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1.
BMC Palliat Care ; 19(1): 40, 2020 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-32213170

RESUMEN

BACKGROUND: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. METHODS: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. RESULTS: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. CONCLUSIONS: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

2.
Gerontologist ; 2020 Jan 16.
Artículo en Inglés | MEDLINE | ID: mdl-31942997

RESUMEN

BACKGROUND AND OBJECTIVES: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home. RESEARCH DESIGN AND METHODS: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening. RESULTS: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare. DISCUSSION AND IMPLICATIONS: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

3.
BMC Palliat Care ; 18(1): 92, 2019 Oct 31.
Artículo en Inglés | MEDLINE | ID: mdl-31672131

RESUMEN

BACKGROUND: Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS: Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS: Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS: MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

4.
J Couns Psychol ; 66(6): 714-725, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31647284

RESUMEN

This study aimed to test the hypothesis that meaning making is a mediating process in the relationship between risk factors for prolonged grief disorder (PGD) and subsequent emergence of PGD symptomatology. A survey design was employed with prospective measurement of PGD. The following variables were assessed 2-12 months postloss among adults across North America and Europe (N = 357): (a) risk factors for PGD (insecure attachment, social support, neuroticism, violent loss, and spousal loss) and (b) meaning made. Meaning made was measured using the Grief and Meaning Reconstruction Inventory (GMRI) as well as using the Integration of Stressful Life Experiences-Short Form (ISLES-SF). At a 7-10-months follow-up (n = 171) symptoms of PGD were assessed. The mean age at the second assessment point was 44.3 years (SD = 16.1) and the majority of the sample identified as female (71.9%). Process analysis was employed to test a series of simple mediation models. When the GMRI was used as a measure of meaning, the indirect effect of each risk factor on PGD symptoms, as mediated by meaning made, was significant (95% CI). When the ISLES-SF was used to measure meaning, the indirect effect of each risk factor with the exception of violent loss was significant (95% CI). The study demonstrates that meaning making serves to mediate the adverse impact of multiple PGD risk factors on the development of PGD symptomatology. Specifically, the study suggests that PGD risk factors exacerbate symptoms of PGD by impeding the meaning-making process. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Asunto(s)
Pesar , Acontecimientos que Cambian la Vida , Negociación/psicología , Encuestas y Cuestionarios , Adulto , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Negociación/métodos , Estudios Prospectivos , Factores de Tiempo
5.
J Clin Psychol ; 75(6): 1047-1065, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30801707

RESUMEN

OBJECTIVE: To address the etiology of prolonged grief disorder (PGD) by examining whether rumination moderates the role of meaning-making in mediating the impact of PGD risk factors. METHOD: A survey assessing PGD risk factors (low social support, insecure attachment, violent loss, neuroticism, and loss of a spouse), meaning, and rumination was administered 2-12 months postloss among adults across North America and Europe (mean age = 44.3, 71.9% female). At a 7-10 months follow-up, symptoms of PGD were assessed (n = 171). RESULTS: When measuring meaning with the Grief and Meaning Reconstruction Inventory, the moderated mediation pathway was significant for each PGD-risk factor. However, when measuring meaning with the Integration of Stressful Life Experiences-Short Form, the pathway was significant for every risk factors except violent loss. CONCLUSIONS: Rumination appears to moderate meaning-making in the development of PGD symptomatology. These findings highlight rumination as a target for intervention with at-risk grievers.

6.
Health (London) ; 22(5): 451-468, 2018 09.
Artículo en Inglés | MEDLINE | ID: mdl-28552003

RESUMEN

Acute hospital units are a common location of death. Curative characteristics of the acute medical setting make it difficult to provide adequate palliative care; these characteristics include an orientation to life-prolonging treatment, an emphasis on routine or task-oriented care and a lack of priority on emotional engagement with patients. Indeed, research shows that dying patients in acute medical units often experience unmet needs at the end of life, including uncontrolled symptoms (e.g. pain, breathlessness), inadequate emotional support and poor communication. A focused ethnography was conducted on an acute medical ward in Canada to better understand how this curative/life-prolonging care environment shapes the care of dying patients. Fieldwork was conducted over a period of 10 months and included participant-observation and interviews with patients, family members and staff. On the acute medical ward, a 'logic of care' driven by discourses of limited resources and the demanding medical unit created a context of busyness. Staff experienced an overwhelming workload and felt compelled to create priorities, which reflected taken-for-granted values regarding the importance of curative/life-prolonging care over palliative care. This could be seen through the way staff prioritized life-prolonging practices and rationalized inconsistent and less attentive care for dying patients. These values influenced care of the dying through delaying a palliative approach to care, limiting palliative care to those with cancer and providing highly interventive end-of-life care. Awareness of these taken-for-granted values compels a reflective and critical approach to current practice and how to stimulate change.


