Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records.

Abstract

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.

Keywords:

• Ecocultural theory
• enteral nutrition
• documentation
• ICF
• multidisciplinary
• pediatric

Introduction

The act of eating provides the body with rudimentary nutrition. Moreover, everyday meals in families offer opportunities for language acquisition, familial bonding and social interaction [1]. For the families of children with severe feeding difficulties, mealtimes are challenging. Gastrostomy tube feeding (G-tube) is indicated in children who require prolonged non-oral enteral feeding, most commonly because of neurological disorders, chronic disorders associated with malnutrition or oncologic disorders [2]. The use of a G-tube allows nutrition to be given directly through the abdominal wall into the gastric tract and is one of the most common endoscopic procedures with an estimated 400 performed in Sweden every year on children and youth [3]. Although the provision of basic nutrition is often in focus, the use of a G-tube also effects feeding, eating and the more culturally charged mealtime, thus covering the biological, psychological and social dimensions of human functioning [2,4]. Previous studies have shown the need for nutrition via a G-tube lasting several years for children with developmental disorders, for example, congenital neurological or chromosomal abnormalities [5,6]. This means that everyday mealtime activities will be deeply affected for a considerable period of time for such children.

It is through regularly occurring everyday interactions (e.g. feeding, playing or storytelling) within its immediate environment that a child develops [7]. Everyday activities, such as meals, comprise tools, goals and social values that reflect a family’s specific ecocultural context, thereby providing the developmental pathway for a child [8]. Mealtimes offer the child an experience of what is regarded as food or the people with whom the activity is usually carried out, for example. In addition, by requiring physical and communicative actions by children and caregivers, the resulting transactions during meals greatly influence children’s motor and language skills [9,10]. Thus, for children with disabilities, participating in meaningful activities during mealtimes should be an essential intervention goal in order to achieve healthy growth and development [11].

Following G-tube placement, caregivers’ reports in the studies by Åvitsland and colleagues [12] and by Edwards and colleagues [13] communicated reduced concern about their child’s nutritional status and increased satisfaction during meals, along with improvement in the caregivers’ own social functioning and quality of life. Yet, environmental barriers and meals continue to present challenges for some families, suggesting that they struggle in adapting to life with a G-tube. Caregivers have described the G-tube as an additional burden that restricts family activities, feel that professionals have control over family life, as well as experience problems integrating tube feeding into mealtime routines [13–15]. Thus, the use of a G-tube can be seen as influencing the ecocultural context of the child.

Ecocultural theory formed the theoretical basis of this study as it acknowledges that children’s engagement in sustainable everyday routines and activities is good for them and engenders well-being [7]. Thus, families with the ability to find meaning in routines and a balance between the competing goals, interests, needs and resources of family members will be more likely to experience a sense of well-being [16]. The theory emphasises that a major adaptive task for families of children with disabilities is the construction and maintenance of daily routines through which families organise and shape their children’s activities and development [17]. Families of children with disabilities must respond in various ways to sometimes conflicting interests and daily struggles, a process called family accommodation. Accommodation is defined as a family’s functional responses or adjustments to the demands of daily life [17] and, in the present study, specifically to the demands of living with a G-tube, an accommodation deriving per se from the feeding difficulties of the child.

For families of children with disabilities, supportive coaching from professionals may help caregivers develop skills and increase their ability to resolve both child and family problems [18]. Correspondingly, it has been advised that communicative, social and emotional aspects, as well as strategies enabling participation in everyday life, are incorporated into clinical practice, to improve families’ mealtimes and increase the overall success of G-tubes [15,19]. Despite the recommendations to address biological, psychological and social aspects in the health care of children using G-tubes, previous research describes a lack of professional guidance to families in adapting to everyday life with a G-tube and a predominant focus on nursing, supporting nutrition, adequate growth and monitoring safe swallowing [5,13,20–22]. Caregivers have expressed frustration towards health professionals as “being removed from the realities of what is going on in the home” [14] (Russel et al 2017, p.7). Consequently, it is imperative to explore more deeply both the type of health care offered to children using G-tubes and the aim of the healthcare measures.

A healthcare paradigm that reflects a dimensional health perspective is the International Classification of Functioning, Disability and Health: ICF [23] and the later version for children and youth: ICF-CY [24]. The ICF-CY supplements diagnostic classification systems, offering a comprehensive framework, based on a multidimensional, biopsychosocial model of health, in a common language for describing everyday functioning. The framework describes functioning using the dimensions of Structures and Functions of the Body, Activities and Participation, in the context of Environmental and Personal factors important for children and youth [24]. The ICF-CY can provide a framework of thought for assessment, intervention and monitoring child progress and outcomes, as well as a classification system hierarchically structured in chapters and codes within each dimension [24]. The ICF has been suggested as a useful tool for assessing feeding and swallowing difficulties and in planning intervention as it encompasses functional abilities such as swallowing and growth, how to facilitate active participation in everyday life, and important environmental factors [25–27]. A specific code set has also been developed covering important concepts of mealtimes in the ICF-CY to guide clinical work [28]. Furthermore, using the components of the ICF-CY in documents like medical records can guide health professionals in documenting and communicating a structured and more dimensional picture of a patient’s overall health.

