The Quality of Life in Alzheimer's Disease Scale: direct assessment of people with cognitive impairment

Background. A need exists, consistent with a person‐centred approach to dementia care, to facilitate collaborative approaches to the assessment of quality of life. Aims and objectives. To examine the concept of quality of life, to make the case for its centrality in dementia care provision and to consider the validity and reliability of one tool (Quality of Life in Alzheimer's Disease Scale, QOL‐AD). Conclusions. The use of the QOL‐AD aligns with person‐centred principles incorporating the subjective viewpoint of the person with dementia, thereby promoting a collaborative and inclusive approach to the measurement of the concept of quality of life. Relevance to clinical practice. Utilization of QOL‐AD in clinical practice facilitates a user‐centred and collaborative approach to the assessment of quality of life. This approach is in keeping with contemporaneous forces in health and social care delivery for people with dementia.     

How to make a particular case for person‐centred patient care: A commentary on Alexandra Parvan

In recent years, a person‐centred approach to patient care in cases of mental illness has been promoted as an alternative to a disease orientated approach. Alexandra Parvan's contribution to the person‐centred approach serves to motivate an exploration of the approach's most apt metaphysical assumptions. I argue that a metaphysical thesis or assumption about both persons and their uniqueness is an essential element of being person‐centred. I apply the assumption to issues such as the disorder/disease distinction and to the continuity of mental health and illness.     

The senses in practice: enhancing the quality of care for residents with dementia in care homes

Aim. The study aimed to develop, deliver, and evaluate a training programme in care homes to enhance the quality of care for people living with dementia based on the principles of relationship‐centred care expressed through the Senses Framework. Background. There are increasing numbers of people living with dementia worldwide with a growing proportion requiring residential long‐term care. This makes the quest for enhancing the quality of care and quality of life for people with dementia ever more pressing. Design. A mixed‐methods design was used adopting a Practice Development approach. The findings from one care home in the North West of England are reported. Methods. Eight facilitated workshops based on the principles of relationship‐centred care were completed and evaluated in 2010, using pre‐ and postintervention design. A focus group was undertaken with staff on completion of the study to gain a more comprehensive understanding of the practice/training context, augmented by case examples of changes in practice identified from the study workshops. Results. Structured questionnaires were used to profile the care home before and after the training. Following the workshops, staff felt more able to collect and use biographical information. In particular, staff reported how this information supported them to initiate meaningful conversations with the person with dementia as part of everyday care routines, thus improving overall feelings of well‐being. Conclusion. Using a biographical approach to care planning structured through the Senses Framework helped staff to develop a greater understanding of the person with dementia.     

Caring for people with dementia disease (DD) and working in a private not‐for‐profit residential care facility for people with DD

Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not‐for‐profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person‐centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two‐edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health.     

Preserving personhood of individuals with advanced dementia: Lessons from family caregivers

This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer's disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers' perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff.     

A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: A randomised clinical trial

Purpose of the researchThe French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden.Methods and sampleA multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study.Key results67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers.ConclusionsAn educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay.     

Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial

This article presents the efficacy of the recruitment framework used for a clinical trial with sedentary family caregivers of persons with Alzheimer's disease. An integrated social marketing approach with principles of community‐based participatory research provided the theoretical framework for organizing recruitment activities. This multi‐pronged approach meant that caregivers were identified from a range of geographic locations and numerous sources including a federally funded Alzheimer's disease center, health care providers, community based and senior organizations, and broad‐based media. Study enrollment projections were exceeded by 11% and resulted in enrolling n = 211 caregivers into this clinical trial. We conclude that social marketing and community‐based approaches provide a solid foundation for organizing recruitment activities for clinical trials with older adults. © 2011 Wiley Periodicals, Inc. Res Nurs Health 35:70–81, 2012     

Perceptions of the impact of a large-scale collaborative improvement programme: experience in the UK Safer Patients Initiative

