RESUMEN
INTRODUCTION: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient's initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person. METHODS: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis. RESULTS: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one's time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so. CONCLUSION: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.
Asunto(s)
Adaptación Psicológica , Cuidadores , Neoplasias , Investigación Cualitativa , Enfermo Terminal , Humanos , Masculino , Femenino , Cuidadores/psicología , Persona de Mediana Edad , Adulto , Anciano , Neoplasias/psicología , Enfermo Terminal/psicología , Apoyo Social , Familia/psicología , Anciano de 80 o más Años , Entrevistas como Asunto/métodos , Habilidades de AfrontamientoRESUMEN
BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers. AIMS: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support. METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis. DISCUSSION: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.
Asunto(s)
Cuidadores , Cuidado Terminal , Enfermo Terminal , Humanos , Cuidadores/psicología , Enfermo Terminal/psicología , Encuestas y Cuestionarios , Cuidado Terminal/psicología , Familia/psicología , Masculino , FemeninoRESUMEN
BACKGROUND: People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed. AIM: To understand the definition, prevalence and impact of financial insecurity on the physical and psychological well-being of people living with terminal illness. DESIGN: A systematic review with a narrative synthesis (prospectively registered; CRD42023404516). DATA SOURCES: Medline, Embase, CINAHL, AMED, PsycINFO, ProQuest Central and Cochrane Central Register of Controlled Trials, from inception to May 2023. Included studies had to measure or describe the impact of financial insecurity on an aspect of participants' physical or mental well-being. Study quality was assessed using the Hawker tool. RESULTS: A total of 26 studies were included in the review. Financial insecurity was defined using many different definitions and terminology. Out of 4824 participants, 1126 (23%) reported experiencing high levels of financial insecurity. Nine studies reported 21 unique analyses across three domains of physical well-being. Out of those 21 analyses, 10 (48%) reported a negative result (an increase in financial insecurity was reported with a decrease in physical well-being). Twenty-one studies reported 51 unique analyses across nine domains of psychological well-being. Out of these analyses, 35 (69%) reported a negative result (an increase in financial insecurity was reported with a decrease in psychological well-being). CONCLUSIONS: People living with terminal illness require support with their financial situation to ensure their well-being is not negatively impacted by financial insecurity.
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Enfermo Terminal , Humanos , Enfermo Terminal/psicología , Masculino , Femenino , Persona de Mediana Edad , Anciano , Estrés Financiero/psicología , Adulto , Calidad de Vida/psicología , Salud Mental , Anciano de 80 o más Años , Bienestar PsicológicoRESUMEN
BACKGROUND: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. AIMS: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. METHODS: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. RESULTS: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. CONCLUSION: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.
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Familia , Cuidados Paliativos , Enfermo Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Masculino , Femenino , Estudios Prospectivos , Anciano , Persona de Mediana Edad , Encuestas y Cuestionarios , Familia/psicología , Anciano de 80 o más Años , Enfermo Terminal/psicología , Calidad de Vida/psicología , AdultoRESUMEN
CONTEXT: A systematic review of the wish to hasten death among people with life-limiting conditions was published in 2011. Since then, other reviews and primary studies have been published that have added to knowledge regarding the conceptual definition, aetiology and assessment of the wish to hasten death. OBJECTIVES: To provide an updated synthesis of the literature on the wish to hasten death in people with life-limiting conditions. METHODS: An overview of systematic reviews and primary studies was conducted, using an integrative review method. PubMed, CINAHL, Scopus and Web of Science databases were searched, from their inception until 2023. We included all systematic reviews published to date and all primary studies not included in these systematic reviews. RESULTS: Eleven systematic reviews and 35 primary studies were included. We propose that the phenomenon may usefully be considered as existing along a continuum, defined by the extent to which thoughts of dying are linked to action. A total of nine assessment tools have been described. The reported prevalence of the wish to hasten death appears to be influenced by the wording used in assessment instruments, as well as by the cut-off used when applying a particular tool. Depression, pain, functional disability, decreased sense of meaning in life, the sense of being a burden and reduced quality of life are the most widely reported related factors. CONCLUSION: This overview underscores the need for clinical strategies that can identify different manifestations of the wish to hasten death among people with life-limiting conditions.
