Palliative day care: a qualitative study of service users' experiences in the United Kingdom

In many countries, specialist palliative day care for patients with life-limiting conditions is provided by specific teams of professionals from a range of relevant disciplines. During 2006 to 2007, the day care services at a hospice in the U.K. were redesigned so that specialist palliative care sessions replaced the existing long-established, traditional day care model. The purpose of this study was to enhance the understanding of those aspects of the service that the users valued most (the "X-factor"). Qualitative data were collected via semistructured interviews with 29 patients and eight carers. These data were subjected to a framework analysis. The users of the service used poignant and powerful words to describe the special qualities that they valued, some phrasing it as the X-factor. The data are presented under three themes: the quality of the staff; the sense of community; and relationships. Of these, the relationships between and within the staff and patient groups held the greatest significance for the patients. Service providers need to recognize that opportunities for the formation of relationships between the patients, staff, and carers are of utmost importance when designing palliative day care services.     

The PRISMA Symposium 3: lessons from beyond Europe. why invest in research and service development in palliative care? An Australian perspective

Hospice and palliative care services need to be able to compete with finite health care resources. To compete for such funding, the sector needs to continuously improve the evidence base that demonstrates improved outcomes, or else funding will continue to be at the level of a "social good" rather than as services that deliver improved health outcomes. Three questions need to be answered for policy makers and health funders: 1) Why invest health care spending in hospice and palliative care?, 2) Why invest research monies in hospice and palliative care clinical research and health service development?, and 3) How can emerging evidence be more effectively implemented to improve patient outcomes? No single measure captures the net benefit of hospice and palliative care services. By patient-defined parameters, hospice and palliative care services have demonstrated benefits, including physical symptom control. To meet patients' concerns, greater emphasis needs to be placed on maintaining physical independence for a longer period of time. Targeted investment of research funding can deliver further improvements in patient outcomes and models of service delivery. Rigorous studies are feasible and necessary if each patient is going to receive the best possible support. Benchmarking and service development strategies can deliver improved patient outcomes. With routine point-of-care data collection and feedback loops to individual services, patient-valued outcomes and resourcing can be improved in hospice and palliative care. Public-good investments in hospice and palliative care research are vital to building the evidence base for improving the quality of care offered.     

End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.     

Mental health nursing students’ views on their readiness to address the physical health needs of service users on registration

There is substantial evidence that people (service users) living with a serious mental illness experience poorer physical health than the general population and die prematurely from life‐threatening illnesses. Mental health nurses are best placed to address the physical health needs of service users but evidence points to numerous challenges, including a deficit in their proficiency to meet these needs. Nurse education and mental health services are being reshaped to better equip nurses with the skill set to meet the care needs of service users. The aim of the present study was to gain an in‐depth insight into final‐year mental health nursing students’ views (MHNS) of their preparation to address the physical health needs of service users. Using a qualitative exploratory approach, the views of final‐year MHNS learning experiences of physical care were explored through a focus group and in‐depth interviews. The focus group generated broad issues, which were then explored in semistructured, individual interviews. The transcribed audio‐taped data were analysed using a framework approach to identify the emerging key themes. The themes identified were the comprehensiveness of physical care content, delivery and method of teaching, exposure to physical care in practice, and confidence to address physical health needs. The findings of the present study indicate that there is a need to enhance both the theoretical and practical components of preregistration education for MHNS on physical care.     

Attitudes of Homeless and Drug-Using Youth Regarding Barriers and Facilitators in Delivery of Quality and Culturally Sensitive Health Care

PROBLEM:  Major barriers to care included a lack of culturally competent, accessible care despite the proximity of numerous health service agencies serving homeless youth.
METHODS:  A qualitative approach using semistructured focus groups was used to assess the perspectives of 54 homeless and drug-using youth, aged 18–24 years, recruited from street- and shelter-based settings.
FINDINGS:  Substance use was perceived as an adaptive response to psychological pain and survival on the streets as well as a health risk and barrier to care.
CONCLUSIONS:  Facilitators to care and suggestions for improved health delivery and quality of care included utilization of health "mentors" to assist in navigating the medical system, cultural competency enhancements, improved amenities in clinic wait areas, and expanded pharmaceutical services.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

