How patients and clinicians experience the utility of a personalized clinical feedback system in routine practice.

OBJECTIVE: The objective was to explore how a person-adaptive clinical feedback system (CFS) effects its users, and how meaning and relevance are negotiated. METHODS: We conducted a 10-month case-study of the implementation and practice of Norse Feedback, a personalized CFS. The data material consisted of 12 patient interviews, 22 clinician interviews, 23 field notes, and 16 archival documents. RESULTS: We identified four main categories or themes: (i) patients' use of clinical feedback for enhanced awareness and insight; (ii) patients work to make clinical feedback a communication mode; (iii) patients and clinicians negotiate clinical feedback as a way to influence treatment; and (iv) clinical feedback requires an interactive sense-making effort. CONCLUSION: Patients and therapists produced the meaning and relevance of the CFS by interpreting the CFS measures to reflect the unique patient experience of the patient-therapist relationship. Patients regarded CFS as a tool to inform therapy with important issues. Patients became more self-aware and prepared for therapy.

Do nurses and other health professionals' in elderly care have education in family nursing?

BACKGROUND: Family caregivers are an important resource for providing care to elderly living at home. How nurses and other health professionals interact with family caregivers can have both a positive and a negative impact on the family caregivers' situation. We lack knowledge of Norwegian nurses' and other health professionals' participation in educational programmes about family caregivers' needs and situations. AIM: The purpose of this study was to investigate whether nurses and other health professionals working in home-care nursing had participated in educational programmes about family caregivers. Additionally, the study aimed to determine whether participation in educational programmes was associated with awareness of family caregivers' contributions to elder care. METHODS: This is a quantitative study, and it was conducted as a cross-sectional study. The participants were required to be educated as nurses, nursing assistants or other health professionals with relevant health education and to be working with the elderly in home-care nursing settings. Descriptive statistics and trivariate table analysis using the Pearson Chi-square t-test were conducted using Statistical Package for the Social Sciences (SPSS). RESULT: A total of 152 nurses and health professionals in home-care nursing in 23 municipalities have participated (in one county in Norway). The results showed that only half of the respondents had participated in educational programmes about family caregivers' needs and situations. The study did not provide a clear answer regarding the association between participation in educational programmes and awareness of family caregivers' contributions. CONCLUSIONS: The results indicate that nurses and other health professionals, to a small extent, have participated in educational programmes about family caregivers. Our findings indicate that participation in educational programmes may be particularly important for health professionals in leadership positions and for health professionals with vocational training.

Access to information and counselling - older cancer patients' self-report: a cross-sectional survey.

BACKGROUND: An increasingly older population, improved diagnostics and treatment increase the number of older cancer survivors, thus more than 60% of those affected by cancer are over the age of 65. Symptom relief and the prevention of functional impairment are important tasks for home care nursing, considering that patients can live a long time with their cancer disease and related side effects. The aim of this study was to investigate the extent to which cancer patients over the age of 65 reported access to information and counselling from home care nursing services, including those offered by the cancer coordinator. METHODS: A cross-sectional survey was used. The survey consisted of 174 cancer patients from two regions in Norway living at home (101 women; 66-92 years). The questionnaire contained questions of various sequences including information and advices given and data on access to and use of home health care services. The questions focused on the extent to which home health care services provided the following: 1) information about the disease and treatment, 2) information about consequences and complications of the cancer disease, 3) nutritional advice and 4) advice on physical activity. Demographic, clinical and organizational variables were used. SPSS program version 22 was employed to perform descriptive and inferential statistics including correlation and logistic regression analysis. For ethical reasons, patients who were dying, delirious or with presence of cognitive impairment (any kind of dementia) were excluded. RESULTS: The results showed that a majority (67-77%) of the respondents reported low levels of information and counselling offered. Low levels represents in this study medium, small and very small degree (Likert scale). Women, those above 85 years of age and patients with a gynecological or hematological cancer diagnosis experienced less access to information and counselling. Respondents facing availability of a cancer coordinator reported significantly higher access to information about the disease and treatment (p = 0.03), nutritional advice (p = 0.04) and advice on physical activity (p = 0.04) compared to those who only had contact with a home health care nurse or home health care assistant. CONCLUSIONS: The results indicated that the availability of a cancer coordinator facilitated personalized information and counselling for older cancer patients.

