A person-centred care transition support for people with stroke/TIA: A study protocol for effect and process evaluation using a non-randomised controlled design.

INTRODUCTION: Care transitions following a stroke call for integrated care approaches to reduce death and disability. The proposed research described in this study protocol aims to evaluate the effectiveness of a person-centred multicomponent care transition support and the process in terms of contextual moderators, implementation aspects and mechanisms of impact. METHODS: A non-randomized controlled trial design will be used. The intervention includes person-centred dialogue intended to permeate all patient-provider communication, various pedagogical modes of information, a person-centred care and rehabilitation plan, and a bridging e-meeting to prepare patients for homecoming. Patients with stroke or TIA who are to be discharged from the participating hospitals to home and referred to a neurorehabilitation team for continued rehabilitation will be included. Follow-ups will be conducted at one week, 3 months and 12 months. Data will be collected on the primary outcome of perceived quality of the care transition, and on the secondary outcomes of health literacy, medication adherence, and perceived person-centeredness. Data for process evaluation will be collected through semi-structured interviews, focus groups, participatory observations, and the Normalisation Measure Development Questionnaire. DISCUSSION: The study will provide insights on implementation, mechanisms of impact, contextual moderators, and effectiveness of a care transition support, targeting a poorly functioning part of the care trajectory for people with stroke and TIA. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05646589.

Enabling primary healthcare service development with patient participation: a qualitative study of the internal facilitator role in Norway.

AIM: To explore how primary healthcare professionals (HCPs) tasked with facilitating primary healthcare service development with patient participation perceived their role. INTRODUCTION: Patient participation in health service development is a recognized means of ensuring that health services fit the public's needs. However, HCPs are often uncertain about how to involve patient representatives (PRs), and patient participation is poorly implemented. Inspired by the Promoting Action on Research Implementation in Health Services framework, we address the innovation (patient participation), its recipients (PRs, HCPs, supervisors, and senior managers), and its context (primary healthcare at a local and organizational level). METHODS: We conducted semi-structured individual interviews with six HCPs working as internal facilitators in primary healthcare in four Norwegian municipalities. The data were analyzed by applying Braun and Clarke's reflexive thematic analysis. FINDINGS: The themes show that to develop primary healthcare services with patient participation, facilitators must establish a network of PRs with relevant skills, promote involvement within their organization, engage HCPs favorable toward patient participation, and demonstrate to supervisors and senior managers its usefulness to win their support. Implementing patient participation must be a shared, collective responsibility of facilitators, supervisors, and senior management. However, supervisors and senior management appear not to fully understand the potential of involvement or how to support the facilitators. The facilitator role requires continuous and systematic work on multiple organizational levels to enable the development of health services with patient participation. It entails maintaining a network of persons with experiential knowledge, engaging HCPs, and having senior management's understanding and support.

'Struggling to participate in everyday life': emerging adults' experiences of living with long-term health challenges.

AIM: To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life. METHODS: Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18-29 years living with long-term health challenges in Norway. FINDINGS: The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future. The emerging adults experienced difficulties with participation in key areas of life such as education, employment and leisure activities. Associated symptoms of their diagnosis, limited physical abilities and lack of sufficient support made it hard to participate in everyday life the way they aspired to. CONCLUSION: The challenges of living with a long-term health challenge as an emerging adult contributed to limitations in participation in different areas of life that was perceived as important for their quality of life.

The Caregiver Pathway, a Model for the Systematic and Individualized Follow-up of Family Caregivers at Intensive Care Units: Development Study.

