Some of the text of this chapter has been published previously as Tregay et al., 2016.136 © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.
Background
To understand more about parent perspectives of caring for a child with complex needs after congenital heart surgery, we undertook a qualitative study involving semistructured interviews with parents. Our study aimed to describe the ways in which parents recognise and make decisions about their child’s symptoms, their experience of seeking help when there was a concern, and any barriers they encountered in engaging with services to support their child.
Methods
Parents were invited to take part in the study if their child underwent major congenital heart surgery in their first year of life at one of three UK children’s hospitals who subsequently died or was readmitted unexpectedly to intensive care following their initial discharge. Parents were invited to interview if their child had their index surgery in the last 5 years and were initially approached by local specialist nurses who obtained consent to pass on their details to the research team.
All interviews were conducted face to face by a single researcher (JT) and all but one took place in parents’ own homes. Parents were asked about caring for their child at home following surgery, the support they received and the events leading up to any emergency readmissions. Interviews were tape-recorded and transcribed verbatim before being analysed using framework analysis.
Framework analysis
Framework analysis137 is a structured approach to managing qualitative data that allows researchers to organise and extract themes from the data more easily. It is a systematic approach that aims to reduce bias and make analysis of large data sets more manageable and involves entering qualitative data (e.g. quotes and summaries) into charts to aid interpretation, ensuring key themes are systematically searched for across each transcript.
Analysis using the framework approach consists of five stages.
Familiarisation: listening to audiotapes, reading transcripts, becoming aware of key ideas/recurrent themes and noting them.
Identifying a thematic framework: recognising emerging themes in the data set; may be guided by a priori issues but must also be open-minded to new themes; making judgments about meaning, relevance and importance of issues; may be tentative at this stage.
Indexing: identifying data (e.g. quotes) that correspond to a particular theme.
Charting: data identified during indexing are now arranged in charts of themes.
Mapping and interpretation: analysis of key characteristics laid out in the charts; should be able to provide a schematic diagram.
Members of the core research team worked collaboratively and iteratively on the development of the frameworks, mapping and interpretation of the data for each of the participant groups.
Results
Descriptive information
Specialist nurses contacted 25 families, 21 of whom agreed to be interviewed. One family was excluded, as they did not meet inclusion criteria, leaving a total of 20 families who were interviewed for the study. Of these families, 12 were bereaved. Fourteen interviews were conducted with one parent alone (n = 14 mothers), and six with both parents together. A range of ethnic, educational and socioeconomic backgrounds was represented in the sample (). One parent did not speak English as a first language and two were bilingual.
Family demographics. Reproduced from Tregay et al., 2016. © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms (more...)
All children had their first surgery between September 2009 and October 2013. Following their initial surgery, 12 children were discharged home directly from the specialist surgical centre; the remainder were discharged to their local hospital in a ‘step-down’ arrangement. A case-by-case summary of complications and symptoms for each patient is provided in .
Case-by-case summary of diagnoses, complications result in readmission and symptoms. Reproduced from Tregay et al., 2016. © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is (more...)
Data are presented in three main sections. The first describes symptoms of deterioration noted by families and is divided into five subsections: no symptoms, feeding, respiratory distress, appearance and behaviour. The second section focuses on decision-making about symptoms and the final section describes families’ experiences of seeking help. Additional quotes are presented in Boxes 10–16.
Selected quotations from parents whose child showed no obvious symptoms of deterioration. Reproduced from Tregay et al., 2016. © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This (more...)
Selected quotations illustrating parent’s descriptions of seeking help when they were concerned about their child. Reproduced from Tregay et al., 2016. © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& (more...)
BOX 11
Selected quotations from parents describing feeding and gastrointestinal symptoms in their child. Reproduced from Tregay et al., 2016.136 © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
The last week of her life, she started being sick and she’s never been sick. And I said to the community nurse ‘she’s been a bit sick and she’s not bringing up her wind . . . There’s something wrong.
FB05
He was sick the whole time. He couldn’t drink a bottle without being sick.
FR09
I think it was around that time he started to take off his feeds as well.
FB17
One thing we did notice was that if it was quite a hot day, he would be a bit sick.
FB18
BOX 12
Selected quotations from parents’ descriptions of respiratory distress in their child. Reproduced from Tregay et al., 2016.136 © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
It was his tummy and he was just, it wasn’t he was breathing funny, but it was just something-, he wasn’t quite comfortable. Something wasn’t quite right.
FB02
That little bit of the whistle in her chest again and basically just the breathing, you know, with the ribs. I don’t know how to describe it. The tummy sort of goes right in and then you can see, like, the outline of the ribs when someone’s breathing a bit funny.