Perceptions of a service redesign by adults living with type 2 diabetes

Title.  Perceptions of a service redesign by adults living with type 2 diabetes.
Aim.  This article is a report of a study conducted to explore the perceptions of adults with type 2 diabetes towards the service redesign.
Background.  Diabetes is reaching epidemic proportions and the management of this chronic illness is changing in response to this challenge. In the United Kingdom, there is ongoing restructuring of healthcare services for people with chronic illnesses to ensure that their general health and clinical needs are met predominantly in primary care.
Method.  An explorative qualitative approach was used. Eight focus groups were conducted with 35 people with type 2 diabetes in one urban location between 2003 and 2004. Five focus groups were conducted with people who had recently experienced the restructured service and three groups with people who had up to 2 years' experience of the new service. Concurrent data collection and thematic analysis were conducted by three researchers and credibility and verification sought by feedback to participants.
Findings.  Five main themes were identified: impact of living with diabetes; understanding diabetes; drivers for organizational change; care in context and individual concerns. Participants identified issues for ongoing development of the service.
Conclusion.  People with type 2 diabetes appreciate their care management within the primary care setting where there has been investment in staff to deliver this care. Healthcare resources are required to support the development of staff and the necessary infrastructure to undertake management in primary care. Policy makers need to address the balance of resources between primary and secondary care.     

Community matrons: primary care professionals' views and experiences

Title.  Community matrons: primary care professionals' views and experiences.
Aim.  This article is a report of a study exploring how the role of the community matron is progressing and any barriers or facilitators to performing the role.
Background.  Long-term conditions are distressing for patients and costly for healthcare services. Government policy in western countries has increasingly focussed on more integrated and pro-active management of patients with multiple long-term conditions to maintain the ability of the aging population to function independently. The role of community matrons has been introduced in England in an attempt to address these issues.
Method.  A purposive sample of 31 health and social care professionals participated in five focus group discussions. Reported experiences of the community matron role by community matrons, district nurses, social workers and general practitioners were analysed according to the principles of grounded theory. Data were collected in 2007.
Findings.  The community matron role was seen as effective in meeting the medical and social needs of patients. This was achieved through patient education, developing patients' self-management of their health conditions and monitoring their social needs. Potential barriers to success of the role were associated with lack of role definition prior to its introduction.
Conclusion.  It is unclear whether the role is financially viable in its current form. Further research is required to examine differing models for implementing the role and judging its effectiveness in bridging the primary-secondary care interface.     

Typology of High Users of Health Services Among a Rural Medicaid Population

ABSTRACT Objectives: To identify a typology for high system users among a rural Medicaid population that could assist policy makers and providers in better and more efficiently serving this population.
Design and Sample: Exploratory secondary data analysis of a large integrated Medicaid database in a western state. Five hundred and thirty-nine Medicaid recipients receiving 2 or more state services and receiving 10 or more unique medications.
Measures: Data analysis examining health care use, medication use, and demographic characteristics using SAS to identify patterns of use of services in the population. Results were confirmed with a statewide sample of 2,287 Medicaid users.
Results: 3 characteristics—(1) use of 36 or more health care services in a year; (2) no gap in health care service use over the entire year; and (3) use of >12 health care services in 1 month—describe high-risk groups of Medicaid users.
Conclusions: Public health nurses, particularly as case managers and program planners, can look at service use patterns through client histories and their own agency records, in order to identify high-risk groups who may benefit the most from programs that address their support, education, and coordination of health care needs.     

Diversity and challenges in the management of maternity care for migrant women

lyberg a., viken b., haruna m. & severinsson e. (2012) Journal of Nursing Management 20, 287–295
Diversity and challenges in the management of maternity care for migrant women Aim To illuminate midwives’ and public health nurses’ perceptions of managing and supporting prenatal and postnatal migrant women in Norway. Background Migrant women are affected by social inequalities and likely to have had experiences during and after the migration process that could influence their physical, mental and social well-being. Methods Multistage focus group interviews were conducted and data were analysed in accordance to conventional interpretative qualitative content analysis. Results The overarching theme ‘Managing and supporting educational, relational and cultural diversity in maternity care’ was characterized by two themes ‘Health challenges’ and ‘Cultural challenges’. Each theme contained several subthemes. The interviews revealed that Norwegian maternity care is not adjusted to migrant women’s needs. The management is the same for everybody who avails of the service. Conclusion The Norwegian model for managing cultural diversity in maternity care needs to be developed. Capacity building and a closer cooperation between maternity care services is necessary. Implications for midwives and nursing management Maternity care requires reflection at several levels to reduce disparities in individual health. In order to ensure continuity and a trusting relationship, it is necessary to organize leadership and adopt flexible models that support migrant women’s health.     

