Formal and informal care utilisation amongst elderly persons with visual impairment.

OBJECTIVE: To examine the determinants of formal and informal care utilisation amongst persons with age-related macular degeneration (AMD). DESIGN: Cross-sectional hospital-based study. SETTING: Hospital eye clinic in Northern Ireland. PARTICIPANTS: 284 persons aged >or=50 years. MAIN OUTCOME MEASURES: Participants were questioned about their care, living arrangements, eyesight-related ability to self-care, and eyesight-related need to be more careful whilst undertaking everyday tasks. RESULTS: The percentage of older persons receiving formal and informal care rose with the level of visual impairment. 34.9% and 37.3% of those with no visual impairment received formal and informal care, respectively, compared with 51.6% and 69.9% of those with moderate visual impairment and 55.6% and 88.9% of those with severe visual impairment. Three factors (age, best corrected distance visual acuity in the better eye and living alone) were significant predictors (p

The spirit of palliative practice:A qualitative inquiry into the spiritual journey of palliative care physicians

Objective: Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician-patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. Method: A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians. Results: Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. Significance of results: With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care. Copyright © Cambridge University Press 2010.

Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

Trends in self-reported prevalence and management of hypertension, hypercholesterolemia and diabetes in Swiss adults, 1997-2007.

Switzerland has a low mortality rate from cardiovascular diseases, but little is known regarding prevalence and management of cardiovascular risk factors (CV RFs: hypertension, hypercholesterolemia and diabetes) in the general population. In this study, we assessed 10-year trends in self-reported prevalence and management of cardiovascular risk factors in Switzerland. data from three national health interview surveys conducted between 1997 and 2007 in representative samples of the Swiss adult population (49,261 subjects overall). Self-reported CV RFs prevalence, treatment and control levels were computed. The sample was weighted to match the sex - and age distribution, geographical location and nationality of the entire adult population of Switzerland. self-reported prevalence of hypertension, hypercholesterolemia and diabetes increased from 22.1%, 11.9% and 3.3% in 1997 to 24.1%, 17.4% and 4.8% in 2007, respectively. Prevalence of self-reported treatment among subjects with CV RFs also increased from 52.1%, 18.5% and 50.0% in 1997 to 60.4%, 38.8% and 53.3% in 2007 for hypertension, hypercholesterolemia and diabetes, respectively. Self-reported control levels increased from 56.4%, 52.9% and 50.0% in 1997 to 80.6%, 75.1% and 53.3% in 2007 for hypertension, hypercholesterolemia and diabetes, respectively. Finally, screening during the last 12 months increased from 84.5%, 86.5% and 87.4% in 1997 to 94.0%, 94.6% and 94.1% in 2007 for hypertension, hypercholesterolemia and diabetes, respectively. in Switzerland, the prevalences of self-reported hypertension, hypercholesterolemia and diabetes have increased between 1997 and 2007. Management and screening have improved, but further improvements can still be achieved as over one third of subjects with reported CV RFs are not treated.

Self-medication and related terms: a conceptual reflection

Introduction: self-medication has become a growing practice in the world population. This phenomenon has been promoted as a form of self-care, with a positive impact on reducing spending in health systems, however there is concern about the potential negative effects related to inadequate diagnosis and treatment, which can affect health of individuals. This dual perception of the phenomenon is partly related to a variety of terms and concepts used, that make difficult its theoretical and empirical approach. Harmonization of the definitions involved is required in order to make adequate epidemiological comparisons. Objectives: analyze the concept of self medication and related terms from the definitions in the literature of the subject. Conclusions: in the last four decades it has been an evolution of both the wording and the definitions related to self-medication, from a very simple concept that implies the absence of prescription, to more complex ones that encompass very diverse behaviors, even those mediated by an act of prescription but not followed or not completed by the patient. Additionally the conceptual proliferation seen, justify the ordering of the terms related to self-medication. This paper presents a proposal for classification in four groups: a. self-medication, b. self care, c. pharmaceutical preparations and medicines, and d. prescription. This proposal should facilitate the exploration and analysis of the phenomenon and allow future theoretical approaches.

O Cuidador de Enfermagem e o Cuidar em Uma Unidade de Terapia Intensiva; The Nursing Caregiver and the Caring in Intensive Care Units

There are several aggressive factors in Intensive Care Units (ICU), which reach not only patients, but the nursing caregivers, since they participate in complex procedures and death of patients. Nursing caregivers may have difficulties on their daily work routine that can influence the way of care. The goal of this study was to identify the aspects of nursing caregivers working in adult ICU. It is a describe-exploratory study with qualitative approach, developed among 21 ICU adult nursing caregivers of a school hospital in Paraná. The data were collected in May and July, 2009 by recorded and transcribed semi-structured interviews. Four categories for analysis were identified: the aspects of ICU assistance, the meaning of healthcare for the nursing caregivers, the understanding of healthcare positive aspects and disclosing the difficulties of caring. The results revealed that caring is related to some factors such as mixed feelings, the mental and physical damage caused by stress; the understanding of total caring, scientific-technique procedures, family engagement in the assistance and humanization. The positive aspects are related to the welfare due to satisfaction in the work done and recognition of work. The difficulties involved death situations, psychological and biological damages, establishing links with patients and the uncaring toward the nursing caregivers.

