A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.

BACKGROUND: Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. METHODS: A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. RESULTS: The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success.

Innovative Approaches to Involving Service Users in Palliative Care Social Work Education

Service user involvement in social work education is now a firmly established concept in UnitedKingdom.As a result, it is common practice for service users to occupy central roles the education and training of social work students and staff in both qualifying and postqualifying programmes. This paper describes an initiative, undertaken inNorthern Ireland, which compares two methods of user involvement employed with undergraduate and postqualifying social work students. In both situations the students firstly observed discussedDVDexcerpts of narratives from people affected by cancer and secondly observed live facilitated interview with a 25-year-old male service user who shared his experiences being diagnosedwith cancer at a young age.Understanding the social work role in palliative care is crucial as all social workers, regardless of practice context, will have some degree involvement in helping individuals and families to address end-of-life care issues. paper compares the findings of evaluations from two student groups which may help inform social work educators about the effectiveness of different teaching methods used achieve meaningful and effective user involvement with seldom heard groups.

Bereavement Assessment Practice in Hospice Settings: Challenges for Palliative Care Social Workers

The management and delivery of bereavement support services in palliative care settings presents practical and ethical challenges. A national survey, conducted in 2007, examined bereavement practice in ten Marie Curie hospices across the United Kingdom. This qualitative study was undertaken using semi-structured telephone interviews with Bereavement Service Leaders located in each hospice. Although findings revealed that bereavement services were in operation and had been reviewed in response to the National Institute for Clinical Excellence Guidance (2004), and all bereaved families were offered support, there was no standardisation of service delivery across sites. Multi-disciplinary team meetings facilitated shared decision-making for bereavement follow-up, and expanded and clarified documentation completed by nursing staff around the time of the patient’s death. However, there was ambiguity regarding professional ‘duty of care’ and agency responses to bereaved individuals who were suicidal. Questions were raised around clinical effectiveness, reliability and professional accountability. The study highlighted ethical issues centred on documentation, user participation and consent, and found staff training was variable across the 10 hospices. The findings have informed the development of a post-bereavement service model which has been subsequently implemented across Marie Curie Cancer Care.

The spirit of palliative practice:A qualitative inquiry into the spiritual journey of palliative care physicians

Objective: Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician-patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. Method: A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians. Results: Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. Significance of results: With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care. Copyright © Cambridge University Press 2010.

"they don't just disappear":Acknowledging death in the long-term care setting

Objective: The purpose of this study was to describe the value of a formal room blessing ritual held within a long-term care facility, from the perspectives of staff, residents, and family members. Method: A qualitative research study involving interviews with staff, residents, and family members was conducted to examine the perceived value of a room blessing ritual. Results: Twenty-four room blessing attendees participated in the study (nine staff, eight residents, and seven family members). Attendees felt that the room blessing provided an opportunity to formally acknowledge the death of the resident and their grief; the majority felt that this was a positive experience and that it provided an element of closure. Staff members and residents expressed their appreciation for the opportunity to connect with family members of the deceased to express their condolences during the ritual. Participants also identified the inclusivity of the ritual (i.e., an open invitation to all staff, residents, and family members) as a positive aspect that served as a reminder that others shared in their grief. Staff members felt that blessing the room for the new resident was an important component of the ritual, helping to bridge the gap between mourning and welcoming a new person. Staff, residents, and family members felt that the room blessing positively reflected the mission and values of the facility. The most highly valued aspect of the ritual for all attendees was the sharing of stories about the deceased to celebrate that person's life. Significance of results: Long-term care facilities need to recognize that formal supports to manage the bereavement needs of staff and residents, such as a room blessing ritual, should be incorporated into their model for managing end-of-life care, given the relationship between the emotional health of staff and the quality of care provided for residents. © 2012 Cambridge University Press.

