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Experience feedback data is increasingly recognised as being helpful in improving healthcare services, and in meeting patient and family needs. This end-of-life care project, based on the principles of appreciative inquiry, sought to learn from the experiences of bereaved people whose relative had died in an acute hospital setting. Informal feedback, offered during a routine telephone call, was thematically analysed and interpreted in an appreciative manner. Confirmatory representations of caring practices and behaviours were identified, categorised and disseminated in a way that enabled staff to come to know and understand end-of-life care at its best, rather than as a set of problematised events. The findings served as a benchmark for individuals and teams to assess and progress their practice reflectively. The authors conclude that staff receptiveness to informal bereaved family feedback may be enhanced by focusing on the positive qualities of end-of-life care within existing practices.
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Atención de Enfermería , Cuidado Terminal , Humanos , Retroalimentación , Familia , HospitalesRESUMEN
PURPOSE: Currently, there is little empirical data on family understanding about brain death and death determination. The purpose of this study was to describe family members' (FMs') understanding of brain death and the process of determining death in the context of organ donation in Canadian intensive care units (ICUs). METHODS: We conducted a qualitative study using semistructured, in-depth interviews with FMs who were asked to make an organ donation decision on behalf of adult or pediatric patients with death determination by neurologic criteria (DNC) in Canadian ICUs. RESULTS: From interviews with 179 FMs, six main themes emerged: 1) state of mind, 2) communication, 3) DNC may be counterintuitive, 4) preparation for the DNC clinical assessment, 5) DNC clinical assessment, and 6) time of death. Recommendations on how clinicians can help FMs to understand and accept DNC through communication at key moments were described including preparing FMs for death determination, allowing FMs to be present, and explaining the legal time of death, combined with multimodal strategies. For many FMs, understanding of DNC unfolded over time, facilitated with repeated encounters and explanation, rather than during a single meeting. CONCLUSION: Family members' understanding of brain death and death determination represented a journey that they reported in sequential meeting with health care providers, most notably physicians. Modifiable factors to improve communication and bereavement outcomes during DNC include attention to the state of mind of the family, pacing and repeating discussions according to families' expressed understanding, and preparing and inviting families to be present for the clinical determination including apnea testing. We have provided family-generated recommendations that are pragmatic and can be easily implemented.
RéSUMé: OBJECTIF: À l'heure actuelle, il y a peu de données empiriques sur la compréhension des familles de la mort cérébrale et de la détermination du décès. Le but de cette étude était de décrire la compréhension des membres de la famille de la mort cérébrale et du processus de détermination du décès dans le contexte du don d'organes dans les unités de soins intensifs (USI) canadiennes. MéTHODE: Nous avons mené une étude qualitative à l'aide d'entrevues semi-structurées et approfondies avec des membres de la famille à qui on a demandé de prendre une décision de don d'organes au nom de patients adultes ou pédiatriques dont le décès avait été déterminé selon des critères neurologiques (DCN) dans les unités de soins intensifs canadiennes. RéSULTATS: Sur la base d'entrevues avec 179 membres de la famille, six thèmes principaux ont émergé : 1) l'état d'esprit, 2) la communication, 3) le DCN peut être contre-intuitif, 4) la préparation à l'évaluation clinique pour un DCN, 5) l'évaluation clinique pour un DCN et 6) le moment du décès. Des recommandations sur la façon dont les cliniciens peuvent aider les membres de la famille à comprendre et à accepter un DCN par la communication à des moments clés ont été décrites, y compris la préparation des membres de la famille à la détermination du décès, l'autorisation de la présence des membres de la famille et l'explication de l'heure légale du décès, combinées à des stratégies multimodales. Pour de nombreux membres de la famille, la compréhension du DCN s'est développée au fil du temps et a été facilitée par des rencontres et des explications répétées plutôt qu'au cours d'une seule rencontre. CONCLUSION: La compréhension qu'ont les membres de la famille de la mort cérébrale et de la détermination du décès représente un parcours qu'ils ont décrit lors de rencontres successives avec des acteurs de soins de santé, et particulièrement avec des médecins. Les facteurs modifiables pour améliorer la communication et les issues du deuil pendant un DCN comprennent l'attention portée à l'état d'esprit de la famille, le rythme et la répétition des discussions en fonction de la compréhension exprimée par les familles, ainsi que la préparation et l'invitation des familles à être présentes pour la détermination clinique, y compris pendant le test d'apnée. Nous avons fourni des recommandations familiales qui sont pragmatiques et peuvent être facilement mises en Åuvre.
