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.

Språkliga och kommunikativa begränsningar är vanligt förekommande vid ett flertal av de diagnoser och tillstånd som återfinns hos personer inom habiliteringsverksamheter i Sverige och förutsätter en tvärprofessionell och långvarig insats. Syftet med föreliggande arbete är att systematiskt beskriva bästa tillgängliga evidens avseende interventioner fokuserade på språklig och kommunikativ förmåga för personer med medfödda funktionsnedsättningar från sex års ålder och uppåt inom habiliteringsverksamhet. Arbetet kan ses som en fortsättning på EBH-rapporten ”Tidiga kommunikations- och språkinsatser till förskolebarn”.

Internationellt publicerade interventionsstudier från de senaste 15 åren med fokus på språkliga och kommunikativa förmågor vid typiskt förekommande diagnoser inom habiliteringsverksamhet granskades och sammanfattades. Initialt inkluderades endast översiktsartiklar och metaanalyser, men då dessa till största delen hade fokus på autism och/eller Alternativ och Kompletterande Kommunikation (AKK) utökades sökningen till att även inkludera ett antal primärstudier med annat fokus. Rapporten omfattar 67 studier.

Resultatet visar att ”stark rekommendation att använda” (enligt GRADE) endast förekommer i begränsad utsträckning, och när det förekommer är det vid insatser relaterade till autism och/eller AKK. ”Stark rekommendation att inte använda” finns vid insatser relaterade till akupunktur/akupressur och faciliterad kommunikation. Det kan konstateras att det finns en stor brist på studier avseende vuxna personer respektive intellektuell funktionsnedsättning.

Detta arbete tillför ytterligare kunskap till området för evidensbaserade insatser vid svårigheter när det gäller kommunikation och språk, och visar att evidens i strikt bemärkelse är svår att erhålla bland annat beroende på de små och heterogena patientgrupperna och, som en konsekvens av detta, en brist på stora randomiserade studier.

Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals. Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY. Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”. Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.Implications for Rehabilitation There is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding. This study suggests that an expanded focus on children’s participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome. Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy. Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.  © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Built on the important functions daily routines serve families and child health, this study aimed to explore parents’ descriptions of mealtimes and food-related challenges when living with a child using a gastrostomy feeding tube. The study was informed by ecocultural theory and based on in-depth interviews combined with stimulated recall. The interviews of 10 parents were inductively analyzed by means of qualitative content analysis. Four main categories comprised the parents’ descriptions: “One situation, different functions,” “On the child’s terms,” “Doing something to me,” and “An unpredictable pattern,” with one overarching theme. The analyses showed that the parents strived to establish mealtimes in line with their cultural context, although they struggled to reach a point of satisfaction. The study highlights the importance of health care professionals to address the medical aspects of caring for a child with a G-tube, but also the potential psychological and social consequences for ordinary family life. © The Author(s) 2021.

Purpose: To explore children's experiences of mealtimes when living with a gastrostomy tube.Design and methods: The study used a qualitative descriptive design framed within ecocultural theory. Seven children, three girls and four boys, aged 6–12 years with long-term health conditions and a gastrostomy tube participated in individual interviews. The interviews were qualitatively analysed by means of systematic text condensation.

Results: Four main categories comprised the findings of the children's mealtimes experiences: “Stable in form, open to variation,” “An individual, and a shared activity,” “An object that needs to be dealt with” and “A part of me.” A complex picture emerged, where the children experienced nutrition, whether through the gastrostomy tube or orally, as necessary for a healthy body, although this did not suffice to make the mealtime experience positive.

Conclusions: Regardless of the children's amount of oral intake, everyday mealtimes were valued as opportunities for social interaction and experienced as a predictable, routine activity no different from the mealtimes of other families. The accounts illustrated that in many situations the children knew precisely what they needed and did not need, what they liked and disliked and why.

Practice implications: Healthcare professionals should take children's knowledge into consideration to a greater extent when planning follow-up and intervention. The study illuminates that children can take an active part in their healthcare when offered flexible and carefully designed communication material, even in the presence of communicative and/or intellectual disability. © 2020 The Author(s). 

Background: Studies on long‐term feeding and eating outcomes in children requiring gastrostomy tube feeding (GT) are scarce. The aim of this study was to describe children with developmental or acquired disorders receiving GT and to compare longitudinal eating and feeding outcomes. A secondary aim was to explore healthcare provision related to eating and feeding.

Methods: This retrospective cohort study reviewed medical records of children in 1 administrative region of Sweden with GT placement between 2005 and 2012. Patient demographics, primary diagnoses, age at GT placement, and professional healthcare contacts prior to and after GT placement were recorded and compared. Feeding and eating outcomes were assessed 4 years after GT placement.

Results: The medical records of 51 children, 28 boys and 23 girls, were analyzed and grouped according to “acquired” (n = 13) or “developmental” (n = 38) primary diagnoses. At 4 years after GT placement, 67% were still using GT. Only 6 of 37 (16%) children with developmental disorders transferred to eating all orally, as opposed to 10 of 11 (91%) children with acquired disorders. Children with developmental disorders were younger at the time of GT placement and displayed a longer duration of GT activity when compared with children with acquired disorders.

Conclusions: This study demonstrates a clear difference between children with developmental or acquired disorders in duration of GT activity and age at GT placement. The study further shows that healthcare provided to children with GT is in some cases multidisciplinary, but primarily focuses on feeding rather than eating.

