The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review.

CONTEXT: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. OBJECTIVES: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. METHODS: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. RESULTS: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. CONCLUSION: The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.

Exploring, measuring and enhancing the coproduction of health and well-being at the national, regional and local levels through comparative case studies in Sweden and England: the 'Samskapa' research programme protocol.

INTRODUCTION: Cocreation, coproduction and codesign are advocated as effective ways of involving citizens in the design, management, provision and evaluation of health and social care services. Although numerous case studies describe the nature and level of coproduction in individual projects, there remain three significant gaps in the evidence base: (1) measures of coproduction processes and their outcomes, (2) mechanisms that enable inclusivity and reciprocity and (3) management systems and styles. By focusing on these issues, we aim to explore, enhance and measure the value of coproduction for improving the health and well-being of citizens. METHODS AND ANALYSIS: Nine ongoing coproduction projects form the core of an interactive research programme ('Samskapa') during a 6-year period (2019-2024). Six of these will take place in Sweden and three will be undertaken in England to enable knowledge exchange and cross-cultural comparison. The programme has a longitudinal case study design using both qualitative and quantitative methods. Cross-case analysis and a sensemaking process will generate relevant lessons both for those participating in the projects and researchers. Based on the findings, we will develop explanatory models and other outputs to increase the sustained value (and values) of future coproduction initiatives in these sectors. ETHICS AND DISSEMINATION: All necessary ethical approvals will be obtained from the regional Ethical Board in Sweden and from relevant authorities in England. All data and personal data will be handled in accordance with General Data Protection Regulations. Given the interactive nature of the research programme, knowledge dissemination to participants and stakeholders in the nine projects will be ongoing throughout the 6 years. External workshops-facilitated in collaboration with participating case studies and citizens-both during and at the end of the programme will provide an additional dissemination mechanism and involve health and social care practitioners, policymakers and third-sector organisations.

[Abuse in healthcare - lessons learned during two decades of research]. / Kränkningar i vården är vanligt förekommande - Viktigt med aktivt arbete mot att patienter kränks.

Patients' experience of abuse in health care (AHC) is common, and may cause long-lasting suffering. In Sweden, lifetime prevalence is estimated at 20 per cent among female patients and 8 per cent among male patients, and a background of other abuse is a risk factor. Most health care staff have experience of patients who have been abused, but the topic is surrounded by silence from both patients and caregivers. Models for training staff in groups have been evaluated and a more proactive stance can be fostered. Department heads and health care authorities are responsible for providing staff with options to counteract AHC. Caregivers need training in how to carry out consultations with patients who say they have been abused in health care, and this training should be included in efforts to increase quality of care. Changes are within reach but educational efforts are urgent.

Long-term sickness absence: women's opinions about health and rehabilitation.

AIMS: This paper reports a study to identify associations between ideas of health and rehabilitation in groups of women having first-hand experience of long-term sickness absence. BACKGROUND: As a central part of their work, nurses have to be able to understand people in distress. When someone is unable to work because of illness, nurses are one of the central professional categories involved in their rehabilitation. METHODS: Data were collected by Q-sort grid and biographical interviews from 82 women aged 30-49 years who had either been absent from work because of sickness for 60 days or more, or were receiving a disability pension. The data were first analysed by patterns and structures obtained from a modified factor analysis. The second phase of the analysis dealt with relocating the results from the statistical analyses to their social context. RESULTS: Six opinions representing different conceptions of health, illness, and rehabilitation were identified. These ranged from reflecting high levels of trust in the health care system to reliance on 'nature's course' and emphasizing the meaning of 'feeling all right'. CONCLUSIONS: For women on long-term sick leave, it is reasonable to expect that their communication with rehabilitation professionals will be founded in a mutual understanding of basic concepts. However, the disparate opinions about health and rehabilitation identified in this study show that future studies need to investigate the prospective value of this categorization to see whether and how these conceptions affect rehabilitation practices.

Women's experiences of long term sickness absence: implications for rehabilitation practice and theory.

BACKGROUND: In most European countries, spells of long-term absence contribute the largest number of days that are reimbursed as a result of sickness absence. This group is growing and it is constituted mainly of women. AIM: The present study seeks further knowledge about what happens then and there, i.e. how women on long-term sickness absence handle and explain, for themselves and others, this interruption in their daily life. METHODS: Semi-structured interviews were performed with 82 middle-aged women with personal experience of long-term sickness absence. RESULTS: The women's accounts of sickness absence contained interpretations of what had happened to them, how things were at present, and what they thought the future would bring. Three different accounts could be distinguished: crisis, breakpoint, and migration. The perception of their own situation and especially what they thought about their future was associated with their feeling of power to take the initiative, and their well-being. CONCLUSION: From this study the authors have found implications for central topics of importance: time elapse, sense of coherence, reorientation/adaptation, vital goals, and gender.