Medical records, containing information, documentation and communication about the health care provided, are one of the main tools for multi-professional cooperation, as well as when communicating with the family [29]. Furthermore, medical records should be appreciated as an agent, playing an active, constitutive role in setting objectives, planning, documenting delivery of care and assessing outcomes [30,31]. The content of medical records is important as it serves professionals in making decisions, although it can never include all that was discussed during a meeting. The selection of precisely what type of information is recorded and what links between data are considered more relevant than others can be of particular interest, as this will probably lead to the measures taken.

Thus, this study aimed to explore health professionals’ documentation of child health and everyday life related to nutrition, feeding and eating following gastrostomy tube placement in children. An additional aim was to explore if individual intervention goals relating to gastrostomy, feeding, eating or mealtimes had been documented in medical records and if the content of the goals reflected a dimensional understanding of mealtimes using the child and youth version of the International Classification of Functioning, Disability and Health, ICF-CY.

Methods

Study Design

Medical records served as the source of information in this qualitatively-driven descriptive case study as naturally occurring documents can be seen as representing what is actually happening in the world, independent of specific research activities [32]. A convergent parallel mixed- methods approach was applied [33] consisting of a qualitative content analysis of medical records, supplemented by a quantitative component focusing on documented intervention goals linked to the ICF-CY. Qualitative content analysis was selected as it acknowledges the importance of the context producing the data and provides a systematic and objective basis for drawing inferences from written text in order to describe a specific phenomenon [34]. The content analysis was used to explore variations, differences and similarities in health care and everyday life after G-tube insertion as documented by health professionals. A deductive quantitative component was included to explore the use of intervention goals and what health dimensions were represented in the goals to provide specific insight that would add a more complex understanding of the findings from the inductive content analysis.

Settings and Participants

The medical records of 39 children with developmental disorders and G-tubes, taken from specialised paediatric secondary and tertiary medical care providers in one of Sweden’s 20 administrative regions, formed the basis of the study. Within this region, three municipal hospitals serve the region’s approximately 310,000 inhabitants. Specialised paediatric medical care is provided at one inpatient children’s clinic at the major municipal hospital, as well as at outpatient children’s clinics in all three of the municipal hospitals, children’s psychiatric outpatient clinics and Child and Youth Habilitation Service centres.

The Child and Youth Habilitation Service is a complementary part of the healthcare system with specific knowledge of childhood disability, offering support to children with developmental disorders and their families. The work of the Child and Youth Habilitation Service builds on a structure of regular family-centred planning and goal-setting meetings, involving the family and a multi-professional team [35,36].

Inclusion criteria for eligible children were: a) age 1–18 years, b) G-tube feeding duration >1 month, c) the need for a G-tube due to a developmental disorder, and d) G-tube placement from 1 January 2005 to 31 December 2015. A cut-off of one year of age was chosen as this is the age when children typically begin to play a more independent role in family meals due to the development of gross and fine motor skills, psycho-social development and oral motor functioning [37].

The final study group comprised medical records from 21 boys and 18 girls (Table 1). The children were identified through a search in the region’s electronic medical record’s system using the NOMESCO code JDB, Gastrostomy [38] and the International Statistical Classification of Diseases and Related Health Problems – 10th revision (ICD-10) code Z43.1, Encounter for attention to gastrostomy [39]. Demographical data were extracted from the medical records. Data were not normally distributed and consequently presented as median, percentages and range. The analyses were conducted using SPSS software, version 24.0 [40].

Table 1. Demographic characteristics of included children with and without intervention goals (n = 39).

Characteristics	Children without intervention goals N = 18	Children with intervention goals N = 21
Male/Female, N (%)	10/8 (56/44)	11/10 (52/48)
Median age in months at time of gastrostomy placement (min–max):	62 (15–192)	33 (16–180)
Primary diagnoses according to the ICD-10^a, N:
Chapter E: Metabolic disorders	2	–
Chapter F: Mental, Behavioural and Neurodevelopmental disorders	–	1
Chapter G: Diseases of the nervous system	8	9
Chapter P: Certain conditions originating in the perinatal period	2	3
Chapter Q: Congenital malformations, deformations and chromosomal abnormalities	5	8
Chapter R: Symptoms, signs and abnormal clinical and laboratory findings, not classified elsewhere	1	–
Proportion of nutrition through the gastrostomy tube during the first year following placement^b^,c, N (%)
all in gastrostomy	7 (39)	10 (48)
most in gastrostomy (>50% of total intake in the tube)	5 (28)	3 (14)
mostly orally (>50% of total nutritional intake from liquids and solid food orally)	5 (28)	8 (38)
Children in contact with Child and Youth Habilitation Service, N (%)	15 (83)	20 (95)

^a ICD-10, The International Statistical Classification of Diseases and Related Health Problems - 10th revision.

^b The proportion of enteral nutrition was estimated using the 4-point scale proposed by Åvistland et al [51].

^c Information missing for one child.