Rationale and aims In several countries, collaborative improvement programmes involving multiple health care organizations have been developed to address the issue of patient safety and reliability of care at an organization‐wide level. In the UK, the Health Foundation's Safer Patients Initiative (SPI) was developed to achieve breakthrough improvement in the quality and safety of care in 24 acute hospital Trusts between 2004 and 2008. Research evidence for the effectiveness of programmes of this type and the mechanisms by which positive outcomes are achieved remains limited. We report a multi‐method preliminary study based upon phase 1 of SPI to understand participant's perceptions of the local impact of the programme and to form the basis of future research in this area. Methods Data were collected on the perceived local impact of SPI on a range of clinical, organizational and social dimensions relating to care quality and safety. Data were collected retrospectively from local SPI programme improvement teams using semi‐structured interviews and surveys. Qualitative and quantitative analyses were performed, and the results synthesized under common themes and frameworks. Results Specific dimensions of care systems commonly considered to be affected by SPI, included culture, strategic priority, organizational capability and clinical care delivery. Survey data revealed the perceived importance for success of a range of programme components: quality improvement methodology, learning sessions and programme faculty support, along with predefined clinical practice changes. Safety climate and capability dimensions rated as most sensitive to the effects of the SPI programme related to multi‐professional engagement and communication, the degree of routine monitoring of care processes and the capacity to evaluate the impact of changes to clinical work systems. Conclusions Study findings support the view that programmes such as SPI have considerable impact upon the cultural, inter‐professional, strategic and organizational aspects of care delivery, in addition to clinical working practices. The specific implications for understanding the effects of complex organization‐level interventions and future research design are discussed.     

Treatment regimes in a psychiatric hospital and apparent contradictions: Report from field work in a lock‐up ward illustrated with a constructed case

The medical approach dominates in Norwegian psychiatry, but mental health nurses and other ward staff hold that milieu therapy constitutes an additional and important treatment approach for psychiatric patients. In this study, we wanted to explore these approaches as they are implemented in inpatient treatment. We conducted a 9‐month ethnographic study in two lock‐up psychiatric wards in a Norwegian psychiatric hospital. In this article, we present a constructed case, Mary, to illustrate the voices, experiences, and perspectives of patients and staff as observed primarily in the patients' smoking room, the corridor, and the staffroom. From the perspective of staff, we identified at least two professional perspectives concerning patients' daily life: a strong medical–psychiatric view and a weaker therapeutic milieu, which seemed difficult to implement. When considering the view of people in care, we observed that patients' experiences and points of view occurred and remained to a large degree in their smoking room, and patients seemed to have little impact on their own treatment programmes. This stands in sharp contrast to patients' legal rights to participate in any important decisions regarding their treatment and to the espoused person‐centred orientation in health care today.     

The Effects of Creative Reminiscing on Individuals with Dementia and Their Caregivers: A Pilot Study

ABSTRACT

Reminiscing is known to enhance well-being, increase social participation and provide opportunities for self-expression. However, while reminiscing activities have become standard in many memory care facilities, their outcomes have not been systematically evaluated. Aims: This research explored the effects of creative reminiscence activities on the quality of life of clients with memory loss and on caregivers' self-perceived burdens associated with caring for an individual with memory loss. Methods: Using time and attention control activities and creative reminiscing activities, the observed, self-reported, and caregivers' opinions of the quality of life of clients with moderate Alzheimer's disease was documented over the course of this study. Caregivers' perceptions of the burdens associated with caring for loved ones were also assessed. Result: Results of this pilot study showed significant increases in caregivers' perceptions of their loved ones' quality of life and decreases in the burdens they experienced during the intervention phase. No significant changes occurred in clients' self-reported or observed well-being during the study. Conclusions: While using a carefully considered creative reminiscence activity intervention for clients with dementia can cause a decrease in caregivers' perception of their own burden and an increase in their perceptions of the loved ones' quality of life, future research is needed to determine the subtle nuances in well-being of individuals with memory loss and their caregivers.     

Students' ideals for nursing older people in practice

Aim. Drawing on research exploring nursing students’ experiences of working with older people, this paper aims to demonstrate how context and culture can impact on the realization of their ideals. Background. The principles underpinning individualized and person‐centred approaches to care resonate with those focal to gerontologic nursing. Restrictive contexts of care and pervasive workplace cultures render nurses unable to deliver care in accord with these. Design and method. This interpretive study was informed by phenomenological–hermeneutic theory. A purposive sample (n = 10) was recruited from a single educational institution. Data were generated in two phases using loosely structured interviews and supplementary activity. Themes explicating their experiences were identified via systematized detailed analysis and issues pertaining to nursing students’ orientation towards older people cut across these. Findings and discussion. Students perceived that older people were prone to depersonalization and marginalization, so sought to show respect by coming to know individuals, form human connections with them and personalize care accordingly. Giving respect, promoting personhood, asserting reciprocal identity and maintaining dignity were prominent features of this but were often frustrated by practices and cultures encountered in mainstream settings. Conclusions. Nursing students’ approaches to older people are contextual and reflect elements of person‐centred ideology. Their attempts upholding their ideals are liable to be subverted by workplace norms. Preparatory education should address these, assist students to learn how to attend to personhood in restrictive environments and offer targeted placements in age‐specific and non‐acute services. Relevance to clinical practice. Demographic trends mean that working with older people has increased significance for nurses in most settings. Person‐centredness is seen as beneficial for older people but contemporary service imperatives and enduring practices are inhibitory, preventing entrants to nursing from developing related skills.     