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Aflicción , Obtención de Tejidos y Órganos , Adulto , Humanos , Niño , Muerte Encefálica/diagnóstico , Canadá , Pesar , FamiliaRESUMEN
Calhoun and Tedeschi's growth model focuses on cognitive processing after bereavement but it does not show the change in life narrative from beforehand. Our qualitative study aimed to clarify bereaved family growth and revealed new perspectives on posttraumatic growth (PTG), including that the PTG process involves a pre-bereavement experience and is not limited to positive psychological changes.Based on the two new perspectives, a discussion of PTG theory reveals that bereaved families' PTG can only be accurately captured if the pre-loss experience is included; thus, Calhoun and Tedeschi's growth model, which only captures the post-loss process, is insufficient. Additionally, positive psychological changes are not the only type of growth. When considering growth, one must focus on the process, including the experience of the person realizing that it is "okay to be who they are."
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BACKGROUND: This study aimed to explore (i) the consistency between physician-rated and bereaved family-perceived intensity of death rattle, (ii) the relationship between intensity of death rattle and the bereaved family's distress and (iii) the bereaved family's experience and feelings related to suctioning for death rattle. METHODS: We used matched data for deceased patients from a prospective cohort study of cancer patients admitted to a palliative care unit, and their bereaved families from a nationwide questionnaire survey in Japan. The intensity of death rattle using Back's score was evaluated prospectively by physicians and retrospectively by bereaved families. RESULTS: In total, 1122 bereaved families answered (response rate: 66.7%). Of these, 297 reported the development of death rattle. The maximum intensity of death rattle evaluated by physicians and perceived by bereaved families was poorly correlated (Spearman correlation coefficient 0.188, P = 0.082). The optimal cut-off point of Back's score for detecting high-level distress was 1/2, with a low accuracy of prediction (area under the curve 0.62). More than 70% of bereaved families indicated suctioning reduced the intensity of death rattle, made patients comfortable and themselves relieved, whereas a similar proportion felt patients were in distress during suctioning. Families who felt suctioning was gently performed and discussed well whether to do suctioning with health care providers felt less needs for improvement. CONCLUSIONS: Bereaved family-perceived intensity of death rattle did not correlate to physician-evaluated intensity, and the intensity of death rattle itself seemed to poorly correlate to family distress. Gently performed suctioning based on sufficient discussion with families can help reduce family-perceived patient discomfort.
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Neoplasias , Cuidado Terminal , Emociones , Familia , Humanos , Japón , Cuidados Paliativos , Estudios Prospectivos , Estudios Retrospectivos , Encuestas y CuestionariosRESUMEN
This study aimed to understand the experiences of bereaved family members in view of restrictive COVID guidelines using qualitative approach. 10 Hindu, Gujarati bereaved family members who lost their loved ones during the first wave were interviewed telephonically after a month of their loss. Findings were difficulty in proper communication during hospitalization, disrupted end-of-life and funeral rituals and accepting harsh realities related to the changes imposed by using content analysis. Most of the family members felt that there was a need of staying with the patients. Telephonic mode of communication was not sufficient for them and created doubts related to death. Most of them felt remorseful as they were not able to see or bring their loved one home during their last moments and felt deprived of the traditional rituals. Also, they had to deal with their grief by themselves.
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The aim of this retrospective qualitative study was to examine the bereavement experiences and coping of family caregivers, with the Dual Process Model (DPM) as the theoretical framework. A purposive sample of 15 bereaved family caregivers, who had lived with and/or cared for their dying spouse or parent, were recruited from a local hospice. Using the interpretative phenomenological analysis approach, all one-to-one interviews were audio-recorded, transcribed, and entered into NVivo 12 Plus software for analysis. The major themes in this study mirrored well-established components of the DPM, including the concept of overload from the revised model. The cognitive processes of meaning making, an integral component of the DPM, were also discovered and put forth as a fifth theme to illustrate reconstruction of positive meaning. This is posited as an adaptive outcome to successful oscillation between loss-oriented and restoration-oriented grieving processes and, hence, leading to implications for bereavement care and support.