Build your own life : a self-help guide for individuals with Asperger`s syndrome

As someone with Asperger's Syndrome, Wendy Lawson knows all about the social difficulties that accompany the condition. In this book, she guides others on the autism spectrum through the confusing map of life, tackling the building bricks of social existence one by one with humour, insight and practical suggestions. Exploring what it is like to be an adult in an alien world, she looks at the concepts of 'self' and 'other' and talks about the people in our lives -- how to relate to them, how we can use their support and how we can protect ourselves in the process. Using poetry and illustrations, she goes on to explain the difficult notion of putting on a face, looks at how to assess personal skills in order to develop them into a suitable career and how to deal with unwelcome changes in life. This book is essential reading for all those on the higher-functioning end of the autism spectrum, helping them to get the best out of a world that is often confusing and aiding those close to them to understand their perspective. Book jacket.

Medication knowledge and self-management by people with type 2 diabetes

Objective: To explore medication knowledge and self management practices of people with type 2 diabetes.

Design: A one-shot cross sectional study using in-depth interviews and participant observation.

Setting: Diabetes outpatient education centre of a university teaching hospital.

Subjects: People with type 2 diabetes, n=30, 17 males and 13 females, age range 33-84, from a range of ethnic groups.

Outcome measures: Ability to state name, main actions and when to take medicines. Performance of specific medication-related tasks; opening bottles and packs, breaking tablets in half, administering insulin, and testing blood glucose.

Results: Average medication use > or = 10 years. Respondents were taking 86 different medicines, mean 7 +/- 2.97 SD. Dose frequency included two, three and four times per day. All respondents had > or = 2 diabetic complications +/- other comorbidities. The majority (93%) were informed about how and when to take their medicines, but only 37% were given information about side effects and 17% were given all possible seven items of information. Younger respondents received more information than older respondents. Older respondents had difficulty opening bottles and breaking tablets in half. Twenty per cent regularly forgot to take their medicines. Increasing medication costs was one reason for stopping medicines or reducing the dose or dose interval. The majority tested their blood glucose but did not control test their meters and 33% placed used sharps directly into the rubbish.

Conclusion: Polypharmacy was common. Medication knowledge and self management were inadequate and could lead to adverse events.

Caring for the wounded healer - nurturing the self

Health professionals have to deal with a “wounded society”, for example, violence, natural disasters and displaced people. Shortage of health professional groups and the high use of complementary therapies may reflect professional wounds, such as stress and burnout. Self-care is an important aspect of health professionals’ lives, given modern-day work stressors that can affect an individual's physical, mental and spiritual health. Often people become healers through personal suffering. Each person wounded or not, needs to understand his or her own need to be nurtured, and develop and implement a self-care health programme. Personal and professional reflection are important to understanding the nature of events that lead to “wounds” and how they can be transcended and the experiences used in holistic care. Aromatherapy can be a useful addition to self-care especially in managing stress and minor self-limiting conditions.

Chronic disease self-management education programs: challenges ahead

♦ Chronic disease self-management education programs aim to empower patients through providing information and teaching skills and techniques to improve self-care and doctor–patient interaction, with the ultimate goal of improving quality of life.

♦ The recent 2006–07 federal budget allocated an unprecedented $515 million over 5 years for activation of patient self-management activities, commencing this financial year.

♦ Previous attempts in other countries to incorporate self-management education activities into the health care sector have faced setbacks because of inadequate integration into primary care.

♦ Engagement of health care professionals and their endorsement of self-management activities is critical to success.

Enhancing patient engagement in chronic disease self-management support initiatives in Australia : the need for an integrated approach

♦ Although emphasis on the prevention of chronic disease is important, governments in Australia need to balance this with continued assistance to the 77% of Australians reported to have at least one long-term medical condition.

♦ Self-management support is provided by health care and community services to enhance patients’ ability to care for their chronic conditions in a cooperative framework.

♦ In Australia, there is a range of self-management support initiatives that have targeted patients (most notably, chronic disease self-management education programs) and health professionals (financial incentives, education and training).

♦ To date, there has been little coordination or integration of these self-management initiatives to enhance the patient–health professional clinical encounter.

♦ If self-management support is to work, there is a need to better understand the infrastructure, systems and training that are required to engage the key stakeholders — patients, carers, health professionals, and health care organisations.