Data Collection

Medical records were accessed through the region’s electronic medical records system in September 2017. All clinics share the same system, which allows several professionals to read and/or write in the same patient record and easily access each other’s parts of the record. For children in contact with the Child and Youth Habilitation Service, the “habilitation plan” is one important part of the medical record, containing descriptions of problems, goals and methods used to achieve the goals. The habilitation plan is both a process and a document that assist professionals and families meet the needs of the child [36].

To ensure dependability of the data, the first author who had previous experience of the clinical population and the medical record system, conducted the search for medical records during a cohesive time span. The complete medical records of all eligible children were systematically searched for notes, explicitly including the concepts of gastrostomy, nutrition, feeding, eating or mealtimes in the healthcare context of assessment, habilitation plans, intervention or follow-up within the first twelve months following the G-tube placement. Sometimes, feeding or eating was the focus throughout the entire documented healthcare contact. In other cases, feeding or eating was mentioned or partially presented. The length of the texts varied from short notifications using standard phrases to a couple of pages of free text categorised under specific key words. To ensure trustworthiness of the sampling, continuous reflection between the authors took place throughout the data collection regarding what and how much from the medical records to include. Decisions during data collection and the following analysis process were documented in a research diary.

Data Analysis

The medical records were analysed using inductive qualitative content analysis procedures focusing on the manifest content [41]. The units of analysis in this study were extracts from medical records documenting the health care provided to children with G-tubes. In the first step, a selection of collected medical records were read and discussed as a whole by all of the authors in order to familiarise themselves with the content. Meaning units from the selected texts were then identified and extracted. The phase of extracting meaning units was not linear, but a recursive development based on discussions between the authors and on the content of the texts. A meaning unit was considered a phrase or paragraph that reflected the objective of the study through its content and context, followed and preceded by a shift of meaning in the text. As suggested by Elo et al. [42], the first author was responsible for the extraction of meaning units and the analysis following the initial collective reading. In the next step, the meaning units were condensed and abstracted into codes as understood in relation to the context (Table 2). Similar codes were grouped into categories and subcategories based on their manifest content. The coding and tentative categories were discussed between the authors and revised to ensure the credibility of the findings. Consensus was high throughout the analysis and only a few modifications were made following the discussions. The categories were illustrated by quotes taken from the original material. The software package NVivo version 11 [43] was used to organise and help analyse the medical records. Lastly, an overall theme was formulated that encompassed the recurring regularities within and across the categories.

Table 2. Examples of meaning units, condensed units, codes and subcategories from the inductive analysis of the medical records.

Meaning unit	Condensed meaning unit	Code	Subcategory
Requires help with the first change of button device. Mum does this herself with guidance.	Guidance on the change of button device	Guidance on gastrostomy care	Making gastrostomy tube feeding work
[The child] has been much more energetic and active at school since the gastrostomy tube was inserted. She “talks” much more than before.	More active and communicative following gastrostomy placement	General condition	Bodily condition
Eats around one small meal per week by mouth. Enteral feeding with 1,500 ml/day.	Mainly enteral feeding with small intake by mouth.	Nutrition regime	Aliments of the body

For the deductive quantitative analysis, documented intervention goals relating to the aim of the study were extracted from the habilitation plans or when clearly stated as an intervention goal within another context of the medical records. Established linking rules [44,45] were used when assigning relevant codes to the intervention goals following the second level of classification in the ICF-CY (Table 3). A procedure of identifying meaningful concepts from the goals was performed prior to the linking process [46]. The process of linking concepts to the ICF-CY was initially made by the first author followed by a review and discussion of assigned codes with the second author to ensure coherent and relevant coding.

Table 3. Examples of meaning units extracted from the intervention goals and applied codes from ICF-CY^a.

Meaning unit	ICF-CY code	ICF-CY domain
To become stable in weight	b530 unctions related to the digestive system: Weight maintenance functions	Body function
To eat by herself without a nasogastric tube or G-tube	d550 Self-care: Eating	Activity and participation
The parents receive support in how they can help the child eat by mouth	e310 Support and relationships: Immediate family	Environmental factors
The child’s food situation works satisfactorily	Not definable

^a The International Classification of Functioning, Disability and Health, Children and Youth [24].

Finally, the two data sets were merged together in a side-by-side comparison using a mixing matrix in order to identify similarities and differences in how categories from the qualitative content analysis were reflected in the documented intervention goals [47]. A process of discussion and reflection within the multidisciplinary research team took place during the analysis phase. Integration of the data sets occurred at the level of interpretation and reported through a narrative approach and a mixing matrix [33].

Ethical Considerations

Ethical approval was obtained from the Regional Ethics Committee in Lund, Sweden (dnr 2016/93) and the study adhered to the ethical guidelines of the Declaration of Helsinki [48]. The eligible children’s caregivers received written information about the aim of the medical records review, the confidentiality and the voluntary nature of the study. They were given the opportunity to withdraw from the study at any point without any given explanation. The heads of the clinics were informed about the study and approved the review of the medical records. In reporting the findings, particular caution was exercised in balancing the use of descriptive examples, while maintaining anonymity, despite small patient groups and rare disabilities.