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BACKGROUND: Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). METHODS: From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach's α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. RESULTS: A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach's α of the CES was 0.967 (range: 0.802-0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker-Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients' quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members' age. CONCLUSIONS: The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.
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Calidad de Vida , Cuidado Terminal , China , Estudios Transversales , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
ObjectivesãIn Japan, the proportion of older people receiving end-of-life care in geriatric health services facilities (GHSF) is increasing. However, to our knowledge, there have been no previous studies investigating the relationship between the structure of GHSFs and the quality of end-of-life care evaluated by bereaved families.MethodsãWe secondarily analyzed data from the survey done by the Japan Association of Geriatric Health Services Facilities (JAGHSF) in January 2014. Study subjects were 3 recently bereaved family members who had experienced planned end-of-life care at different facilities of the JAGHSF.The dependent variable was the bereaved family members' satisfaction with end-of-life care, which was obtained based on the best answer out of a 5 point scale for the question "Didn't you regret your family member's death immediately after he/she died?" The independent variables included schemes of explanation of patients' conditions at GHSF, management, and education of facilities and staff by doctors. We conducted a univariate analysis, followed by a multivariable logistic regression analysis.ResultsãFor the final analysis, we included 363 bereaved family members, of which 250 (68.9%) were satisfied with the end-of-life care. In a multivariable logistic regression analysis, family members' satisfaction was significantly associated with regular medical consultation by doctors for facility users (adjusted odds ratio 2.94, 95% CI 1.52-5.70), explanation about patients' conditions at the time of admission by facility staff other than doctors (2.07, 1.01-4.25), explanation about patients' conditions at the time of deterioration by facility staff other than doctors (3.12, 1.17-8.33), and stress management by doctors for facility staff (3.63, 1.84-7.16).ConclusionsãRespect for the roles of the facility staff other than doctors, such as the participation of facility staff in explaining situations for facility users and family members and management of facility staff stress, may improve satisfaction with end-of-life care among bereaved family members. More attention is needed for these factors to improve the quality of end-of-life care in GHSFs.
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Aflicción , Familia/psicología , Instituciones de Salud , Servicios de Salud para Ancianos , Cuerpo Médico , Satisfacción Personal , Cuidado Terminal , Compromiso Laboral , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Japón , Modelos Logísticos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
PURPOSE: Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20-39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40-64 years). METHODS: We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007-2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of "agree/absolutely agree" and the mean scores. RESULTS: We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported "agree/absolutely agree" regarding 9 items, which included "feeling that one's life was completed" in 44 (18%; 95% confidence interval (CI) = 14-23%), "being independent in daily life" in 48 (20%; 95% CI = 15-25%), and "being free from physical distress" in 103 (42%; 95% CI = 36-48%) young patients. Young patients were significantly less likely to feel "one's life was completed" (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and "not being a burden to others" (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged. CONCLUSIONS: Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering.
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Actitud Frente a la Muerte , Familia/psicología , Neoplasias/mortalidad , Neoplasias/psicología , Cuidados Paliativos , Cuidado Terminal , Adulto , Aflicción , Estudios Transversales , Muerte , Femenino , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Humanos , Japón/epidemiología , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Encuestas y Cuestionarios , Cuidado Terminal/métodos , Cuidado Terminal/psicología , Cuidado Terminal/normas , Adulto JovenRESUMEN
BACKGROUND: The death of a loved one has great impact on family members even when the death was expected. While negative changes are reported, some individuals also report personal growth, known as posttraumatic growth (PTG). Many studies on PTG have been performed using quantitative methods and suggest that PTG may differ according to the traumatic event and cultural background. PURPOSE: This study aimed to explore how Japanese bereaved family members of patients with cancer express their experience of PTG after the patient's death by analyzing open-ended answers provided in a cross-sectional survey. METHODS: Qualitative data were collected through a survey, and thematic analysis was used to analyze the data. The present study was part of a larger cross-sectional survey of bereaved families of patients with cancer. Data analyzed in the current study were obtained from 162 bereaved family members of patients with cancer. RESULTS: We identified 18 sub-themes within five predefined major domains of PTG. Moreover, we also identified two additional themes: changed view of life and death, and awareness of health management. CONCLUSIONS: The experience of PTG of bereaved family members varied considerably. Future research on PTG experiences among groups from diverse cultural backgrounds would be beneficial for understanding the concept and its clinical implications.