Asunto(s)
Actitud Frente a la Muerte , Personal de Salud , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Anciano , Anciano de 80 o más Años , Antropología Cultural , Canadá , Emociones , Familia/psicología , Femenino , Hospitales , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa
7.
Palliat Support Care ; 15(6): 644-664, 2017 12.
Artículo en Inglés | MEDLINE | ID: mdl-28122656

RESUMEN

OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children]. METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings. RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items. SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.


Asunto(s)
Hermanos/psicología , Enfermo Terminal/psicología , Adolescente , Femenino , Grupos Focales , Humanos , Masculino , Psicometría/instrumentación , Psicometría/métodos , Investigación Cualitativa , Encuestas y Cuestionarios
8.
Palliat Support Care ; 15(1): 20-31, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-27230818

RESUMEN

OBJECTIVE: Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument. METHOD: In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings. RESULTS: Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory. SIGNIFICANCE OF RESULTS: Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.


Asunto(s)
Evaluación de Necesidades , Psicometría/normas , Hermanos/psicología , Adaptación Psicológica , Adolescente , Niño , Estudios de Cohortes , Femenino , Humanos , Masculino , Estudios Prospectivos , Psicometría/instrumentación , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
9.
Qual Health Res ; 27(5): 649-664, 2017 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26848080

RESUMEN

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents' individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents' relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.


Asunto(s)
Adaptación Psicológica , Aflicción , Pesar , Padres/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Apoyo Social
10.
Eur J Psychotraumatol ; 8(Suppl 6): 1503522, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-30128081

RESUMEN

Background: Prolonged Grief Disorder (PGD) is over-represented among those who have lost loved ones to violent causes. To tailor PGD interventions for this vulnerable population it is critical to examine the aetiology of PGD specifically in the context of violent death bereavement. Previous studies have suggested that violent loss increases symptoms of PGD by hindering the mourner's ability to make meaning of the death or its aftermath. However, these studies have relied on cross sectional data that preclude genuine prediction and have not differentiated among specific themes of meaning. Objective: This study aimed to identify specific themes of meaning that mediate the detrimental impact of violent loss on subsequent emergence of PGD symptomatology among the violently bereft. Method: A longitudinal, prospective design (N = 171) was used to assess violent loss and themes of meaning an average of six months post-loss allowing for prediction of PGD symptoms an average of eight months later. Results: Violent loss had a significant indirect effect on PGD symptomatology when meaning themes focusing on sense of peace and continuing bonds served as mediators. Conclusions: This study demonstrates the mediating role that specific meaning themes play in the development of PGD symptomatology following violent loss. These findings highlight the potential benefits of applying a meaning-based intervention approach with the violently bereft.

11.
Palliat Med ; 31(2): 120-129, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-27412257

RESUMEN

BACKGROUND: The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over time. AIM: To revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire-Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature. DESIGN: Data sets from eight studies were used (four studies originally used to develop the McGill Quality of Life Questionnaire, two to develop new McGill Quality of Life Questionnaire versions, and two with unrelated purposes). The McGill Quality of Life Questionnaire-Revised was developed using analyses of measurement invariance, confirmatory factor analysis, and calculation of correlations with the McGill Quality of Life Questionnaire's global quality of life item. SETTING/PARTICIPANTS: Data were from 1702 people with life-threatening illnesses recruited from acute and palliative care units, palliative home care services, and oncology and HIV/AIDS outpatient clinics. RESULTS: The McGill Quality of Life Questionnaire-Revised consists of 14 items (plus the global quality of life item). A new Physical subscale was created combining physical symptoms and physical well-being and a new item on physical functioning. The Existential subscale was reduced to four items. The revised Support subscale, renamed Social, focuses more on relationships. The Psychological subscale remains unchanged. Confirmatory factor analysis results provide support for the measurement structure of the McGill Quality of Life Questionnaire-Revised. The overall scale has good internal consistency reliability ( α = 0.94). CONCLUSION: The McGill Quality of Life Questionnaire-Revised improves on and can replace the McGill Quality of Life Questionnaire since it contains improved wording, a somewhat expanded repertoire of concepts with fewer items, and a single subscale for the physical domain, while retaining good psychometric properties.