FR07
In the morning, when he’d wake up, he’d cough. I now learned that that’s because he had lots of fluid resting on his lungs . . . At the end of August he started wheezing, but really randomly, to the point that I knew something was wrong.
FR09
We woke up in the night time, and we noticed that [his] breathing-, he looked different and his breathing was very hard.
FB10
‘Is she more breathless?’ I don’t actually know whether she was or not . . . I think it’s quite hard if it’s a gradual thing. To this day I still don’t really know whether she was more breathless or not, but she was her normal usual self.
FB12
Sometimes she would do a noise, as if she was straining.
FB14
. . . his nose will flare.
FR16
I noticed around seven months he would be a bit more breathless, he would have to nap more often because he would get tired more often . . . His stomach was sinking in.
FB18
He was breathing quite fast and I was like, ‘Slow down, slow down’, I didn’t know breaths could get that fast.
FR20
BOX 13
Selected quotations from parents describing changes in their child’s appearance. Reproduced from Tregay et al., 2016.136 © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
We, kind of noticed her fingernails at the end were going a little bit purple. Just around here, of her lips, they were a little bit purple.
FB02
He was smiling and happy but when he was lying down he just looked a bit-, in hindsight, he was incredibly puffy.
FR09
. . . sometimes he was a bit pale.
FB10
I noticed that she was sweating in her hair . . . When I stripped her off, then I noticed her chest was blue, and that-, I would have said she was sweating, but actually in retrospect she was clammy.
FB12
Her colour is a dark grey, blue and yellow. You see? There is no colour in her lips . . . My husband couldn’t tell . . . nobody could tell, except me.
FB14
I found that he would, even if it was very cool . . . in his sleep, he would sweat an awful lot. Around his back, his shoulders, his neck. I started to notice the blueing of the hands and his mouth . . . I think from six months on I mentioned at every appointment that I would notice more often that his hands would get blue, his feet would get blue, his lips.
FB18
BOX 14
Selected quotations from parents describing a range of behavioural changes in their child. Reproduced from Tregay et al., 2016.136 © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
It was quite sudden for us. He cried quite a lot and we could not know that he is not well. There was not any sign that he was not well.
FB10
. . . apart from the day he passed away, that was the only time [we noticed anything]. Then I wasn’t overly concerned, to me he was just crying, he didn’t look any different. [We] just couldn’t stop him crying …Probably for a normal child, baby, that’s normal. I don’t know, being a new mother, whether that’s normal or not normal. He was crying, and after everything I’d tried, he still wouldn’t stop crying.
FB11
I did wonder if she was head bobbing a little bit, but thought ‘She’s really tired,’ . . . so I took her back up with me and literally within five minutes of putting her down she just started screaming.
FB12
. . . she wasn’t herself, she was a lot quieter than she usually was, a lot drowsier.
FB13
He’ll start crying a lot more, he’ll wake himself up . . . He was really unsettled, he wouldn’t sleep . . . [later:] He kept hurling himself over, screaming like he was in pain.
FR16
He would have to nap more often . . . Also he started to get more unsettled at night. He was just more unsettled generally.
FB18
I felt something was wrong, but I couldn’t put my finger on it.
BOX 15
Selected quotations illustrating parent’s decision-making about their child’s symptoms. Reproduced from Tregay et al., 2016.136 © Article author (or their employer) 2016. Produced by BMJ Publishing Group Ltd (& RCPCH) under licence. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
We just said [baby] just needs to be known, that’s all it is, just get known because if you present him in an iller condition, he’s deteriorating, they need a baseline to compare it against.
FR01
It felt like total care to none at all.
FB11
I think that was the problem in the end because I was so focused on the paperwork than actually my baby. I couldn’t see what else was going on with her because I was so worried about every drop of milk.
FB05
That’s the first time I’d seen anything like that, so I wasn’t really aware of what was going on until they said, ‘well okay, this is the kind of stuff you need to look for’ . . . I think once you’ve seen it once you can tell after that.
FR07
When I really feel strongly about something I just have to act on it and I need to take him to see someone and then I can go, ‘Look, I just think that there’s something wrong here. Help me out, because I can’t tell you what it is’.
FR09
They told you what to look out for, his blue lips and his eyes, but I think from a parent point of view, you do not really see it as much as a medic would.
FB11
I think it’s quite hard if it’s a gradual thing. To this day I still don’t really know whether she was more breathless or not, but she was her normal usual self.
FB12
Symptoms
No symptoms
A small number of families reported very mild or no obvious symptoms at all followed by the very sudden collapse and deterioration of their child. Two apparently non-symptomatic children were readmitted as a result of routine saturation and blood pressure monitoring, which identified a blocked shunt in one case and the imminent need for further palliative surgery in another.