Findings

The findings reflect information procured from the medical records of 39 children and contain documentation written by a range of health professionals: paediatricians, registered nurses, registered dietitians, speech-language pathologists, paediatric dentists, dental hygienists, occupational therapists, physiotherapists, social workers in medical and health care, psychologists and special needs educators. In the presentation of data, anonymous codes have been used to protect identities.

Qualitative Content Analysis of the Medical Records

The thematic findings of the documentation was compiled within one overall theme “Seeking a balance”, further discussed below. Two main categories with a total of seven subcategories were proposed to capture the key aspects of the documentation following the first year of gastrostomy in children. The first category was “Striving for physical health”, supported by the sub-categories “Organising treatment”, “Making gastrostomy tube feeding work” and “Stimulating food intake”. The second category was “Depicting everyday life”, supported by the subcategories “Bodily condition”, “Aliments of the body”, “Food in practice” and “The lived consequences of gastrostomy tube feeding”.

The overall Theme: “Seeking a Balance”

The overall theme captured the view of life with a G-tube and the care provided as an intricate balancing act between desires, demands, security and exploration. In some cases, the child’s curiosity and development had to be put aside in favour of safety or medical aspects. This demanded a constant adjustment of daily routines in order to meet the specific needs of the child and flexibility in all people involved in caring for the child on a day-to-day basis. The documentation further captured how practical aspects, assessments and recommended interventions for some children were set against each other and called for a functional cooperation between health professionals in order to find the most optimal level of care.

Main Category 1: “Striving for physical Health”

Embedded in this main category was the collective striving of caregivers, professionals in the child’s environment, and of the children themselves, for improved physical health in the child following gastrostomy placement with actions predominantly directed towards providing adequate nutrition, attaining satisfactory growth and caring for the gastrostomy stoma. For some families, this was smoothly accomplished through initial guidance and routine check-ups. For others, it was a distressing journey characterised by disappointments, setbacks and frustration. The subcategory “Organising treatment” described the administrative measures taken to carry out health care. This included, for example, the allocation of responsibility between different health professionals and between caregivers and health professionals. The category also included referral to and coordination of different healthcare providers, such as a paediatrician’s statement: “The nurse at the Child and Youth Habilitation Service must communicate with the dietician regarding the amount of enteral feeding”. For a majority of children, generally the same check-ups were planned directly following the G-tube placement, relating to skin care after surgery, introduction of enteral feeds and the change of G-tube device every three months. This similarity was most likely due to the fact that, within these areas, formalised routines through the use of PMs existed. Other areas of G-tube care were not formalised but were planned based on the identified needs of the child and family. For some families, the care was not planned. Instead, caregivers were encouraged to contact health professionals when needed. This way of working made it possible to individualise the care, but also made it dependent on and vulnerable to the knowledge and resources of the caregivers and specific health professionals. For one child, following a phone call, a nurse at the Child and Youth Habilitation Service wrote:

“The parents feel lost and want to know who the doctor in charge of the gastrostomy is. They feel nobody seems to know (…) much about this. (.) different doctors give different answers” (ID: 27).

The subcategory “Making gastrostomy tube feeding work” consisted of the documentation of healthcare measures offered to the child, caregivers and other persons important to the child, e.g. preschool teachers or personal assistants. The health care ranged from a more general, advisory kind of health care such as “Informs the school of enteral feeding” to the provision of specific, hands-on actions, with the common objective of accomplishing functional tube feeding. Examples of actions included adjusting the child’s personal aids to fit the feeding tube, efforts to reduce severe reflux or vomiting and instructions to caregivers in the management of feeding aids. The most comprehensive documentation concerned the care of the G-tube device and the skin surrounding it. A number of children had severe problems with granulation and infection around the G-tube stoma, which required recurrent visits for medical assessment and treatment. The documentation was often very precise, as exemplified by this note from a paediatrician:

“Below the stoma, the skin is noticeably irritated in an area large as a [Swedish coin]. Approximately 5 cm to the side, above the stoma, is a half-centimetre redness with a three-millimetre vesicle. Around the opening, the edge is slightly swollen (…) A dry compress is placed to prevent the plastic plate from directly touching the skin. Await application of silver nitrate. Parents will return in a few days for a new assessment” (ID: 14).

Accounts of nutritional care were another area replete with precise and detailed information on the type of enteral feeds and prescribed amounts. One example was “Start with two packages, 500 ml each (1,000 ml in total). Mealtime regime 200 ml x 5”. In the subcategory “Stimulating food intake”, efforts to increase the child’s oral intake of food were documented and could, for example, be expressed briefly as “A snack by mouth before enteral feeding is recommended”. In other cases, oral motor exercises such as “Practice of chewing skills with an oral-motor device and soft pieces of food” was repeatedly carried out to improve functions relevant to eating. The documentation also reflected the need for caregiver support in achieving harmony during mealtimes as stated by this speech-language pathologist:

“We talk about the importance of making the child perceive the meal as pleasurable, without any demands being placed on the amount of food he eats, but to focus on allowing him to taste what he wants, and then give the rest in the G-tube to ensure sufficient volume” (ID:33).

