The Broader Impact of Disability Research: Aligning Public Policy with the Experiences of People with Disabilities and Healthcare Providers

Thesis (Ph.D.)--University of Washington, 2016-07

Early stage memory loss interventions: utilization, impact, and the experience of living alone.

Thesis (Ph.D.)--University of Washington, 2016-08

Sexual Expression among Long-Term Care Residents, September 27, 2013

Sexuality among the aging traditionally been overlooked. It is gaining recognition as an important factor in lives of older adults and part of the aging process. Preserving residents' right to freedom of sexual expression in the long-term care environment is important part of the resident-centered care & residents' rights

Stigmatisering - Personers upplevelser av att leva med HIV/AIDS

Bakgrund: HIV är en infektionssjukdom som kan överföras vid bland annat oskyddade samlag, via blod och transplanterad vävnad. Då det idag finns antivirala läkemedel ses HIV inte längre som en dödlig utan en kronisk sjukdom. Personer med HIV/AIDS upplever att sjukdomen påverkar den fysiska och psykiska hälsan negativt. Sjuksköterskor har bristande kunskaper om sjukdomen samt är ovilliga att ge omvårdnad till dessa personer. Syfte: Syftet med litteraturöversikten var att beskriva personers upplevelser av att leva med HIV/AIDS. Metod: Litteraturöversikten baserades på 13 artiklar med kvalitativ design som analyserades enligt Fribergs femstegsmodell. En induktiv ansats användes. Resultat: Huvudtemat stigmatisering identifierades tillsammans med temat transition med tillhörande fem underteman samt temat rädsla med tillhörande tre underteman. Slutsats: Personerna med HIV/AIDS upplevde sig stigmatiserade av närstående, i samhället och i kontakt med hälso- och sjukvården. För att stigmatiseringen ska upphöra behöver sjuksköterskor mer kunskap om HIV/AIDS. För att nå ett personcentrerat förhållningssätt behöver sjuksköterskor se personerna bakom sjukdomen samt medvetandegöra sina attityder och förutfattade meningar mot personerna som lever med HIV/AIDS.

‘Old and ill’ : death anxiety and coping strategies influencing health professionals' well-being and dementia care

Advance care planning in nephrology care

On completion of this continuing professional development (CPD) activity, participants will be able to:
• describe advanced care planning and its relationship to person-centred care
• identify who is responsible for initiating advance care planning discussions in their nephrology department
• identify the benefits of advanced care planning• recall conversation triggers for raising the topic of advanced care planning.

Is client-centred care planning for chronic disease sustainable? Experience from rural South Australia

This qualitative evaluation of a chronic disease self-management project in rural South Australia considers the sustainability of client-centred care planning under current organisational and funding arrangements. The study involved consultation with a range of five stakeholder types over two stages (40 in the beginning stage and 39 in the middle stage) about their satisfaction with the care planning and self-management approach used in the project. All stakeholder types valued the client-centred approach because they perceived that clients were better able to accept and deal with the long-term management of their condition. However, this required that care planning should deal with a wider range of issues than just medical management, and so it took longer, which raised its sustainability in general practice under the current funding through the national health insurance programme (Medicare). The study concludes that sustainability may be addressed through further research into the role of and funding for peer-led self-management groups and the employment of care planners in organisational settings that are conducive to a client-centred approach.

Quality in palliative care from the patient perspective : Instrument development, perceptions of care received and the importance of care

The overall aim was to investigate the quality of palliative care from the patient perspective, to adapt and psychometrically evaluate the Quality from Patients’ Perspective instrument specific to palliative care (QPP-PC) and investigate the relationship between the combination of person- and organization-related conditions and patients’ perceptions of care quality. Methods: In the systematic literature review (I), 23 studies from 6 databases and reference lists in 2014 were synthesized by integrative thematic analysis. The quantitative studies (II–IV) had cross-sectional designs including 191 patients (73% RR) from hospice inpatient care, hospice day care, palliative units in nursing homes and home care in 2013–2014. A modified version of QPP was used. Additionally, person- and organization-related conditions were assessed. Psychometric evaluation, descriptive and inferential statistics were used. Main findings: Patients’ preferences for palliative care included living a meaningful life and responsive healthcare personnel, care environment and organization of care (I). The QPP-PC was developed, comprising 12 factors (49 items), 3 single items and 4 dimensions: medical–technical competence, physical–technical conditions, identity–oriented approach, and socio-cultural atmosphere (II). QPP-PC measured patients’ perceived reality (PR) and subjective importance (SI) of care quality. PR differed across settings, but SI did not (III). All settings exhibited areas of strength and for improvement (II, III). Person-related conditions seemed to be related to SI, and person- and organization-related conditions to PR, explaining 18–30 and 22-29% respectively of the variance (IV). Conclusions: The patient perspective of care quality (SI and PR) should be integrated into daily care and improvement initiatives in palliative care. The QPP-PC can measure patients’ perceptions of care quality. Registered nurses and other healthcare personnel need awareness of person- and organization-related conditions to provide high-quality person-centred care.