Bolivian health and social care professionals' experiences of decision-making in oncology and palliative care

In the UK, end-of-life care strategies recommend patients and families are involved in decision making around treatment and care. In Bolivia, such strategies do not exist, and access to oncology services depends on finance, geography, education and culture. Compared to more developed countries, the delivery of oncology services in Latin America may result in a higher percentage of patients presenting with advanced incurable disease. The objective of this study was to explore decision-making experiences of health and social care professionals who cared for oncology and palliative care patients attending the Instituto Oncológico Nacional, Cochabamba (Bolivia). Patients were predominantly from the Quechua tradition, which has its own ethnic diversity, linguistic distinctions and economic systems. Qualitative data were collected during focus groups. Data analysis was conducted using Interpretative Phenomenological Analysis. Three interrelated themes emerged: (i) making sense of structures of experience and relationality; (ii) frustration with the system; and (iii) the challenges of promoting shared decision making. The study uncovered participants' lived experiences, emotions and perceptions of providing care for Quechua patients. There was evidence of structural inequalities, the marginalisation of Quechua patients and areas of concern that social workers might well be equipped to respond to, such as accessing finances for treatment/care, education and alleviating psychological or spiritual suffering.

Shared decision making in patients at risk of cancer: The role of domain and numeracy

Background
Shared decision making has become an integral part of medical consultation. Research has, however, reported wide differences in individuals' desires to be involved in the decision-making process, and these differences in preferences are likely to be the result of a number of factors including age, education and numeracy.

Objective
To investigate whether patients at genetic risk for cancer had preferences for shared decision making that differed depending on medical domain (general health vs. cancer) and whether decision preferences are linked to numeracy abilities.

Methods
Four hundred and seventy-six women who consented to participate in response to an email sent by a local branch of the U.S.-based Cancer Genetics Network (CGN) to its members. Participants completed the Control Preference Scale, as well as an objective and subjective numeracy scales.

Results
Decision domain (cancer vs. general health) was not associated with women's preferences for involvement in decision making. Objective and subjective numeracy predicted a preference for decision involvement in general, and only objective numeracy was predictive with regard to cancer.

Conclusion
Participants were equally likely to state they wanted to play an active, collaborative or passive role in both medical domains (general and cancer). High-numeracy participants were more likely to express a desire for an active role in general and in case they were diagnosed with cancer.

Practice implications
Health authorities' recommendations to clinicians to include patients in their medical decisions are supported by patients' desires, and clinicians should be cognizant of their patients' preferences as well as their numeracy skills.

General practitioners perceptions on advance care planning for patients living with dementia

BACKGROUND: Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care.

METHODS: A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented.

RESULTS: One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed.

CONCLUSION: Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.

The perceived impact of interprofessional information sharing on young people about their sexual health care

This article presents the results from an analysis of data from service providers and young adults who were formerly in state care about how information about the sexual health of young people in state care is managed. In particular, the analysis focuses on the perceived impact of information sharing between professionals on young people. Twenty-two service providers from a range of professions including social work, nursing and psychology, and 19 young people aged 18–22 years who were formerly in state care participated in the study. A qualitative approach was employed in which participants were interviewed in depth and data were analysed using modified analytical induction (Bogdan & Biklen, 2007). Findings suggest that within the care system in which service provider participants worked it was standard practice that sensitive information about a young person’s sexual health would be shared across team members, even where there appeared to be no child protection issues. However, the accounts of the young people indicated that they experienced the sharing of information in this way as an invasion of their privacy. An unintended outcome of a high level of information sharing within teams is that the privacy of the young person in care is compromised in a way that is not likely to arise in the case of young people who are not in care. This may deter young people from availing themselves of the sexual health services.

PREGNANCY-RELATED CHURN AND ACCESS TO CARE IN THE CONTEXT OF NARROW NETWORKS IN WASHINGTON STATE

Thesis (Master's)--University of Washington, 2016-03

Youth Living in Residential Care: Implications for Leisure and Identity

The purpose of this study was to explore the intersection of living in residential care, leisure engagement, and adolescent identity development. The investigation included the voices of six youth living in a residential care facility in southern Ontario. The data was collected through participant observations, semi-structured interviews, and document analysis. Moustakas’ (1994) modification of the Stevick-Colaizzi-Keen method was used to analyze the data. The findings determined that living in residential care is rife with dialectical tensions that impact leisure and identity. The youth shared poignant narratives of how living in residential care was a stigmatizing experience that left them feeling restricted and isolated. They also shared their struggles with finding autonomy in a secured facility and managing the violent discourses of their peers. This research contributes to a burgeoning body of literature that explores the experiences of youth living in out-of-home care. Implications for practice and future research are discussed.