Other examples of strategies to improve oral intake included adjusting food texture or ensuring good oral hygiene in order to eliminate pain from untreated caries, for example. General guidance and information to caregivers or school staff concerning stimulation of eating and mealtime strategies were more common than first-hand therapy directed at the child or caregivers.

Main Category 2: “Depicting Everyday Life”

This category covered how the use of G-tubes and the different dimensions of nutrition, feeding, eating and mealtimes in daily life were made visible by the words of health professionals. The documentation offered the reader an insight into the current status of the area in question but did not result in intervention actions. The first subcategory, “Bodily condition” was the most comprehensive and contained notes about physical aspects of the child including current weight status, pain, food tolerance and oral motor functions. In some cases, observations were collected by means of proxy judgement, “The parents think she is more active and seems to feel better[after the G-tube placement]”, or clinically assessed by health professionals, “Difficulties in handling thin liquids are observed”. Formal observation tools were only mentioned in relation to growth insofar as most children were compared to standardised growth charts. Extensive documentation was found related to skin status, vomiting and growth. For some children, vomiting associated with feeding was a considerable problem that impacted the daily life of the family, as stated by this nurse:

“The child still vomits easily and you have to be careful with positioning changes after mealtimes” (ID:10).

“Aliments of the body” was the second subcategory and contained information about the child’s feeding regime. The most in-depth descriptions found related to type and amount of enteral feeds and how this was complemented by oral food intake, for example, “The child receives primary nutrition via the G-tube. Purées as taste stimulation in conjunction with meals” or “Mum states that they have switched to giving regular, mixed food via the G-tube”. The documentation reflected how nutrition demanded a great level of attention from all persons involved in the child’s daily care. A dietician wrote:

“They keep a diary every day of how much she eats for breakfast, lunch, dinner, as well as three snacks. There are also guidelines for how much energy each meal should contain. Calories are calculated on the basis of a replacement list to see how much energy she receives from the food and are complemented by nutritional supplements in order to reach the recommended intake” (ID: 19).

The subcategory also described the child’s expressions of food preferences and communicative signals during meals, for example, “Shows increased hunger, but in the form of pointing to the syringes that belong to the G-tube” or “The child likes squeeze pouches of porridge/fruit/vegetable purées. Enjoys food that he can manage himself, for example, sausages, pasta”. The third subcategory, “Food in practice”, included notes on practical aspects of mealtimes and food, regardless of eating orally or by gastrostomy. The notes could take the form of short phrases: “It works well with the gastrostomy and all materials” or “No practical problems with feeding”, but also more extensive statements about how gastrostomy care and meals were handled at preschool/school or while travelling. The child’s handling of cutlery, presence at meals or participation in food-related activities appeared in some medical records. Caregivers mentioned mealtimes as being a valuable occasion for the child to experience different tastes and textures, but also described difficulties in coordinating tube feeds with family routines, as in this note from a paediatrician:

They try to seat him at the table when the family eats, but the child absolutely refuses to attend. Receives enteral feeding at the same time the rest of the family is eating (ID:29).

Some notes reflected how the child’s communication during meals was supported, for example, “The child has a manual communication board (2x3 pictures) with different fruits to choose from”. The fourth and last subcategory, “The lived consequences of gastrostomy tube feeding” included both comments made by the child and caregivers, as well as the thoughts of health professionals about how life after G-tube placement was perceived experienced. Some families described the use of gastrostomy as being a relief, improving their social life, whereas others still struggled with feeding. Two examples were: “According to the mother, life is much easier [after G-tube surgery]” and “A lot of time is spent on feeding and wiping away vomit. Mum is tired and describes home as being like a prison”. The children’s experiences of the G-tube varied and included anger, worry, relief and pride. For some children, the G-tube was a social obstacle, as noted by this paediatrician:

“This summer, she didn’t want to swim because of her G-tube, meaning the tube interferes with her relationship with her friends (ID:20).

Finally, there were examples of notes that expressed feelings of caregiver vulnerability as relatives could be reluctant to learn how to handle the child’s G-tube, although feelings of comfort were predominantly communicated: “Mum (…) feels calm in the knowledge that [the child] is now finally getting what she needs nutritionally”.

Deductive, Quantitative Analysis exploring the Use of Intervention Goals and what Health Dimensions were represented in the Goals, according to the ICF-CY

A total of 38 intervention goals, related to the gastrostomy, feeding, eating or mealtimes, were documented for a total of 21 of the 39 children (54%) (Table 4). The goals were documented by health professionals represented by dieticians (4 goals), occupational therapists (6 goals), social workers in medical and health care (10 goals), speech-language pathologists (3 goals), physiotherapists (7 goals), paediatricians (2 goals) and paediatric nurses (6 goals). Common to all the goals were that they were decided upon in agreement between caregivers and health professionals, without the apparent inclusion of the children’s own opinions.

Table 4. Distribution (numbers) of documented intervention goals across the components of ICF-CY^a for every child.