Asunto(s)
Cuidados Paliativos/psicología , Calidad de Vida , Encuestas y Cuestionarios/normas , Cuidado Terminal/psicología , Adulto , Anciano , Análisis Factorial , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados
12.
J Fam Nurs ; 22(3): 392-418, 2016 08.
Artículo en Inglés | MEDLINE | ID: mdl-27364869

RESUMEN

Caring culture is a concept embodying the perceptions and caring practices of caregivers, acknowledging the unique role of cultural beliefs in shaping behavior. A qualitative descriptive study with 13 caregivers of adult family members with a cancer diagnosis in Japan was conducted to gain insight into perceptions and experiences surrounding caregiving. Several major categories were identified, representing rarely reported cultural constructs of high cultural value for the Japanese: On-repayment for what the patient has given, Caregiving as performing a socially expected role, Enryo/meiwaku-restraint in asking for help, Family decision making reflecting strong bonds, Omoiyari-empathizing with the patient's feelings, and Inori-praying to myriad gods and ancestors. The Japanese cultural construct of ie (the strong relationship to family lineage and spiritual connection to past and future generations) is helpful in understanding these categories. Invisible yet powerful cultural constructs permeated caregiving practices. Insights from Japanese cultural concepts and beliefs may foster sensitivity and individualized care in diverse settings, cultures, and societies.


Asunto(s)
Cuidadores , Características Culturales , Neoplasias/enfermería , Condiciones Sociales , Adulto , Familia , Humanos , Japón , Investigación Cualitativa
13.
BMJ Support Palliat Care ; 5 Suppl 1: A3, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25960520

RESUMEN

BACKGROUND: Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. AIM: To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD: A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS: Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION: Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.

14.
Death Stud ; 39(7): 411-21, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25674830

RESUMEN

More effective psychosocial interventions that target uncomplicated bereavement are needed for those actively seeking support. The objective of this study was to assess the feasibility of evaluating a unique meaning-based group counseling (MBGC) intervention with a randomized controlled trial (RCT) design. Twenty-six bereft individuals were randomly assigned to either MBGC or a control bereavement support group. Twenty participants (11 experimental, nine control) completed all aspects of the study including self-report measures at baseline, postintervention, and 3-month follow-up of meaning in life, anxiety, depression, and grief. Results support the feasibility of an RCT with MBGC.


Asunto(s)
Cuidados Paliativos al Final de la Vida/métodos , Psicoterapia de Grupo/métodos , Aflicción , Consejo/métodos , Estudios de Factibilidad , Femenino , Cuidados Paliativos al Final de la Vida/psicología , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Escalas de Valoración Psiquiátrica
15.
Chronic Illn ; 11(1): 44-55, 2015 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-25475415

RESUMEN

PURPOSE: The study reported herein sought to better understand how patients with multi-morbid, chronic illness-who receive care in institutions designed for treatment of acute illness-experience and engage in health-related decisions. METHODS: In an urban Canadian teaching hospital, we studied the interactions of six hemodialysis patients and 11 of the health professionals involved in their care. For 1 year (September 2009 to September 2010), we conducted ethnographic observation and interviews of six cases each comprising one hemodialysis patient and various health professionals including medical specialists, nurses, a social worker, and a dietician. RESULTS: We found that the ubiquity and complexity of health-related decision-making in the lives of these patients suggests the need for a more holistic interpretation of health-related decision-making. DISCUSSION: We propose an interpretation of decision-making as an ongoing process of integrating illness and life; as frequently open-ended, cumulative, and relational; and as fundamentally shaped by the fragmented delivery of care for patients with multiple morbidities. CONCLUSION: Our understanding of decision-making suggests that people living with complex chronic illness need to receive care from institutions that recognize and address their multi-morbidity as a whole illness that is constantly being integrated into the life of a whole person.


Asunto(s)
Toma de Decisiones , Salud Holística , Fallo Renal Crónico/psicología , Adulto , Anciano , Canadá , Enfermedad Crónica , Comorbilidad , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad
16.
Iran J Cancer Prev ; 7(1): 28-34, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25250145

RESUMEN

BACKGROUND: Being diagnosed with cancer has major impacts on a patient's life. This study was conducted to explore how specific daily activities of patients change as a result of cancer diagnosis or its treatment and how these patients feel about such changes. METHODS: This was a cross-sectional descriptive study. Cancer patients referred to our clinics and by completing a questionnaire, they reported their daily activities and how they changed after diagnosis. A total of 201 patients in Canada and 167 patients in Iran completed the questionnaire. The research setting was the outpatient cancer clinics of the Jewish General Hospital in Montreal, Canada (February to April 2008) and Imam Reza Hospital and Ghaem Hospital in Mashhad, Iran (March to August 2008). RESULTS: More than 40 percent of the patients reported changes after the diagnosis in at least 8 out of 22 daily activities listed in the questionnaire. While a negative perception towards the changes was more common, some patients also perceived some changes as positive. More than half of the participants (56.9%) who were employed at the time of diagnosis experienced changes in the amount or type of their paid work after being diagnosed with cancer. CONCLUSION: The impact of a cancer diagnosis and treatment on a patient's daily activities is drastic. There is a need to provide support and interventions to help patients maintain daily activities they need and/or like. Further studies are needed to better understand the nature of such interventions.

