Family caregiver views on patient-centred care at the end of life

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member. Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses. Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M=4.3 (SD=1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex. Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.

Företagshälsovårdare

ÅBO AKADEMI UNIVERSITY Faculty of Education and Welfare Studies Author: Helena Nyman Supervisor: D.Sc. (Health Care), RN Jessica Hemberg Master´s Thesis The vision of caring – Occupational healthcare nurses experiences of fulfilling their ethical values CARING SCIENCE Keywords: Ethics, nursing, nursing ethics, healthcare, values April 2016 Number of pages: 53 Appendices: 5 The purpose of this study is to reach an understanding of what ethos is in an occupational healthcare context. The study seeks answer to the following questions: 1. What is ethos in an occupational healthcare context? 2. What does it mean for occupational healthcare nurses to fulfill their inner ethos in a healthcare context controlled by economic demands of gain and efficiency? The main concept in this study is ethos as Eriksson describes it in her caritative theory of caring. Ethos is associated with ethics and reflects the fundamental assumptions that we have about the human being´s holiness and dignity and about the inviolability of life. The empirical part of the study consists of focus interviews with four occupational healthcare nurses. The study uses hermeneutical reading as an interpretation method, and presents the results of the study in six theses reflecting these against both recent research and the theoretical background. The results of the study show that ethos in occupational healthcare has to do with justice, honesty and faithfulness. These concepts are common to nurses in different nursing contexts. Ethos is not primarily profession-bound but is something universal, and eternal in the human being´s way of being and becoming. The study shows that ethos is a way of being, openness and a way of existing in love. To fulfill ethos in an occupational health context means to choose ethos continuously and courageously for the sake of the patient and the good, even if it involves a struggle or a sacrifice.

La familia del paciente en Unidad de Cuidado Intensivo (UCI)

Introducción: Ingresar a la UCI no es una experiencia exclusiva del paciente; implica e involucra directamente a la familia, en aspectos generadores de estrés, estrategias de afrontamiento, temores, actitudes y expectativas, la participación de la familia en el cuidado y el rol del psicólogo. Objetivo: Revisar de los antecedentes teóricos y empíricos sobre la experiencia de la familia en UCI. Metodología: Se revisaron 62 artículos indexados en bases de datos. Resultados: la UCI es algo desconocido tanto para el paciente como para la familia, por esto este entorno acentúa la aparición de síntomas ansiosos, depresivos y en algunos casos estrés post traumático. La muerte es uno de los principales temores que debe enfrentar la familia. Con el propósito de ajustarse a las demandas de la UCI, los familiares exhiben estrategias de afrontamiento enfocadas principalmente en la comunicación, el soporte espiritual y religioso y la toma de decisiones. El cuidado centrado en la familia permite una mejor comunicación, relación con el paciente y personal médico. El papel del psicólogo es poco explorado en el espacio de la UCI, pero este puede promover estrategias de prevención y de rehabilitación en el paciente y su grupo familiar. Discusión: es importante tener en cuenta que la muerte en UCI es una posibilidad, algunos síntomas como ansiedad, depresión pueden aparecer y mantenerse en el tiempo, centrar el cuidado en la familia permite tomar las decisiones basados en el diagnóstico y pronóstico y promueve expectativas realistas. Conclusiones: temores, expectativas, actitudes, estrategias de afrontamiento, factores generadores de estrés permiten explicar y comprender la experiencia de la familia del paciente en UCI.