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Actitud Frente a la Muerte , Humanos , Cuidados Paliativos , Cuidado Terminal , Calidad de Vida , Enfermo Terminal/psicología , Suicidio Asistido/psicologíaRESUMEN
BACKGROUND: The COVID-19 pandemic in Turkey and around the world has had a profound impact on the families of terminally ill patients. In this challenging period, investigating the spiritual care perceptions and religious coping methods of patients' relatives is an essential step towards understanding the experiences in this process with the additional challenges brought by the pandemic and developing appropriate support services. This study aims to determine the spiritual care perceptions and the use of religious coping methods among the relatives of terminally ill patients in Turkey during the COVID-19 pandemic. METHODS: The sample of this descriptive and correlational study consisted of the relatives of terminally ill patients (n = 147) who were receiving treatment in the Anesthesiology and Reanimation Intensive Care Unit of a state hospital in Turkey. Spirituality and Spiritual Care Rating Scale and the Religious Coping Scale to them using face-to-face interviews. Mann-Whitney U test, Kruskal-Wallis test, and Spearman's correlation analysis were used to analyze the data. RESULTS: The mean age of the participants was 38.84 ± 11.19 years. Also, 63.3% of them were employed. The participant's total score on the Spirituality and Spiritual Care Rating Scale was 57.16 ± 6.41, and it was determined that the participants' level of perception of spirituality and spiritual care concepts was close to good. When the Religious Coping Scale scores of the participants were examined, it was found that both Positive Religious Coping levels (23.11 ± 2.34) and Negative Religious Coping levels (9.48 ± 1.47) were close to high. There was no correlation between the scores of RCOPE and SSCRS (p > 0.05). CONCLUSION: As a result, it was determined that the level of perception of spirituality and spiritual care concepts of the relatives of terminally ill patients during the COVID-19 pandemic was close to sound, and their Positive Religious Coping levels were high. Epidemics are a reality of the world, and it is essential to learn lessons from this process and take precautions for the future. We offer a perspective to realize the coping power of religion and spirituality, which are integral parts of life. The needs of terminally ill patients' relatives, a sensitive group, become visible.
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Adaptación Psicológica , COVID-19 , Familia , Espiritualidad , Enfermo Terminal , Humanos , COVID-19/psicología , COVID-19/epidemiología , Turquía , Masculino , Femenino , Adulto , Persona de Mediana Edad , Enfermo Terminal/psicología , Familia/psicología , Pandemias , SARS-CoV-2 , Encuestas y Cuestionarios , AncianoRESUMEN
BACKGROUND: The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups. METHODS: This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed. RESULTS: Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden. CONCLUSIONS: This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies influential factors that can affect the perceived intensity of symptom burden, primarily the main type of terminal illness and patient's age. Tailored care support and improved clinical care should be implemented, particularly for high-risk groups such as patients with non-cancer terminal illnesses and older aged patients. These findings contribute to existing literature and emphasize the need for comprehensive and individualized care in EoLC.
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Enfermo Terminal , Humanos , Masculino , Femenino , Estudios Transversales , Anciano , Enfermo Terminal/psicología , Persona de Mediana Edad , Anciano de 80 o más Años , Hong Kong , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Costo de EnfermedadRESUMEN
BACKGROUND: This study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs. METHODS: In this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention. RESULTS: The coalesced group (DT and DT +) revealed a significant increase in patients' perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group's HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation. CONCLUSIONS: The DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one's final days. TRIAL REGISTRATION: This study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.
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Distrés Psicológico , Cuidado Terminal , Humanos , Cuidados Paliativos/métodos , Cuidado Terminal/métodos , Cuidadores/psicología , Terapia de la Dignidad , Enfermo Terminal/psicología , MuerteRESUMEN
BACKGROUND: The expressions of a "wish to hasten death" or "wish to die" raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the "wish to hasten death/die" based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the "wish to hasten death/die" relate to and are interpreted in light of ethical principles in palliative care. METHODS: We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare's framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. RESULTS: Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the "wish to hasten death" and/or "wish to die" were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the "wish to hasten death". Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. CONCLUSIONS: This meta-ethnographic review shows a reduced number of qualitative studies on the "wish to hasten death" and/or "wish to die" explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.