BACKGROUND: Family caregivers of patients who are critically ill have a high prevalence of short- and long-term symptoms, such as fatigue, anxiety, depression, symptoms of posttraumatic stress, and complicated grief. These adverse consequences following a loved one's admission to an intensive care unit (ICU) are also known as post-intensive care syndrome-family. Approaches such as family-centered care provide recommendations for improving the care of patients and families, but models for family caregiver follow-up are often lacking. OBJECTIVE: This study aims to develop a model for structuring and individualizing the follow-up of family caregivers of patients who are critically ill, starting from the patients' ICU admission to after their discharge or death. METHODS: The model was developed through a participatory co-design approach using a 2-phased iterative process. First, the preparation phase included a meeting with stakeholders (n=4) for organizational anchoring and planning, a literature search, and interviews with former family caregivers (n=8). In the subsequent development phase, the model was iteratively created through workshops with stakeholders (n=10) and user testing with former family caregivers (n=4) and experienced ICU nurses (n=11). RESULTS: The interviews revealed how being present with the patient and receiving adequate information and emotional care were highly important for family caregivers at an ICU. The literature search underlined the overwhelming and uncertain situation for the family caregivers and identified recommendations for follow-up. On the basis of these recommendations and findings from the interviews, workshops, and user testing, The Caregiver Pathway model was developed, encompassing 4 steps: within the first few days of the patient's ICU stay, the family caregivers will be offered to complete a digital assessment tool mapping their needs and challenges, followed by a conversation with an ICU nurse; when the patient leaves the ICU, a card containing information and support will be handed out to the family caregivers; shortly after the ICU stay, family caregivers will be offered a discharge conversation by phone, focusing on how they are doing and whether they have any questions or concerns; and within 3 months after the ICU stay, an individual follow-up conversation will be offered. Family caregivers will be invited to talk about memories from the ICU and reflect upon the ICU stay, and they will also be able to talk about their current situation and receive information about relevant support. CONCLUSIONS: This study illustrates how existing evidence and stakeholder input can be combined to create a model for family caregiver follow-up at an ICU. The Caregiver Pathway can help ICU nurses improve family caregiver follow-up and aid in promoting family-centered care, potentially also being transferrable to other types of family caregiver follow-up.

The Use of Teach Back at Hospital Discharge to Support Self-Management of Prescribed Medication for Secondary Prevention after Stroke-Findings from A Feasibility Study.

The study aimed to investigate whether a structured discharge letter and the use of the person-centred communication method Teach Back for sharing information at hospital discharge could support perceived understanding and knowledge of and adherence to prescribed medication for secondary prevention after stroke. Data from a feasibility study of a codesigned care transition support for people with stroke was used. Patients who at discharge received both a structured discharge letter and participated in the person-centred communication method Teach Back (n = 17) were compared with patients receiving standard discharge procedures (n = 21). Questionnaires were used to compare the groups regarding perceived understanding of information about medical treatment, knowledge of information about medical treatment and medication adherence at 1 week and 3 months. There was a statistically significant difference in perceived understanding of information about medical treatment (p > 0.01) between the groups in favour of those who participated in Teach Back at the discharge encounter. No differences between groups were found regarding understanding health information about medical treatment and medication adherence. The results indicate that the use of Teach Back at the discharge encounter positively impacts perceived understanding of information about medical treatment in people with stroke. However, considering the nonrandomised study design and the small sample size, a large-scale trial is needed.

Primary healthcare professionals' experience with patient participation in healthcare service development: A qualitative study.

Objective: How healthcare professionals experience patient participation in health service development impacts its use. This participatory study explores primary healthcare professionals' perceptions of developing health services with patient representatives. Methods: Four focus group interviews with primary healthcare professionals (n = 26) were conducted. We analyzed data by applying Braun and Clarke's reflexive thematic analysis. Results: The healthcare professionals perceived having a complementary interprofessional relationship with the patient representatives and regarded them as colleagues. However, the professionals navigated between a position of authority and collaboration, reconciling the need for participation with its challenges, e.g., to identify the representatives' collective representation among their personal experience, to ensure a more evidence-informed result that they and their colleagues would endorse. Conclusions: Regarding patient representatives as colleagues can blur the line between professionals and representatives' positions and functions and further complicate health service development. Our results indicate a need for skilled facilitators to lead the process. Innovation: This study identifies issues that professionals are uncertain about when collaborating with representatives to develop primary healthcare services; difficulties that professionals must overcome to collaborate constructively with representatives. Our findings can inform healthcare professionals' education about patient participation on all levels. We have suggested topics to address.

Training interventions for healthcare providers offering group-based patient education. A scoping review.