Parental death as a vital conjuncture? Intergenerational care and responsibility following bereavement in Senegal

This article explores the ways that parental death represents a 'vital conjuncture' for Serer young people that reconfigures and potentially transforms intergenerational caring responsibilities in different spatial and temporal contexts. Drawing on semi-structured interviews with young people (aged 15-27), family members, religious and community leaders and professionals in rural and urban Senegal, I explore young people's responses to parental death. 'Continuing bonds' with the deceased were expressed through memories evoked in homespace, shared family practices and gendered responsibilities to 'take care of' bereaved family members, to cultivate inherited farmland and to fulfil the wishes of the deceased. Parental death could reconfigure intergenerational care and lead to shifts in power dynamics, as eldest sons asserted their position of authority. While care-giving roles were associated with agency, the low social status accorded to young women's paid and unpaid domestic work undermined their efforts. The research contributes to understandings of gendered nuances in the experience of bereavement and continuing bonds and provides insight into intra-household decision-making processes, ownership and control of assets. Analysis of the culturally specific meanings of relationships and a young person's social location within hierarchies of gender, age, sibling birth order and wider socio-cultural norms and practices is needed.

Communication in Smoking Cessation and Self-management : a study at Nurse-led COPD-clinics in Primary Health Care

ABSTRACTThe general aim of this thesis was to investigate behavioral change communication at nurse-led chronic obstructive pulmonary disease (COPD) clinics in primary health care, focusing on communication in self-management and smoking cessation for patients with COPD.Designs: Observational, prospective observational and experimental designs were used.Methods: To explore and describe the structure and content of self-management education and smoking cessation communication, consultations between patients (n=30) and nurses (n=7) were videotaped and analyzed with three instruments: Consulting Map (CM), the Motivational Interviewing Treatment Integrity (MITI) scale and the Client Language Assessment in Motivational Interviewing (CLAMI). To examine the effects of structured self-management education, patients with COPD (n=52) were randomized in an intervention and a control group. Patients’ quality of life (QoL), knowledge about COPD and smoking cessation were examined with a questionnaire on knowledge about COPD and smoking habits and with St. George’s Respiratory Questionnaire, addressing QoL. Results: The findings from the videotaped consultations showed that communication about the reasons for consultation mainly concerned medical and physical problems and (to a certain extent) patients´ perceptions. Two consultations ended with shared understanding, but none of the patients received an individual treatment-plan. In the smoking cessation communication the nurses did only to a small extent evoke patients’ reasons for change, fostered collaboration and supported patients’ autonomy. The nurses provided a lot of information (42%), asked closed (21%) rather than open questions (3%), made simpler (14%) rather than complex (2%) reflections and used MI non-adherent (16%) rather than MI-adherent (5%) behavior. Most of the patients’ utterances in the communication were neutral either toward or away from smoking cessation (59%), utterances about reason (desire, ability and need) were 40%, taking steps 1% and commitment to stop smoking 0%. The number of patients who stopped smoking, and patients’ knowledge about the disease and their QoL, was increased by structured self-management education and smoking cessation in collaboration between the patient, nurse and physician and, when necessary, a physiotherapist, a dietician, an occupational therapist and/or a medical social worker.Conclusion The communication at nurse-led COPD clinics rarely involved the patients in shared understanding and responsibility and concerned patients’ fears, worries and problems only to a limited extent. The results also showed that nurses had difficulties in attaining proficiency in behavioral change communication. Structured self-management education showed positive effects on patients’ perceived QoL, on the number of patients who quit smoking and on patients’ knowledge about COPD.

Torrenting values, feelings and thoughts : cyber nursing and virtual self care in a breast augmentation forum

Earlier research shows that breast augmentation is positively correlated with positive psychological states. The aim of this study was to explore the shared values, feelings, and thoughts within the culture of breast enlargement among women visiting Internet-based forums when considering and/or undergoing esthetic plastic surgery. The study used a netnographic method for gathering and analyzing data. The findings show that the women used the Internet forum to provide emotional support to other women. Through electronic postings, they cared for and nursed each others’ anxiety and feelings throughout the whole process. Apart from the process, another central issue was that the women's relationships were frequently discussed; specifically their relationship to themselves, their environment, and with the surgeons. The findings suggest that Internet forums represent a channel through which posters can share values, feelings, and thoughts from the position of an agent of action as well as from a position as the object of action. These dual positions and the medium endow the women with a virtual nursing competence that would otherwise be unavailable. By introducing the concept of torrenting as a means of sharing important self-care information, the authors provide a concept that can be further explored in relation to post modern self-care strategies within contemporary nursing theories and practice.