♦ A coordinated approach is required in implementing these elements within existing and new health service models to enhance uptake and sustainability.

The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes

Background: Support for patient self-management is an accepted role for health professionals. Little evidence exists on the appropriate basis for the role of health professionals in achieving optimum self-management outcomes. This study explores the perceptions of people with type 2 diabetes about their self-management strategies and how relationships with health professionals may support this.

Methods: Four focus groups were conducted with people with type 2 diabetes:  two with English speaking and one each with Turkish and Arabic-speaking. Transcripts from the groups were analysed drawing on grounded hermeneutics and interpretive description.

Results: We describe three conceptually linked categories of text from the focus groups based on emotional context of self management, dominant approaches to self management and support from health professionals for self management. All groups described important emotional contexts to living with and self-managing diabetes and these linked closely with how they approached their diabetes management and what they looked for from health professionals. Culture seemed an important influence in shaping these linkages.

Conclusion: Our findings suggest people construct their own individual self-management and self-care program, springing from an important emotional base. This is shaped in part by culture and in turn determines the aims each  person has in pursuing self-management strategies and the role they make available to health professionals to support them. While health professionals'  support for self-care strategies will be more congruent with patients' expectations if they explore each person's social, emotional and cultural circumstances, pursuit of improved health outcomes may involve a careful balance between supporting as well as helping shift the emotional constructs surrounding a patient life with diabetes.

When the whole 'bloke' thing starts to crumble : men's access to chronic illness (arthritis) self management programs

This thesis explores the issue of men's access to chronic illness self management programs from a social constructionist perspective. A combination of research methodologies was used; a quantitative analysis to confirm gender differences in levels and patterns of service use; a qualitative analysis to gain an increased understanding of the factors affecting men's access; and a trial to test the application of the research findings. The clients and services of Arthritis Victoria were chosen as the setting for this research. The quantitative analyses were conducted on contingency tables and odds ratios and confirmed that men were under-represented as service users. The analyses also identified gender differences in patterns of service use. The qualitative analysis was based on a series of in-depth, semi-structured interviews. It was undertaken from a grounded theory approach to allow for the development of theoretical explanations grounded in the data. It was found that men's decisions to access chronic illness self management programs were strongly influenced by dominant social constructions of masculinity which constrained help-seeking and health management behaviour. However, the restrictive influence of hegemonic masculinity was progressively undermined by the increasing severity of the chronic condition until a crisis point was reached in terms of the severity of the condition or its impact on lifestyle. This resulted in a reformulation or rejection of hegemonic masculinity. The described conceptual framework was consistent for men from diverse social groupings, although it appeared less prominent in both younger and older men, suggesting that dominant social constructions of masculinity have the greatest influence on health decisions during the middle stage of adulthood when work and family obligations are greatest. The thesis findings informed the development of some guiding principles for reviewing the structure and delivery of chronic illness self management services for men. The guiding principles will have direct application in the planning of Arthritis Victoria programs, and implications for other chronic illness self management programs in Australia, and also in Western countries with a similar health and sociocultural setting to Australia.

A phase II multicentered, single-blind, randomized, controlled trial of the stroke self-management program

Background and Purpose—The benefits of chronic disease self-management programs for stroke survivors are uncertain because individuals with severe impairments have been excluded from previous research. We undertook a phase II randomized controlled trial to determine whether a self-management program designed for survivors (SSMP; 8 weeks) was safe and feasible compared to standard care (control) or a generic self-management program (generic; 6 weeks).
Methods—Stroke survivors were recruited from 7 South Australian hospitals via a letter or indirectly (eg, newspapers). Eligible participants were randomized at a 1:1:1 ratio of 50 per group. Primary outcomes were recruitment, participation, and participant safety. Secondary outcomes were positive and active engagement in life using the Health Education Impact Questionnaire and characteristics of quality of life and mood at 6 months from program completion.
Results—Of 315 people screened, 149 were eligible and 143 were randomized (48 SSMP, 47 generic, 48 control); mean age was 69 years (SD, 11) and 59% were female. Demographic features were similar between groups and 41% had severe cognitive impairment; 57% accessed the interventions, with 52% SSMP and 38% generic completing >50% of sessions (P=0.18). Thirty-two participants reported adverse events (7 control, 12 generic, 13 SSMP; P=0.3; 34% severe); however, none was attributable to the interventions. Potential benefits for improved mood were found.
Conclusions—SSMP was safe and feasible. Benefits of the stroke-specific program over the generic program included greater participation and completion rates. An efficacy trial is warranted given the forecast growth in the stroke population and improved survival trends.

The TrueBlue model of collaborative care using practice nurses as case managers for depression alongside diabetes or heart disease: a randomised trial

Objectives:
To determine the effectiveness of collaborative care in reducing depression in primary care patients with diabetes or heart disease using practice nurses as case managers.