OBJECTIVES: To provide overview of research on training interventions for healthcare providers aimed at promoting competencies in delivering group-based patient education. METHODS: A systematic literature search identified relevant studies. Data was extracted on training details, study design, outcomes and experiences. Results were summarized and qualitative data analyzed using content analysis. RESULTS: Twenty-seven studies exploring various training interventions were included. Ten studies used qualitative methods, eight quantitative and nine mixed methods. Use of a comparison group, validated instruments and follow-up measures was rare. Healthcare providers' reactions to training were mostly positive. Several studies indicated positive short-term effects on self-efficacy and knowledge. Results on observed skills and patient outcomes were inconclusive. Results on healthcare providers' experience of delivery of group-based patient education following training were categorized into 1) Benefits of training interventions, 2) Barriers to implementation and 3) Delivery support. CONCLUSIONS: Further evaluation of training for healthcare providers delivering group-based patient education is needed before conclusions on training efficacy can be drawn. The results indicate an expanding research field still in maturation. PRACTICE IMPLICATIONS: Efficacy studies evaluating theoretically grounded training with clear attention on group facilitation and follow-up support are needed. Inclusion of validated instruments and long-term outcomes is encouraged.

Rethinking long-term condition management: An actor-level framework.

To understand the complexities of managing long-term conditions and develop appropriate responses, micro-, meso- and macrolevels must be considered. However, these levels have not been combined in a single analytical framework of long-term condition management (LTCM). This article aims to describe a framework of LTCM practice and research that combines societal levels and key agents. The actor-level framework, based on the works of Abram De Swaan and Randall Collins, provides a broader understanding of LTCM as an interdisciplinary research field compared to previous contributions. The framework has three main advantages. First, it encourages knowledge production across levels and actors that address the complexity of long-term illness management. Second, it broadens the scope of LTCM as an interdisciplinary research field and practice field. Finally, it facilitates the integration of knowledge production from different disciplines and research traditions. The framework could stimulate interdisciplinary research collaboration to enhance knowledge of processes and interactions influencing the lives of individuals with long-term conditions.

Mobile App to Help People With Chronic Illness Reflect on Their Strengths: Formative Evaluation and Usability Testing.

BACKGROUND: Supporting patient engagement and empowerment is increasingly seen as essential in providing person-centered health care to people with chronic illness. Mobile apps helping patients reflect on their concerns as preparation for consultations with their health care providers can have beneficial effects on the consultation quality. However, apps focusing on empowerment and personal strengths are still scarce. OBJECTIVE: This study aimed to (1) develop a mobile app to support patients with rheumatic diseases in reflecting on their strengths in preparation for consultations with health care providers and (2) explore patients' perceived usability of the app in a nonclinical test setting. METHODS: A prototype app was developed based on input from patients and health care providers, as reported in previous studies. The app was designed for use in self-management support settings aiming to promote awareness of strengths and to focus attention on strengths in the patient-health care provider dialogue. The features included in the prototype were as follows: (1) introduction to the topic of strengths, (2) list of examples of strengths to promote reflection and registration of own strengths, (3) summary of registered strengths, (4) value-based goal setting, (5) linking of strengths to goals, (6) summary of all registrations, and (7) options to share summary digitally or as a print version. In this study, the app was refined through a formative evaluation with patients and health care providers recruited from a specialized rheumatology hospital unit. Patients' perceptions of the app's usability were explored in a test setting with self-report measurements and semistructured interviews. The interviews were audiotaped, transcribed, and analyzed with directed content analysis. Data from questionnaires were analyzed with descriptive statistics. RESULTS: Developmental and formative evaluation included 18 patients and 7 health care providers. The evaluation resulted in minor adjustments to the prototype but no major changes in features. The usability testing included 12 patients. All participants found the usability acceptable; the median score on the System Usability Scale was 86.3 (range 70-100). All reported that it was meaningful and relevant to use the app. Out of 12 participants, 9 (75%) reported becoming more aware of their own strengths by using the app; 1 (8%) disagreed and 2 (17%) provided a neutral response. The results on the goal-related feature were mixed, with half of the patients finding it useful to link strengths to concrete goals. A statistically significant positive change from pre- to postintervention was identified on measures of self-efficacy and negative emotions. CONCLUSIONS: In this formative evaluation of a mobile app to promote patients' reflections on their strengths, patients perceived the app as meaningful and supporting awareness. The results suggest the usefulness of building in functionality to support use of strengths and goal attainment. Further studies on efficacy and usability in a clinical setting, including health care providers, are needed.

