Objectives This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion. The effect of gastrostomy on quality of life for these patients and their family is currently not well understood.
Methods Retrospective qualitative exploration using semistructured interviews with patients and their informal carers to elicit in-depth descriptions of their experiences and views following gastrostomy.
Results 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. 10 patients and 8 carers were interviewed, approximately 3 months following a successful gastrostomy. Participants described clinical complications, practical issues, time restrictions imposed by strict feeding regimens and psychological issues, which adversely impacted on quality of life. However, the establishment of a safe alternative route for feeding and medication, and the reduced worry over difficult meals and weight loss, were described by all as outweighing these negative impacts. Participants also described having received education/training on gastrostomy feeding both in hospital and in the community, which helped them to cope during the transition from oral to gastrostomy feeding.
Conclusions This study highlights the challenges and benefits of gastrostomy as well as the importance of education and information provision. Emphasis should be given to education before and after insertion along with support and care in the community. While the significant impact of gastrostomy on patients and carers should not be underestimated, the potential benefits were described as outweighing these concerns.
- Neurological conditions
- Quality of life
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Motor neurone disease (MND) is a neurodegenerative illness that causes progressive weakness and wasting of muscles controlling movement, breathing and swallowing.1 Dysphagia is a common problem in patients with MND and causes difficulties in maintaining a safe and adequate oral intake of food and fluids.2 Patients with severe dysphagia often experience weight loss, choking and coughing on attempting to swallow, frequent aspiration as well as prolonged and effortful mealtimes.2–5 In addition, dysphagia is associated with reduced social and psychological functioning.6
Enteral tube feeding via gastrostomy is recommended to provide long-term nutritional support for MND patients with severe dysphagia.7 ,8 Gastrostomy may be beneficial for the survival, quality of life and nutritional outcome of patients with MND; however, there is a paucity of high-quality evidence relating to these aspects of the intervention.9–12 While gastrostomy is routinely recommended for patients with MND, there is a lack of information describing patient and carer experiences following gastrostomy insertion.
The aim of this study was therefore to explore the effect of gastrostomy on the lives of patients with MND and their carers, drawing on their views and recollections following gastrostomy insertion.
Following referral for a gastrostomy, and prior to the procedure, all eligible patients attending one MND Care Centre were invited to take part. Patients with a diagnosis of definite, probable, laboratory supported or possible MND (as defined by the El-Escorial criteria)13 and in whom a decision for gastrostomy insertion had been agreed were eligible to take part. Patients with cognitive impairment, such as frontotemporal dementia, were excluded. Following ethical approval, patient eligibility was determined by TW, PJS and CJM. Upon hospital admission (usually 2–3 days before the procedure), patients were approached by TW and TS, given detailed information about the study and invited to take part. Informed consent was obtained from the participants by TS prior to data collection. While visiting the patient in hospital, family carers of participating patients were approached by TW and TS, and invited to take part. A qualitative approach using in-depth semistructured interviews was undertaken.14 ,15 This single-interview approach was chosen to avoid overloading participant with research tasks during a difficult time in their lives.
The interview was based on a topic guide created by the research team following a review of the literature relating to gastrostomy across all disease indication and team discussions (see online supplementary material 1). Following the first two interviews, the team reviewed the topic guide in order to maximise its effectiveness. The topic guide provided a framework for discussion with each area explored during each interview, and supplementary questions used to seek depth regarding any additional areas of potential significance raised. The interviews were audio recorded and transcribed verbatim. Many patients had severely limited verbal communication and used written responses or communication devices (such as a Lightwriter) to respond. In addition to conducting joint interviews with carers, an outline of interview questions was sent beforehand to support participants with limited verbal communication in order that they could prepare written responses.
Data were managed with the aid of NVivo V.10 software and analysed using the technique of thematic analysis.16 ,17 Rigorous and systematic analysis ran concurrently to the interviewing process, with themes and subthemes generated from line-by-line reading of the transcripts. Themes were then reviewed and refined with repeated moving back and forward between the entire data set.18 TS developed the initial codes and discussed subthemes and themes with the team who reviewed data underpinning each code to agree the thematic framework. Sampling stopped after the 11th patient/carer interview as no new themes emerged; we deemed saturation to have occurred when no new conceptual insights could be generated from the data.19
A total of 31 patients were invited to take part in the study. In all, 27 patients accepted and 4 declined. Of those who initially had accepted, 23 underwent a successful gastrostomy, while 4 did not (either too unwell to tolerate the procedure or due to anatomical difficulties). Of those who underwent a successful gastrostomy, five patients died before the time of the interview and eight were too unwell to be interviewed. In total, 10 patients and 8 carers were interviewed (1 patient received formal care by health professionals in a nursing home and 1 lived alone with no informal carer). The two patients who had no informal carer also taking part were interviewed on their own. One patient and the carer were interviewed separately, and seven patients were interviewed jointly with their carers. Thus, 11 interview data sets were produced.