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Aflicción , Familia/psicología , Neoplasias , Crecimiento Psicológico Postraumático , Anciano , Actitud Frente a la Muerte , Estudios Transversales , Cultura , Estudios de Evaluación como Asunto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Resiliencia PsicológicaRESUMEN
It is not easy to characterize a problem patient or bereaved relatives because identifying a patient or his bereaved family as a “problem” is not considered quite ethical. The approached emergency medical service employees and coroner service physicians were asked to complete a specific targeted anonymous survey. 100 % of survey questionnaires were returned. The questionnaire with a request for filling and returning was submitted to forty employees working full-time, twenty of whom were physicians, ten paramedics and ten lower-level healthcare professionals. The questionnaire comprised ten questions aimed at obtaining clear answers to questions about personal experience with problem patients, specifically aggressive patients, and more specifically whether the health care professionals (HCP) has ever felt immediately threatened by a patient in their work, whether they were exposed to verbal or even physical attack in the context of the patients basic diagnosis established during pre-hospital care. Seventy-five percent of respondents answered Yes to Question No. 5: “Have you ever felt threatened by a patient or bereaved relative in your work?” Eighty percent of respondents answered Yes to Question No. 6: “Have you ever been exposed to a verbal attack by a patient or bereaved relative?” Seventy-five percent of them answered Yes to Question No. 7: “Have you ever been exposed to a physical attack by a patient?” The rate of cases in which emergency medical service employees are exposed to verbal or physical attacks is high. The primary experience hypothesis that this happens has been proven as well as the fact that it is a highly topical and therefore unresolved issue that threatens the whole society with its social implications.
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Aflicción , Comunicación , Personal de Salud , Salud de la Familia , Humanos , Encuestas y CuestionariosRESUMEN
This study aimed to elucidate the experiences of Japanese persons with hematological malignancy (PHMs) in communicating with health care professionals (HCPs), from diagnosis to the end of life, as recalled by their families. We interviewed 14 bereaved families and analyzed the data using the basic techniques of grounded theory. We found that PHMs lived to the fullest possible when they experienced ownership of their illness process despite their disease. The ownership was made possible by active communication from HCPs: first, acknowledging the PHM's way of life, including reaching out from the HCPs and appreciating sincerely PHMs' hopes and will; and second, paving the way ahead, including giving prospects and offering choices. The study underlines that rather than just providing information about the disease, HCPs need to actively ask about and show respect for the PHM's way of life. Only after achieving this can HCPs communicate possible future pathways with PHMs.
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Neoplasias Hematológicas/psicología , Relaciones Médico-Paciente , Comunicación , Familia/psicología , Femenino , Teoría Fundamentada , Humanos , Entrevistas como Asunto , Japón , Masculino , Investigación CualitativaRESUMEN
OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
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Aflicción , Cuidadores/psicología , Familia/psicología , Encuestas y Cuestionarios , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , Suecia , Traducciones , Adulto JovenRESUMEN
AIM:: The main aim of this study was to investigate family member's experiences of communicating with health professionals (HP) during end-of-life care in acute medical wards and a nursing home. METHODS:: A qualitative approach using 19 semi-structured interviews to collect data was used. The text was analysed using a content analysis methodology, extracting content that reflected family member's experiences of end-of-life care in acute medical wards, and a nursing home in Iceland. RESULTS:: Four themes were identified as contributing to favourable communication with HPs in end-of-life care: establishing a relationship; flow of information; environment; acceptance at the time of death. CONCLUSION:: Findings suggested that the context of communication in end-of-life care is more than just a conversation. It includes health professional's appearances, decision-making and respect. Satisfactory communication is a necessary factor of quality of care and the fundamental aspect of the establishment of a positive interpersonal relationship.
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Actitud del Personal de Salud , Aflicción , Comunicación , Familia/psicología , Personal de Salud/psicología , Cuidados Paliativos al Final de la Vida/psicología , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Hogares para Ancianos , Humanos , Islandia , Masculino , Persona de Mediana Edad , Casas de Salud , Investigación CualitativaRESUMEN
OBJECTIVE: The current study was designed to test the hypothesis that quality of death (QOD) and intrusive and deliberate rumination are associated with posttraumatic growth (PTG) among bereaved family members of cancer patients in home palliative care. METHODS: Data were collected from 805 bereaved family members of cancer patients who died at home in Japan. We used a cross-sectional design and participants completed Good Death Inventory, Event-Related Rumination Inventory, and PTG Inventory. Structural equation modeling was used to test the hypothesized relationships. RESULTS: A direct pathway from QOD to PTG was significant. We also found significant indirect pathways between QOD and PTG via deliberate rumination soon after the death and recent deliberate rumination. CONCLUSIONS: Clinicians should provide high-quality end-of-life care with the goals of achieving a good death for terminally ill cancer patients and supporting the experience of PTG in bereaved family members after their loss.
