Contextual influences on knowledge translation capacity in a nursing home organisation: A phenomenological hermeneutical study.

INTRODUCTION: The demand for advanced clinical care in nursing homes (NHs) is increasing. Evidence-based practices and knowledge translation (KT) initiatives are growing to bridge the gap between what is known and what is done. However, research on contextual influence on KT has primarily focused on hospital settings. AIM: To expand our understanding of contextual influences on KT capacity in a NH organisation. DESIGN AND METHODS: Lindseth and Norberg's phenomenological hermeneutical method was used to explore and describe practice development nurses' experiences, perspectives and practices regarding how contextual factors influence KT capacity in NHs. Focus group interviews, participant observations, in-depth interviews and non-participant observations provided the data. RESULTS: Two main themes and four subthemes were identified. (1) Continuous limited resources are a cultural condition that inhibits KT readiness; prioritising keeping the NH machinery running at all costs and having contrasting care philosophies undermines KT. (2) Organisational prioritisations leave KT as a missing cogwheel in the machinery; retaining a system of fragmented KT strategies and lacking a structure for collective KT effort. CONCLUSION: The study showed that KT held a minor role in the fast-paced NH machinery. Contradicting values characterise the NH organisation, resulting in a lack of a common vision and priorities. Building a sustainable KT capacity and providing evidence-based practice necessitates explicit responsibilities, dedicated resources and robust organisational support. Management has a critical role in strengthening the position of KT. Incorporating KT in daily NH practice can help staff become adaptable and confident, capable of meeting the increasing challenges of advanced care that alleviates suffering and promote the health and well-being of NH patients.

Dignity humiliation as experienced by wives caring for a home-dwelling husband with dementia.

In this study, we explored key sources that led wives who care for their husbands with dementia at home to experience dignity humiliation - an issue that affects the well-being of women around the world. Through hermeneutic interpretation of in-depth interviews, three key sources of this were identified: interpersonal experiences of people's indifference, curiosity and disrespectful attitudes; interpersonal experiences of limited access to healthcare services and incompassionate treatment by healthcare professionals, and; intrapersonal experiences of self-deprecation. Knowledge of key sources leading to dignity humiliation can be used to improve interdisciplinary healthcare practices and policy development, specifically relating to this group of caregivers.

Dementia care in Nepalese old age homes: Critical challenges as perceived by healthcare professionals.

AIM: To explore and describe critical challenges in current dementia care practice as perceived by healthcare professionals (HCPs) in old age homes (OAHs) in Kathmandu, Nepal. BACKGROUND: In Nepal, the number of older people with dementia is rapidly rising, and there is a need for knowledge of how to provide quality dementia care in OAHs. METHODS: An exploratory hermeneutic design, employing qualitative interviews with eleven HCPs caring for residents with dementia in a total of five OAHs. FINDINGS: The analysis showed that HCPs found limited educational training in dementia-specific care to be a critical challenge leading to reduced quality in caregiving practice. Insufficient HCP competence in dementia-specific care undermined adequate coping with residents' cognitive disturbances and the behavioural and psychological symptoms in dementia (BPSD). Poor HCP/medical doctor (MD)-to-patient ratio was perceived as a critical challenge preventing proper diagnostic examination, treatment and dementia-specific care practice. CONCLUSIONS: Limited educational training, sparse competence in mastering residents' cognitive disturbances and BPSD, and insufficient resources to ensure sufficient numbers of HCPs and MDs for proper diagnostic examination, treatment and dementia-specific care were identified as critical challenges restricting quality dementia care in these Nepalese OAHs. IMPLICATIONS FOR PRACTICE: The study findings indicate a need for a clear Nepalese policy and a national plan for dementia care in OAHs that includes strategies for HCP educational training and how to provide resources to ensure a sufficient workforce of HCPs and MDs for proper diagnostic examination, treatment and dementia-specific care.

Healthcare professionals' perceptions of dignity-preserving care for older home-dwelling women with incurable cancer in Norway.