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Cuidado Terminal , Enfermo Terminal , Humanos , Actitud Frente a la Muerte , Cuidados Paliativos , Enfermo Terminal/psicologíaRESUMEN
BACKGROUND: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. STUDY OBJECTIVE: The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. METHODS: This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. RESULTS: Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. CONCLUSION: For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.
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Cuidadores , Servicios Médicos de Urgencia , Investigación Cualitativa , Enfermo Terminal , Humanos , Cuidadores/psicología , Masculino , Femenino , Enfermo Terminal/psicología , Persona de Mediana Edad , Anciano , Adulto , Cuidado Terminal/psicología , Toma de Decisiones , Entrevistas como Asunto , Anciano de 80 o más AñosRESUMEN
OBJECTIVES: This single-centre prospective randomised controlled study aimed to investigate the effectiveness of dignity therapy on spiritual well-being, demoralisation and dignity-related distress compared with standard palliative care. METHODS: A total of 111 terminally ill hospice patients were randomly allocated to one of two groups: dignity therapy plus standard palliative care (intervention group) or standard palliative care alone (control group). The main outcomes were meaning, peace, faith, loss of meaning and purpose, distress and coping ability, existential distress, psychological distress and physical distress. Assessments were conducted at baseline, 7-10 and 15-20 days. RESULTS: Following randomisation, 11 dropped out before baseline assessment and 33 after post-treatment assessment. A total of 67 patients completed the study, 35 in the experimental group and 32 in the control group. Repeated measures general linear model showed significant differences between groups on peace and psychological distress over time, but not on existential distress, physical distress, meaning and purpose, distress and coping ability, meaning and faith. Specifically, patients in the dignity therapy intervention maintained similar levels of peace from baseline to follow-up, whereas patients in the control group significantly declined in peace during the same time period. Moreover, psychological distress significantly decreased from pretreatment to post-treatment in the intervention group and increased in the control group. CONCLUSIONS: Dignity therapy may be an effective intervention in maintaining sense of peace for terminally ill patients. The findings of our study are of relevance in palliative care and suggest the potential clinical utility of this psychological intervention.
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Neoplasias , Enfermo Terminal , Humanos , Enfermo Terminal/psicología , Terapia de la Dignidad , Estudios Prospectivos , Respeto , Cuidados Paliativos , Muerte , Calidad de Vida/psicología , Neoplasias/psicologíaRESUMEN
Stories for Life is a UK charity that provides a free and confidential service for terminally ill patients to audio record their "life story." Patients are given a copy of the recording and, if they wish, can then pass a copy on to their family/friends. This study explored how a group of terminally ill patients, receiving hospice care, experienced the process of making a voice recording of their biographies. Interviews were conducted with 5 terminally ill patients and 1 family member. Study participants found that talking to a trained volunteer provided a neutral, nonjudgmental interviewer. Patients reported a feeling of catharsis while telling their story as well as being able to reflect on significant life events. However, it was challenging to convey difficult emotions while also being mindful of protecting family who may listen to the recording. Although there was some uncertainty about how the recording would be perceived by listeners, leaving a voice-recorded life account was felt to be beneficial for immediate family members, as well as maintaining a meaningful connection with future generations. Overall, recording an audio biography in terminal illness can allow patients a space for reflection and a meaningful connection with their families.
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Cuidados Paliativos al Final de la Vida , Humanos , Enfermo Terminal/psicología , Organizaciones de Beneficencia , Grabaciones de Sonido , Familia/psicologíaRESUMEN
Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.