Glädje i vårdandets värld

Föreliggande vårdvetenskapliga studie har som syfte att avtäcka och synliggöra glädjesom idé i vårdandets värld. Glädje sammanbinds med vårdandet genom kärleken somden tongivande kraften hos glädje. Vårdandets sak har genom historien alltid varit attlindra lidande och att tjäna liv och hälsa i en anda av kärlek och barmhärtighet. Dennastudie om glädje i vårdandet har en övergripande idéhistorisk inriktning och resultatetsammanställs i form av ett idémönster. Tolkningen sker genom en hermeneutisk ansatsmed fokus på förståelse av själva vårdandet. För att djupare förstå glädje, dessursprungsidé, väsen och uttrycksformer granskas begreppet ’glädje’ och de näraliggandebegreppen ’glad’ och ’ljus’ i etymologiska ordböcker samt i svenska, engelska ochlatinska ordböcker. Som stöd för tolkningen används klassiska texter innehållandefilosofers tankar om glädje. Glädje som idé glimtar fram i form av ett sjufaldigtmönster. Detta mönster innehåller särdrag hos glädje och det hjärtas natur somrespektive särdrag förverkligas i. I andlig mening utgör hjärtat livets medelpunkt ochkänslornas hemvist. Mönstret bildar bakgrund och blir vägledande vid den hermeneutiska läsningen omglädje, så som den framträder i berättelser om vårdande under åren 1900–1933. Dehistoriska källorna utgörs av facktidskriften Svensk sjukskötersketidning, böcker medberättelser om vårdande, arkivmaterial samt läroböcker om vårdarbete. Resultatetmynnar ut i ett idémönster, där idéer om det som gör glädje verksamt som vårdandeframträder. Dessa är det sanna hjärtats rena glädje – kärlek, glädje är ett kärleksbevis.Det brinnande hjärtats djupa glädje – livsglädje, glädje inspirerar och genererar kraft.Det bärande hjärtats glansfulla glädje – generositet, glädje är en gåva till den andra medlöfte om hjälp. Det inbjudande hjärtats glittrande glädje – gemenskap, glädje inbjudertill gemenskap. Det upprymda hjärtats uppsluppna glädje – integration, glädje gör attmänniskan kan glömma sitt lidande och närma sig den hon önskar vara. Detstämningsfulla hjärtats högtidliga glädje – bevärdigande, glädje skapar en anda ochatmosfär där människan upplever sig hedrad. Det fridfulla hjärtats stora glädje –räddning, en glädje visar sig när människan har erhållit det som kan begäras av gott ochundsluppet ont och är förnöjd med sin levnads lott. Förhoppningen är att dennagrundforskning ska öppna för ett nytt seende som kan leda till att glädjeuppmärksammas i vårdandets värld och artikuleras där.

Psychosocial factors impacting on life transitions among young adults with type 2 diabetes : an Australian - Danish qualitative study

BACKGROUND: Type 2 diabetes (T2DM) prevalence is increasing rapidly worldwide with a significant increase in young adults. There is limited information about psychosocial and service needs of this group. AIM: To explore similarities and differences in how psychosocial factors impact on Australian and Danish young adults with T2DM and to identify unmet support needs during life transitions. METHOD: A qualitative approach was adopted using thematic content analysis of 26 in-depth semi-structured interviews. An inductive descriptive content analysis was undertaken using a comparative coding system. FINDINGS: Eligible participants were from Australia (12) and Denmark (14), aged 19-42 years who had T2DM for more than 10 months. In general, they reported diabetes management was difficult during transitions and diabetes self-care routines had to change to accommodate life changes. The underpinning sense of 'uncertainty' initiated by life transitions caused guilt that often resulted in low self-worth, anxiety and depression, which in turn had a negative impact on social and professional relationships. The participants emphasised the importance of connectedness to social networks, particularly with T2DM peers, and the need for flexible access to health professionals, age-specific tailored support and lower costs for Australians. Australian participants were more concerned than Danish participants about the cost associated with diabetes care and their ability to stay employed; hence, they were reluctant to disclose diabetes at work. CONCLUSION: T2DM had a similar impact on life transitions of Australian and Danish young adults with T2DM, suggesting health care needs to encompass managing life transitions. Participants had to cope with uncertainty and the impact of people's responses to diabetes, particularly at work and in relationships. Health professionals are urged to integrate these factors in care plans and education, which must be individualised and focus on the psychosocial aspects that operate during life transitions.