Municipal end-of-life care for older home-dwelling patients with cancer is a complex matter requiring healthcare professionals (HCPs) to recognize gender differences in a social, historical and organizational context. A qualitative approach was chosen to explore and identify HCPs value-based principles and organizational conditions promoting dignity-preserving care practice for these women. HCPs recognized the importance of sheltering the women's identity, their sense of being home and acknowledged their personal preferences as value-based principles, whereas creating a flexible culture of care, establishing a functional professional collaboration and developing individualized plans of care, were crucial organizational conditions influencing the practice of dignity-preserving care.

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR) Part 2.

Previously, we described the development of the first part of the framework of Patient and Informal Caregiver Participation in Research (PAICPAIR part 1) and how it was implemented in the empirical study Dying With Dignity. Currently, we present our choices and experiences gained in PAICPAIR part 2, highlighting how PAICPAIR guided us as a modifiable and adaptable framework, with a particular emphasis on identifying and meeting the individual needs of our vulnerable coresearchers. This framework can be used as a methodological approach and study design in future research and inspire researchers to include patients receiving palliative care and informal caregivers-as coresearchers.

Integrated knowledge translation in nursing homes: exploring the experiences of practice development nurses.

BACKGROUND: Practice Development Nurses (PDNs) in Norwegian nursing homes (NHs) hold a specific responsibility for knowledge translation in this increasingly complex healthcare setting. They were involved as end users in an integrated knowledge translation (IKT) study, developing, testing and evaluating the IMPAKT (IMPlementation of Action to Knowledge Translation) intervention. PDNs participated in an educational programme tailored to their own defined needs. In a second intervention component, the PDNs applied their new skills with facilitation, in implementing the National Early Warning Score (NEWS2) in their respective NHs. The aim of this study was to explore 1) the PDNs' experiences of participating in an IKT educational intervention, and 2) how they applied the learning in planning, tailoring and initial implementation of the NEWS2. METHODS: This is a qualitative exploratory study based on a phenomenological hermeneutical method. Study participants were PDNs working in the nine NHs in the intervention group of the IMPAKT trial. We conducted nine in-depth interviews and eight non-participatory observational sessions of the intervention delivery. RESULTS: The PDNs expressed that the educational programme met their needs and enhanced their understanding about leading knowledge translation (KT). They reported a move from operating in a "big black box of implementation" to a professional and structured mode of KT. The gamechanger was a shift from KT as the PDNs' individual responsibility to KT as an organizational matter. The PDNs reported enhanced competencies in KT and in their ability to involve and collaborate with others in their facility. Organizational contextual factors challenged their KT efforts and implementation of the NEWS2. CONCLUSIONS: This study demonstrates that an IKT approach has the potential to advance and improve staff competencies and NH readiness for KT. However, individual motivations and competencies were challenged within an organizational culture which was less receptive to this new leadership role and level of KT activity.

Optimizing a knowledge translation intervention: a qualitative formative study to capture knowledge translation needs in nursing homes.

BACKGROUND: Knowledge translation (KT) has emerged as an important consideration to reduce knowledge-to-practice gaps in healthcare settings. Research on KT approaches in nursing homes (NHs) is lacking. There is a need to understand the challenges faced in NHs and how these can be managed. This study is part of the larger IMPAKT (IMPlementation and Action for Knowledge Translation) study which addresses KT in NHs. The aim of the study presented here was to identify crucial staff and organizational needs in order to inform the development of a KT intervention in NHs. METHODS: A multimethod qualitative approach was applied. We invited practice development nurses (PDNs) to describe current practice, and to identify problems and needs concerning KT in NHs. We followed the recommendations of the development phase of the MRC framework for developing complex interventions. Data were collected through four focus groups and participatory observations in six NHs. Analysis was conducted according to structural thematic analysis based on a phenomenological hermeneutic method. RESULTS: We identified three themes that expressed the PDNs' perceived needs for successful KT implementation: (1) narrowing the PDN role, (2) developing an EBP culture and (3) establishing collaborative alliances. Nine subthemes derived from the PDNs' experiences and current practice, illustrating needs at individual, relational and organizational levels. CONCLUSIONS: Rigorous development of complex interventions may add relevance to the intervention, increase the likelihood of success and reduce research waste. Insight into the NH context and organization have helped us define problems and articulate needs that must be addressed when tailoring the IMPAKT intervention. TRIAL REGISTRATION: The IMPAKT trial was retrospectively registered in the ISRCTN Registry (Trial ID: 12,437,773) on March 19th, 2020.

