Cancer Cachexia Care: The Contribution of Qualitative Research to Evidence-Based Practice

Background: Despite its prevalence and prognostic impact, primary cachexia is not well understood. Its potential to cause considerable psychological stress indicates the need for qualitative research to help understand the perspectives of those affected.

Objective: The aims of this study were to describe the perspectives of patients with primary cachexia, of their relatives, and of the healthcare professionals involved in their care and to demonstrate how this evidence can be applied in practice at 4 different levels of application ranging from empathy to coaching.

Methods: A review of the qualitative literature and empirical qualitative investigation was used to understand the experiences of patients and relatives and the perspectives of professionals.

Results: The main worries expressed by patients and relatives concerned appetite loss, changing appearance, prognosis, and social interaction. We also describe their coping responses and their views of professionals’ responses. The main concerns of professionals related to poor communication, lack of clinical guidance, and lack of professional education.

Conclusions: Understanding patients’, families’, and professionals’ perspectives, and mapping that understanding onto what we know about the trajectory and prognosis of the condition, provides the evidence base for good practice. Qualitative research has a central role to play in providing the knowledge base for the nursing care of patients with cachexia.

Implications for Practice: The evidence provided can improve nurses’ insight and assist them in assessment of status, the provision of guidance, and coaching. There is a need for the development of a holistic, information-based integrated care pathway for those with cancer cachexia and their families.

The contribution of the United Nations Convention on the Rights of the Child to understanding and promoting the interests of young people making the transition from care to adulthood

The United Nations Convention on the Rights of the Child (UNCRC) acknowledges that young people without parental care are entitled to special support and assistance from the State. In detailing their expectations, the UN Committee have issued Guidelines for the Alternative Care of Children which recognise that State parties have a number of responsibilities towards care leavers. The paper explores how the UNCRC reporting process, and guidelines from the Committee outlining how States should promote the rights of young people making the transition from care to adulthood, can be used as an instrument to track global patterns of change in policy and practice. Content analysis of State Party Reports and Concluding Observations from 15 countries reveals that to date there has been limited engagement with understanding and promoting the needs of this group in the reporting process; although where a government is committed to developing legislation and practice then this does find its way into their national reports. Data supplied by affiliates of the International Research Network on Transitions to Adulthood from Care (INTRAC) reveals that national concerns, political ideology, public awareness, attitudes and knowledge of the vulnerability of care leavers influence service responses to protect and promote the rights of this group and the attention afforded to such issues in reports to the Committee. Findings also suggest that global governance is not simply a matter of top down influence. Future work on both promoting and monitoring of the impact of the UNCRC needs to recognise that what is in play is the management of a complex global/national dynamic with all its uneven development, levels of influence and with a range of institutional actors involved.

Experiences of fathering a baby admitted to neonatal intensive care: A critical gender analysis

More fathers than ever before attend at the birth of their child and, internationally, there is a palpable pressure on maternity and neonatal services to include and engage with fathers. It is, thus, more important than ever to understand how fathers experience reproductive and neonatal health services and to understand how fathers can be successfully accommodated in these environments alongside their partners. In this paper we advance a theoretical framework for re-thinking fatherhood and health services approaches to fatherhood based on Critical Studies of Men and Masculinities (CSM). We illustrate the importance of this feminist-informed theoretical approach to understanding the gendered experiences of fathers in a Neonatal Intensive Care Unit (NICU) setting. Using a longitudinal follow-up research design, with two data collection points, a total of 39 in-depth semi-structured interviews was conducted with 21 fathers of infants admitted to NICU between August 2008 and December 2009. The findings demonstrate: (i) ways in which men are forging new gendered identities around the birth of their baby but, over time, acknowledge women as the primary caregivers; (ii) how social class is a key determinant of men’s ability to enact hegemonic forms of ‘involved fatherhood’ in the NICU, and; (iii) how men also encounter resistance from their partners and health professionals in challenging a gender order which associates women with the competent care of infants. An understanding of these gendered experiences operating at both individual and structural levels is critical to leading change for the inclusion of fathers as equal parents in healthcare settings. © 2012 Elsevier Ltd. All rights reserved.

Moral distress experienced by health care professionals who provide home-based palliative care

Health care providers regularly encounter situations of moral conflict and distress in their practice. Moral distress may result in unfavorable outcomes for both health care providers and those in their care. The purpose of this study was to examine the experience of moral distress from a broad range of health care occupations that provide home-based palliative care as the initial step of addressing the issue. A critical incident approach was used in qualitative interviews to elicit the experiences on moral distress from 18 health care providers drawn from five home visiting organizations in south central Ontario, Canada. Most participants described at least two critical incidents in their interview generating a total of 47 critical incidents. Analyses of the critical incidents revealed 11 issues that triggered moral distress which clustered into three themes, (a) the role of informal caregivers, b) challenging clinical situations and (c) service delivery issues. The findings suggest that the training and practice environments for health care providers need to be designed to recognize the moral challenges related to day-to-day practice.

Moving to evidence-based practice in long-term care:the role of a Best Practise Resource Centre in two long-term care settings.

In this article, the authors provide an overview on the development of a Long-Term Care Best Practise Resource Centre. The results of both a feasibility study and the outcomes of a 1-year demonstration project are presented. The demonstration project involved a hospital as the information service provider and two demonstration sites, a home care service agency and a nursing home that used the services of the Centre. The goals of the Centre were threefold: provide access to literature for staff in long-term care (LTC) settings; improve the information management skills of health care providers; and support research and the integration of best practices in LTC organizations. The results of the pilot study contributed to the development of a collaborative information access system for LTC clinicians and managers that provides timely, up-to-date information contributing to improving the quality of care for adults receiving LTC. Based on this demonstration project, strategies for successful innovation in LTC are identified.