Feeding and gastrointestinal symptoms
Many families noted changes in their child’s feeding behaviour, which included a reduction in feeding, becoming more tired during feeds and the presence or an increase in vomiting. For many families these were symptoms that came on gradually and occurred within the context of challenging feeding behaviour characteristic of cardiac babies. In one case a prolonged bout of diarrhoea following routine vaccinations the previous day resulted in the very rapid decline of a previously well child.
Respiratory distress
A variety of terms were used by parents to describe respiratory symptoms in their baby. These included descriptions of breath sounds such as ‘wheezing’, ‘grunting’, ‘straining’ and ‘whistle’; changes in the rate, pattern or work of breathing including ‘breathlessness’; or their child’s appearance such as flaring nostrils and recessing under the ribs, which was sometimes described by parents as an abdominal, rather than a respiratory, symptom.
Appearance
It was common for parents to describe changes in their child’s appearance. This included changes in colour around the lips and extremities, which in the earlier stages may have been transitory, appearing in ‘spells’ or during exertion. Interestingly, there was variation in the ways that parents described the colour of their child: ‘blue’, ‘purple’, ‘pale’, ‘grey’ and ‘yellow’. Some parents reported that the colour changes were so subtle that they either missed them completely or the changes were not apparent to anyone but them. The colour change was sometimes noted in conjunction with cold hands and feet. Some parents also reported that their child had started to become more ‘sweaty’ or ‘clammy’, particularly at night or during a feed.
Behaviour
One of the more difficult areas to quantify was parent reports of behaviour changes in their child, many of which were subtle and not dissimilar to behaviours exhibited by healthy babies. This made these symptoms particularly difficult for parents to evaluate. Sometimes these subtle behavioural changes were the sole indicator that the child was unwell. In the early stages of their child’s deterioration, several parents noticed their child becoming increasingly weak and lethargic and tiring more quickly during exertion or feeds. Some parents noted changes to their child’s sleep pattern, sleeping more during the day and waking more frequently in the night.
Another early sign was their child being generally more ‘moody’, ‘grouchy’, ‘emotional’, ‘agitated’ or ‘unsettled’, and generally ‘not themselves’. Parents described babies that cried more frequently and were more difficult to comfort than usual. The changes they described were not out of keeping with what would be expected for a healthy baby but rather they were unusual for their own child. Several parents found this very difficult to interpret, and described a feeling of knowing something was wrong but being unable to identify what it was. In the late stages, only hours before their child’s collapse, a number of parents reported these behavioural symptoms increasing dramatically into persistent crying followed by high-pitched ‘screaming’ that preceded their child’s rapid deterioration.
Decision-making about symptoms
Although many, but not all, parents recalled being given information about signs and symptoms during their child’s hospital admission this was not always sufficient to enable them to recognise these symptoms out in the community. Even when symptoms were recognised, parents sometimes struggled to describe these and to make decisions about a course of action. This was particularly true if symptoms appeared very subtle or had a gradual onset. One parent also commented that as this was her first child she found it difficult to evaluate symptoms, as she did not know what was ‘normal’ for a healthy baby. Several parents spoke of the burden of completing monitoring forms at home, particularly in relation to feeding, with one parent explicitly stating that she felt she may have missed early warning signs in her child as a result. There was also some difficulty identifying change when the child’s baseline was atypical. A small number of parents said that they did not recognise the symptoms on the first occasion but that once these had been pointed out to them on their own child they found it much easier to identify them on subsequent occasions.
Often decision-making about symptoms took place in the context of local services that were relatively unfamiliar with CHD in comparison with the specialist centres where their child had their surgery and, in some cases this had a detrimental effect on parent’s trust in their local hospital. Despite this, some families still recognised the need for their child to be known to local services.
Experience of seeking help
For symptoms that parents judged to be non-urgent, their first point of contact would typically be the HP with whom they felt they had the best relationship, often the CLN at their specialist centre or the community nurse. However, in some cases parents waited until their next follow-up appointment to discuss their concerns with their local paediatrician or their cardiologist, resulting in a delay in their child receiving treatment. Several parents mentioned fear of appearing ‘silly’ or ‘paranoid’, particularly to more senior HPs, although this could be countered by positive experiences of seeking help and reassurances at an early stage, typically from the liaison nurse, that they should telephone with any concern no matter how small.
Parents reported an overwhelmingly positive experience of the support they received from their CLN with this link being described by one family as a ‘lifeline’. This was particularly true if this was someone they had met during their hospital admission. In some cases the liaison nurse was able to intervene with a family’s local hospital to facilitate more rapid access and treatment in an emergency, discuss treatment plans with local HPs and arrange transport back to the specialist centre when required.
