom 107/130 (82%) died and 5 dropped out. Preferred place of death was known for 101/107 (94%) patients of whom 91% patients died at their preferred place of death. CONCLUSION: Hospice assist at home service supports patients to die in their preferred place of death. Shared responsibility of proactive care in primary care collaboration enabled patients to express preferences. Hospice care should focus on local teamwork, to contribute to shared responsibilities in providing optimal palliative care.
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Serviços de Assistência Domiciliar/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Preferência do Paciente , Atenção Primária à Saúde/organização & administração , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Estudos Retrospectivos , Direito a MorrerRESUMO
BACKGROUND: Anxiety is a risk for reduced quality of life in advanced cancer patients. However, it is an overlooked symptom without routine use of instruments to assess anxiety. AIM: To gain insight into the use of instruments by nurses to assess anxiety in advanced cancer patients and the rationale behind it. METHODS: Data with regard to nurses' use of instruments were collected from medical records of 154 patients in three settings. Additionally, 12 nurses were interviewed. FINDINGS: Four instruments were used to assess anxiety. The frequency of assessed anxiety differed among settings. The application of instruments guided patient care and improved communication. Lack of knowledge was the main reason not to use instruments. CONCLUSIONS: Application was influenced by patient and environmental factors, knowledge, attitudes and beliefs of nurses. Multifaceted strategies, leadership and education of nurses in the assessment and analysis of anxiety are needed to improve symptom management in advanced cancer patients.
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Transtornos de Ansiedade/enfermagem , Transtornos de Ansiedade/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias/enfermagem , Neoplasias/psicologia , Avaliação em Enfermagem/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Avaliação como Assunto , Feminino , Humanos , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , Países Baixos , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
Background: In palliative care, the Utrecht Symptom Diary - 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients' autonomy, it is essential to know what patients need to use it. Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care. Design: A generic qualitative design with primary and secondary analyses of semistructured interviews. Methods: Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis. Results: Twenty-five patients were included (14 men, ages 44-87). Patients' needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach. Conclusion: For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them.
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Context: Insight into patients' personal values, wishes, and needs (VWN) by clinicians is essential to guide appropriate palliative care. Objective: To gain insight into the exploration and monitoring of the VWN of patients with advanced cancer during the illness trajectory by hospital oncology clinicians. Method: A generic qualitative study was conducted from February 2022 to July 2022. Specialized nurses, nurse practitioners and medical specialists (in training) providing care to adult patients with advanced cancer were recruited at an outpatient clinic in a Dutch academic hospital. Data were collected using in-depth semi-structured interviews and participatory observations of outpatient clinic consultations. Data were analyzed collaboratively by two researchers using thematic analysis. Results: Eleven clinicians, aged 33-64, 8 females, participated; 7 interviews and 13 observations were conducted. How clinicians explored and monitored patients' VWN was based on their opinions, originating from the clinicians' personal values and work experiences. These were influenced by the local collaboration. Three key opinions were identified: (1) providing safety, (2) supporting medical decision-making, and (3) ensuring alignment. Individual clinicians' approaches varied. The alignment of care and treatment with the patient's VWN was observed to be limited. Conclusion: Clinicians acknowledged the importance of exploring and monitoring patients' VWN but lacked a systematic approach in discussing these topics. Patients should be actively engaged in communication regarding their VWN rather than primarily being provided with medical information. Patient-Reported Outcome Measures may be beneficial in facilitating communication regarding the patient's VWN and could improve appropriate palliative care in hospital cancer care.
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Background: Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. Aims: This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care. Design: Retrospective cohort study. Settings/Participants: Data were collected from Dutch hospice patient's clinical records and hospice surveys, detailing hospice structures, patient clinical characteristics and care processes. Results: 662 patients were included from 42 hospices, mean age 76.1 years. Hospices were categorised according to their care structures - structured clinical documentation and multidisciplinary meetings. Patients receiving care in hospices with structured multidisciplinary meetings had an increased quantity of documented care processes per patient on admission through identification (median 4 vs 3, P < .001), medication (2 vs 1, P = .004) and non-medication (1 vs 0, P < .001) interventions, monitoring (2 vs 1, P < .001) and evaluation (0 vs 0, P = .014), and prior to death. Similar increases were identified for patients who received care in hospices with structured documentation upon admission, but these changes were not consistent prior to death. Conclusions: This study details that the care structures of documentation and multidisciplinary meetings are associated with increased quantity and breadth of documentation of care processes in hospice care. Employing these existing structures may result in improvements in the documentation of patient care processes, and thus better communication around patient care.