The quality of the physical environment and its association with activities and well-being among older people in residential care facilities

The physical environment can influence older people’s health and well-being, and is often mentioned as being an important factor for person-centred care. Due to high levels of frail health, many older people spend a majority of their time within care facilities and depend on the physical environment for support in their daily life. However, the quality of the physical environment is rarely evaluated, and knowledge is sparse in terms of how well the environment meets the needs of older people. This is partly due to the lack of valid and reliable instruments that could provide important information on environmental quality. Aim: The aim of this thesis was to study the quality of the physical environment in Swedish care facilities for older people, and how it relates to residents’ activities and well-being. Methods: The thesis comprises four papers where both qualitative and quantitative methods were used. Study I involved the translation and adaptation of the Sheffield Care Environment Assessment Matrix (SCEAM) into a Swedish version (S-SCEAM). Several methods were used including forward and backward translation, test of validity via expert consultation and reliability tests. In Study II, S-SCEAM was used to assess the quality of the environment, and descriptive data were collected from 20 purposively sampled residential care facilities (RCFs). Study III was a comparative case study conducted at two RCFs using observations, interviews and S-SCEAM to examine how the physical environment relates to older people’s activities and interactions. In study IV, multilevel modeling was used to determine the association between the quality of the physical environment and the psychological and social well-being of older people living in RCFs. The data in the thesis were analysed using qualitative content analysis, and descriptive, bivariate and multilevel statistics. Results: A specific result was the production of the Swedish version of SCEAM. The instrument contains 210 items structured into eight domains reflecting the needs of older people. When using S-SCEAM, the results showed a substantial variation in the quality of the physical environment between and within RCFs. In general, private apartments and dining areas had high quality, whereas overall building layout and outdoor areas had lower quality. Also, older people’s safety was supported in the majority of facilities, whereas cognitive support and privacy had lower quality. Further, the results showed that environmental quality in terms of cognitive support was associated with residents’ social well-being. Specific environmental features, such as building design and space size, were also noted, through observation, as influencing residents’ activities, and several barriers were found that seemed to restrict residents’ full use of the environment. Conclusions: This thesis contributes to the growing evidence-based design field. The S-SCEAM can be used in future research on the association between the environment and people’s health and well-being. The instrument could also serve as a guide in the planning and design process of new RCFs.

End-of-life decision making for older people

This chapter deals with the increasing issues surrounding end-of-life decision making. As the life trajectory for older people changes, the need for open discussion about their health problems and treatment becomes more critical. Acceptance of the ageing process itself is often not easy so the matter of a good death is even more distressing for some people to consider. The vignette provides an excellent discussion on the need for open dialogue with the older person and their families, whether they are acutely ill or have chronic health problems. How a person wishes to be treated when quality of life is not going to improve, no matter what interventions are put in place, seems essential for person-centred care. The issue of competency is one that must be determined before any decision is made by any person involved in care.

The impact of Health Information Technology (I-HIT) scale : the Australian results

One of role of the nurse in the clinical setting is that of coordinating communication across the healthcare team. On a daily basis nurses interact with the person receiving care, their family members, and multiple care providers thus placing the nurse in the central position with access to a vast array of information on the person. Through this nurses have historically functioned as “information repositories”. With the advent of Health Information Technology (HIT) tools there is a potential that HIT could impact interdisciplinary communication, practice efficiency and effectiveness, relationships and workflow in acute care settings \[1]\[3]. In 2005, the HIMSS Nursing Informatics Community developed the IHITScale to measure the impact of HIT on the nursing role and interdisciplinary communication in USA hospitals. In 2007, nursing informatics colleagues from Australia, Finland, Ireland, New Zealand, Scotland and the USA formed a research collaborative to validate the IHIT in six additional countries. This paper will discuss the background, methodology, results and implications from the Australian IHIT survey of over 1100 nurses. The results are currently being analyzed and will be presented at the conference.