Constructing togetherness throughout the phases of dementia: a qualitative study exploring how spouses maintain relationships with partners with dementia who live in institutional care.

AIMS AND OBJECTIVES: To explore and describe how spouses involve themselves in the relationship with their partners with dementia who live in institutional care. BACKGROUND: Positive reciprocity between partners has been proven to be significant for spouses with partners living with dementia at home. However, little is known about spousal involvement after placement of a partner in an institutional setting. This subject was therefore the focus of this study. DESIGN: Constructivist grounded theory was used to develop meaningful concepts considering the relational processes experienced and described by the spouses. METHODS: Interviews were conducted with 15 spouses (eight women and seven men ranging in age from 64-90 years) of dementia-afflicted persons living in institutional care. Theoretical sampling, constant comparison and memo-writing guided the data collection and analysis. RESULTS: The analysis showed how the spouses adopted different visiting routines to preserve continuity in their relationship throughout the phases of dementia. Three categories described how these visiting routines were used and adapted along with their partners' dementia progressions in the process of constructing togetherness: 'maintaining involvement and intimacy to preserve continuity in their relationship,' 'structuring visits to facilitate interaction and communication' and 'pursuing moments of mutuality to preserve continuity in a deteriorating relationship.' CONCLUSIONS: Being involved and experiencing continuity in the relationship seemed important to the spouses after their partners' placement in institutional care. In the process of constructing togetherness, visiting routines were used to facilitate situations in which they could connect with their partners. These routines were continuously adjusted throughout the phases of dementia. RELEVANCE TO CLINICAL PRACTICE: There is a need for a systematic approach to provide sufficient support to spouses throughout their partners' dementia progressions to assist their ongoing involvement.

Sensory stimulation for persons with dementia: a review of the literature.

AIMS AND OBJECTIVES: To provide an overview of available sensory stimulation interventions, and their effect on persons with dementia and to present theoretical and methodological characteristics of the studies included. BACKGROUND: Different sensory stimulation interventions are used for persons with dementia to increase alertness, reduce agitation and improve quality of life. However, the effect of these interventions is not clear, neither are their characteristics. DESIGN: A systematic search and review of the literature with description of the content and an evaluation of theoretical and methodological approaches. METHODS: Systematic searches in CINAHL, PubMed (Medline), The Cochrane library and PsycINFO. Studies included have been subject to quality assessment by means of Critical Appraisal Skills Programme. RESULTS: Fifty-five studies were included and thirty of these documented significant effect. The effect of the sensory stimulation interventions mainly reported on negative behaviours, except from five studies assessing quality of life and well-being. The majority of the studies had methodological limitations. The different sensory stimulation interventions were organised into eight categories: music, light therapy, acupressure/reflexology, massage/aromatherapy and doll therapy/pet therapy/toy therapy, the Sonas programme and Snoezelen. CONCLUSIONS: More studies are needed to clarify appropriate substantial background for the specific interventions. However, most of the studies based their interventions on a theoretical foundation. Furthermore, more research is needed to measure the effect of sensory stimulation on communication as well as quality of life. In addition, studies are to focus on whether the effect depends on the stage of dementia. RELEVANCE TO CLINICAL PRACTICE: Nurses are to be aware of sensory stimulation as a possible intervention to improve persons' quality of life.

The loss of a shared lifetime: a qualitative study exploring spouses' experiences of losing couplehood with their partner with dementia living in institutional care.

AIMS AND OBJECTIVES: To explore and describe spouses' experiences of losing couplehood with their dementia-afflicted partner living in institutional care. BACKGROUND: Despite the losses and experiences of discontinuity due to the cognitive decline caused by dementia, the feelings of belonging and reciprocity in close relationships are still crucial to many couples. However, these experiences of spouses with partners living in institutional care are not well documented and are thus the focus of this study. DESIGN: A constructivist grounded theory approach was used to capture the relational processes described by the spouses. METHODS: Conversational interviews were conducted with n = 10 spouses of dementia-afflicted persons living in institutional care. Data were analysed using the constant comparative method. RESULTS: The spouses' experiences of losing couplehood were primarily connected to separation from the partner and the sense of being alone. They were also related to the loss of the shared past and future. However, these experiences did not seem to be constant; short glimpses of connectedness, reciprocity and interdependence contributed to a feeling of couplehood, although these were only momentary. CONCLUSIONS: The spouses' experiences of losing couplehood were dynamic and were related to the couple's entire life. The spouses wavered between senses of loss and belonging to couplehood, depending on the conditions characterising the moment. RELEVANCE TO CLINICAL PRACTICE: Healthcare personnel must recognise the severity of some spouses' experiences of losing couplehood and be aware of how these experiences can fluctuate and be situation dependent.