Children's and young people's experiences of chronic renal disease: a review of the literature, methodological commentary and an alternative proposal

Aim. The aims of this paper were to review and critique existing research literature on children's and young people's experiences of chronic renal disease and to propose alternative approaches that may be more fruitful in addressing existing research shortcomings. Background. Chronic renal disease, which results in approximately 1·6–4 new cases per year per million population in the 0–15 years age group, is a serious illness that causes severe and irreversible reduction in kidney function. Despite modern medical advances, its significance and implications for the lives of the children and young people concerned are profound. Method. Salient literature for this review was obtained using the major health and social science electronic databases such as Medline, CINAHL, Psyclit and Sociofile. Manual searching of relevant books, journals and ‘grey literature’, combined with the genealogy approach, extended and strengthened the search. Conclusions. Research in this area focuses mainly on two areas, namely psychological adjustment and adaptation to end‐stage renal disease. This research is grounded within a framework of empirical psychology that values objectivity, measurement and quantification. This predominantly psychometric approach is critiqued for simplifying the complex experience of end‐stage renal disease and for pathologizing children and young people with this disease. We identify a significant gap in the research literature, namely the lack of research that takes into account these children's and young peoples’own perspectives of their experiences. Relevance to clinical practice. Chronic renal disease has a significant impact on children's and young people's lives. Understanding the experiences of these children is important for the provision of effective healthcare. Conducting child‐centred qualitative research in this area would allow us to explore vital questions of meaning, perception and understanding. If health and social care organizations claim to provide ‘consumer‐focused’ services, it behoves us to develop first a clearer understanding of the lives and experiences of children and families who seek our help and to use this knowledge and understanding to plan and provide more grounded and responsive services.     

Translating person-centred care: a case study of preceptor nurses and their teaching practices in acute care areas

Aims and objectives. The research aims to explore how preceptors interpret, operationalize, document and teach person‐centred care as they guide students within an acute surgical environment. Background. Person‐centred care is a term that is widely used in the nursing literature; however, its interpretation in nursing practice remains virtually unexplored. This is of great significance to nurses in general but to Irish nurses in particular on whom this study is focused. As preceptor nurses have been identified as key people in the education of clinical students, it was considered important to explore how clinical preceptors promote person‐centred care to current undergraduate nursing students. Design and method. Using a case study design and a qualitative approach, six preceptors were chosen to participate in this study. Data were collected by means of participant observation, review of nursing care records and semi‐structured interviews. Data were analysed in two stages. The first stage involved the identification of themes. In the second stage data were analysed using a number of propositions to examine and explain what was gleaned from the data in the context of what was originally identified in the literature. Results. Findings highlighted that preceptors had a limited conception of person‐centred care. Measures of care reflected the medical model of nursing. Beyond that, preceptors expressed care in terms of good manners or respectful etiquette. Preceptors also had limited appreciation of what learning entails and were sceptical about classroom theory other than what they considered essential for safe practice. Conclusions. This study highlights that preceptors need both internal and external support to implement the changes advocated by the Commission in Nursing in 1998 , the Nursing Education Forum in 2000 , the Department of Health and Children in 2001 and An Bord Altranais in 2003 . Relevance to clinical practice. Person‐centred care is a relatively new concept in nursing and recommended for practice. Preceptors need facilitation with its implementation. In an effort to promote changes in the delivery of health care, it is suggested that university‐based lecturers empower students to practice evidence‐based nursing as students and subsequently as qualified nurses.     

A case study: Concurrent palliative care based on SENS‐structure for patients with advanced prostate cancer

On an acute urological ward, it is challenging to meet all needs of patients with life‐limiting progressive cancer disease in complex situations. The focus shifts from curation to the holistic palliative approach aiming at patients' and their families' needs and planning care in advance with an interprofessional attitude. Based on a patient with castration refractory prostate carcinoma with multiple metastasis, the aim of this case study is to describe the palliative care approach, using the established so‐called SENS‐structure (Symptoms, End‐of‐life decisions, Network and Support of the carer) in which the bio‐, psycho‐, social and spiritual needs are addressed. We report on our practice experience using the SENS‐structure, in which the team discusses palliative care interventions with patients and their family: management of (potential) symptoms and self‐supporting strategies, expectations and end‐of‐life decisions including advance care planning, evaluation of patients' social and professional network and setting up additional support. The palliative care team provides advice to the treating team on future treatment strategies and care activities. The complex situation of a patient with metastatic prostate cancer and his personal sufferings illustrate the interprofessional use and person‐centred focus of the SENS‐structure. Important in this phase is—next to the family carers—the involvement of all professions and disciplines to break down the complexity of the situation into manageable proportions. Early involvement of palliative care for patients with advanced cancer is highly recommended. The SENS‐structure helps to prioritize and include the personalized approach which is strongly supported by nurses.     