Children with complex medical needs requiring nutritional support are growing in number. This presentation will add new knowledge regarding gastrostomy in children by reporting primary diagnosis, and indications for the use of gastrostomy. Furthermore, the presentation will discuss and analyse data evolution trends from 2005 to 2015 in Sweden.

Methods: The first part of the study used national statistics to provide a broad picture of gastrostomy use in Swedish children. The second part applied a retrospective observational study design, reviewing medical charts in order to obtain an in-depth picture of the children in need for gastrostomy, and its use in a five-year perspective.

Results: The number of gastrostomy cases recorded in the national database was 3 946, 53% male, and 47% female. The distribution of age groups was: 0-4 years: 61% , 5-9 years: 17%, 10-14 years: 12%, and 15-19: years 10%.  When observing trends on a national level, the number of children receiving gastrostomy increased in average by 13% per year. Changes in the separate age groups were analysed. An increase was noted for children aged 0-4 years and for children aged 5-9 years. In the age groups 10-14 years and 15-19 years, there was no progressive increase. The results from the national statistics database will be discussed in relation to the medical chart-analyses of 75 children receiving gastrostomy in one Swedish administrative region between 2005 and 2015. 

Conclusions: As in many parts of Europe, the number of children in need for gastrostomy is also growing in Sweden, with the youngest children seeming to be the group increasing most.

Clinical implications: Nutritional support in Sweden is publicly financed, therefore these findings may be useful when planning both monetary and human resources in meeting the future challenges of paediatric health care.

AIM To describe trends in gastrostomy tube insertion in children with developmental or acquired disorders in Sweden and assess their demographic characteristics.

METHOD Children aged 0 to 18 years with gastrostomy tube insertions recorded between 1998 and 2014 were identified in the Swedish National Patient Register. Associations between disorder type and year of surgery, as well as age at surgery, were analysed using linear regression analyses. The association between disorder type and mortality 2 years from gastrostomy tube insertion was also analysed using logistic regression analysis.

RESULTS The data for 4112 children (2182 males, 1930 females), with a median age of 2 years (interquartile range=1–8y), were analysed. Children who presented with developmental disorders were the largest group (n=3501, 85%). The most common diagnosis in children with developmental disorders was cerebral palsy (n=165, 4%). In children with acquired disorders, acute lymphoblastic leukaemia (n=117, 3%) was the most common diagnosis. Gastrostomy tube insertions increased from 1998 to 2014, with the greatest increase in children with developmental disorders, who were younger than children with acquired disorders when the gastrostomy tube was first inserted. Age at tube insertion decreased inboth groups during the study period. Mortality was higher in children with acquired disorders, suggesting that gastrostomy tube insertion should be part of a palliative care approach.

INTERPRETATION Child characteristics differed depending on whether the underlying disorder was developmental or acquired, suggesting a need for clinical health care guidelines related to the specific goals of gastrostomy tube insertion.

Parent training programs aimed at improving language outcomes for children with complex communication needs have predominantly been evaluated on child-centered outcomes and less often on the impact on social life or parental well-being. This study examined parent perceptions of social life before and after ComAlong, a group intervention providing parents with knowledge and training in responsive communication, environmental-milieu teaching strategies and augmentative and alternative communication (AAC). Parents (N = 467) completed questionnaires during the first and last sessions of ComAlong groups held in Sweden 2012 to 2018. Main outcome measure was change in the Social Life Scale from the Family Impact Questionnaire. Associations between this measure and demographic factors of parents and children were analyzed, along with reported change in parents’ use of AAC. Pre-post comparisons revealed small significant positive changes in perceived impact of social life following intervention. The magnitude of the positive change was larger among parents of children with non-syndromic diagnoses and parents of children with autism spectrum disorder or attention deficit hyper activity disorder (ADHD). Differences in social life impact was not associated with parents’ gender, language proficiency, age, or educational background. In conclusion, communication-focused parent training programs can have a positive impact on social family life and may thereby influence children’s participation.

Background: Conversation partner training can be effective in improving communication in aphasia. However, there is a need for further research about effects of specific training programmes as well as about the relevant characteristics of the conversation partners who are to be candidates for training.

Aims: This pilot study explores the applicability of an adaptation of a conversation partner training programme. In addition, a protocol for assessment of variables relating to the person with aphasia and the conversation partner that may be involved in changes in conversational interaction is examined.

Methods & Procedures: Three dyads with persons with aphasia and their spouses participated in this explorative study with a case-series design. The training outcome was monitored with measures of perceived functional communication and analysis of multiple video-recorded natural conversations obtained at baseline, post intervention, and at a 12-week follow-up. Repeated measures of comprehension, word fluency, and psychological well-being were obtained as well as descriptive measures of the executive function and a profiling of attitudes and behaviour in communication in the spouses.

Outcomes & Results: All three persons with aphasia and two of the spouses reported a slight improvement in the measure of perceived functional communication. This perception of improvement was also reflected in blinded, independent assessments of ability to support communication in conversations for the two spouses who reported improvement. The profiling of the third spouse indicated problems in attitudes to communication and also in aspects of executive function, and may account for the lack of intervention effects seen in the third dyad.

Conclusions: The results show that intervention with the adapted training programme may be effective. It might be argued that the outcome measures as well as other measures fulfil their purpose. The profiling of relevant traits in the conversation partner may be useful, although the prognostic validity of the instruments needs to be further evaluated. © 2013 Copyright Taylor and Francis Group, LLC.