How can we describe impact of adult patient participation in health-service development? A scoping review.

OBJECTIVE: Patient participation represents a worldwide policy, but its impact lacks research. This study investigates impact of patient participation in health-service development by providing a comprehensive overview of how the literature describes it. METHOD: A scoping review with a broad search strategy was conducted. The literature was examined for study characteristics, purpose for, approaches to and impact of patient participation. The data were analyzed using a thematic analysis. RESULTS: The 34 included primary studies reported impacts of patient participation that were interpreted to constitute two categories: 1. The participatory process´ impact on involved patient representatives and health professionals, and the organization´s patient participation practice itself. 2. The participatory service development´s impact on the design and delivery of services regarding patients and health professionals, and the organization. CONCLUSION: The literature describes a broad variation of impacts from health-service development, relevant for health professionals and patient representatives when initiating or participating in such processes. Our review provides an overview and discussion of these types of impact. PRACTICE IMPLICATIONS: The findings can be of practical relevance to those aiming to develop services, quality indicators regarding effects of patient participation, or to further investigate aspects of participatory service development.

Implementation Strategies to Enhance the Implementation of eHealth Programs for Patients With Chronic Illnesses: Realist Systematic Review.

BACKGROUND: There is growing evidence of the positive effects of electronic health (eHealth) interventions for patients with chronic illness, but implementation of such interventions into practice is challenging. Implementation strategies that potentially impact implementation outcomes and implementation success have been identified. Which strategies are actually used in the implementation of eHealth interventions for patients with chronic illness and which ones are the most effective is unclear. OBJECTIVE: This systematic realist review aimed to summarize evidence from empirical studies regarding (1) which implementation strategies are used when implementing eHealth interventions for patients with chronic illnesses living at home, (2) implementation outcomes, and (3) the relationship between implementation strategies, implementation outcomes, and degree of implementation success. METHODS: A systematic literature search was performed in the electronic databases MEDLINE, Embase, PsycINFO, Scopus, Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library. Studies were included if they described implementation strategies used to support the integration of eHealth interventions into practice. Implementation strategies were categorized according to 9 categories defined by the Expert Recommendations for Implementing Change project: (1) engage consumers, (2) use evaluative and iterative strategies, (3) change infrastructure, (4) adapt and tailor to the context, (5) develop stakeholder interrelationships, (6) use financial strategies, (7) support clinicians, (8) provide interactive assistance, and (9) train and educate stakeholders. Implementation outcomes were extracted according to the implementation outcome framework by Proctor and colleagues: (1) acceptability, (2) adoption, (3) appropriateness, (4) cost, (5) feasibility, (6) fidelity, (7) penetration, and (8) sustainability. Implementation success was extracted according to the study authors' own evaluation of implementation success in relation to the used implementation strategies. RESULTS: The implementation strategies management support and engagement, internal and external facilitation, training, and audit and feedback were directly related to implementation success in several studies. No clear relationship was found between the number of implementation strategies used and implementation success. CONCLUSIONS: This is the first review examining implementation strategies, implementation outcomes, and implementation success of studies reporting the implementation of eHealth programs for patients with chronic illnesses living at home. The review indicates that internal and external facilitation, audit and feedback, management support, and training of clinicians are of importance for eHealth implementation. The review also points to the lack of eHealth studies that report implementation strategies in a comprehensive way and highlights the need to design robust studies focusing on implementation strategies in the future. TRIAL REGISTRATION: PROSPERO CRD42018085539; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=85539.

How can we support children, adolescents and young adults in managing chronic health challenges? A scoping review on the effects of patient education interventions.