ID	Body structures and functions	Activity and Participation	Environmental factors	Not definable
2	1
3	1
9	1	1	2
10	1
13		1
14	1	1	1
15	1
18	1
20	1
21			1
23	2
24	1
25	3		2	1
27	2
28		3	1
30				2
33	1
34	1		1
35				1
37	1
39			1
Total:	19	6	9	4

(Total number of children = 21).

^a The International Classification of Functioning, Disability and Health, Children and Youth [24].

The goals primarily focused on the ICF-CY component of Body functions (n = 19; 50%), followed by Environmental factors (n = 9; 24%) and Activity and Participation (n = 6; 16%). The category Not definable was assigned to ten per cent of the goals because of their general nature (n = 4). The most common topics of the goals were found to be related to ingestion functions, ICF-CY code b510 (n = 9; 24%) and growth, ICF-CY code b530 (n = 8; 22%). Within the Environmental factors, six goals related to types of food (e110), and other goals related to personal aids for positioning (e115, n = 1), support for immediate family (e310, n = 1), and support from health services (e530, n = 1). In one case, codes within the Activity and participation component related to the body position during feeding (d415), and in all other five cases related to the broader code of “eating” (d550). No goals related to participating in mealtimes without eating or participating in food-related activities.

Connecting the Qualitative and Quantitative Analysis

The connection of the qualitative analysis of health professionals’ documentation with the content of intervention goals is presented in a mixing table to give an overview of both similarities and differences between the accounts of the medical records and the goals set (Supplementary table S1). At an overarching level, one striking similarity was found in the predominant focus on biological aspects in the medical records reflected in an even more accentuated dominance of intervention goals directed towards the ICF-CY domain “Body function and structure”. Another similarity between the two data sets was the focus on the individual child and not the activities or contexts in which the child was situated. The medical records were sparse on examples related to participation in food-related activities and how caregivers could promote a supportive environment during meals. This corresponded to the content of the intervention goals with only one goal focusing on support to caregivers and no goal related to participation in meals or associated activities, irrespective of eating orally or not. Differences between the two data sets were also found. Medical care of the G-tube was the single most documented area in the medical records but was not reflected in any of the intervention goals. Similarly, nutrition was another area that frequently appeared in the medical records, but only occasionally in the intervention goals.

One example of the inconsistency between what was described in the medical records and what was documented as an intervention goal was a girl with a congenital chromosomal syndrome (ID: 21) receiving a G-tube at ten years of age. Her medical record contained accounts that reflected the struggle in finding optimal nutritional intake, family frustration with the allocation of treatment responsibilities, difficulties integrating the use of the G-tube with everyday routines such as eating at school, recurring healthcare actions relating to the gastrostomy stoma, and the use of medications. Despite the medical record encompassing nutrition, feeding and eating, one documented goal occurred: “To control the child’s growth”, with planned interventions being follow-up on medication and growth by the paediatric nurse together with the dietician.

Discussion

The review of medical records undertaken in the present study from the first year following a gastrostomy placement in children, did indeed capture aspects of nutrition, feeding and eating, thus representing a biological, psychological and social understanding of gastrostomy tube feeding by healthcare professionals. However, the entries were, in many cases, uneven, with extensive information on certain aspects (typically, biological) of the child’s health status or nutritional intake and sparse information on other aspects (typically, psychological, social and environmental). Healthcare actions were also more often precise and direct when they concerned physical aspects of the child and the G-tube, whereas the actions were fewer and more general in nature when they concerned psychological and social aspects. This, coupled with the predominantly bodily focus of the intervention goals, suggested that it was more important to assess and intervene in biological aspects. One must keep in mind that this study reviewed medical records from the first year following gastrostomy, why the results mirror issues of this specific timeframe and might differ if the second or third year was reviewed. To some degree, the documentation reflected all themes raised by Nelson and collegues [4] that should form part of the clinical conversation after G-tube placement in children, ranging from biological to social aspects, yet corresponds to previous research which states that health care for children with G-tube primarily focuses on growth, nursing and supporting nutrition [13,21,22].

The medical records illustrated diverse outcomes of gastrostomy tube feeding ranging from a well-functioning, alternative mode of nutrition with improvements in individual as well as social aspects, to a demanding part of daily life for some families with challenges in nursing, optimising nutrition and eating development. Daily hassles relating to the G-tube and the child’s eating were frequently described, for example, vomiting, seizures, behavioural problems and complications from the G-tube stoma. These had a negative impact on the daily routines of many families. The families of children with recurring hassles were often brought out of balance and communicated their frustration concerning healthcare contacts, preschool arrangements or in difficulties establishing sustainable feeding routines, thus negatively affecting the experience of the G-tube treatment. These results may provide one explanation for the dominance of the individual, bodily aspects seen in the medical records that show the necessity of handling acute medical issues. This study did not focus on understanding the outcome of the G-tube itself. However, the diversity in outcome highlights an important area of future research in understanding why the G-tube placement works well for some children and is associated with great struggles for others. Areas of interest include how to increase tolerance of enteral feeds, reduce reflux and vomiting and prevent skin infections around the stoma.