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Cuidados Paliativos na Terminalidade da Vida , Humanos , Estudos Retrospectivos , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Idoso , Feminino , Masculino , Idoso de 80 Anos ou mais , Países Baixos , Pessoa de Meia-Idade , Cuidados Paliativos/organização & administração , Documentação/normas , Hospitais para Doentes Terminais/organização & administração , Equipe de Assistência ao Paciente/organização & administraçãoRESUMO
CONTEXT: Incorporation of a palliative care approach is increasingly needed in primary care and nursing home care because most people with a life-limiting illness or frailty live there. OBJECTIVES: To explore patients' and relatives' experiences of palliative care at home and in nursing homes. METHODS: Generic qualitative research in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home, and their relatives. Data is collected through semi-structured interviews and thematically analyzed by a multidisciplinary research team. RESULTS: Seven patients and five relatives participated. Three essential elements of palliative care and their contributing factors emerged: 1) be seen (personal attention, alignment to who the patient is as a person, and feeling connected) 2) information needs (illness trajectory and multidimensional symptoms and concerns, and 3) ensuring continuity (single point of contact, availability of HCPs, and coordination of care). Patients and relatives experienced loss of control and safety if these essentials were not met, which depended largely on the practices of the individual health care professional. CONCLUSION: In both primary care and nursing home care, patients and relatives expressed the same essential elements of palliative care. They emphasized the importance of being recognized as a unique person beyond their patient status, receiving honest and clear information aligned with their preferences, and having care organized to ensure continuity. Adequate competence and skills are needed, together with a care organization that enables continuity to provide safe and person-centered care.
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Background: Palliative care patients desire more symptom management interventions that are complementary to their medical treatment. Within the multi-professional team, nurses could help support pain management with non-pharmacological interventions feasible for their practice and adaptable to palliative care patients' needs. Objectives: The objective was to identify non-pharmacological interventions feasible in the nursing scope of practice affecting pain in palliative care patients. Design: A systematic review. Data sources and methods: A defined search strategy was used in PubMed, CINAHL, PsycINFO, and Embase. Search results were screened double-blinded. Methodological quality was double-appraised with the Joanna Briggs Institute Critical Appraisal Tools. Data were extracted from selected studies and the findings were summarized. The methodological quality, quantity of studies evaluating the same intervention, and consistency in the findings were synthesized in a best-evidence synthesis to rank evidence as strong, moderate, limited, mixed, or insufficient. Results: Out of 2385 articles, 22 studies highlighted non-pharmacological interventions in the nursing scope of practice. Interventions using massage therapy and virtual reality demonstrated most evidentiary support for pain management, while art therapy lacked sufficient evidence. Mindful breathing intervention showed no significant reduction in pain. Hypnosis, progressive muscle-relaxation-interactive-guided imagery, cognitive-behavioral audiotapes, wrapped warm footbath, reflexology, and music therapy exhibited promising results in pain reduction, whereas mindfulness-based stress reduction program, aromatherapy, and aroma-massage therapy did not. Conclusion: Despite not all studies reaching significant changes in pain scores, non-pharmacological interventions can be clinically relevant to palliative care patients. Its use should be discussed for its potential value and nurses to be trained for safe practice. Methodologically rigorous research for non-pharmacological interventions in nursing scope of practice for pain relief in palliative care patients is necessary. Trial registration: The protocol for this study is registered in the International Prospective Register of Systematic Review (PROSPERO registration number: CRD42020196781).
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BACKGROUND: Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP). OBJECTIVE: To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF. METHODS: A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed. RESULTS: The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns. CONCLUSION: The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient.
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The reuse of real-world symptom monitoring data is essential in improving the quality of hospice care. A framework for achieving this is a Learning Health System, in which the development of a well-defined dataset is essential. This paper discusses the challenges in the design of a comprehensive dataset, focusing on variations in two electronic health record systems and divergent care processes.
