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1.
Clin Endocrinol (Oxf) ; 97(5): 643-653, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35274339

RESUMO

OBJECTIVE: To investigate the long-term outcomes and prognosis of thyrotoxicosis in a large number of patients in a single UK county (Leicestershire). DESIGN: Retrospective cohort analysis of 56,741 thyroid function test (TFT) results, treatment modalities and outcomes in a well-established virtual thyrotoxicosis clinic database. PATIENTS: One thousand four hundred and eighty-nine patients were included with a median length of follow-up of 10.9 years. The aetiology of thyrotoxicosis was autoimmune (85.9%), nodular (9.1%) and mixed (5.0%). Treatment modalities included antithyroid drugs (ATDs), radioiodine (RAI; 555 MBq fixed dose) and thyroidectomy. METHODS: We analysed both individual TFTs and groups of sequential TFTs on or after the same thyroid treatment(s), which we describe as 'phase of thyroid care' (POTC). Patients studied entered the virtual clinic between 1 January 1995 and 1 January 2010; we exported data on every TFT sample up to April 2020. RESULTS: ATD had been used in 99.2% (median 2, maximum seven courses) with long-term ATD (>2 years) in 48%. RAI and thyroidectomy were used more commonly with nodular and mixed aetiology. Overall, T4 was more often controlled than thyroid-stimulating hormone (TSH), and at the latest follow-up, T4 was normal in >96%, TSH in >79% and both in >76% of different aetiologies. The mean percentage control of T4 was 85% and TSH 50%; in long-term ATD courses, this improved to 89% and 62%, respectively. In the latest POTC, control of T4 and TSH was best in cases off treatment (95%/87%) and on T4 without ablative therapy (94%/72%), but was broadly similar in patients on long-term ATD (90%/68%), after RAI (92%/60%) or after thyroidectomy (91%/58%). After the first course of ATD, remission or hypothyroidism was seen in 47.3% autoimmune, 20.9% nodular and 32.5% mixed, with 90% relapses seen within 4 years. Relapse was more common in patients with ophthalmopathy, but there was no difference between the sexes. CONCLUSIONS: Thyrotoxicosis can be well controlled with minimal specialist clinic attendance using a software-supported virtual shared-care scheme. Long-term ATD appears to be a valid patient choice achieving TFT control comparable to that seen after RAI or surgery. In patients with autoimmune disease, relapse is more common in patients with ophthalmopathy, and hypothyroidism is common after RAI. In nodular disease, we found that spontaneous remission may occur.


Assuntos
Doença de Graves , Hipotireoidismo , Tireotoxicose , Antitireóideos/efeitos adversos , Doença de Graves/tratamento farmacológico , Humanos , Hipotireoidismo/tratamento farmacológico , Radioisótopos do Iodo/uso terapêutico , Recidiva , Estudos Retrospectivos , Tireotoxicose/tratamento farmacológico , Tireotropina/uso terapêutico , Resultado do Tratamento
2.
Qual Health Res ; 32(7): 1126-1138, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35574986

RESUMO

Providing palliative care can be both challenging and rewarding. It involves emotionally demanding work and yet research shows that burnout is lower than in other fields of health care. Spontaneous expressions of gratitude from patients and family members are not uncommon and are highly valued. This study explored the experience of Spanish palliative professionals who received expressions of gratitude from their patients and families. A phenomenological approach was used to better understand the role of receiving gratitude in participants' lives. Interviews were transcribed verbatim and a phenomenological approach to analysis was undertaken using macro-thematic and micro-thematic reflection. Two team members independently engaged in this reflection with an inductive approach. The analysis was shared and discussed at periodic meetings to identify the key themes and sub-themes of the gratitude experience. Ten palliative professionals were interviewed. Participants engaged in a process of recognizing, internalizing, and treasuring the expressions of gratitude which they then used for reflection and growth. These expressions were a powerful and deeply meaningful resource that the palliative professionals revisited over time. Receiving expressions of gratitude invited a stronger sense of the value of one's self and one's work that was motivational and protective, particularly during challenging times.


Assuntos
Família , Cuidados Paliativos , Família/psicologia , Humanos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa
3.
Ann Fam Med ; 18(2): 110-117, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32152014

RESUMO

PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.


Assuntos
Planejamento Antecipado de Cuidados , Tomada de Decisões , Internet , Participação do Paciente/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Canadá , Estudos Controlados Antes e Depois , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais , Atenção Primária à Saúde , Estudos Prospectivos , Inquéritos e Questionários
4.
Qual Health Res ; 30(2): 303-313, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31744378

RESUMO

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.