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Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Niño , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Enfermo Terminal/psicologíaRESUMEN
OBJECTIVE: Unprecedently investigate associations of prognostic-awareness-transition patterns with (changes in) depressive symptoms, anxiety symptoms, and quality of life (QOL) during cancer patients' last 6 months. METHODS: In this secondary analysis study, 334 cancer patients in their last 6 months transitioned between four prognostic-awareness states (unknown and not wanting to know, unknown but wanting to know, inaccurate awareness, and accurate awareness), thus constituting three transition patterns: maintaining-accurate-, gaining-accurate-, and maintaining-inaccurate/unknown prognostic awareness. A multivariate hierarchical linear model evaluated associations of the transition patterns with depressive symptoms, anxiety symptoms, and QOL determined at final assessment and by mean difference between the first and last assessment. RESULTS: At the last assessment before death, the gaining-accurate-prognostic-awareness group reported higher levels of depressive symptoms (estimate [95% confidence interval] = 1.59 [0.35-2.84]) and the maintaining- and gaining-accurate-prognostic-awareness groups suffered more anxiety symptoms (1.50 [0.44-2.56]; 1.42 [0.13-2.71], respectively) and poorer QOL (-7.07 [-12.61 to 1.54]; -11.06 [-17.76 to -4.35], respectively) than the maintaining-inaccurate/unknown-prognostic-awareness group. Between the first and last assessment, the maintaining- and gaining-accurate-prognostic-awareness groups' depressive symptoms (1.59 [0.33-2.85]; 3.30 [1.78-4.82], respectively) and QOL (-5.04 [-9.89 to -0.19]; -8.86 [-14.74 to -2.98], respectively) worsened more than the maintaining-inaccurate/unknown-prognostic-awareness group, and the gaining-accurate-prognostic-awareness group's depressive symptoms increased more than the maintaining-accurate-prognostic-awareness group (1.71 [0.42-3.00]). CONCLUSIONS: Unexpectedly, patients who maintained/gained accurate prognostic awareness suffered more depression, anxiety, and poorer QOL at end of life. Promoting accurate prognostic awareness earlier in the terminal-cancer trajectory should be supplemented with adequate psychological care to alleviate patients' emotional distress and enhance QOL. TRIAL REGISTRATION: ClinicalTrials.gov:NCT01912846.
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Neoplasias , Distrés Psicológico , Humanos , Calidad de Vida/psicología , Pronóstico , Enfermo Terminal/psicología , Estudios Longitudinales , Concienciación , Neoplasias/psicología , Depresión/epidemiología , Depresión/psicologíaRESUMEN
La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)
Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)
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Humanos , Cuidados Paliativos/legislación & jurisprudencia , Cuidado Terminal/legislación & jurisprudencia , Derecho a Morir/legislación & jurisprudencia , Actitud Frente a la Muerte , Enfermo Terminal/legislación & jurisprudencia , Muerte , Cuidados Paliativos/psicología , Argentina , Cuidado Terminal/psicología , Enfermo Terminal/psicología , Prioridad del Paciente/psicologíaRESUMEN
Background: With disease progression, a terminally ill person may experience loss of physical and cognitive skills required to perform everyday activities. Such functional loss can erode autonomy and cause existential suffering. Supported engagement in everyday activities may help terminally ill people stay involved in living and cope with dying. Occupational therapy enables people to engage in valued activities at the end of life, yet remains under-utilized. Objectives: To address the perceived under-utilization of end-of-life care occupational therapy, the authors investigated how utilization of occupational therapy in end-of-life care is determined from the perspective of decision-makers and occupational therapists and then developed a model of the process. Methods: Using a grounded theory method, authors conducted two semi-structured interviews with 20 decision-makers and 21 occupational therapists. Theoretical sampling followed by paradigm analysis, yielded a data-grounded model. Results: The authors developed The Model of Occupational Therapy Utilization in End-of-Life Care. Service utilization was primarily contingent upon the decision-makers' awareness of occupational therapy's role in end-of-life care and further influenced by place of care cost constraints and participants' ability to adjust focus of the occupational therapy to accommodate the patient's dying process. Conclusion: Limited awareness of occupational therapy's role in end-of-life care warrants research on whether modification of model constructs may increase awareness and utilization. Education is indicated to teach providers about suffering due to functional loss and how to adjust focus of occupational therapy to sustain occupational participation through decline, across different care settings, and along a range between rehabilitation-focused to participation-focused outcomes.