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Registros Eletrônicos de Saúde , Cuidados Paliativos na Terminalidade da Vida , Sistema de Aprendizagem em Saúde , HumanosRESUMO
Background: The exploration and monitoring of the personal values, wishes, and needs (VWN) of patients in the palliative phase by hospital clinicians is essential for guiding appropriate palliative care. Objective: To explore the barriers and facilitators concerning communication with patients in the palliative phase about their VWN as perceived by hospital clinicians. Design: A mixed-methods systematic review following the Joanna Briggs Institute guidelines for mixed-method systematic reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines was conducted (PROSPERO ID: CRD42021216693). Data sources and methods: Eight databases, including PubMed, Embase, and CINAHL, were searched without time restrictions. The search string was built using the search Palliative cAre Literature rEview iTeraTive mEthod (PALETTE) framework. Eligible studies focused on (1) hospital clinicians and (2) perceived barriers and facilitators regarding the exploration and monitoring of the VWN of adult patients in the palliative phase. Two researchers independently selected articles and evaluated the quality. Findings were synthesized using a convergent integrated approach. Results: In total, 29 studies were included: 14 quantitative, 13 qualitative, and 2 mixed methods. Five synthesized findings were identified: (1) the clinician's professional manners, (2) the image formed of the patient and loved ones, (3) the human aspect of being a clinician, (4) the multidisciplinary collaboration, and (5) the contextual preconditions. Most studies seemed focused on communication about treatment decision making. Conclusion: A patient-centered approach seems lacking when clinicians discuss the patient's VWN, since most studies focused on treatment decision making rather than on the exploration and monitoring of the multidimensional well-being of patients. This review emphasizes the need for the development and integration of a systematic approach to explore and monitor the patients' VWN to improve appropriate palliative care in hospitals.
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Background: National clinical guidelines have been developed internationally to reduce variations in clinical practices and promote the quality of palliative care. In The Netherlands, there is considerable variability in the organisation and care processes of inpatient palliative care, with three types of hospices - Volunteer-Driven Hospices (VDH), Stand-Alone Hospices (SAH), and nursing home Hospice Units (HU). Aim: This study aims to examine clinical practices in palliative care through different hospice types and identify variations in care. Methods: Retrospective cohort study utilising clinical documentation review, including patients who received inpatient palliative care at 51 different hospices and died in 2017 or 2018. Care provision for each patient for the management of pain, delirium and palliative sedation were analysed according to the Dutch national guidelines. Results: 412 patients were included: 112 patients who received treatment for pain, 53 for delirium, and 116 patients underwent palliative sedation therapy. Care was provided in accordance with guidelines for pain in 32%, 61% and 47% (P = .047), delirium in 29%, 78% and 79% (P = .0016), and palliative sedation in 35%, 63% and 42% (P = .067) of patients who received care in VDHs, SAHs and HUs respectively. When all clinical practices were considered, patient care was conducted according to the guidelines for 33% of patients in VDHs, 65% in SAHs, and 50% in HUs (P < .001). Conclusions: The data demonstrate that care practices are not standardised throughout Dutch hospices and exhibit significant variations between type of hospice.
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Delírio , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Estudos Retrospectivos , Cuidados Paliativos , Dor , Delírio/tratamento farmacológicoRESUMO
Background: Palliative care in primary care and nursing home settings is becoming increasingly important. A multidimensional palliative care approach, provided by a multiprofessional team, is essential to meeting patients' and relatives' values, wishes, and needs. Factors that hamper the provision of palliative care in this context have not yet been fully explored. Objectives: To identify the barriers to providing palliative care for patients at home or in nursing homes as perceived by healthcare professionals. Design: Cross-sectional survey study. Methods: A convenience sample of nurses, doctors, chaplains, and rehabilitation therapists working in primary care and at nursing homes in the Netherlands is used. The primary outcome is barriers, defined as statements with ⩾20% negative response. The survey contained 56 statements on palliative reasoning, communication, and multiprofessional collaboration. Data were analyzed using descriptive statistics. Results: In total, 249 healthcare professionals completed the survey (66% completion rate). The main barriers identified in the provision of palliative care were the use of measurement tools (43%), consultation of an expert (31%), estimation of life expectancy (29%), and documentation in the electronic health record (21% and 37%). In primary care, mainly organizational barriers were identified, whereas in nursing homes, most barriers were related to care content. Chaplains and rehabilitation therapists perceived the most barriers. Conclusion: In primary care and nursing homes, there are barriers to the provision of palliative care. The provision of palliative care depends on the identification of patients with palliative care needs and is influenced by individual healthcare professionals, possibilities for consultation, and the electronic health record. An unambiguous and systematic approach within the multiprofessional team is needed, which should be patient-driven and tailored to the setting.