Table 1 presents the characteristics of the interviewed patients. Eight patients underwent per-oral image-guided gastrostomy (PIG) and two patients underwent percutaneous-endoscopic gastrostomy (PEG). The presented data regarding disease duration, ALSFRS-R score and body mass index at the time of gastrostomy suggest a relatively late decision for gastrostomy placement in this sample. The factors influencing decision making in relation to the timing of gastrostomy in the cohort have been previously reported.20 Table 2 presents the characteristics of use of the gastrostomy tube and a list of adverse incidents experienced by the participants.
Three recurring thematic areas were identified: descriptions of challenges and negative impacts on life, positive views of gastrostomy and the role of patient and carer education (see figure 1). We include a number of verbatim quotations to illustrate the accounts of the participants, with complementary quotes available as online supplementary material 2. Much of the data are quotes from carers who often acted as translator/facilitator for the patient. These data, while spoken by the carer, were supported by patient responses that were non-verbal such as nodding or shaking of head, facial expressions or words unintelligible to the interviewer.
Challenges and negative impacts on life
A number of challenges that could potentially have a negative impact on quality of life were described.
1. Clinical complications
Most patients recovered well in hospital and besides some minor pain did not experience any major complications. However, for two patients (P2, P9), the reality of hospital recovery was different as they developed an infection of the gastrostomy site, resulting in increased pain and longer hospitalisation. In addition, following hospital discharge, another four patients (P1, P7, P8, P10) experienced other complications of the gastrostomy site (such as granuloma).
2. Feed administration
Bolus feeding administration was reported as the most commonly used and appeared to work well for many participants; however, others reported nausea (during and after feed administration), reflux, vomiting and constipation. Two patients used gravity feeding (which was described as time consuming but more comfortable), and another two nocturnal feeding with the use of a pump, which allowed patients to be fed overnight. However, this method was not suitable and/or comfortable for all participants.
3. Handling the equipment
One carer reported that he had problems with bolus feeding as he suffered from arthritis, and it was difficult for him to handle the syringe to administer the feed. Another reported practical difficulties related to the number of pieces of equipment involved in gastrostomy feeding. Participants also reported that some parts of the tube were fragile and could break off easily with extensive use.
4. Supplies and storage
The delivery of feeds and consumables from the same company to all participants was described as working well in most cases, although one carer (C8) was concerned at the limited supplies that were received. Another patient (P7) and carer (C5) found the lack of specified delivery time restricting. The quantity of feeds and equipment required were not only intrusive in the home but restricted opportunities for travel.
5. Dressing and bathing
The majority of patients reported that the gastrostomy tube did not affect their choice of clothing. However, one carer (C2) described patient concerns regarding the tube catching on his clothes. Another patient reported that clothing was often stained following feeding and a carer recalled that he was always mindful of the feeding tube while assisting his wife with her bath.
6. Tube discomfort
Three participants (P1, P4, P6) reported that they found the feeding tube long, bulky and uncomfortable. They all used tape to keep it in place.
7. Time burden
Participants had to adhere to strict feeding regimens, and many reported that they had to plan all their day around the feeding times. Keeping up the schedule prevented them from going out, doing unplanned things and travelling.
It is restricting as all time clock watching. Also there are no surprises, off the cuff decisions as I have to work out and plan feeds and meds. (P7)
Administering the feeds could be tiring, and the preparation and cleaning up afterwards also impacted on time for other activities:
There's getting all the things prepared and washed…you crush those (medicine in tablets) into it before you start and then push water through it when you've finished feeding. But then the syringes have got to be cleaned and that takes a while. (C10)
8. Psychological impact
Living with a gastrostomy could increase anxiety about keeping the tube intact. A key psychosocial impact of gastrostomy for six patient/carer couples was the loss of the ability to share a meal. Mealtimes were described as an important social interaction, which was now lost:
Never really thought about it, how it would change. But it is the mealtimes I think that we've lost, sitting around the table and having a meal together. (C5)
Two carers described how they had not only lost the ability to share a meal but also did not want to eat in front of the patient:
I don't like eating in front of him because we used to eat together, we used to cook together and we all used to sit and eat meals, and I find it difficult to sit and eat a meal in front of him so I try not to do it. (C3)
Social isolation at mealtimes was also described by patients. One outlined how being around when others were eating was uncomfortable, and she would leave the room.