Assuntos
Cuidadores/psicologia , Tomada de Decisões , Técnicas de Apoio para a Decisão , Família/psicologia , Feminino , Humanos , Masculino , Cuidados Paliativos , Apoio Social
5.
Qual Health Res ; 30(8): 1143-1155, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-30539681

RESUMO

Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer (n = 22) that refines the theory of "Living Well with Chronic Illness" for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that "I am dying." Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.


Assuntos
Neoplasias , Doença Crônica , Humanos
6.
J Nurs Manag ; 27(2): 286-300, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30084234

RESUMO

AIM: To synthesize existing evidence regarding gratitude in health care relationships, with a specific focus on expressions of gratitude from patients and their families to health professionals, including their meaning and impact. BACKGROUND: Studying expressions of gratitude by patients and their families within the scope of health care is an innovative way of identifying the most valuable elements of care. EVALUATION: A scoping review of three data bases was conducted using the terms gratitude and health professionals (1984-2016). Data were extracted, analysed thematically and synthesized. KEY ISSUES: A total of 32 publications were identified, around half being opinions or reflections. Thematic analysis resulted in the identification of three themes: the characteristics of expressions of gratitude, the focus of expressions of gratitude and the effect of gratitude on health professionals. CONCLUSIONS: Expressions of gratitude by patients and their families may have an important personal and professional effect on health professionals that is long lasting. A systematic study of its effect is needed. IMPLICATIONS FOR NURSING MANAGEMENT: Gratitude from patients and their families may contribute to motivation and retention among health professionals. Gratitude can be nurtured and is associated with a healthy work environment.


Assuntos
Pessoal de Saúde/psicologia , Pacientes/psicologia , Relações Profissional-Paciente , Comportamento Social , Humanos , Qualidade da Assistência à Saúde/normas
7.
Support Care Cancer ; 26(3): 853-860, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28929291

RESUMO

PURPOSE: The purpose of this study was to explore the acceptability, applicability, and understandability of a promising advance care planning (ACP) web-based resource for use with oncology patients, and determine whether revisions to the website would be necessary before implementation into oncology care. The resource is called PREPARE ( www.prepareforyourcare.org ) and it had not been tested for use within oncology, but had previously been shown to influence the readiness of older, community-dwelling adults to engage in ACP behaviors. METHODS: This qualitative descriptive study included participants receiving cancer medications and one participant on watchful waiting post-chemotherapy (n = 21). Data were collected via cognitive interviewing, followed by a brief semi-structured interview to gather a meaningful account of the participants' experience with PREPARE. Content analysis resulted in a comprehensive summary of what participants liked and did not like about the resource, as well as suggestions for change. RESULTS: Overall, participants agreed PREPARE was acceptable, applicable, and understandable for cancer patients. A small number of participants had difficulty with the life-limiting language found within the website and this requires follow-up to determine whether the language causes distress or disengagement from ACP. These findings extend our understanding of barriers to engagement in ACP that appear unique to cancer patients receiving active treatment. CONCLUSIONS: Results indicated that PREPARE is a reflective, capacity-building ACP resource that was acceptable, applicable, and understandable for use in oncology. These findings offer direction for both research and practice.


Assuntos
Planejamento Antecipado de Cuidados/normas , Oncologia/métodos , Neoplasias/terapia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade
8.
Support Care Cancer ; 25(4): 1229-1236, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27924357

RESUMO

PURPOSE: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. METHOD: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. RESULTS: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. CONCLUSIONS: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.


Assuntos
Cuidadores/psicologia , Serviços de Assistência Domiciliar , Neoplasias/enfermagem , Cuidados Paliativos/métodos , Doente Terminal/psicologia , Adulto , Morte , Família , Feminino , Humanos
9.
BMC Med Educ ; 17(1): 257, 2017 Dec 16.
Artigo em Inglês | MEDLINE | ID: mdl-29246258