OBJECTIVES: This scoping review aims to give a comprehensive and systematic overview of published evaluations and the potential impact of patient education interventions for children, adolescents and young adults who are living with chronic illness and/or impairment loss. METHODS: Relevant literature published between 2008 and 2018 has been comprehensively reviewed, with attention paid to variations in study, intervention and patient characteristics. Arksey and O'Malley's framework for scoping studies guided the review process, and thematic analysis was undertaken to synthesize extracted data. RESULTS: Of the 7214 titles identified, 69 studies were included in this scoping review. Participant-reported benefits of the interventions included less distress from symptoms, improved medical adherence and/or less use of medication, and improved knowledge. The majority of studies measuring physical activity and/or physiologic outcomes found beneficial effects. Interventions were also beneficial in terms of decreased use of urgent health care, hospitalization, visits to general practitioner and absence from school. By sharing experiences, participants had learned from each other and attained new insight on how they could manage illness-related challenges. DISCUSSION: Study results corroborate previous research suggesting that different types of patient education interventions have a positive impact on children, adolescents and young adults, but research on this field is still in a starting phase. The results summed up in the current review supports the utility of patient education interventions that employ behavioural strategies tailored to the developmental needs of children, adolescents and young adults with different cultural backgrounds.

A Scoping Review of Facilitators of Multi-Professional Collaboration in Primary Care.

INTRODUCTION: Multi-professional collaboration (MPC) is essential for the delivery of effective and comprehensive care services. As in other European countries, primary care in Norway is challenged by altered patient values and the increased expectations of health administrations to participate in team-based care. This scoping review reports on the organisational, processual, relational and contextual facilitators of collaboration between general practitioners (GP) and other healthcare professionals (HCPs) in primary care. METHODS: A systematic search in specialist and Scandinavian databases retrieved 707 citations. Following the inclusion criteria, nineteen studies were considered eligible and examined according to Arksey and O'Malley's methodological framework for scoping reviews. The retrieved literature was analysed employing a content analysis approach. A group of stakeholders commented on study findings to enhance study validity. RESULTS: Primary care research into MPC is immature and emerging in Norway. Our analysis showed that introducing common procedures for documentation and handling of patient data, knowledge sharing, and establishing local specialised multi-professional teams, facilitates MPC. The results indicate that advancements in work practices benefit from an initial system-level foundation with focus on local management and MPC leadership. Further, our results show that it is preferable to enhance collaborative skills before introducing new professional teams, roles and responsibilities. Investing in professional relations could build trust, respect and continuity. In this respect, sufficient time must be allocated during the working day for professionals to share reflections and engage in mutual learning. CONCLUSION: There is a paucity of research concerning the application and management of MPC in Norwegian primary care. The work practices and relations between professionals, primary care institutions and stakeholders on a macro level is inadequate. Health care is a complex system in which HCPs need managerial support to harvest the untapped benefits of MPC in primary care. As international research demonstrates, local managers must be supported with infrastructure on a macro level to understand the embedding of practice and look at what professionals actually do and how they work.

Personal strengths reported by people with chronic illness: A qualitative study.

BACKGROUND: Self-management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person-centred approaches into health care. OBJECTIVE: To explore what people with chronic illness describe as their strengths relevant to their health and well-being. SETTING AND PARTICIPANTS: Thirty-nine participants (11 men) from 4 outpatient self-management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis. RESULTS: A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self-management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health-care providers. Self-management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help. DISCUSSION AND CONCLUSION: The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person-centred approaches into health care.

Health economic evaluations of patient education interventions a scoping review of the literature.

OBJECTIVES: To provide a comprehensive overview of health economic evaluations of patient education interventions for people living with chronic illness. METHODS: Relevant literature published between 2000 and 2016 has been comprehensively reviewed, with attention paid to variations in study, intervention, and patient characteristics. RESULTS: Of the 4693 titles identified, 56 articles met the inclusion criteria and were included in this scoping review. Of the studies reviewed, 46 concluded that patient education interventions were beneficial in terms of decreased hospitalization, visits to Emergency Departments or General Practitioners, provide benefits in terms of quality-adjusted life years, and reduce loss of production. Eight studies found no health economic impact of the interventions. CONCLUSIONS: The results of this review strongly suggest that patient education interventions, regardless of study design and time horizon, are an effective tool to cut costs. This is a relatively new area of research, and there is a great need of more research within this field. PRACTICE IMPLICATIONS: In bringing this evidence together, our hope is that healthcare providers and managers can use this information within a broad decision-making process, as guidance in discussions of care quality and of how to provide appropriate, cost-effective patient education interventions.