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Adaptación Psicológica , Ansiedad/psicología , Aflicción , Muerte , Familia/psicología , Neoplasias/terapia , Cuidados Paliativos/métodos , Rumiación Cognitiva , Trastornos por Estrés Postraumático/terapia , Anciano , Anciano de 80 o más Años , Actitud Frente a la Muerte , Estudios Transversales , Depresión/psicología , Femenino , Servicios de Atención de Salud a Domicilio , Cuidados Paliativos al Final de la Vida , Humanos , Japón , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Neoplasias/psicología , Cuidados Paliativos/psicología , Calidad de la Atención de Salud , Cuidado Terminal , PensamientoRESUMEN
Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.
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Familia , Atención Domiciliaria de Salud/psicología , Neoplasias/enfermería , Neoplasias/psicología , Cuidados Paliativos/psicología , Población Rural/estadística & datos numéricos , Estrés Psicológico/psicología , Enfermo Terminal/psicología , Anciano , Aflicción , Femenino , Humanos , Masculino , Persona de Mediana Edad , Noruega , Investigación Cualitativa , Estrés Psicológico/etiologíaRESUMEN
BACKGROUND: Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care. METHODS: A questionnaire was sent to each card recipient since the starting point of this practice (October 2014-June 2015). Data was analyzed descriptively. RESULTS: 24 of 68 deliverable questionnaires were returned (response rate 35%). 22 out of 24 recipients felt pleased receiving the card. No participant felt annoyed on receiving the bereavement anniversary card; every participant agreed to at least one positive reaction (i.e. pleased, grateful or consoled). CONCLUSIONS: The participants' reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients' death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such.
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Aniversarios y Eventos Especiales , Muerte , Familia/psicología , Cuidados Paliativos/normas , Percepción , Anciano , Anciano de 80 o más Años , Femenino , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/psicología , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Encuestas y CuestionariosRESUMEN
BACKGROUND: The aims of this study were to gain a better understanding of how bereaved family members perceive the quality of EOL care by comparing their satisfaction with quality of end-of-life care across four different settings and by additionally examining the extent to which demographic characteristics and psychological variables (resilience, optimism, grief) explain variation in satisfaction. METHODS: A cross-sectional mail-out survey was conducted of bereaved family members of patients who had died in extended care units (n = 63), intensive care units (n = 30), medical care units (n = 140) and palliative care units (n = 155). 1254 death records were screened and 712 bereaved family caregivers were identified as eligible, of which 558 (who were initially contacted by mail and then followed up by phone) agreed to receive a questionnaire and 388 returned a completed questionnaire (response rate of 70%). Measures included satisfaction with end-of-life care (CANHELP- Canadian Health Care Evaluation Project - family caregiver bereavement version; scores range from 0 = not at all satisfied to 5 = completely satisfied), grief (Texas Revised Inventory of Grief (TRIG)), optimism (Life Orientation Test - Revised) and resilience (The Resilience Scale). ANCOVA and multivariate linear regression were used to analyze the data. RESULTS: Family members experienced significantly lower satisfaction in MCU (mean = 3.69) relative to other settings (means of 3.90 [MCU], 4.14 [ICU], and 4.00 [PCU]; F (3371) = 8.30, p = .000). Statistically significant differences were also observed for CANHELP subscales of "doctor and nurse care", "illness management", "health services" and "communication". The regression model explained 18.9% of the variance in the CANHELP total scale, and between 11.8% and 27.8% of the variance in the subscales. Explained variance in the CANHELP total score was attributable to the setting of care and psychological characteristics of family members (44%), in particular resilience. CONCLUSION: Findings suggest room for improvement across all settings of care, but improving quality in acute care and palliative care should be a priority. Resiliency appears to be an important psychological characteristic in influencing how family members appraise care quality and point to possible sites for targeted intervention.