RESUMO

BACKGROUND: Medical Schools are challenged to improve palliative care education and to find ways to introduce and nurture attitudes and behaviours such as empathy, patient-centred care and wholistic care. This paper describes the curriculum and evaluation results of a unique course centred on palliative care decision-making but aimed at introducing these other important competencies as well. METHODS: The 20 h-long optional course, presented in an art museum, combined different learning methods, including reflections on art, case studies, didactic sessions, personal experiences of faculty, reflective trigger videos and group discussions. A mixed methods approach was used to evaluate the course, including a) a post-course reflective exercise; b) a standardized evaluation form used by the University for all courses; and c) a focus group. RESULTS: Twenty students (2nd to 6th years) participated. The course was rated highly by the students. Their understanding of palliative care changed and misconceptions were dispelled. They came to appreciate the multifaceted nature of decision-making in the palliative care setting and the need to individualize care plans. Moreover, the course resulted in a re-conceptualization of relationships with patients and families, as well as their role as future physicians. CONCLUSIONS: Palliative care decision-making therefore, augmented by the visual arts, can serve as a vehicle to address several competencies, including the introduction of competencies related to being patient-centred and empathic.


Assuntos
Estágio Clínico , Tomada de Decisão Clínica , Empatia , Cuidados Paliativos , Assistência Centrada no Paciente , Estudantes de Medicina/psicologia , Arte , Estágio Clínico/normas , Feminino , Humanos , Masculino , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Assistência Centrada no Paciente/normas , Relações Médico-Paciente , Projetos Piloto , Adulto Jovem
10.
Qual Health Res ; 27(4): 447-461, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28682734

RESUMO

Chronic illness is a global issue of escalating importance. While prevention, control, and management of chronic disease are imperative, it is also critical to shift our focus away from illness and toward living. In particular, attention needs to focus on living well despite illness. This article reports a grounded theory study with 43 members from 17 families who perceived they were managing well with serious chronic illnesses. The theory that captures the circular, iterative healing process of moving on is comprised of five phases: the fight, accepting, living with the chronic illness, sharing the experience, and reconstructing life. Families moved on through the process and moved on over time toward healing where they lived well alongside chronic illness. Family issues associated with each phase are identified as well as implications for health care providers. The theory provides a way of conceptualizing wellness in illness that supports patient- and family-centered care.


Assuntos
Adaptação Psicológica , Doença Crônica/psicologia , Família/psicologia , Cuidadores/psicologia , Teoria Fundamentada , Humanos , Assistência Centrada no Paciente , Pesquisa Qualitativa
11.
J Cancer Educ ; 32(2): 301-307, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26386594

RESUMO

Despite evidence that Goals of Care (GOC) discussions should occur early in the disease trajectory, the majority occur close to end of life. In a pilot, oncologists routinely initiated GOC discussions with all patients in their everyday ambulatory practice. Following the pilot, 9 of 12 eligible oncologists participated in semi-structured interviews about their experiences. Analysis resulted in the identification of seven principles of good GOC discussions embedded in the oncologists' interviews, four barriers to engaging in GOC discussions and foundational education needs. Participants believed that the appropriate trigger for a GOC discussion is a diagnosis of advanced cancer, not simply a diagnosis of cancer, and supported the importance of selective and strategic targeting of GOC discussions. The findings have informed the development of an education-based model for culture change within a province-wide cancer care system.


Assuntos
Progressão da Doença , Oncologia , Oncologistas/psicologia , Planejamento de Assistência ao Paciente , Adulto , Planejamento Antecipado de Cuidados , Feminino , Humanos , Entrevistas como Assunto , Masculino , Cuidados Paliativos
12.
Int J Equity Health ; 13: 114, 2014 Dec 12.
Artigo em Inglês | MEDLINE | ID: mdl-25495141

RESUMO

Considerations of how gender-related factors influence smoking first appeared over 20 years ago in the work of critical and feminist scholars. This scholarship highlighted the need to consider the social and cultural context of women's tobacco use and the relationships between smoking and gender inequity. Parallel research on men's smoking and masculinities has only recently emerged with some attention being given to gender influences on men's tobacco use. Since that time, a multidisciplinary literature addressing women and men's tobacco use has spanned the social, psychological and medical sciences. To incorporate these gender-related factors into tobacco reduction and cessation interventions, our research team identified the need to clarify the current theoretical and methodological interpretations of gender within the context of tobacco research. To address this need a scoping review of the published literature was conducted focussing on tobacco reduction and cessation from the perspective of three aspects of gender: gender roles, gender identities, and gender relations. Findings of the review indicate that there is a need for greater clarity on how researchers define and conceptualize gender and its significance for tobacco control. Patterns and anomalies in the literature are described to guide the future development of interventions that are gender-sensitive and gender-specific. Three principles for including gender-related factors in tobacco reduction and cessation interventions were identified: a) the need to build upon solid conceptualizations of gender, b) the importance of including components that comprehensively address gender-related influences, and c) the importance of promoting gender equity and healthy gender norms, roles and relations.