Furthermore, the thematic analysis of the medical records indicated balance as a constant part of everyday life. The overall theme “Seeking a balance” is closely connected to the aspect of accommodation within ecocultural theory [17] and the current study adds to previous research by recognising the everyday challenges of families and their children using a G-tube. The medical records captured necessary, but not always desirable, compromises and choices for sustaining routines, giving examples of major and minor functional accommodations of daily life to fit the resources, values and goals of the specific family. Examples of accommodations were noted, particularly with regard to care of the G-tube, nutrition and in practical aspects of administrating enteral feeds, whereas social aspects were scarcely mentioned. Some parents postponed returning to work after parental leave or rescheduled their working hours in order to facilitate caregiving and ensure optimal nutrition for the child. Other adaptive actions taken included relocating the feeding of the child from the table to a couch or pram to aid the use of a feeding pump, replacing recommended prefabricated enteral formulas with home-blenderised feedings that better reflect the values of the family, or by initiating connections to service providers when dissatisfied with current healthcare contacts. The findings correspond to previous research that discusses the ambiguous outcomes of the G-tube and confirms the consequences of the G-tube reaching beyond establishing basic nutrition [12–15]. The documentation describes how the G-tube results in more or less conscious accommodations in order to establish sustainable mealtime routines that potentially influence the developmental pathway of the child [7,17].

Despite the recurrent contact of many families with health professionals and the challenges described in everyday life with gastrostomy tube feeding, only about one half of the children had documented intervention goals relating to some aspect of the gastrostomy. Goals form the basis of interventions and goal content provides information and guidance on what is important to patients and their families at different stages of the contact with healthcare [35]. The findings from the present study raise questions regarding which struggles lead to healthcare measures and/or intervention goals and which struggles do not. Intervention goals that focused on individual, bodily functions were dominant, while environmental factors were moderately documented, and the activity/participation component of the ICF-CY only appeared in the goals of four children. The focus on individual, bodily aspects relating to nutrition and growth may seem natural and expected, as these are the main indicators when deciding upon G-tube placement. Yet, inconsistency was evident as not all children had intervention goals that covered bodily aspects, even though this area accounted for the largest part of the documentation. Healthcare measures focusing on growth and fundamental motor abilities for eating were most evident in the goals, covered by the ICF-CY component Body functions, whereas skin care and follow-up of nutrition were most evident as repeated healthcare actions with no explicit goal. Physical healthcare measures specified in a PM (change of gastrostomy tube device and post-operative skin care) were not included in the intervention goals but were routinely performed without a specific objective. Other areas, eating and mealtimes, for example, were only assessed if raised by caregivers as being problematic, but not on a routine basis. A surprising finding was that there were no goals about social adjustment or family accommodation following the new circumstances after G-tube placement, despite 10 of the goals being set by social workers in medical and health care. Furthermore, none of the 38 goals were set by psychologists. This imbalance between different dimensions both in the documentation of health care and in the intervention goals could reflect how medical issues might overshadow other aspects in situations in which healthcare actions need to be prioritised. The imbalance can also be a result of the lack of formal instruments to assess social aspects of eating and mealtimes, or simply that aspects of eating other than individual and bodily aspects were not an issue for the participating families. However, in the study completed by Russell and collegues [14], caregivers raised several challenges in other aspects of everyday life following G-tube placement, which were also apparent in the analysed medical records of the present study. A lack of correspondence between discussions and actions in habilitation plans has been previously noted by Ylvén and Granlund [35], especially with regards to interventions that focus on treating the child’s physical impairments. These types of interventions require expert knowledge and at family-centred planning meetings, more time is spent on organising treatment than discussing how such issues impact on everyday life. Thus, the findings could also reflect a lack of awareness in health professionals regarding areas that are important to investigate, demonstrating that attitudes and knowledge regarding G-tubes are still predominantly medical. Long-term follow-up using the dimensions of ICF is needed to explore how aspects of everyday eating are recognised for children with G-tubes and their families over time, exceeding the first year post G-tube placement studied here.

As noted earlier by Edwards and colleges [13], the absence of formal guidelines in the care and documentation of children using G-tubes may be one explanation for the inconsistent follow-up. Despite the fact that the ICF has been suggested to be a useful tool for assessing feeding and swallowing difficulties and in planning interventions [25,26], its use was not explicitly expressed in any of the medical records, nor were any other formal dimensional health protocols or clinical guidelines. The findings add to previous body of knowledge stating the need to widen the scope of care for children with G-tubes and their families, and the importance of using checklists or assessment frameworks to identify the required support [19,28].