Not all families had a good experience of seeking help when they were concerned about their child, and several families said they felt that their concerns were not taken seriously by their local services. In some cases, parents were falsely reassured about symptoms or told to wait until their next follow-up appointment to discuss it with their cardiologist. Several parents described occasions when they had to be particularly assertive with HPs in order to get the right care for their baby.
In a number of cases parents felt that their local accident and emergency (A&E) staff were unprepared to manage a child with CHD in an emergency, and in some cases there were also problems with A&E staff gaining access to the information they needed to treat the child. Out-of-hours service at A&E was also raised by some parents, with many detailing long wait times and one parent describing having to make decisions about the severity of her child’s symptoms within working hours in order to get the best care.
Discussion
Our study has described the ways in which parents recognise and make decisions about their child’s symptoms at home after congenital heart interventions in the first year of life and details parental accounts of seeking help. Our findings suggest that, although the potential for postdischarge deterioration in these children is well known (see Chapter 2), information given to parents may not always sufficient for them to make decisions about their child’s symptoms in the community.
One difficulty is in the language used to describe symptoms to parents. For example, some classic descriptions of heart failure suggest that parents look out for ‘blue’ skin colour in their child. A number of parents in our study found this vocabulary ambiguous and difficult to interpret with several different descriptions of colour being used by parents to describe cyanosis in their child. Decision-making may be particularly challenging if symptoms appear gradually or if parents have no previous experience of seeing their child unwell. Our study also highlighted behavioural symptoms as being a potentially under-recognised sign of deterioration in these children. Within our sample many parents described subtle changes in their child’s behaviour such as changes in sleep pattern, lethargy, crying and general irritability. These were some of the more difficult symptoms to interpret as they often presented subtly at first and could be difficult to distinguish from behaviour typical of a healthy infant. It is important that parents are encouraged to seek advice at the earliest opportunity and that those HPs at the front line have access to the information they need in order to respond in an appropriate and timely way. We suggest that such subtle signs as a behaviour change should be considered within the wider context of an infant’s medial history, normal or usual clinical state and physical examination at a given time point, since these may represent an early warning of true deterioration.
Although it is important for parents to be trained to recognise symptoms of deterioration in their child it is also important that they are able to summon prompt and appropriate medical care when they have a concern. Several barriers to accessing prompt medical assistance were identified and these included parents’ fear of appearing ‘silly’ or ‘paranoid’, parents feeling that their concerns were not taken seriously, and long wait times and lack of protocols at A&E. Several parents described feeling let down by their local services after flagging symptoms of concern and either being falsely reassured or advised to wait until their next follow-up appointment to discuss their concerns with their cardiologist. Factors that facilitated access to appropriate support included parents having a trusted point of contact with whom they could safely discuss their concerns and having the confidence to assert themselves with HPs when they were not satisfied that their concerns had been addressed. A role for home monitoring (Ghanayem et al.15) was also noted as potentially useful in identifying high-risk children who appear clinically well. In some cases, apparently asymptomatic children were identified with the aid of home monitoring or measurements taken at routine follow-up appointments suggesting that these more objective forms of surveillance may be effective for identifying children who require intervention but appear clinically well.
Limitations
Our study has a number of limitations. First, parents approached to take part in the study were those known to the specialist nurses who assisted with recruitment. As this meant that parents were approached by someone familiar to them, resulting in a high opt-in rate, it is possible that those families who opted into the study are those who had a better relationship with the specialist nurses at their hospital. An important consideration of qualitative research methods is to describe, rather than quantify, the views held by a population of interest; therefore, it is important to ensure that the study sample represents the diversity present in the population being described. Our study included parents of children with a range of diagnoses, outcomes and discharge pathways. We also attempted to achieve diversity in our sampling of ethnicity and parent educational level, although, as is often typical in UK research, our sample included parents of predominantly white British children. We also struggled to recruit parents’ whose first language was not English, despite offering access to interpretation, and it is likely that these parents face additional challenges not captured by this study.
Conclusion
Many of the complications that can arise following congenital heart surgery may lead to relatively rapid deterioration in a small infant, thus leaving a small window of opportunity within which to intervene. This makes it particularly important for parents to be supported to recognise symptoms in their child and for them to be able to summon help quickly when there is a concern. The family burden of caring for a child with complex health needs is well known,138–144 and as families responding to their infant’s symptoms are likely to be acting under stress, it is important that the information they are provided with is straightforward and that help is readily accessible. Therefore, our study has implications for HPs involved in the discharge and follow-up of babies after congenital heart surgery, in relation to both interpretation of reported symptoms and the processes they follow in response.
