BackgroundThe care policy and organization of the care sector is shifting to accommodate projected demographic changes and to ensure a sustainable model of health care provision in the future. Adult children and spouses are often the first to assume care giving responsibilities for older adults when declining function results in increased care needs. By introducing policies tailored to enabling family members to combine gainful employment with providing care for older relatives, the sustainability of the future care for older individuals in Norway is more explicitly placed on the family and informal caregivers than previously. Care recipients and informal caregivers are expected to take an active consumer role and participate in the care decision-making process. This paper aims to describe the informal caregivers’ experiences of influencing decision-making at and after hospital discharge for home-bound older relatives.MethodsThis paper reports findings from a follow-up study with an exploratory qualitative design. Qualitative telephone interviews were conducted with 19 informal caregivers of older individuals discharged from hospital in Norway. An inductive thematic content analysis was undertaken.ResultsInformal caregivers take on comprehensive all-consuming roles as intermediaries between the care recipient and the health care services. In essence, the informal caregivers take the role of the active participant on behalf of their older relative. They describe extensive efforts struggling to establish dialogues with the “gatekeepers” of the health care services. Achieving the goal of the best possible care for the care recipient seem to depend on the informal caregivers having the resources to choose appropriate strategies for gaining influence over decisions.ConclusionsThe care recipients’ extensive frailty and increasing dependence on their families coupled with the complexity of health care services contribute to the perception of the informal caregivers’ indispensable role as intermediaries. These findings accentuate the need to further discuss how frail older individuals and their informal caregivers can be supported and enabled to participate in decision-making regarding care arrangements that meet the care recipient’s needs.

BackgroundStroke is a major public health threat globally. Psychosocial well-being may be affected following stroke. Depressive symptoms, anxiety, general psychological distress and social isolation are prevalent. Approximately one third report depressive symptoms and 20% report anxiety during the first months or years after the stroke. Psychosocial difficulties may impact significantly on long-term functioning and quality of life, reduce the effects of rehabilitation services and lead to higher mortality rates. The aim of the study is to evaluate the effect of a previously developed and feasibility tested dialogue-based psychosocial intervention aimed at promoting psychosocial well-being and coping following stroke among stroke survivors with and without aphasia.MethodsThe study will be conducted as a multicenter, randomized, single blind controlled trial with one intervention and one control arm. It will include a total of 330 stroke survivors randomly allocated into either an intervention group (dialogue-based intervention to promote psychosocial well-being) or a control group (usual care). Participants in the intervention group will receive eight individual sessions of supported dialogues in their homes during the first six months following an acute stroke. The primary outcome measure will be psychosocial well-being measured by the General Health Questionnaire (GHQ). Secondary outcome measures will be quality of life (SAQoL), sense of coherence (SOC), and depression (Yale). Process evaluation will be conducted in a longitudinal mixed methods study by individual qualitative interviews with 15–20 participants in the intervention and control groups, focus group interviews with the intervention personnel and data collectors, and a comprehensive analysis of implementation fidelity.DiscussionThe intervention described in this study protocol is based on thorough development and feasibility work, guided by the UK medical research council framework for developing and testing complex interventions. It combines classical effectiveness evaluation with a thorough process evaluation. The results from this study may inform the development of further trials aimed at promoting psychosocial well-being following stroke as well as inform the psychosocial follow up of stroke patients living at home.Trial registrationNCT02338869; registered 10/04/2014 (On-going trial).

BackgroundEvaluation of complex interventions should include a process evaluation to give evaluators, researchers, and policy makers greater confidence in the outcomes reported from RCTs. Implementation fidelity can be part of a process evaluation and refers to the degree to which an intervention is delivered according to protocol. The aim of this implementation fidelity study was to evaluate to what extent a dialogue-based psychosocial intervention was delivered according to protocol. A modified conceptual framework for implementation fidelity was used to guide the analysis.MethodsThis study has an explanatory, sequential two-phase mixed methods design. Quantitative process data were collected longitudinally along with data collection in the RCT. Qualitative process data were collected after the last data collection point of the RCT. Descriptive statistical analyses were conducted to describe the sample, the intervention trajectories, and the adherence measures. A scoring system to clarify quantitative measurement of the levels of implementation was constructed. The qualitative data sources were analyzed separately with a theory-driven content analysis using categories of adherence and potential moderating factors identified in the conceptual framework of implementation fidelity. The quantitative adherence results were extended with the results from the qualitative analysis to assess which potential moderators may have influenced implementation fidelity and in what way.ResultsThe results show that the core components of the intervention were delivered although the intervention trajectories were individualized. Based on the composite score of adherence, results show that 80.1% of the interventions in the RCT were implemented with high fidelity. Although it is challenging to assess the importance of each of the moderating factors in relation to the other factors and to their influence on the adherence measures, participant responsiveness, comprehensiveness of policy description, context, and recruitment appeared to be the most prominent moderating factors of implementation fidelity in this study.ConclusionsThis evaluation of implementation fidelity and the discussion of what constitutes high fidelity implementation of this intervention are crucial in understanding the factors influencing the trial outcome. The study also highlights important methodological considerations for researchers planning process evaluations and studies of implementation fidelity.Trial registrationClinicalTrials.gov, NCT02338869; registered 10/04/2014.Electronic supplementary materialThe online version of this article (10.1186/s12874-019-0694-z) contains supplementary material, which is available to authorized users.

Introduction and backgroundThe early post-discharge period is a vulnerable time for older patients with complex care requirements. This paper identifies factors predicting a self-reported successful post-discharge outcome for patients aged 80 years and over by exploring factors related to the discharge process, the provision of formal home-care services, informal care and characteristics of the patients.MethodsThe study reports results from survey interviews with patients admitted from home to 14 hospitals in Norway and later discharged home. Logistic regression analysis was performed to assess the impact of a number of factors on the likelihood that the patients would report that they managed well after discharge.ResultsThe odds of managing well after discharge were more than four times higher (OR=4.75, p=0.022) for patients reporting that someone was present at homecoming than for those who came home to an empty house. Patients who reported receiving adequate help from the municipality had an odds four times (OR=4.18, p=0.006) higher of reporting that everything went well after discharge than those who stated the help was inadequate.ConclusionsHaving someone at home upon return from hospital and having adequate formal home-care services are significantly associated with patient-reported success in managing well.