Parkinson's disease: symptoms, treatment options and nursing care.

Idiopathic Parkinson's disease (IPD) is a progressive neurodegenerative condition that causes various motor and non-motor symptoms and will often have life-changing effects for those with the condition, as well as for their family and carers. Nurses can make a significant difference to the lives of those affected by Parkinson's disease, whether in the acute setting, community setting or in care homes. This article explores the causes and progressive clinical pathway of IPD using an evidence-based approach. It emphasises the valuable role of the multidisciplinary team and of the nurse, in particular, in monitoring and improving the quality of life of those with the condition and their family and carers.

'You can't say, "what about me?" I'm not the one with cancer': information and support needs of relatives.

OBJECTIVE: The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs. METHOD: A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis. RESULTS: Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide. CONCLUSION: Participants did not always want to know everything about the patient's illness, suggesting the importance of tailoring information to individual needs. Offering a range of different kinds of support directly to relatives may improve patient care and emotional well-being.

Mechanisms can help to use patients' experiences of chronic disease in research and practice: an interpretive synthesis.

OBJECTIVE: To identify and examine mechanisms through which patients' experiences of chronic disease can be accessed, understood, and used to improve outcomes, health care costs, and quality of life for individual patients. STUDY DESIGN AND SETTING: Interpretive synthesis of the research literature on chronic disease and associated areas of clinical practice and service development. Searches of electronic databases (MEDLINE, EMBASE, and British Nursing Index), Internet searches, and snowballing techniques identified 66 relevant publications. The analysis focused on identifying mechanisms; their strengths, weaknesses, and impact. RESULTS: Ten mechanisms were identified, each with differing potential to access and reach patients; involve patients in decisions about what information is important; enable patients to share experiences/expertise and validate their knowledge; allow professionals and patients to deliberate and build understanding; support shared decision-making, continuity/partnership development, and potential to use patients' experiences. The extent to which patients' experiences led to improved outcomes, health care costs, or quality of life related to the aims of individual studies. CONCLUSION: Patients can contribute to improving the design and delivery of chronic disease health care and research if appropriate mechanisms are in place. There is a need for future research about optimal configurations of mechanisms and links between mechanisms across health care and research.

Service user involvement in cancer care: the impact on service users.

BACKGROUND: Service user involvement is embedded in the United Kingdom's National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. OBJECTIVE: To explore the personal impact of involvement on the lives of service users affected by cancer. DESIGN: We conducted eight focus groups with user groups supplemented by nine face-to-face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. SETTING AND PARTICIPANTS: Sixty-four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. RESULTS: We identified three main themes: (i) 'Expectations and motivations for involvement'- the desire to improve services and the need for user groups to have a clear purpose, (ii) 'Positive aspects of involvement'- support provided by user groups and assistance to live well with cancer and (iii) 'Challenging aspects of involvement'- insensitivities and undervaluing of involvement by staff. CONCLUSIONS: This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers' activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.

Striving for independence: experiences and needs of service users with life limiting conditions.

AIM: This paper is a report of a study to explore what service users with a range of life-limiting conditions identify as their key experiences and needs generally and, specifically, from health and social care services. BACKGROUND: Whilst internationally palliative care has a primary focus on service users who have cancer, there is growing evidence that those with non-cancer life-limiting conditions have similar palliative care needs. The literature has mainly been focused on independence, choice and control at an individual level, with wider influences on the maintenance or attainment of independence ignored. METHOD: A participatory approach was used in 2003-2004, with both the researcher and a group of service users working together in all stages of the study. Twenty-five participants in receipt of support from an acute hospital, primary care, social services and a hospice took part. Face-to-face individual interviews and small discussion groups were conducted and data were analysed thematically. FINDINGS: Eight different but interconnected themes were identified. Independence/dependence was an overarching theme, with negotiation between independence and dependence being evident across all themes. This theme and the influence of health and social care services on the experience of living with life-limiting conditions are the focus of this paper. CONCLUSION: Palliative care and practitioners should focus on maximizing independence at both the individual and structural levels. How services for those with life-limiting conditions are provided and relationships with health and social care staff can directly impact on an individual's experience of independence, choice and control.

Bridging the gap: can a link nurse initiative influence palliative care in an acute hospital?

With 90% of people needing some inpatient hospital care in the final year of life, it is evident that the provision and awareness of palliative care, and education surrounding this, are widely needed. This study aims to evaluate a palliative care link nurse initiative (PCLN) in an NHS acute hospital, identifying key factors affecting link nurses' ability to influence palliative care practice. This qualitative study used semi-structured interviews and a focus group to show the anticipated and actual influence of link nurses on practice. Findings suggest that link nurses had increased knowledge and skills in palliative care due to education provided. Link nurses were seen to have an influence on the presence and quality of palliative care practice in hospital wards. Factors that could help link nurses to have greater influence are reported, as are difficulties in providing care and accessing training.

Interprofessional collaboration with service users in the development of cancer services: the Cancer Partnership Project.

Patient and Public Involvement (PPI) is a cornerstone of UK National Health Service (NHS) policy. The Cancer Partnership Project (CPP) is the leading national PPI initiative in cancer care. The CPP espouses a "partnership" model, with a "Partnership Group" - collaborative service improvement groups formed of NHS staff and service users - in each of 34 cancer networks in England. These groups aim to enable service users to influence local cancer service development and thereby improve the effectiveness of services. We interviewed 59 cancer service users and NHS staff in a reflective evaluation of CPP. Groups were active and visible in 30 networks, their main activities being: providing an accessible source of consumer opinion; prolific networking and representation; patient information and communication projects; and lobbying for service improvements. The groups exhibited some significant tensions. The motivations of professional staff varied markedly, and "obligatory" involvement as part of a person's job was counter-productive when not coupled with a "personal" belief in the value of PPI. Other controversial areas were the disclosure by patients' of personal health and treatment experiences, and emotional attachment to the group. It was concluded that partnership groups represent a useful PPI model, but more attention generally should be paid to the complexities of PPI and timescales required for meaningful cultural change.

'Working the system'. Achieving change through partnership working: an evaluation of cancer partnership groups.

AIMS AND OBJECTIVES: To investigate the characteristics and achievements of cancer partnership groups--collaborative service improvement groups formed of NHS staff and service users--in the 34 cancer networks in England, and in particular to explore the influence that such groups had on local cancer services. DESIGN: A qualitative approach employing a structured telephone survey, face-to-face interviews and documentary analysis. PARTICIPANTS AND SETTING: Thirty cancer networks in England with an active Partnership Group completed the telephone survey. From these 30 networks, six networks were subsequently selected from which service users and NHS professionals involved in partnership groups and NHS professionals who were non-members were recruited to take part in face-to-face interviews. RESULTS AND CONCLUSIONS: Partnership groups were established in the majority of cancer networks. Typically, these groups were at network level, been established for less than a year, met once every 2 months, and were populated with both service users and health-care professionals. Five common activities and achievements were identified: establishment of the group itself; acting as a 'reference' group for consultation; networking and representation on other groups; patient information and communication and proactive influencing. Activities progressed in scale and complexity as groups evolved. Groups had learnt the basics of change management and some identified a more sophisticated understanding of change processes in the NHS as essential for the group's motivation and survival. When gauging the impact of involvement strategies it would seem important to subscribe to broad indicators of success that include both process and outcome measures.