Resource utilization and cost analyses of home-based palliative care service provision:The Niagara West End-of-Life Shared-Care Project

Background: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. Aim: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. Design: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Results: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 CAN) were 1,625,658.07 - or 17,112.19 per patient/117.95 per patient day. Conclusion: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations. © 2012 The Author(s).

Evaluating the effectiveness of community-based dementia care networks:The Dementia Care Networks' Study

Purpose: The Dementia Care Networks' Study examined the effectiveness of four community-based, not-for-profit dementia networks. The study involved assessing the relationship between the types of administrative and service-delivery exchanges that occurred among the networked agencies and the network members' perception of the effectiveness of these exchanges. Design and Methods: With the use of a case-study method, the evolution, structure, and processes of each network were documented. Social network analysis using a standardized questionnaire completed by member agencies identified patterns of administrative and clinical exchanges among networked agencies. Results: Differences were found between the four networks in terms of their perceptions of service-delivery effectiveness; perceptions of administrative effectiveness did not factor significantly. Exchanges between groups of agencies (cliques) within each of the four networks were found to be more critical than those between individual agencies within each network. Implications: Integration-measured by the types of exchanges within as opposed to across networks-differentiated the four networks studied. This research contributes to our understanding of the use of multiple measures to evaluate the inner workings of service delivery and their impact on elder health and elder health care. Copyright 2005 by The Gerontological Society of America.

Reaching common ground:A patient-family-based conceptual framework of quality EOL care

Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families. © 2005 Centre for Bioethics, IRCM.

The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and c. ulturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

Evidence-Based Clinical Pathways To Manage Urinary Tract Infections in Long-Term Care Facilities:A Qualitative Case Study Describing Administrator and Nursing Staff Views

Objectives: This article examines the views of nursing staff and administrators in long-term care facilities (LTCFs) regarding a clinical pathway for managing urinary tract infections (UTIs) in LTCF residents. Design: A qualitative (case study) design was used. Setting: Data were collected from 8 LTCFs in southern Ontario and 2 in Iowa enrolled in a larger randomized controlled trial of clinical pathway for managing UTIs in LTCF residents, conducted between September 2001 and March 2003. The clinical pathway, designed to more effectively identify, diagnose, and treat UTIs, and reduce inappropriate antibiotics use for asymptomatic UTIs, introduced 2 decision tools to determine when to order a urine culture and initiate antibiotic treatment for suspected UTIs. Participants: We conducted 19 individual interviews with administrators and 10 focus groups with 52 nurses. Findings: Nurses generally thought that the pathways were well developed and easy to use, and administrators believed they were an important educational resource. Barriers to their use varied by group-initial lack of buy-in from nurses (medical directors), additional work (directors of nursing), and the need to change the protocol to exclude certain residents based on prior health conditions and/or pressure from physicians or families (nurses). Conclusions: Both administrators and staff, once familiar with a new clinical protocol to improve UTI management in LTCFs, generally supported its use. © 2007 American Medical Directors Association.

The palliative care education needs of nursing home staff

Background: Palliative care is delivered in a number of settings, including nursing homes, where staff often have limited training in palliative care. Aim: We explored the level of palliative care knowledge among qualified staff delivering end-of-life care in nursing home settings, to inform the development of an appropriate education and training programme. Design: An audit of the educational needs assessment was performed using an anonymous postal questionnaire sent to 528 qualified nursing staff within 48 nursing homes. Findings: In total, 227 questionnaires were returned giving a response rate of 43%. Results indicated that less than half the sample had obtained formal training in the area of pain assessment and management and less than a quarter had obtained training in non-malignant conditions. Registered nurses in this study reported a lack of awareness of palliative care principles or national guidelines. Conclusion: Qualified nursing home staff agree that palliative care is a valuable model for care in their setting. There are clear opportunities for improvement in nursing home care, based on education and training in palliative care. Results also support the need for enhanced liaison between nursing homes and specialist palliative care services. © 2006 Elsevier Ltd. All rights reserved.

Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial

BACKGROUND: Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence-based psychological support initiatives are lacking.
AIM: The objective of this study was to prepare caregivers for the role of supporting a patient with advanced cancer receiving home-based palliative care by offering a one-to-one psycho-educational intervention. We hypothesised that primary family caregivers who participated in the intervention would report decreased psychological distress (primary outcome), fewer unmet needs and increased levels of perceived preparedness, competence and positive emotions.
METHODS: A three-arm randomised controlled trial was conducted comparing two versions of the intervention (one face-to-face visit versus two visits) plus standard care to a control group (standard care) across four sites in Australia.
RESULTS: A total of 298 participants were recruited; 148 were in the Control condition, 57 in Intervention 1 (one visit) and 93 in Intervention 2 (two visits). Relative to participants in the control group; the psychological well-being of participants in the intervention condition was improved by a small amount but non-significantly. No significant reduction in unmet needs or improvements in positive aspects of caregiving amongst the intervention group were identified. However, the intervention demonstrated significant improvements in participants' levels of preparedness and competence for Intervention 2.
CONCLUSION/IMPLICATIONS: This research adds to accumulating body of evidence demonstrating that relatively short psycho-educational interventions can enable family caregivers to feel more prepared and competent in the role of supporting a dying relative. Further investigation is required to determine the longer term outcomes of such interventions. 

Home-based support for palliative care families:challenges and recommendations

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver's needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.