Dignity of older home-dwelling women nearing end-of-life: Informal caregivers' perception.

BACKGROUND: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss. AIM: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. RESEARCH DESIGN AND METHOD: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. ETHICAL CONSIDERATION: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. RESULTS: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. DISCUSSION AND FINAL CONSIDERATIONS: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients.

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study.

BACKGROUND: As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS: Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS: We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION: We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home.

In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women's dignity included having a sense of control, making one's own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.

LIVE@Home.Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial.

BACKGROUND: The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. METHODS: The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. DISCUSSION: We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04043364. Registered on 15 March 2019.

Home-dwelling persons with dementia's perception on care support: Qualitative study.

BACKGROUND: Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. RESEARCH OBJECTIVE: This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. RESEARCH DESIGN: A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations. PARTICIPANTS AND RESEARCH CONTEXT: Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. ETHICAL CONSIDERATIONS: Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants' integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. FINDINGS: The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants' assessments of daycare centers relied on specific aspects, with high individual variety. DISCUSSION AND CONCLUSION: The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons' everyday life. This indicates that patient participation in decision-making processes for this group is-in addition to be a judicial and ethical requirement-crucial to ensure adequate care and support.

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR): Part 1.

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process. A framework for Patient and Informal Caregiver Participation In Research (PAICPAIR) is suggested-creating a stronger foundation for democracy, equality, and research quality by also promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as coresearchers.

"We live as good a life as we can, in the situation we're in" - the significance of the home as perceived by persons with dementia.

BACKGROUND: The coming years will see more persons with dementia living longer at home. However, "the home" is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home. METHODS: Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on "The home" were chosen as a framework for the theoretical interpretation of the findings. RESULTS: The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point. CONCLUSION: The study suggests that the participants' home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.

Dignity work of older women caring for a husband with dementia at home.

In this study, we explored perceptions of dignity, and sources preserving dignity of six older Norwegian women caring for a home-dwelling husband with dementia. Through hermeneutic interpretation of in-depth interviews, "having personal integrity," "mastering everyday life," and "giving of one self" were identified as crucial intrapersonal aspects of dignity - while "acknowledging worthiness and uniqueness of each human being" was found to be an essential interpersonal aspect. Nine dignity-preserving sources identified suggests that the wives engaged in "dignity work" to preserve their own dignity as a caregiver, as well as to safeguard the dignity of their husbands who were vulnerable to dignity loss.

Home-Care Nurses' Experience With Medication Kit in Palliative Care.

Home-care nurses assist many advanced cancer patients desiring to live in the familiar surroundings of their own home until the day they die. The purpose of this study was to increase the understanding concerning home-care nurse experience with the Norwegian version of the medication kit as a tool in symptom management for the terminally ill. The study had a qualitative, descriptive, and explorative design, based on hermeneutic methodology. Two focus group interviews with 4 subsequent in-depth interviews helped generate data. The nurses reported how thorough planning and clear instructions on medication kit usage gave security and facilitated proper application. Good collaboration with primaryphysicians, including accessibility and clarifying meetings in particular, was necessary. In the past, infrequent use of the medication kit hindered its relevance for symptom management. Home-care nurses were often alone with the responsibility for assessing the patient and administering medications, leading to unjustifiable professional conditions, particularly during night shifts. Thus, clear guidelines, planning and clarifying meetings with primary physicians, helped to facilitate the use of the medication kit.

Crucial aspects promoting meaning and purpose in life: perceptions of nursing home residents.