Assuntos
Fatores Sexuais , Abandono do Hábito de Fumar/psicologia , Fumar/psicologia , Cultura , Feminino , Identidade de Gênero , Humanos , Relações Interpessoais , Masculino , Abandono do Hábito de Fumar/métodos
13.
Palliat Support Care ; 12(2): 127-38, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-23510757

RESUMO

OBJECTIVE: Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. METHOD: This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. RESULTS: Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. SIGNIFICANCE OF RESULTS: Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.


Assuntos
Cuidadores/psicologia , Competência Cultural , Família/psicologia , Cuidados Paliativos/normas , Qualidade da Assistência à Saúde , Serviços de Saúde Rural/normas , Apoio Social , Antropologia Cultural/métodos , Canadá , Relações Comunidade-Instituição , Humanos , Entrevistas como Assunto , Cuidados Paliativos/organização & administração , Relações Profissional-Família , Pesquisa Qualitativa , Serviços de Saúde Rural/organização & administração , População Rural , Recursos Humanos
14.
Health Sci Rep ; 7(7): e2204, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38974331

RESUMO

Background/Objectives: Transitions to and from Emergency Departments (EDs) can be detrimental to long-term care (LTC) residents and burden the healthcare system. While reducing avoidable transfers is imperative, various terms are used interchangeably including inappropriate, preventable, or unnecessary transitions. Our study objectives were to develop a conceptual definition of avoidable LTC-ED transitions and to verify the level of stakeholder agreement with this definition. Methods: The EXamining Aged Care Transitions study adopted an exploratory sequential mixed-method design. The study was conducted in 2015-2016 in 16 LTC facilities, 1 ED, and 1 Emergency Medical Service (EMS) in a major urban center in western Canada. Phase 1 included 80 participants, (healthcare aides, licensed practical nurses, registered nurses, LTC managers, family members of residents, and EMS staff). We conducted semistructured interviews (n = 25) and focus groups (n = 19). In Phase 2, 327 ED staff, EMS staff, LTC staff, and medical directors responded to a survey based on the qualitative findings. Results: Avoidable transitions were attributed to limited resources in LTC, insufficient preventive care, and resident or family wishes. The definition generated was: A transition of an LTC resident to the ED is considered avoidable if: (a) Diagnostic testing, medical assessment, and treatment can be accessed in a timely manner by other means; (b) the reasons for a transfer are unclear and the transition would increase the disorientation, pain, or discomfort of a resident, outweighing a clear benefit of a transfer; and (c) the transition is against the wishes expressed by the resident over time, including through informal and undocumented conversations. There was a high level of agreement with the definition across the four participant groups. Conclusions and Implications: To effectively reduce LTC resident avoidable transitions, stakeholders must share a common definition. Our conceptual definition may significantly contribute to improved care for LTC residents.

15.
BMC Geriatr ; 12: 75, 2012 Dec 14.
Artigo em Inglês | MEDLINE | ID: mdl-23241360

RESUMO

BACKGROUND: Changes in health status, triggered by events such as infections, falls, and geriatric syndromes, are common among nursing home (NH) residents and necessitate transitions between NHs and Emergency Departments (EDs). During transitions, residents frequently experience care that is delayed, unnecessary, not evidence-based, potentially unsafe, and fragmented. Furthermore, a high proportion of residents and their family caregivers report substantial unmet needs during transitions. This study is part of a program of research whose overall aim is to improve quality of care for frail older adults who reside in NHs. The purpose of this study is to identify successful transitions from multiple perspectives and to identify organizational and individual factors related to transition success, in order to inform improvements in care for frail elderly NH residents during transitions to and from acute care. Specific objectives are to: 1. define successful and unsuccessful elements of transitions from multiple perspectives; 2. develop and test a practical tool to assess transition success; 3. assess transition processes in a discrete set of transfers in two study sites over a one year period; 4. assess the influence of organizational factors in key practice locations, e.g., NHs, emergency medical services (EMS), and EDs, on transition success; and 5. identify opportunities for evidence-informed management and quality improvement decisions related to the management of NH - ED transitions. METHODS/DESIGN: This is a mixed-methods observational study incorporating an integrated knowledge translation (IKT) approach. It uses data from multiple levels (facility, care unit, individual) and sources (healthcare providers, residents, health records, and administrative databases). DISCUSSION: Key to study success is operationalizing the IKT approach by using a partnership model in which the OPTIC governance structure provides for team decision-makers and researchers to participate equally in developing study goals, design, data collection, analysis and implications of findings. As preliminary and ongoing study findings are developed, their implications for practice and policy in study settings will be discussed by the research team and shared with study site administrators and staff. The study is designed to investigate the complexities of transitions and to enhance the potential for successful and sustained improvement of these transitions.