Exploring experiences of physical activity among people with Alzheimer's disease and their spouse carers: a qualitative study

Objectives

To improve understanding about the barriers and facilitators to physical activity for people with Alzheimer's disease and their spouse carers, and to consider the development of activity interventions that would be acceptable, sustainable and feasible for both groups.

Design

A qualitative approach, using semi-structured interviews, facilitated exploration of physical activity in a small group of people with Alzheimer's disease and their spouse carers.

Setting

Participants were recruited from one memory clinic in South West England.

Participants

Potential participants were identified by clinical psychologists at the memory clinic and were given information about participating in the research. Five people with Alzheimer's disease and their spouse carers were subsequently recruited for semi-structured interviews, which took place at the memory clinic. Interviews were audio-recorded and transcribed verbatim.

Main outcome measures

Qualitative data were analysed using thematic analysis. Three major themes have been presented.

Results

The findings illustrate the complex interplay between the overarching themes ‘self’, ‘others’ and ‘couple’ that affect physical activity for both people with Alzheimer's disease and their spouse carers, and which are linked to the progression of dementia.

Conclusions

An individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design.     

Professional responsibility and decision‐making in the context of a disease‐focused model of nursing care: The difficulties experienced by Spanish nurses

When, in 1977, nurse education in Spain was transferred to universities a more patient‐centred, the Anglo‐American philosophy of care was introduced into a context in which nurses had traditionally prioritised their technical skills. This paper examines the characteristics of the nurse's professional role in Spain, where the model of nursing practice has historically placed them in a position akin to that of physician assistants. The study design was qualitative and used the method of analytic induction. Participants were selected by means of theoretical sampling and then underwent in‐depth interviews. The resulting material was analysed using an approach based on the principles of grounded theory. Strategies were applied to ensure the credibility, transferability, dependability and confirmability of the findings. The main conclusion is that nurses in Spain continue to work within a disease‐focused model of care, making it difficult for them to take responsibility for decision‐making.     

CitySCaPE: Moving beyond indifference in education for pre-registration nurses about learning disability

People with learning disabilities and Autism continue to suffer from the delivery of ineffective and inadequate care from health services CitySCaPE (City Simulated Community and Practice Environment) is a multi media resource delivering a simulation of situations student nurses may encounter in relation to service users with learning disabilities. The resource is applicable to adult, mental health and children's nursing. It is delivered in a blended approach to students in the first part of their programme as part of their simulated practice. Following the implementation of the resource an evaluation of student experience was undertaken using a mixed methods approach. 146 responses were obtained to a questionnaire containing quantitative and qualitative data. The findings indicate that this is a pedagogy that suits a variety of learning styles, is deemed to be realistic and improves the understanding of nursing students about the care of people with learning disabilities in generic practice areas. It is anticipated that CitySCaPE can be used as a model for delivery of practice based learning in areas that are often challenging to teach and demonstrate using a service user and person centred approach.     

Mental health nurses’ experience of physical health care and health promotion initiatives for people with severe mental illness

Health care for people with severe mental illness is often divided into physical health care and mental health care despite the importance of a holistic approach to caring for the whole person. Mental health nurses have an important role not only in preventing ill health, but also in promoting health, to improve the overall health among people with severe mental illness and to develop a more person‐centred, integrated physical and mental health care. Thus, the aim of this study was to describe mental health nurses’ experiences of facilitating aspects that promote physical health and support a healthy lifestyle for people with severe mental illness. Interviews were conducted with mental health nurses (n = 15), and a qualitative content analysis was used to capture the nurse’s experiences. Analysis of the interviews generated three categories: (i) to have a health promotion focus in every encounter, (ii) to support with each person’s unique prerequisites in mind and (iii) to take responsibility for health promotion in every level of the organization. The results show the importance of a health promotion focus that permeates the entire organization of mental health care. Shared responsibility for health and health promotion activities should exist at all levels: in the person‐centred care in the relation with the patient, embedded in a joint vision within the working unit, and in decisions at management level.