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OBJECTIVES: Hospice care in the Netherlands is provided in three different types of hospice facilities: volunteer-driven hospices (VDH), stand-alone hospices (SAHs) and hospice unit nursing homes (HU). The organisational structures range from care directed by trained volunteers in VDH to care provided by multiprofessional teams in SAH and HU units.This study aims to characterise the patient populations who access Dutch hospices and describe the patient profiles in different hospice types. METHODS: A retrospective cohort study using clinical records of adult hospice inpatients in 2017-2018 from a random national sample of hospices. RESULTS: In total 803 patients were included from 51 hospices, mean age 76.1 (SD 12.4). 78% of patients had a primary diagnosis of cancer, 3% identified as non-Dutch cultural background and 17% were disorientated on admission. At admission, all patients were perceived to have physical needs. Psychological needs were reported in 37%, 36% and 34%, social needs by 53%, 52% and 62%, and existential needs by 23%, 30% and 18% of patients in VDH, SAH, HU units, respectively. 24%, 29% and 27% of patients from VDHs, SAHs and HUs had care needs in three dimensions, and 4%, 6% and 3% in all four dimensions. CONCLUSIONS: People who access Dutch hospices predominantly have cancer, and have a range of physical, psychological, social and existential needs, without substantial differences between hospice types. Patients with non-malignant disease and non-Dutch cultural backgrounds are less likely to access hospice care, and future policy would ideally focus on facilitating their involvement.
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CONTEXT: In palliative care, caregivers often lack words and competences to discuss patients' needs in social and spiritual dimensions. The Utrecht Symptom Diary-4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social, and spiritual dimensions and to optimize communication between patients and caregivers. OBJECTIVE: To assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance, and comprehensiveness. METHODS: An explorative qualitative study was conducted using in-depth semistructured interviews and thematic analysis. Twelve participants (male N = 7, 53-87 years old) with an estimated life expectancy of less than one year were recruited in two home care services: a general hospital and a hospice. RESULTS: The instructions, items, and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life, and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing. CONCLUSIONS: The USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs.
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Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Pesquisa Qualitativa , EspiritualidadeRESUMO
OBJECTIVE: To provide insight into what nurses know, do and need to provide support to anxious patients in hospice care (HC). METHODS: A mixed method study consisted of an online survey and focus groups (FGs) about what nurses know, do, and need was conducted. 336 HC nurses were invited to participate. Descriptive statistics were computed using SPSS. The χ2 and t-tests were conducted to compare. The FGs were transcribed verbatim and thematically analysed. RESULTS: The survey was completed by 265 nurses (79%), and five FGs (n=25) were conducted. Most nurses had >10 years working experience; mean age was 52. The majority (59%) felt that they were equipped with sufficient knowledge; however, lack of knowledge (31%) as well as lack of time (50%) were hampering factors. Identification of anxiety was difficult due to the variety of its expression. Tools for identifying were used by 37%. Interventions were generally chosen intuitively. A major responsibility was experienced in caring for patients with panic attacks during late night shifts, making immediate decisions necessary. CONCLUSION: This study highlights the struggles of nurses caring for anxious patients in HC. Anxiety management is dependent on the competencies and preferences of the individual nurse. One-third of the nurses require additional training. According to HC nurses, the intervention set should include guidelines for applying assessment tools, effective communication strategies and decision models as well as prediction models in order to select tailored interventions. Future research should focus on patients' perspectives in order to understand crucial measures for anxiety management.
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Ansiedade/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos na Terminalidade da Vida/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros/psicologia , Adulto , Tomada de Decisões , Feminino , Grupos Focais , Necessidades e Demandas de Serviços de Saúde , Hospitais para Doentes Terminais , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Hospice care (HC) aims to optimise the quality of life of patients and their families by relief and prevention of multidimensional suffering. The aim of this study is to gain insight into multidimensional care (MC) provided to hospice inpatients by a multiprofessional team (MT) and identify facilitators, to ameliorate multidimensional HC. METHODS: This exploratory mixed-method study with a sequential quantitative-qualitative design was conducted from January to December 2015. First a quantitative study of 36 patient records (12 hospices, 3 patient records/hospice) was performed. The outcomes were MC, clinical reasoning and assessment tools. Second, MC was qualitatively explored using semistructured focus group interviews with multiprofessional hospice teams. Both methods had equal priority and were integrated during analysis. RESULTS: The physical dimension was most prevalent in daily care, reflecting the patients' primary expressed priority at admission and the nurses' and physicians' primary focus. The psychological, social and spiritual dimensions were less frequently described. Assessment tools were used systematically by 4/12 hospices. Facilitators identified were interdisciplinary collaboration, implemented methods of clinical reasoning and structures. CONCLUSIONS: MC is not always verifiable in patient records; however, it is experienced by hospice professionals. The level of MC varied between hospices. The use of assessment tools and a stepped skills approach for spiritual care are recommended and multidimensional assessment tools should be developed. Leadership and commitment of all members of the MT is needed to establish the integration of multidimensional symptom management and interdisciplinary collaboration as preconditions for integrated multidimensional HC.