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Cuidados Paliativos al Final de la Vida , Terapia Ocupacional , Cuidado Terminal , Humanos , Cuidado Terminal/psicología , Cuidados Paliativos/psicología , Enfermo Terminal/psicologíaRESUMEN
BACKGROUND: Little research has examined changes in prognostic awareness (PA) in the last year of life and the extent PA change was associated with anxiety, depression, and spiritual well-being among metastatic cancer patients. METHODS: Two surveys were administered in the last year of life to 176 conveniently sampled Singaporean patients with stage 4 solid cancers. PA was assessed by asking patients whether they were aware that their treatments were unlikely to cure their cancer. Multivariable linear regression models were used to investigate the association of PA change with anxiety, depression, and spiritual well-being. RESULTS: The proportion of patients with accurate PA increased (39.2%-45.5%; p < 0.05) from the second-last assessment to the last assessment before death. Those with inaccurate PA decreased (26.1%-20.4%; p < 0.05) while a third of patients remained uncertain at both assessments (34.7% and 34.1%). Compared to patients with inaccurate PA at both assessments, patients who reported accurate PA at both assessments reported worsened anxiety (ß = 2.08), depression (ß = 3.87), and spiritual well-being (ß = -4.45) while patients who reported being uncertain about their prognosis at both assessments reported worsened spiritual well-being (ß = - 6.30) at the last assessment before death (p < 0.05 for all). CONCLUSIONS: Interventions should dually focus on decreasing prognostic uncertainty at the end-of-life while minimising the psychological and spiritual sequelae associated with being prognostically aware. More research is needed to clarify the causes of prognostic uncertainty.
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Neoplasias , Enfermo Terminal , Humanos , Pronóstico , Enfermo Terminal/psicología , Concienciación , Neoplasias/epidemiología , Neoplasias/terapia , Neoplasias/psicología , Evaluación de Resultado en la Atención de Salud , Calidad de Vida/psicologíaRESUMEN
BACKGROUND: People living at home with advanced cancer wish to maintain and preserve domestic life, but they experience several barriers in their everyday occupations and thereby occupational performance. There is little knowledge of these barriers experienced by people living alone versus people living with someone. OBJECTIVE/AIM: To investigate differences in self-perceived occupational performance and the prioritisation of getting self-reported problematic everyday occupations solved among people with advanced cancer, taking living status into consideration. METHOD: A cross-sectional study using baseline data from an RCT including 174 participants with advanced cancer living at home. Difficulty and priorisation of everyday occupations were assessed using the Individually Prioritised Problem Assessment (IPPA). RESULTS: In total, 731 problematic everyday occupations were reported, mainly related to the categories of housework, self-care and leisure. CONCLUSIONS/SIGNIFICANCE: Overall, no statistically significant difference in self-reported occupational performance was found. However, people living alone perceived statistically significantly more frequently showering/bathing and doing laundry as difficult and therefore important to address. In contrast, people living with someone prioritised social interaction and home maintenance statistically significantly more frequently.
Asunto(s)
Neoplasias , Ocupaciones , Enfermo Terminal , Humanos , Actividades Cotidianas/psicología , Estudios Transversales , Ambiente en el Hogar , Neoplasias/psicología , Terapia Ocupacional , Vida Independiente , Enfermo Terminal/psicología , Masculino , Femenino , Adulto , Persona de Mediana EdadRESUMEN
BACKGROUND: Patients with terminal illnesses have different symptoms. The goal of palliative care is to alleviate the suffering induced by these symptoms. Available research on symptoms has focused on their prevalence or identification of clusters. Little is known about the central symptoms contributing to the maintenance of the whole system of symptoms or the mechanism of influence between symptoms, particularly between physical and psychosocial symptoms. AIM: The study used network analysis to explore symptom clusters among patients with terminal illnesses and identify the central symptoms, the bridge symptoms, and pathways between physical and psychosocial symptoms. DESIGN AND SETTING/PARTICIPANTS: This is a retrospective cohort study using baseline symptom assessment of 677 adults with terminal illnesses receiving care from the Integrated Community End-of-Life Care Support Teams. RESULTS: Three symptom clusters were identified: physical, psychological, and practical clusters. "Weakness or lack of energy" was identified as the crucial symptom affecting the changes of other symptoms, followed by depression and anxiety. Three connections between the psychological and physical symptoms were identified: anxiety-pain, depression-constipation, and perceived family anxiety-poor appetite pathways. Pathways of practical concern-peace and practical concern-depression were indicated between practical and psychological symptoms. CONCLUSIONS: This study is the first of its kind to investigate the connections and mechanism of influence between symptoms among patients with terminal illnesses. It offers clear pathways for intervention with the most influential symptoms of weakness, anxiety, and depression.