Sense of well-being 10 years after stroke.

AIMS AND OBJECTIVES: To describe factors that promote subjective well-being in a long-time perspective of 10 years after stroke. BACKGROUND: The research literature describes circumstances that are difficult to deal with after a stroke, but there is relatively little knowledge of factors that contribute to well-being in a longer-time perspective than two years after the incident. This study focuses on such conditions in a 10-year perspective. DESIGN: Qualitative study METHODS: Qualitative in-depth interviews were carried out with nine stroke survivors. The interviews addressed their description of factors accounting for adaptation and subjective well-being after the stroke. Kvale and Brinkmann's (2008, Interview. Sage Publications, Inc., København) guidelines for qualitative research informed the analysis. RESULTS: Six major themes emerged from these analyses: (1) personal characteristics as the cause of positive adaptation to the new situation, (2) new meaningful activities, (3) new health habits, (4) social networks and family, (5) economical resources and (6) public help. Only a few of the survivors had received any home-based nursing care or health assistance, but they were nevertheless mainly satisfied with their rehabilitation outcome. Self-care, health literacy, stamina, a positive way of thinking and attention from family and friends seemed to be of immense importance for adaptation and well-being. CONCLUSION: Personal characteristics and synergy with significant others seem to be the most important factors for having a good and long life after a stroke. RELEVANCE TO CLINICAL PRACTICE: The results of this study will contribute to rehabilitation planning and to understanding, assisting and supporting stroke survivors in restoring a good life despite disabilities after the stroke.

Caring for a home-dwelling older parent with mental health problems: a narrative analysis of family caregivers' experiences.

PURPOSE: To gain knowledge regarding family caregivers of home-dwelling older adults with mental health problems and the meaning-making of the caregiver's role. DESIGN: An explorative qualitative study involving narrative analysis. METHODS: Semi-structured individual interviews were conducted among eight adult children. Interview data were analysed using narrative analysis. The reporting adhered to consolidated criteria for reporting qualitative studies. RESULTS: Each participant narrated unique and nuanced stories of the caregiver role, but their stories also revealed prominent themes across participants' experiences and meaning-making. The analysis revealed three themes: family relationships through a long life, a demanding and difficult caregiver role, and reconstructing the caregiver's role by leaving the responsibility to healthcare services. CONCLUSION: Family caregivers experienced the role as purposeful and demanding. Mostly, psychological reactions to behaviour symptoms and duration of caregiving were considered difficult and demanding. They described that they lacked knowledge of the illness and how to perform care. Sharing care responsibility with healthcare services had the potential to ease family caregivers' burden. However, based on a long life as caregivers, some experienced difficulties when reconstructing and adjusting the role to their life situation.

Do You Feel Safe at Home? A Qualitative Study among Home-Dwelling Older Adults with Advanced Incurable Cancer.

Many older adults with cancer prefer to live at home, and home treatment and outpatient care have been recommended for such patients. To improve their mental health, it is important to identify the challenges that are faced by home-dwelling older adults with cancer. This study aimed to examine the impact of the home on older adults with advanced cancer who were receiving treatment and follow-up care. In a cross-sectional design with criterion-based sampling, eight qualitative interviews were transcribed and interpreted thematically. We identified three themes of home-safety management: good home-safety management, uncertain home-safety management, and home-safety management collapse. Moreover, we revealed eight sub-themes important to the participants' home-safety experience. Ensuring that older adults feel safe at home will afford them the opportunity to enjoy living at home, which in turn may alleviate their symptom burden and enhance their mental health.

Professionals' understanding of their responsibilities in the collaboration with family caregivers of older persons with mental health problems in Norway.