Assuntos
Continuidade da Assistência ao Paciente/normas , Serviço Hospitalar de Emergência/normas , Pessoal de Saúde/normas , Instituição de Longa Permanência para Idosos/normas , Casas de Saúde/normas , Equipe de Assistência ao Paciente/normas , Idoso , Alberta/epidemiologia , Colúmbia Britânica/epidemiologia , Humanos , Qualidade da Assistência à Saúde/normas
16.
Palliat Support Care ; 10(2): 75-82, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22361348

RESUMO

OBJECTIVE: Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin. METHOD: Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison. RESULTS: Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP. SIGNIFICANCE OF RESULTS: Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as "unrealistic" as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.


Assuntos
Planejamento Antecipado de Cuidados , Família/psicologia , Esperança , Neoplasias Pulmonares/psicologia , Cuidados Paliativos/psicologia , Preferência do Paciente/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa
17.
J Fam Nurs ; 18(4): 467-90, 2012 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23007421

RESUMO

There is urgent need to effectively support the well-being of rural palliative family caregivers (FCGs). A mixed method study was conducted with 23 FCGs. Data collection included completion of an assessment questionnaire and semistructured interviews. The most prevalent needs identified by questionnaire were caring for the patient's pain, fatigue, body, and nourishment; FCG's fatigue and need for respite. Yet few FCGs wanted more attention to these needs by healthcare providers. FCGs resisted considering their own personal needs. Instead, they focused on needs related to providing care including to be(come) a palliative caregiver, be skilled and know more, navigate competing wishes, needs, demands, and priorities, and for "an extra pair of hands." Gaps in rural palliative services contributed to low expectations for assistance; reluctance to seek assistance was influenced by FCGs' resourcefulness and independence. Findings suggest that supporting FCGs will most likely be successful when framed in relation to their caregiving role.


Assuntos
Cuidadores , Cuidados Paliativos , População Rural , Adulto , Idoso , Cuidadores/psicologia , Pesquisa em Enfermagem Clínica , Enfermagem Familiar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Autocuidado , Apoio Social , Inquéritos e Questionários
18.
Nurs Philos ; 13(1): 46-55, 2012 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22176547

RESUMO

Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques of social justice. Hayek has likened social justice to a 'moral stone' arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro-level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice.


Assuntos
Cuidados Paliativos/ética , Filosofia em Enfermagem , Serviços de Saúde Rural/ética , Justiça Social , Humanos , Princípios Morais
19.
BMJ Support Palliat Care ; 12(e6): e777-e784, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30733208

RESUMO

OBJECTIVES: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness. METHODS: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values. RESULTS: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0-100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1-5 scale; N=61). CONCLUSIONS: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.


Assuntos
Planejamento Antecipado de Cuidados , Tomada de Decisões , Humanos , Idoso , Conflito Psicológico , Família
20.
Int J Equity Health ; 10: 60, 2011 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-22151578

RESUMO

INTRODUCTION: The importance of gender in understanding health practices and illness experiences is increasingly recognized, and key to this work is a better understanding of the application of gender relations. The influence of masculinities and femininities, and the interplay within and between them manifests within relations and interactions among couples, family members and peers to influence health behaviours and outcomes. METHODS: To explore how conceptualizations of gender relations have been integrated in health research a scoping review of the existing literature was conducted. The key terms gender relations, gender interactions, relations gender, partner communication, femininities and masculinities were used to search online databases. RESULTS: Through analysis of this literature we identified two main ways gender relations were integrated in health research: a) as emergent findings; and b) as a basis for research design. In the latter, gender relations are included in conceptual frameworks, guide data collection and are used to direct data analysis. CONCLUSIONS: Current uses of gender relations are typically positioned within intimate heterosexual couples whereby single narratives (i.e., either men or women) are used to explore the influence and/or impact of intimate partner gender relations on health and illness issues. Recommendations for advancing gender relations and health research are discussed. This research has the potential to reduce gender inequities in health.

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