Patients' perceptions of participation in nursing care on medical wards

BACKGROUND: Patient participation benefits the patient and is a core concept of patient-centred care. Patients believe in their ability to prevent errors; thus, they may play a vital role in combating adverse event rates in hospitals. AIMS AND OBJECTIVES: To explore hospitalised medical patients' perceptions of participating in nursing care, including the barriers and facilitators for this activity. RESEARCH METHODS: This interpretive study was conducted on four medical wards, in two hospitals. Purposeful maximum variation sampling was operationalised to recruit patients that differed in areas such as age, gender and mobility status. In-depth semi-structured audiotaped interviews were undertaken and analysed using inductive content analysis. RESULTS: Twenty patients participated in the study. Four categories were uncovered in the data. First, valuing participation showed patients' willingness to participate, viewing it as a worthwhile task. Second, exchanging intelligence was a way of participating where patients' knowledge was built and shared with health professionals. Third, on the lookout was a type of participation where patients monitored their care, showing an attentive approach towards their own safety. Fourth, power imbalance was characterised by patients feeling their opportunities for participation were restricted. CONCLUSIONS: Patients were motivated to participate and valued participation. Cultivating this motivation may be crucial to patient empowerment and practices of safety monitoring, a fundamental strategy to addressing patient safety issues in hospitals. Engaging nurse-patient relationships, inclusive of knowledge sharing, is required in practice to empower patients to participate. Educating patients on the consequences of non-participation may motivate them, while nurses may benefit from training on patient-centred approaches. Future research should address ways to increase patient motivation and opportunities to participate.

Patient engagement in clinical communication: an exploratory study

AIM: Existing practice strategies for actively involving patients in care during hospitalisation are poorly understood. The aim of this study was to explore how healthcare professionals engaged patients in communication associated with care transitions.

METHOD: An instrumental, collective case study approach was used to generate empirical data about patient transitions in care. A purposive sample of key stakeholders representing (i) patients and their families; (ii) hospital discharge planning team members; and (iii) healthcare professionals was recruited in five Australian health services. Individual and group semi-structured interviews were conducted to elicit detailed explanations of patient engagement in transition planning. Interviews lasted between 30 and 60 minutes and were digitally recorded and transcribed verbatim. Data collection and analysis were conducted simultaneously and continued until saturation was achieved. Thematic analysis was undertaken.

RESULTS: Five themes emerged as follows: (i) organisational commitment to patient engagement; (ii) the influence of hierarchical culture and professional norms on patient engagement; (iii) condoning individual healthcare professionals' orientations and actions; (iv) understanding and negotiating patient preferences; and (v) enacting information sharing and communication strategies. Most themes illustrated how patient engagement was enabled; however, barriers also existed.

CONCLUSION: Our findings show that strong organisational and professional commitment to patient-centred care throughout the organisation was a consistent feature of health services that actively engaged patients in clinical communication. Understanding patients' needs and preferences and having both formal and informal strategies to engage patients in clinical communication were important in how this involvement occurred.

The role of religion and spirituality in coping with kidney disease and haemodialysis in Thailand

BACKGROUND: People with chronic kidney disease (CKD) face various problems including psychological, socioeconomic and physical effects associated with CKD and its treatment. They need to develop strategies to help them cope with CKD and life challenges. Religion and spirituality are important coping strategies, but their role in helping people cope with CKD and haemodialysis (HD) in Thailand is relatively unknown.

AIMS: To investigate the role of religion and spirituality in coping with CKD and its treatment in Thailand.

DESIGN: An exploratory, qualitative approach was undertaken using semistructured individual interviews.
METHOD: Purposive sampling was used to recruit participants. Face-to-face, in-depth individual interviews using open questions were conducted during January and February 2012. Interviews were audio-recorded and transcribed verbatim. Data were analysed using the framework method of qualitative data analysis.