BACKGROUND: Meaning and purpose in life are fundamental to human beings. In changing times, with an aging population and increased life expectancy, the need for health care services and long-term care is likely to grow. More deeply understanding how older long-term care residents perceive meaning and purpose in life is critical for improving the quality of care and the residents' quality of life. The purpose of this study was to explore crucial aspects promoting nursing home residents' experience of meaning and purpose in everyday life. METHOD: An exploratory hermeneutical design with qualitative interviews for collecting data. RESULTS: Four key experiences were found to promote meaning and purpose in life: 1) physical and mental well-being, 2) belonging and recognition, 3) personally treasured activities and 4) spiritual closeness and connectedness. CONCLUSION: In supporting meaning and purpose in life of nursing home residents, the residents' everyday well-being should be a central focus of care and facilitate personally treasured activities. Focused attention should also be given to the meaning-making power of experiencing belonging, recognition and spiritual connectedness.

Crucial dimensions constituting dignity experience in persons living with dementia.

Dignity is seen as an essential need, fundamental right, and inherent quality of each human being. There is however, a need for increased knowledge on crucial dimensions constituting dignity experience in persons living with dementia. This study explored personal dimensions of life which persons with dementia perceived crucial for experiencing dignity in their daily lives. Based on the findings of eight empirical sub-dimensions, three main dimensions crucial for constituting dignity experience, were identified through hermeneutical interpretation: A historical dignity-dimension, acknowledging one's own life-projects and life-history; an intrapersonal dignity-dimension, recognizing one's own human worth, and living according to internal values; and an interpersonal dignity-dimension, experiencing being part of a caring and confirming communion. Knowledge of dignity preservation should be a crucial foundation for future dementia care.

Relational interactions preserving dignity experience: Perceptions of persons living with dementia.

BACKGROUND: Dignity experience in the daily lives of people living with dementia is influenced by their relational interactions with others. However, literature reviews show that knowledge concerning crucial interactional qualities, preserving their sense of dignity, is limited. AIM: The aim of this study was to explore and describe crucial qualities of relational interactions preserving dignity experience among people with dementia, while interacting with family, social network, and healthcare professionals. METHODOLOGY: The study was founded upon Gadamer's philosophical hermeneutics, and an exploratory design employing qualitative research interviews was conducted. PARTICIPANTS AND RESEARCH CONTEXT: A total of 11 individuals diagnosed with mild to moderate dementia, living in their own homes, were recruited from two Hospital Memory Clinics in Norway. ETHICAL CONSIDERATIONS: In recruiting persons with dementia as study participants, sensitivity toward their life history, autonomy, integrity, relationships, and dignity is essential. These standards, and the ethical principles of moral sensitivity to their vulnerability, doing no harm, showing justice, and respecting their personal utility, guided our research. RESULTS: Three main interactional qualities preserving the participants' dignity experience were found: Experiencing love and confirmation; experiencing social inclusion and fellowship; experiencing humane warmth and understanding within a caring culture, while being met as an equal human being. A total of 10 sub-qualities were identified within these 3 main qualities. DISCUSSION AND FINAL CONSIDERATIONS: Dignity experience among the participants was preserved when certain interactional qualities were present in their interactions with family, social network, and healthcare professionals. While supporting some of the findings of previous studies, this study adds new knowledge on the subject. Knowledge of relational interactions toward preserving dignity experience should be a fundamental part of future dementia care practice. Based on the results of this study, an empirical-theoretical model was developed for this purpose.

Dignity-preserving dementia care: a metasynthesis.

Research indicates the essentiality of dignity as a vital component for quality of life, reconfirming the emphasis on dignity preservation in the international code of nursing ethics. Applying Noblit and Hare's meta-ethnography, the aim of the study was to develop a theory model by synthesizing 10 qualitative articles from various cultural contexts, exploring nurse and allied healthcare professional perception/practice concerning dignity-preserving dementia care. "Advocating the person's autonomy and integrity," which involves "having compassion for the person," "confirming the person's worthiness and sense of self," and "creating a humane and purposeful environment," was identified as a primary foundation for dignity-preserving dementia care. "Balancing individual choices among persons no longer able to make sound decisions, against the duty of making choices on behalf of the person," which involves "persuasion" and/or "mild restraint," was considered a crucial aspect in certain situations. "Sheltering human worth-remembering those who forget" was identified as a comprehensive motive and core value within dignity-preserving dementia care.