The absence of child participation was another area of concern that was identified in the present study. Participation has two components: attendance, defined as “being there” and involvement, defined as “the experience of participation while attending” [11]. Examples of both components were found in the medical records, for example, the frequency of how often the child attended lunch at school or how the child was described as being involved in handling and exploring different textures during family mealtimes. Descriptions of strategies to increase child participation were also evident in the use of alternative communication strategies and in carrying out food-related activities such as baking or setting the table. Nonetheless, active attempts to capture the children’s opinions regarding the G-tube or food experiences were only rarely mentioned and child participation was not expressed during goal-setting. Children’s thoughts were generally interpreted by the people who cared for the child, which did not give the child an opportunity to speak for him/herself. This could be explained by a lack of knowledge in healthcare professionals when communicating with children often presented with communicative disorders associated with the feeding difficulties, but more probably by a lack of awareness of the importance of seeking the views of the child, even in areas relating to basic needs and survival. Previous research states the importance of obtaining and valuing the perspectives and preferences of children when attempting to make meaningful, long-term changes to their health and quality of life [49]. Obtaining the views of the child is also in line with the Declaration of the Rights of the Child, stating that children have the right to express their views freely and are to be provided with the opportunity to be heard in matters affecting the child in relation to their age and maturity [50]. Hence, the findings from the current study may be used by healthcare professionals to reflect upon whether current practices meet children’s needs, or if adjustments are required to better involve children in their health care. In the future, research is needed to further explore the views of the child to gain an inside perspective of living with gastrostomy and how this effects daily life.

Methodological Considerations

The use of a mixed-methods design shed light on different perspectives of the data and provided knowledge that would not be gained by using one single method. Nevertheless, the findings from this study must be interpreted in the light of some limitations. The study aimed to stay close to the actual text of medical records, applying an inductive, data-driven thematic analysis to identify themes and categories strongly linked to the data itself. Yet, previous theoretical and clinical knowledge of us as researchers cannot be completely disregarded. One limitation was the first author performing both the retrieval of medical records and the analysis, meaning that there was a risk of bias with respect to the findings. This was a result of the requirement for the person conducting the retrieval to have both knowledge of medical terms related to paediatric feeding disorders and access to the specific region’s electronic medical records system. The conformability of the analysis was strengthened by the use of quotations in linking the data to main concepts [42]. In addition, a research group comprising different professions and levels of experience was a strength during the sampling and analysing phases. It permitted various perspectives on the medical documentation based on both clinical and theoretical experience, making the extraction and interpretation of the texts less vulnerable to individual notions. One limitation in using medical records is the uncertainty regarding whether the documents truly represent what happened during the actual meeting between the patient and the health professional. However, one major advantage is the document’s authenticity and lack of reactivity, as it is unaffected by the research process [32]. A challenge in using medical records is the language, which proved to be uneven in quality and sometimes incomplete. In certain cases, this demanded, not condensation, but expansion and interpretation of a given statement. Even so, the documents reflected what was regarded as important by the health professionals and suggested events or situations that needed to be observed. Another limitation of the study concerns the sample. Medical records of children with a developmental disability and G-tubes within one administrative region over a ten-year period were included. This sampling strategy allowed for a great variety in type of diagnoses, age and sufficient sample size. However, the broad timespan may have captured descriptions that are no longer of relevance, routines that might have changed or routines specific to this region. One example was the changed routine of the gastrostomy devices being used. In the early years, all children initially received a percutaneous endoscopic gastrostomy tube which, three months after surgery, was replaced by a skin-level button device. This routine has changed and in more recent surgeries, a gastrostomy button device is inserted directly. Thus, it could be questioned whether the documentation described is of value in the discussions of future healthcare management in children with gastrostomy. Even so, a dimensional understanding of health is not a new phenomenon. Based on previous models of health and disability, the ICF framework was launched in 2001 and has played an important role in research and the clinical field of rehabilitation and disability for more than the ten years covered by this study. Thus, the findings from this study could be seen as reflecting the current health paradigm despite the broad time frame. Also, the chosen study approach did not attempt to generalise the findings to a whole population but rather describe variations and conduct thorough analyses within one limited sample.

Clinical implications

Services that support the health of children using G-tubes need to take into consideration that the sustainable accommodation of everyday life after G-tube placement includes biological, psychological and social dimensions. A multidisciplinary team that adheres to a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions could contribute to a situation in which the everyday lives of households adapt to living with gastrostomy and provide the basis of support that strives to achieve a successful G-tube intervention.

Conclusions

The current study describes everyday life with a G-tube and the care provided as an intricate balancing act between desires, demands, security and exploration. The medical records contained both descriptions and care initiatives related to basic bodily abilities such as swallowing or weight gain, subjective well-being such as enjoying food, and opportunities to participate and be engaged in food-related activities. However, the intervention goals predominantly focused on individual, bodily aspects. This confirms previous research that urges a raised awareness among health professionals of a holistic view of the follow-up of children using G-tubes. If health professionals overlook the wider concept of mealtimes as a topic worthy of discussion and support, a few families will probably raise this issue of their own accord. Only when health professionals pay attention to all aspects that could be affected, will health care be possible that is truly family-centred and based on the challenges faced in everyday life. Understanding how health care for children using G-tubes is documented and planned by applying an ecocultural framework adds a valuable perspective and could contribute to more family-centred interventions for children using G-tubes.

Acknowledgements

The authors would like to thank Anders Broberg, University of Gothenburg and Ulrika Ferm, Sahlgrenska University Hospital, for their valuable input, which greatly improved the manuscript.

Disclosure statement

The authors report no declarations of interest.

Additional information

Funding

This work was supported by grants from the Department of Research and Development, Region Halland, Sweden and from the Linnea and Josef Carlsson’s Foundation, Helsingborg, Sweden.