FINDINGS: Twenty people receiving HD participated: age range 23-77 years, mean 53.7 (±16.38 SD). Ten were women. Participants reported use of religious and spiritual practices to cope with CKD and its treatment, including religious and spiritual explanations for developing CKD, karmic disease, making merit, reading Dharma books, praying and chanting to save life and making a vow to Pran-Boon.

CONCLUSION: Religion and spirituality provide powerful coping strategies that can help Thai people with CKD overcome the associated distress and difficulties. Religion and spirituality cannot be separated in Thai culture because Thai people are both religious and spiritual.

Perceptions of stressors and reported coping strategies in nurses caring for residents with Alzheimer's disease in a dementia unit

A study was undertaken on the perceptions of stressors and coping behaviours in a group of nurses caring for residents with Alzheimer's disease in a dementia unit. The purpose of this paper is to report on the preliminary findings of the study. Repertory grid data were used to explore how nurses perceive residents, the stressors nurses experience in their work, and the coping strategies nurses use when caring for residents. The nurses identified 92 sources of stress, 683 coping behaviours and 708 coping strategies. Analyses of selected repertory grid data are presented and the stressors reported by the nurses are summarized. The coping strategies the nurses report using are classified into categories of adaptive and maladaptive responses to stress. In addition, the nursing implications of the coping strategies used by the nurses are also considered.

The emotional costs of caring incurred by men and women in the British labour market

This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.

Collaborative eLearning Assistant Network: caring agents are conscious agents

Would a research assistant - who can search for ideas related to those you are working on, network with others (but only share the things you have chosen to share), doesn’t need coffee and who might even, one day, appear to be conscious - help you get your work done? Would it help your students learn? There is a body of work showing that digital learning assistants can be a benefit to learners. It has been suggested that adaptive, caring, agents are more beneficial. Would a conscious agent be more caring, more adaptive, and better able to deal with changes in its learning partner’s life? Allow the system to try to dynamically model the user, so that it can make predictions about what is needed next, and how effective a particular intervention will be. Now, given that the system is essentially doing the same things as the user, why don’t we design the system so that it can try to model itself in the same way? This should mimic a primitive self-awareness. People develop their personalities, their identities, through interacting with others. It takes years for a human to develop a full sense of self. Nobody should expect a prototypical conscious computer system to be able to develop any faster than that. How can we provide a computer system with enough social contact to enable it to learn about itself and others? We can make it part of a network. Not just chatting with other computers about computer ‘stuff’, but involved in real human activity. Exposed to ‘raw meaning’ – the developing folksonomies coming out of the learning activities of humans, whether they are traditional students or lifelong learners (a term which should encompass everyone). Humans have complex psyches, comprised of multiple strands of identity which reflect as different roles in the communities of which they are part – so why not design our system the same way? With multiple internal modes of operation, each capable of being reflected onto the outside world in the form of roles – as a mentor, a research assistant, maybe even as a friend. But in order to be able to work with a human for long enough to be able to have a chance of developing the sort of rich behaviours we associate with people, the system needs to be able to function in a practical and helpful role. Unfortunately, it is unlikely to get a free ride from many people (other than its developer!) – so it needs to be able to perform a useful role, and do so securely, respecting the privacy of its partner. Can we create a system which learns to be more human whilst helping people learn?

LiLEDDA – a six step forum-based netnographic research method for nursing and caring sciences

Internet research methods in nursing science are less developed than in other sciences. We choose to present an approach to conducting nursing research on an internet-based forum. This paper presents LiLEDDA, a six-step forum-based netnographic research method for nursing science. The steps consist of: 1. Literature review and identification of the research question(s); 2. Locating the field(s) online; 3. Ethical considerations; 4. Data gathering; 5. Data analysis and interpretation; and 6. Abstractions and trustworthiness. Traditional research approaches are limiting when studying non-normative and non-mainstream life-worlds and their cultures. We argue that it is timely to develop more up-to-date research methods and study designs applicable to nursing science that reflect social developments and human living conditions that tend to be increasingly online-based.