Caring for children and families in the community: experiences of Irish palliative care clinical nurse specialists

An increasing number of children require care at home owing to life-limiting illness. In addition, there is growing recognition of the specific care needs of such children and their families, and it is anticipated that recent developments in children's palliative care will result in more people accessing these services. In the Republic of Ireland (ROI), community palliative care clinical nurse specialists (CNSs), who are not registered children's nurses, contribute significantly to the support of these children and families. This study aimed to obtain a picture of the current nursing service that would help to determine whether the needs of these patients are being met. Seven community palliative care CNSs from across one health region in the ROI participated in a focus group. Four key themes emerged: gaining access to the child and family, role complexities, pressures of caring, and support strategies. Provision of community children's palliative care by the CNS is complex. The participants demonstrated their commitment to consult, coordinate, negotiate, and ultimately deliver the care required by children and families, but against a background of issues relating to accessing the patient and family, the complexity of the CNS role, and the pressures that such work incurs.     

Shifting the focus: outcomes of care for older people

Internationally there is commitment to work towards eradicating the abuse of older people and to develop services that promote their equality, dignity and human rights. The emphasis on service users is gradually increasing and, along with this, the focus within health and social care policy, service provision and professional practice is shifting. In UK health and social care policy the emphasis on service structure and provision is being replaced by a focus on outcomes for service users, including outcomes which patients themselves evaluate. The focus of UK Adult Protection services is also shifting from intervention to prevention through developing greater understanding of the factors which contribute to abuse, changing attitudes towards entrenched poor care, identifying preventative services and safeguarding vulnerable adults. Nursing literature is also beginning to acknowledge the evolution of an outcomes focus. This paper discusses the shifting emphasis in UK health and social care in the safeguarding of vulnerable people and in nursing practice. It offers an overview of literature on outcomes. The paper then describes a research study which sought to identify outcomes of care for older people living in UK care homes. The outcomes framework developed through the research is offered, along with a discussion of the advantages of an outcome-focused approach to care and some of the remaining challenges. A case example is offered to illustrate an outcomes-focused approach. Finally, the paper draws conclusions on how shifting the focus of care delivery from traditional problem-orientated approaches and ritualized practice towards the outcomes of care that individual older people choose and evaluate for themselves offers potential towards eradicating abuse and neglect in formal care settings.     

Teenagers' and parents' views on a short-break service for children with life-limiting conditions: a qualitative study

Few opportunities exist outside the home for children and teenagers with life-limiting conditions to have a break in a setting specifically designed and adequately staffed and resourced to meet their complex clinical, practical and emotional needs; until recently provision focused primarily on providing respite for parents/carers. Based on policy recommendations, a short-break service was established with the aim of working in partnership with families and voluntary and statutory agencies to provide a fun break for children and teenagers with life-limiting conditions and complement the range of services available. This qualitative study used interviews and focus groups to determine teenagers' and parents' views of the service. Three themes emerged: accessibility and communication; needs and boundaries; and shaping the service. Teenagers enjoyed regular planned residential breaks, access to skilled staff and bespoke facilities to support their needs, opportunities to meet others with life-limiting conditions and fun time away from home, thereby giving parents peace of mind, a regular planned break from care-giving, opportunities to meet other parents and to spend exclusive time with their other children. If specialist short-break services become part of the national range of services available, children and teenagers with life-limiting conditions and their parents and siblings could all benefit.     

Commentary: Public health approaches to palliative care – The progress so far

This article provides an academic and professional context for the articles written for this special issue. It discusses 4 broad questions often asked about the public health approach to palliative care: what is the evidence for the effectiveness of the approach?; will this approach embedded inside palliative care services deliver the kinds of social changes needed to address the social epidemiology of living with life-limiting illness, long term caregiving and grief and bereavement?; Is recent interest in this approach simply all about cost-savings for governments?; and will an emphasis on health promotion and community development subtract from efforts to increase or maintain clinical supports at the end of life?     

