| 1. |
- Backman, Ellen, MSc, 1981-
(författare)
-
Ordinary mealtimes under extraordinary circumstances : Routines and rituals of nutrition, feeding and eating in children with a gastrostomy and their families
- 2021
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis is to explore routines and rituals related to feeding, eating, and mealtimes in families that have a child with a gastrostomy tube (G-tube), from the perspectives of healthcare professionals, the children, and their parents. The thesis is based on four empirical studies. Study I is a longitudinal, quantitative study with the aim to describe children with developmental or acquired disorders receiving a G-tube, and to compare characteristics, contacts with healthcare professionals, and longitudinal eating outcomes. Findings from Study I demonstrated that children with developmental disorders needed G-tube feeding for longer than children with acquired disorders. Children with developmental disorders were also younger at G-tube placement, and had more multidisciplinary healthcare. These findings led to the subsequent studies focused specifically on children with developmental disorders. Study II applies mixed methods and explores everyday life, health care, and intervention goals during the first year following G-tube placement through the documentation in medical records. In Studies III and IV, the experiences of family mealtimes for children with a G-tube and their parents are collected through individual interviews that are analysed qualitatively. Triangulation of methods, participants, researchers, and data across the four studies is applied to search for confirmation between findings, as well as to identify areas of discrepancy. Ecocultural theory, the WHO framework ICF, and the concept of participation form the conceptual framework of the thesis. Taken together, findings from the studies describe how the main experiences of feeding, eating, and mealtime relate to specific impairments of the child, the collective value attached to family mealtimes, and the parental responsibility to harmonise competing interests and conflicts among family members and/or healthcare professionals. This thesis extends previous research by focusing on the ecocultural context of the child in combination with a dimensional understanding of health. The findings shed light on measures taken by the families themselves to adjust to and handle their daily lives, as well as spell out areas where more support is needed. Furthermore, this thesis suggests that an expanded focus on children’s participation in everyday mealtimes, and in the healthcare follow-up of G-tube feeding, is important in enhancing intervention outcomes.
|
|
| 2. |
- Olsson, Cecilia, 1949-
(författare)
-
The kaleidoscope of communication : Different perspectives on communication involving children with severe multiple disabilities
- 2006
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis consists of six publications presenting a theoretical framework, a methodological proposal and three empirical studies. The aim of the work is; to gain knowledge on how children with severe multiple disabilities communicate with their caregivers, to analyse how different research strategies can add knowledge from different perspectives on communication, and to develop models for analysing and describing the dyadic interaction.The theoretical framework addresses the impact of multiple disabilities on the child’s communicative development, as well as the role of the communication partner, and implications for interventions. In the methodological framework, different research approaches are discussed and a system theory-based approach is proposed. The empirical studies are focused on pre-school children with intellectual disabilities in combination with vision disability and/or motor disability. When relationships between use of communication and child characteristics and setting conditions were investigated, the results showed relationships between disability and the use of communication but also that children with similar disability profiles could display quite different communicative patterns. When the communicative process was investigated with the proposed system theory-based approach, it was found that the child and caregiver continuously co-regulated their actions and together created consensual frames and that the process went through phases of instability and stability. Models for a system theory-based analysis of dyadic interaction are presented.The discussion is concentrated around how the results from the studies along with the theoretical aspects can contribute to evidence-based practice. The main conclusions are that, in communication involving a person with severe multiple disabilities, meaning is something that is co-constructed and communication cannot be regarded as a personal competence, the competence is within the dyad.
|
|
| 3. |
- Klang, Nina, 1978-
(författare)
-
Applicability of the ICF-CY to describe functioning and environment of children with disabilities
- 2012
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of the thesis, with four empirical studies, was to explore the applicability of the International Classification of Functioning, Disability and Health, version for children and youth (ICF-CY) to describe functioning and environment of children with disabilities. The components and categories in the ICF-CY were explored by studying items in ICF-CY based questionnaires in studies I and II and by linking texts of individual habilitation plans to the ICF-CY in studies III and IV. Professionals’ perceptions of the applicability of the ICF-CY and the ICFCY questionnaire were investigated in study II. In study IV changes in focus on ICF-CY components in documentation of individual habilitation plans were explored after in-service training in the ICF-CY. Studies I and II found variations in ratings of questionnaire items based on the performance qualifier in component Activities and participation. The variations may be explained by the context in which ratings were made and by expectations and perceptions of those who made ratings. The results indicated challenges in constructing universal measures of the performance qualifier. The studies also indicated limitations in the use of items based on Environmental factors, when used separately from items in Activities and participation. Studies II and III found that the categories in the components Body functions and Activities and participation were interrelated. Study III indicated challenges in describing family situation and children’s psychosocial environment in the Environmental factors. In study II the professionals described advantages and challenges in the use of the ICFCY and suggested necessary changes to the ICF-CY questionnaire. Study IV found that the professionals in child and youth habilitation described children’s functioning more precisely and in more detail after in-service training. Overall, the results suggest both advantages and challenges of the ICFCY when used to describe functioning and environment of children with disabilities. The results call for a need of a combined use of the categories from all the ICF-CY the components.
|
|
