Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
BACKGROUND: The study objective was to obtain consensus on physical therapy (PT) in the rehabilitation of critical illness survivors after hospital discharge. Research questions were: what are PT goals, what are recommended measurement tools, and what constitutes an optimal PT intervention for survivors of critical illness?METHODS: A Delphi consensus study was conducted. Panelists were included based on relevant fields of expertise, years of clinical experience, and publication record. A literature review determined five themes, forming the basis for Delphi round one, which was aimed at generating ideas. Statements were drafted and ranked on a 5-point Likert scale in two additional rounds with the objective to reach consensus. Results were expressed as median and semi-interquartile range, with the consensus threshold set at ≤0.5.RESULTS: Ten internationally established researchers and clinicians participated in this Delphi panel, with a response rate of 80 %, 100 %, and 100 % across three rounds. Consensus was reached on 88.5 % of the statements, resulting in a framework for PT after hospital discharge. Essential handover information should include information on 15 parameters. A core set of outcomes should test exercise capacity, skeletal muscle strength, function in activities of daily living, mobility, quality of life, and pain. PT interventions should include functional exercises, circuit and endurance training, strengthening exercises for limb and respiratory muscles, education on recovery, and a nutritional component. Screening tools to identify impairments in other health domains and referral to specialists are proposed.CONCLUSIONS: A consensus-based framework for optimal PT after hospital discharge is proposed. Future research should focus on feasibility testing of this framework, developing risk stratification tools and validating core outcome measures for ICU survivors.
Several interventions have been developed to support families living with parental mental illness (PMI). Recent evidence suggests that programmes with whole-family components may have greater positive effects for families, thereby also reducing costs to health and social care systems. This review aimed to identify whole-family interventions, their common characteristics, effectiveness and acceptability. A systematic review was conducted according to PRISMA 2020 guidelines. A literature search was conducted in ASSIA, CINAHL, Embase, Medline, and PsycINFO in January 2021 and updated in August 2022. We double screened 3914 abstracts and 212 papers according to pre-set inclusion and exclusion criteria. The Mixed Methods Appraisal Tool was used for quality assessment. Quantitative and qualitative data were extracted and synthesised. Randomised-control trial data on child and parent mental health outcomes were analysed separately in random-effects meta-analyses. The protocol, extracted data, and meta-data are accessible via the Open Science Framework (https://osf.io/9uxgp/). Data from 66 reports—based on 41 independent studies and referring to 30 different interventions—were included. Findings indicated small intervention effects for all outcomes including children’s and parents’ mental health (dc = −0.017, −027; dp = −0.14, −0.16) and family outcomes. Qualitative evidence suggested that most families experienced whole-family interventions as positive, highlighting specific components as helpful, including whole-family components, speaking about mental illness, and the benefits of group settings. Our findings highlight the lack of high-quality studies. The present review fills an important gap in the literature by summarising the evidence for whole-family interventions. There is a lack of robust evidence coupled with a great need in families affected by PMI which could be addressed by whole-family interventions. We recommend the involvement of families in the further development of these interventions and their evaluation.
MULTIFILE