Spaces and Silences

Abstract

Background

There is a paucity of studies which explore palliative care patients’ involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability.

Aim

To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement.

Methods

Based on a larger pilot study to examine patients’ satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique.

Results

The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a ‘social death’. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research.     

Palliative care in nursing homes: exploring care assistants' knowledge

Aim.  To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context.
Background.  In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent.
Method.  Questionnaire to CAs in 48 of 91 private nursing homes in one UK region.
Findings.  A population of 1135 CAs were targeted with a response rate of 45% ( n  = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes.
Conclusion.  Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.     

What does mental health nursing contribute to improving the physical health of service users with severe mental illness? A thematic analysis

Authors have generally reported that mental health nurses (MHNs) have positive attitudes to providing physical health care to service users with severe mental illness. In the present study, we aimed to explore if this positive attitude translates to enhanced clinical practice by interviewing MHNs and the service users they work with. Semistructured interviews were completed with 15 service users and 18 MHNs from acute, rehabilitation, and community services. These were then transcribed and analysed using thematic analysis. Six themes emerged: (i) not the work of MHNs; (ii) the physical effects of psychiatric drugs are ignored; (iii) the need to upskill; (iv) keeping busy; (v) horrible hospital food/living on takeaways; and (vi) motivation to change. Our overarching meta‐theme was of unmet physical health need among service users.     

Specialist palliative care for patients with non-cancer diagnosis

All patients with palliative care needs should receive an equitable service, and there is evidence to suggest that patients with life-limiting illnesses other than cancer would benefit from specialist palliative care services. The author discusses how this might be achieved and the barriers that exist to prevent it happening.     

Palliative Care Research in Africa: Consensus Building for a Prioritized Agenda

ContextPalliative care research in Africa is in its relative infancy, with dedicated financial support extremely limited. Therefore, setting research priorities to optimize use of limited resources is imperative.ObjectivesTo develop a prioritized research agenda for palliative care in Africa.MethodsWe used a two-stage process involving palliative care professionals and researchers: 1) generation of an initial topic list at a consultative workshop of experts and 2) prioritization of that list using a consensus development process, the nominal group technique.ResultsPhase 1: 41 topics were generated across five groups, with several topics nominated in more than one group. Phase 2: 16 topics and three broad thematic areas were identified. The two most prioritized topics within each of the three themes were the following: Theme 1: patient, family, and volunteers—1) care outcomes and the impact of palliative care as perceived by patients and caregivers and 2) palliative care needs of children; Theme 2: health providers—1) impact of palliative care training on care and practice and 2) integration of palliative care and antiretroviral therapy services; and Theme 3: health systems—1) palliative care needs assessments at the micro-, meso-, and macro-levels and 2) integration of palliative care into health systems and educational curricula.ConclusionConsensus-based palliative care topics determined by the study can assist researchers in optimizing limited research capacities by focusing on these prioritized areas. Subsequent to the identification and publication of the research agenda, concrete steps will be undertaken by the African Palliative Care Research Network and other partners to help implement it.     

Impact of community care in enabling older people with complex needs to remain at home

Aim.  This aim of the study was to explore the impact of community care in enabling older people with complex needs to remain at home.
Background.  Changing demographic trends and successive government policies have led to an increase in the number of older people with complex needs residing in the community.
Design.  A qualitative approach using semi-structured interviews was used to collect data from older people ( n  = 17) and carers ( n  = 14).
Method.  Social workers were asked to identify community dwelling older people (65+ years) with multiple needs requiring interventions from a range of health and social care practitioners.
Results.  Community care enabled older people with complex needs who would otherwise have required residential or nursing home care to remain in their own homes. This was the expressed wish of both the older people and carers interviewed.
Conclusions.  The provision of high-quality community care for older people is a globally significant challenge and one that requires creative solutions, both at a local and strategic level.
Relevance to clinical practice.  Nurses and other health and social care professionals need to understand the significance of 'home' for older people and take steps to ensure that additional and appropriate resources are targeted towards community care.