17.
Death Stud ; 38(1-5): 137-44, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-24524541

RESUMEN

A growing body of scholarship has evaluated the usefulness of meaning-based theories in the context of bereavement counseling. Although scholars have discussed the application of meaning-based theories for individual practice, there is a lack of inquiry regarding its implications when conducting bereavement support groups. The objective of this article is to bridge meaning-based theories with bereavement group practice, leading to a novel intervention and laying the foundation for future efficacy studies. Building on recommendations specified in the literature, this article outlines the theoretical paradigms and structure of a short-term meaning-based group counseling intervention for uncomplicated bereavement.


Asunto(s)
Aflicción , Consejo/métodos , Psicoterapia de Grupo/métodos , Humanos , Teoría Psicológica
18.
J Psychosoc Oncol ; 32(1): 94-111, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-24428253

RESUMEN

Pain requiring treatment is experienced by many cancer patients at the end of life. Family caregivers are often directly implicated in pain management. This article highlights areas of psychosocial concern for family caregivers managing a family member's cancer pain at home as they engage in pain management processes. This article is based on the secondary analysis, guided by interpretive description, of data collected for a grounded theory study that explored the processes used by family caregivers to manage cancer patients' pain in the home. Interviews and field notes from 24 family caregiver interviews were examined to identify areas of family caregiver psychosocial distress. The analysis revealed that family caregivers experienced distress at different phases of the pain management process. Sources of distress for caregivers included feeling as though they were "in a prison" (overwhelmingly responsible), "lambs to slaughter" (unsupported), and "flying blind" (unprepared). In addition, family caregivers expressed distress when witnessing their loved one in pain and when pain crises invoked thoughts of death. In sum, family caregivers managing a loved one's cancer pain at home are at risk for psychosocial distress. This study identified four key sources of distress that can help health care professionals better understand the experiences of these family caregivers and tailor supportive interventions to meet their needs. Knowledge about sources of distress can help healthcare professionals understand the experiences of these family caregivers and tailor supportive interventions to meet their needs.


Asunto(s)
Cuidadores/psicología , Atención Domiciliaria de Salud/psicología , Neoplasias/terapia , Manejo del Dolor/psicología , Cuidados Paliativos/psicología , Estrés Psicológico/etiología , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores/estadística & datos numéricos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/complicaciones , Dolor/etiología , Investigación Cualitativa
20.
J Pain Symptom Manage ; 46(2): 289-97, 2013 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-23102756

RESUMEN

CONTEXT: The recently developed Canadian Health Care Evaluation Project (CANHELP) questionnaire, which can be used to assess both patient and family satisfaction with end-of-life care, takes 40-60 minutes to complete. The length of the interview may limit its uptake and clinical utility; a shorter version would make its use more feasible. OBJECTIVES: The purpose of this study was to develop and validate a shorter version of the CANHELP questionnaire. METHODS: Data were collected using a cross-sectional survey of patients with advanced medical diseases and their family members. Participants completed the long version of CANHELP, a global rating of satisfaction with care (GRS), the FAMCARE scale (family members only), and a quality-of-life (QOL) questionnaire. We reduced the items on the long version based on their relationship to the GRS, the frequency of missing data, the distribution of responses, the redundancy of the items, and focus groups with frontline users. With the remaining items, we assessed internal consistency using Cronbach's alpha, and evaluated construct validity by describing the correlation of the new CANHELP Lite with the full version of CANHELP, GRS, FAMCARE, and the QOL questionnaire scores. RESULTS: A total of 363 patients and 193 family members participated in this study. The patient version was reduced from 37 items to 20 items and the caregiver version was reduced from 38 items to 21 items. Cronbach's alphas ranged from 0.68 to 0.93 for all domains of both the patient and caregiver questionnaires. We observed a high degree of correlation between CANHELP Lite domains and overall scores and the same domains and overall scores for the full version of CANHELP. In addition, we observed moderate to strong correlation between the CANHELP Lite overall satisfaction scores and the GRS questions. There was moderate correlation between the overall family member CANHELP Lite score and overall FAMCARE score (r = 0.45) and this was similar to the correlation between the full version of CANHELP and FAMCARE scores (r = 0.41). CANHELP Lite correlated more strongly with the QOL subscale on health care than the other QOL subscales. CONCLUSION: The CANHELP Lite questionnaire is a valid and internally consistent instrument to measure satisfaction with end-of-life care.


Asunto(s)
Cuidadores/estadística & datos numéricos , Cuidados Paliativos/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Calidad de Vida , Encuestas y Cuestionarios , Cuidado Terminal/estadística & datos numéricos , Anciano , Canadá/epidemiología , Femenino , Humanos , Masculino , Reproducibilidad de los Resultados , Sensibilidad y Especificidad
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