Line Kildal Bragstad

The indispensable intermediaries: a qualitative study of informal caregivers’ struggle to achieve influence at and after hospital discharge

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.

Older Patients’ and Next of Kin’s Perspectives on Continuity in Long-Term Home Health Care

The study explored how 125 older patients and 92 next of kin experienced and assessed continuity in long-term home health care. Data were collected by means of structured interviews. A majority of the patients indicated that having a high number of health care personnel involved in their care was not problematic. For patients, informed and skilled health personnel along with knowing the visiting personnel may compensate for a high number of personnel. For next of kin, accepting a high number of personnel was related to the carers being informed about the patient’s situation. This study indicates that, in terms of patient satisfaction, the overall quality of care is more important than the number of people providing the care.

Promoting psychosocial well-being following stroke: study protocol for a randomized, controlled trial

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).

The challenges of describing rehabilitation services: A discussion paper

To apply the Classification of Service Organization in Rehabilitation (ICSO-R) classification of services to different target groups, include the user perspective, identify missing categories, and propose standardized descriptors for the categories from a Norwegian perspective. Expert-based consensus conferences with user involvement. Health professionals, stakeholders and users. Participants were divided into 5 panels, which applied the ICSO-R to describe the habilitation and rehabilitation services provided to children with cerebral palsy and people with Huntingtons disease, acquired brain injuries (traumatic brain injuries and stroke) and painful musculoskeletal conditions. Based on the Problem/Population, Intervention, Comparison, Outcome (PICO) framework, the services were described according to the ICSO-R. Missing categories were identified. The ICSO-R was found to be feasible and applicable for describing a variety of services provided to different target groups in Norway, but the user perspective was lacking, categories were missing, and a need for standardized description of the categories was identified. The present work supports the need to produce an updated version of the ICSO-R and to encourage national and international discussion of the framework. The ICSO-R has the potential to become a tool for the standardized assessment of rehabilitation services. For such purposes, more standardized descriptions of subcategories are necessary.

Studying Complex Care Transitions from a Quantitative Perspective

In this chapter, Bragstad and Foss highlight key methodological challenges and lessons learned when studying complex care transitions from a quantitative perspective. Key challenges with regard to designing and planning the study, developing survey instruments and conducting survey research on transitional care is emphasized. The research examples used throughout this chapter are predominantly linked to a study exploring older patients’ and their next of kin’s experiences with transition from hospital to municipal care. The methodological challenges are, however, applicable to a wider context.