Positive views of gastrostomy
Despite the challenges outlined above, participants were able to identify positive aspects of gastrostomy feeding. Five participants perceived other MND-imposed symptoms, such as breathing difficulties, loss of mobility and speech, far more serious than the problems directly related to gastrostomy.
MND is a restriction… if I was fit I could do what I want, PEG would not be a problem. (P1)
If it weren't for his breathing he'd be fine. It's affected his diaphragm muscles and you know it's his breathing what's doing us. (C2)
1. Relief of anxiety
Gastrostomy feeding was described as taking away the anxiety of prolonged, effortful meals.
2. Weight stabilisation
In fact, all patients who had been losing weight before appeared to have stabilised their weight following gastrostomy. However, a carer reported that the expected weight gain had not materialised.
3. Perceived survival benefit
Nearly all participants held an overall positive opinion about gastrostomy, thinking that in the absence of alternatives, the benefits outweighed the difficulties that it brought along. A few participants expressed the view that it was gastrostomy feeding that had kept the patient alive and in good health as they felt that there had been no other alternative for them to maintain an adequate calorific intake.
Role of patient and carer education
Following gastrostomy insertion, participants received training and information provided by a dietician, a gastrostomy specialist nurse and other ward nurses involved in the postgastrostomy patient care. This training included discussing potential feeding regimens and methods with patients and their carers, practical tips for keeping the gastrostomy site clean and demonstrating feed administration. In addition, all participants received an information pack explaining in detail issues around postgastrostomy management. Prior to discharge from hospital, community services were informed of the patient needing home support.
1. Training in hospital
None of the participants recollected receiving any training prior to gastrostomy insertion. Most patients and carers reported that they received training about how to use and manage the feeding tube by hospital staff in the days following the procedure while patients still recovered in hospital. For the five patients who were dependent on their carers, it was the informal carer who received the training instead. Participants recalled that staff responsible for administering the feeds to the patients took the opportunity to demonstrate how it was being done to patients during visiting times.
Most participants found the training in hospital helpful. However, one patient/carer couple could not recall receiving any training and this had implications for their ability and confidence in using the gastrostomy tube in the first days following discharge.
I received no information other than the folder that [patient] was given…so we were a bit in the dark, we were struggling…I had no knowledge of what I had to do to keep the thing clean or to even put a feed through. (C6)
Moreover, another patient/carer couple reported that although they received training regarding feed administration, they could not recall receiving training on other aspects of the gastrostomy management and reported that they should have been given more information. Similarly, two other participants recollected that hospital training was more about feed administration and less about cleaning and managing the gastrostomy site and tube.
2. Training at home
Following discharge, participants reported that they received support and further training at home by local/community health professionals. These included MND care centre professionals, community nurses, GPs, dieticians, PEG nurses and nurses from a company that supplied feeds and consumables. Most participants appeared satisfied by this postgastrostomy support and reported that it had aided the difficult transition from oral to gastrostomy feeding. Postgastrostomy support in the community however varied, with two patients and one carer (P7, P9, C1) perceiving being less supported by their local healthcare service and found adapting to their new situation more difficult than others.
A tendency for late gastrostomy insertion was observed in this sample. As previously reported, the reluctance to give up oral feeding, uncertainty over the disease trajectory, not realising the potential benefits and negative perceptions of gastrostomy were some factors that delayed their gastrostomy decision.20 This paper has presented the accounts of patients with MND, and their informal carers, in relation to their experience following gastrostomy. The transition from oral to tube feeding was challenging for most participants, perhaps not surprisingly, as gastrostomy is an invasive intervention bringing a significant change to life. The first postprocedural weeks can be very demanding for patients and carers who may face clinical complications and new practical difficulties (eg, with feed administration and handling the equipment), as experienced by many participants of this study.
Syringe bolus feeding was the preferred method of feed administration, followed by the gravity bag and the nocturnal methods. Bolus feeding is a quick method for feeding,21 although the frequency of feeding using this approach was described as disruptive by many of the participants in this study. Patients and carers reported having to plan the day around feeding times, which restricted their ability to engage in social activities outside the home. Nocturnal/pump feeding can be carried out overnight and free up some useful time in the day for patients and carers. Only two patients in this study however had chosen to use nocturnal feeding. Reasons underpinning the limited use of that approach among participants require further investigation. Potentially low take-up could be due to a lack of realisation of its potential benefits or to the fact that it may not be practically suitable to some patients.