Patient Insights Into the Design of Technology to Support a Strengths-Based Approach to Health Care.

BACKGROUND: An increasing number of research studies in the psychological and biobehavioral sciences support incorporating patients' personal strengths into illness management as a way to empower and activate the patients, thus improving their health and well-being. However, lack of attention to patients' personal strengths is still reported in patient-provider communication. Information technology (IT) has great potential to support strengths-based patient-provider communication and collaboration, but knowledge about the users' requirements and preferences is inadequate. OBJECTIVE: This study explored the aspirations and requirements of patients with chronic conditions concerning IT tools that could help increase their awareness of their own personal strengths and resources, and support discussion of these assets in consultations with health care providers. METHODS: We included patients with different chronic conditions (chronic pain, morbid obesity, and chronic obstructive pulmonary disease) and used various participatory research methods to gain insight into the participants' needs, values, and opinions, and the contexts in which they felt strengths-based IT tools could be used. RESULTS: Participants were positive toward using technology to support them in identifying and discussing their personal strengths in clinical consultation, but also underlined the importance of fitting it to their specific requirements and the right contexts of use. Participants recommended that technology be designed for use in preconsultation settings (eg, at home) and felt that it should support them in both identifying strengths and in finding out new ways how strengths can be used to attain personal health-related goals. Participants advocated use of technology to support advance preparation for consultations and empower them to take a more active role. IT tools were suggested to be potentially useful in specific contexts, including individual or group consultations with health care providers (physician, nurse, specialist, care team) in clinical consultations but also outside health care settings (eg, as a part of a self-management program). Participants' requirements for functionality and design include, among others: providing examples of strengths reported by other patients with chronic conditions, along with an option to extend the list with personal examples; giving an option to briefly summarize health-related history; using intuitive, easy-to-use but also engaging user interface design. Additionally, the findings are exemplified with a description of a low-fidelity paper prototype of a strengths-based tool, developed with participants in this study. CONCLUSIONS: Users requirements for IT support of a strengths-based approach to health care appear feasible. The presented findings reflect patients' values and lists potential contexts where they feel that technology could facilitate meaningful patient-provider communication that focuses not just on symptoms and problems, but also takes into account patients' strengths and resources. The findings can be used to inform further development of IT tools for use in clinical consultations.

A scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness.

OBJECTIVE: To give a comprehensive overview of benefits and challenges from participating in group based patient education programs that are carried out by health care professionals and lay participants, aimed at promoting self-management for people living with chronic illness. METHODS: We searched 8 literature databases. Full text articles meeting the inclusion criteria were retrieved and reviewed. Arksey and O'Malley's framework for scoping studies guided the review process and thematic analysis was undertaken to synthesize extracted data. RESULTS: Of the 5935 titles identified, 47 articles were included in this review. The participants experienced the programs as beneficial according to less symptom distress and greater awareness of their own health, improved self-management strategies, peer support, learning and hope. CONCLUSION: A substantial evidence base supports the conclusion that group based self-management patient education programs in different ways have been experienced as beneficial, but more research is needed. PRACTICE IMPLICATIONS: The insights gained from this review can enable researchers, health care professionals, and participants to understand the complexity in evaluating self-management patient education programs, and constitute a basis for a more standardized and systematic evaluation. The results may also encourage health care professionals in planning and carrying out programs in cooperation with lay participants.

Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care.

Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.

Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment.

This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.

Living close to a person with cancer: a review of the international literature and implications for social work practice.

To help family caregivers (FCs), social workers need to understand the complexity of FC's experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1,643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms, and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC's own health risk, caregiver burden, and experiences over time can enhance a social worker's awareness of an FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.