Implementation and evaluation of a new model of nursing practice in radiation oncology

Patients undergoing radiation therapy for cancer face a series of challenges that require support from a multidisciplinary team which includes radiation oncology nurses. However, the specific contribution of nursing, and the models of care that best support the delivery of nursing interventions in the radiotherapy setting, is not well described. In this case study, the Interaction Model of Client Health Behaviour and the associated principles of person-centred care were incorporated into a new model of care that was implemented in one radiation oncology setting in Brisbane, Australia. The new model of care was operationalised through a Primary Nursing/Collaborative Practice framework. To evaluate the impact of the new model for patients and health professionals, multiple sources of data were collected from patients and clinical staff prior to, during, and 18 months following introduction of the practice redesign. One cohort of patients and clinical staff completed surveys incorporating measures of key outcomes immediately prior to implementation of the model, while a second cohort of patients and clinical staff completed these same surveys 18 months following introduction of the model. In-depth interviews were also conducted with nursing, medical and allied health staff throughout the implementation phase to obtain a more comprehensive account of the processes and outcomes associated with implementing such a model. From the patients’ perspectives, this study demonstrated that, although adverse effects of radiotherapy continue to affect patient well-being, patients continue to be satisfied with nursing care in this specialty, and that they generally reported high levels of functioning despite undergoing a curative course of radiotherapy. From the health professionals’ perspective, there was evidence of attitudinal change by nursing staff within the radiotherapy department which reflected a greater understanding and appreciation of a more person-centred approach to care. Importantly, this case study has also confirmed that a range of factors need to be considered when redesigning nursing practice in the radiotherapy setting, as the challenges associated with changing traditional practices, ensuring multidisciplinary approaches to care, and resourcing a new model were experienced. The findings from this study suggest that the move from a relatively functional approach to a person-centred approach in the radiotherapy setting has contributed to some improvements in the provision of individualised and coordinated patient care. However, this study has also highlighted that primary nursing may be limited in its approach as a framework for patient care unless it is supported by a whole team approach, an appropriate supportive governance model, and sufficient resourcing. Introducing such a model thus requires effective education, preparation and ongoing support for the whole team. The challenges of providing care in the context of complex interdisciplinary relationships have been highlighted by this study. Aspects of this study may assist in planning further nursing interventions for patients undergoing radiotherapy for cancer, and continue to enhance the contribution of the radiation oncology nurse to improved patient outcomes.

Uncovering the evidence of non-expert nephrology nursing practice

Expertise in nursing has been widely studied although there have been no previous studies into what constitutes expertise in nephrology (renal) nursing. This paper, which is abstracted from a larger study into the acquisition and exercise of nephrology nursing expertise, provides evidence of the characteristics and practices of non-expert nephrology nurses. Using the grounded theory method, the study took place in one renal unit in New South Wales, Australia, and involved six non-expert and 11 expert nurses. Sampling was purposive then theoretical. Simultaneous data collection and analysis using participant observation, review of nursing documentation and semistructured interviews was undertaken. The study revealed a three-stage skills-acquisitive process that was identified as non-expert, experienced non-expert and expert stages. Non-expert nurses showed superficial nephrology nursing knowledge and limited experience; they were acquiring basic nephrology nursing skills and possessed a narrow focus of practice.

Knowledge translation for effective consumers

With the emergence of patient-centered care, consumers are becoming more effective managers of their care—in other words, “effective consumers.” To support patients to become effective consumers, a number of strategies to translate knowledge to action (KTA) have been used with varying success. The use of a KTA framework can be helpful to researchers and implementers when framing, planning, and evaluating knowledge translation activities and can potentially lead to more successful activities. This article briefly describes the KTA framework and its use by a team based out of the University of Ottawa to translate evidence-based knowledge to consumers. Using the framework, tailored consumer summaries, decision aids, and a scale to measure consumer effectiveness were created in collaboration with consumers. Strategies to translate the products into action then were selected and implemented. Evaluation of the knowledge tools and products indicates that the products are useful to consumers. Current research is in place to monitor the use of these products, and future research is planned to evaluate the effect of using the knowledge on health outcomes. The KTA framework provides a useful and valuable approach to knowledge translation.

[Letter to the Editor] Telemonitoring in Patients with Heart Failure

To the Editor: Chaudhry et al. suggest that enhanced support in the use of a telephone-based interactive voice-response system for patients recently discharged after worsening heart failure does not improve outcomes. This finding is broadly consistent with previous systematic reviews of telephone support1 and contrasts with the substantial effect observed with home telemonitoring of vital signs in similar populations.1 The treatment of patients in the control group was excellent, but unrepresentative of usual clinical care and not inferior to the treatment of patients receiving enhanced support. Monitoring alone is unlikely to improve outcomes but may do so when it improves prescription of or adherence to lifesaving treatments. Given enough resources, traditional methods for delivering care may render an interactive voice-response system or a home telemonitoring system ineffective. Nonetheless, there may be more cost-efficient approaches to ensuring quality care.2 Informal post hoc addition of these data to our recent meta-analysis of telephone support1 does not substantially alter the point estimates for death from any cause or heart-failure−related hospitalizations, but it does nullify the small benefit in hospitalizations for any cause, which may not be reduced by a heart-failure−focused intervention.1 Original article: Telemonitoring in Patients with Heart Failure NEJM. December 9, 2010 | S.I. Chaudhry and Others