Research has highlighted the importance of health and social care professionals' collaboration with family caregivers. In the field of mental healthcare, involvement of family members is perceived as beneficial to the recovery process of the care recipient. Furthermore, family care-giving is an essential part of elderly care. It is well documented that family members need support to prevent negative consequences of care-giving. Nevertheless, involvement of and support for family caregivers have not developed into a common practice, and research has identified professional barriers to collaboration with family caregivers in several areas. The aim of this study was to explore professionals' experiences of collaboration with family caregivers of older persons with mental health problems, and how they understood their responsibility towards families. We conducted three focus group interviews with 18 health and social care professionals working in community-based services, in three rural municipalities in Western Norway. The thematic analysis by Braun and Clarke guided the analysis. The findings in relation to the professionals' role and responsibility towards family caregivers are presented in three themes: family caregivers - a resource that needs support; a responsibility with unclear boundaries; and balancing different needs. Professionals recognised family caregivers' need for support and acknowledged the importance of family relationships. However, they experienced dilemmas in performing their dual responsibility of caring for the older care recipient as well as the family member, which they described as having unclear guidelines. They also experienced that they had insufficient knowledge to take on this responsibility. We argue that the exercising of discretion is essential for the professionals' responsibility, and that clarification of their responsibility is needed. We recommend a stronger focus in education on developing competence in the family perspective. Furthermore, the apportionment of professionals' responsibility needs to be formalised, especially when several services are involved in providing care.

Pain, fatigue, anxiety and depression in older home-dwelling people with cancer.

Aim: Globally, cancer incidence counts for more than 14 million cases and the number increases with age. The aim of this study was to investigate the occurrence of pain, fatigue, anxiety and depression in association with demographic and clinical factors. Design: A cross-sectional descriptive design was used. Methods: We performed descriptive statistics to analyse the questionnaires completed from 174 older home-dwelling people with cancer. Results: The people with cancer reported low occurrence of pain, fatigue, anxiety and depression. We found strong correlation between anxiety and depression. Women reported significantly higher scores of anxiety and depression than men. A higher pain score was associated with higher scores of fatigue and anxiety. Conclusions: Home care personnel meeting older home-dwelling people with cancer should emphasize these people' mental health problems and be aware that pain, fatigue and anxiety may occur at the same time.

Finding a place to connect: A qualitative study exploring the influences of the physical and social environments on spouses' opportunities to maintain relationships when visiting a partner with dementia living in long-term care.

The purpose of this qualitative study was to explore how physical and social environments influence spouses' opportunities to maintain relationships when visiting a partner with dementia living in long-term care. Interviews with 15 spouses whose partners lived in long-term care facilities for persons with dementia, observations of physical environments and participant observations were conducted. The results showed how finding a place for spouses to connect in the long-term care facility was important in maintaining relationships. Access to individual rooms was an important feature that enabled connections throughout the phases of dementia, whereas common areas appeared more difficult to use because small spaces limited private interactions. Health personnel were important in sustaining spouses' abilities to maintain their relationships in long-term care facilities for persons with dementia.

A Mobile Application for Supporting Dementia Relatives: A Case Study.

This work presents DILP, a project and solution for caregivers and relatives of persons with dementia. The app aims at providing help on demand and covers topics like medical and psychological issues, communication, legal and financial issues, practical advice for everyday challenges, and more. The technology is explained in detail, and special attention is given to the user-centered development and content authoring. The final solution was tested in the field by relatives of persons with dementia and health workers with many encouraging results regarding usefulness, usability, structure, and others. However, the trials also showed that functionality like search and find-ability of information was difficult to achieve.

Understanding attitudes toward information and communication technology in home-care: Information and communication technology as a market good within Norwegian welfare services.

The aim of this study was to better understand nurses' and other staff members' attitudes toward the usefulness of information and communication technology in home-care settings. Research has found that beliefs about the expected benefits of information and communication technology impact the use of technology. Furthermore, inexperience with using information and communication technology may cause negative attitudes. This article is based on a questionnaire to 155 nurses and other staff members in home-care in Sogn og Fjordane county in Norway. The results revealed minimal use of information and communication technology at work; however, participants had positive attitudes regarding the potential benefits of information and communication technology use in home-care. Individuals' extensive use of and familiarity with different solutions in private lives could be an important context for explaining employees' attitudes. Given that information and communication technology is both a welfare service and a market good, this may explain individuals' positive attitudes toward information and communication technology despite their lack of experience with it at work. Experiences with information and communication technology as a market good and the way new technologies can affect work routines will affect the implementation of information and communication technology in home-care.