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Aflicción , Familia/psicología , Percepción , Cuidado Terminal/normas , Anciano , Anciano de 80 o más Años , Análisis de Varianza , Canadá , Estudios Transversales , Femenino , Humanos , Pacientes Internos/estadística & datos numéricos , Masculino , Persona de Mediana Edad , Psicometría/instrumentación , Psicometría/métodos , Calidad de la Atención de Salud , Encuestas y Cuestionarios , Cuidado Terminal/psicologíaRESUMEN
AIMS AND OBJECTIVES: To synthesise concepts of distinct depressive-symptom trajectories in published studies by establishing a measurable standard and estimate the prevalence of recategorised trajectories for bereaved families of chronically ill patients. BACKGROUND: Grieving is a dynamic/individualised process. In studies treating depressive-symptom trajectories as heterogeneous, different criteria were used to identify distinct trajectories, resulting in inconsistent findings. DESIGN: A systematic review of research guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria. METHODS: Five databases were systematically searched since each one's launch through June 2015. Two reviewers independently extracted data and assessed study quality using the qualsyst evaluation tool. Distinct depressive-symptom trajectories were narratively synthesised based on depressive-symptom level, duration and improvement over time. The prevalence of recategorised depressive-symptom trajectories was recalculated from published data. RESULTS: We identified six studies, published in 1994-2012, that followed 56-301 bereaved families from eight months to five years. We synthesised five new distinct trajectories (prevalence in synthesised sample): 'endurance' (54·2%), 'resilience' (8·8%), 'transient reaction' (7·7%), 'chronic grief' (19·4%) and 'chronic depression' (9·9%). The 'endurance' group experienced low depressive symptoms throughout the bereavement process. The 'resilience' group had severe depressive symptoms when they first transitioned into bereavement, but quickly recovered. The 'transient reaction' group's distress lasted 7-12 months postbereavement, gradually returning to prebereavement levels. After bereavement, the chronic grief and depression groups experienced prolonged periods of depressive symptoms, which improved gradually only in the 'chronic grief' group. CONCLUSIONS: Most bereaved families endured their grief and adjusted, returning to prebereavement depressive-symptom levels within one year postloss (represented by our synthesised 'endurance', 'resilience' and 'transient reaction' groups), with only 9·9% suffering 'chronic depression'. RELEVANCE TO CLINICAL PRACTICE: Guided by the synthesised distinct trajectories of depressive symptoms, clinicians should identify bereaved families' depressive-symptom trajectories and provide suitable interventions to facilitate adjustment of those with chronic depressive symptoms.
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Enfermedad Crónica , Depresión/epidemiología , Progresión de la Enfermedad , Familia/psicología , Pesar , Depresión/diagnóstico , Trastorno Depresivo/diagnóstico , Trastorno Depresivo/epidemiología , Femenino , Humanos , Masculino , Prevalencia , Investigación Cualitativa , Resiliencia Psicológica , Factores de TiempoRESUMEN
Loss is an inevitable experience for humans for which grief is a natural response. Nurses must have an adequate understanding of grief and bereavement in order to be more sensitive to these painful emotions and to provide appropriate care to families who have lost someone they love deeply. This article introduces four important grief theories: Freud's grief theory, Bowlby's attachment theory, Stroebe and Schuts' dual process model, and Neiyemer's meaning reconstruction model. Freud's grief theory holds that the process of grief adaptation involves a bereaved family adopting alternative ways to connect with the death of a loved one and to restore their self-ego. Attachment theory holds that individuals who undergo grieving that is caused by separation from significant others and that triggers the process of grief adaptation will fail to adapt if they resist change. The dual process model holds that bereaved families undergo grief adaptation not only as a way to face their loss but also to restore normality in their lives. Finally, the meaning reconstruction model holds that the grief-adaptation strength of bereaved families comes from their meaning reconstruction in response to encountered events. It is hoped that these theories offer nurses different perspectives on the grieving process and provide a practical framework for grief assessment and interventions. Additionally, specific interventions that are based on these four grief theories are recommended. Furthermore, theories of grief may help nurses gain insight into their own practice-related reactions and healing processes, which is an important part of caring for the grieving. Although the grieving process is time consuming, nurses who better understand grief will be better able to help family members prepare in advance for the death of a loved one and, in doing so, help facilitate their healing, with a view to the future and to finally returning to normal daily life.