The key adjustment for patients and carers following gastrostomy insertion was described as the loss of the ability to share a meal together. This function is an important element of social, cultural and psychological quality of life and its loss can be experienced as social bereavement.22 Patients may feel uncomfortable feeding in front of others or reluctant to be around while others are eating. Similarly, carers may develop feelings of guilt and feel uncomfortable eating in front of patients.23 These experiences have potential to lead to social isolation and depression. It is therefore important for health professionals to understand these social consequences on the quality of life of patients, monitor for any signs of social isolation and depression and help people to develop effective coping strategies.24 Most patient participants had delayed the gastrostomy decision until they were struggling to swallow, and consequently following gastrostomy they stopped any oral intake attempt.20 The loss of eating was a consequence of MND progression, although participants perceived it to be a consequence of gastrostomy.
Despite the significant change to everyday living, all participants at the time of the interview appeared to be coping well with the difficulties and recognising the benefits. Gastrostomy has been shown to have clinical benefits for the patient, such as securing an alternative route for nutritional intake, averting weight loss and alleviating anxiety over meals.25 Indeed, these were the main perceived benefits by patients and carers in this study. Furthermore, many participants reported that they had no regrets having undergone gastrostomy and had a generally positive attitude towards gastrostomy feeding, stating that they would recommend it to other patients needing it. Some also held the view that the impact of gastrostomy on their lives was less than the impact of other consequences of MND, such as respiratory problems and the loss of mobility and speech.
The results of this study highlighted the educational needs of patients and their informal carers. It is interesting that although training was provided by hospital staff and later by community services at home, some participants appeared not to have retained the given information and/or were unprepared for the practicalities involved with feeding. This could be attributed to the lack of pregastrostomy education, the diversity of individual participant needs, the informal and unstructured way the first postgastrostomy training was provided, as well as the possible unsuitability of the context in which that training took place (a busy neurological ward while the patient recovered from an invasive procedure). Moreover, many patients had limited verbal communication, which may have hindered their interaction with the staff who provided the training, thus limiting its effectiveness. Another explanation could be the challenge of transferring care between hospital and community services, risking patients/carers not receiving support in the community straightaway. It is important therefore that gastrostomy education should be tailored in content and timing to address individual needs, as a part of a holistic approach to information and support provision to patients, and their carers, spanning from decision making to insertion, and living with gastrostomy feeding. For this, we propose a potential pathway, illustrated in figure 2. Initial information needs assessment, and provision of information may help people make informed decisions in relation to method selection and timing of gastrostomy.26–28 Delivery of a formal gastrostomy education programme, adapted to individual circumstances, may start at home after the decision for gastrostomy insertion has been made, to prepare patients and carers for the procedure as well as its subsequent challenges and potential benefits, reported in this study. Education may then continue after the procedure in hospital and/or in the community. Currently in the UK, the practice of gastrostomy is based on consensus and expert opinion.25 This has increased the diversity of care pathways offered by MND services in the country.29 Some services have included the delivery of pregastrostomy education in their pathway; however, the content and effectiveness of this training is unproven and would benefit from being evaluated to support wider adoption of this practice.
This study has a number of limitations. Participants were recruited from one MND care centre, and their views and recollections over their gastrostomy experience may not reflect the experiences of patients with MND undergoing gastrostomy in other MND care centres/clinics. In this sample, a late gastrostomy insertion was observed. Following gastrostomy, none of the participants used the oral route for their daily necessary calorific intake. However, not all patients with MND decide to undergo gastrostomy before they lose the ability to safely swallow food and drinks. In clinical practice, some patients undergo gastrostomy in anticipation of bulbar problems and respiratory function decline, whereas others choose to use a combination of oral and gastrostomy intake.
This study observed the impact of gastrostomy from the perspective of patients with MND and their informal carers. Carefully structured patient and carer education both before and after gastrostomy insertion and continuing support in the community following the procedure are key to a successful and smooth transition from oral to gastrostomy feeding. While the significant psychosocial impact of gastrostomy on patients and carers should not be underestimated, the potential benefits were described as outweighing these concerns. The study highlights the key role of comprehensive education and support during the adaptation from oral to gastrostomy feeding.
We are very grateful to the patients and carers who volunteered to participate in the interview study and to our funders for making this research possible.
Funding This study was supported jointly by the Motor Neurone Disease Association (MNDA) (grant number McDermott/Mar11/6369) and the Sheffield Institute for Translational Neuroscience (SITraN). Both funding bodies were consulted during the study design and the decision to submit the paper for publication fulfils their requirement for dissemination of the findings. PJS is supported by NIHR as a Senior Investigator.
Competing interests None.
Ethics approval NHS Leeds (Central) Research Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.
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