The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

Abstract Background Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods We conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.


| INTRODUC TI ON
Increasing numbers of adults and children with complex healthcare needs are cared for at home, primarily by family members. [1][2][3][4] As a result of significant advancements in surgery and critical care, many adults and children who may not previously have survived are now cared for at home. Many of these people have on-going medical needs; amidst growing pressures on health-care resources, care is increasingly provided by families. It is now common for families to carry out complex procedures such as enteral and parenteral nutrition and tracheostomy care. While care at home brings many benefits, there are significant repercussions for families and the health-care system that need to be better understood.
Some of the most complex care is provided by parents caring for children with serious chronic conditions. 5,6 The initial months caring for the child at home can be frightening and overwhelming. There is a lot to learn and many of the medical procedures parents undertake are emotionally demanding. 7,8 Studies have described the tension some parents feel between their role as a 'nurse' and as a parent. 9 These parents experience significantly more stress than caregivers of healthy children, with increased stress associated with greater parental responsibility for treatment management. 10 Medical routines, the need for constant vigilance and frequent medical appointments, place significant time demands on parents. 11 On-going sleep disturbance is a common problem for these parents and has been found to be associated with poor mental health and relationship difficulties. 12,13 The burden of care experienced by families can be substantial. 14 Navigating the complex health-care system is a challenge for families. 15 There is often a large multidisciplinary network of professionals involved. This can result in a busy timetable of appointments and problems co-ordinating care. Despite this large network of professionals, the primary responsibility for managing care lies with parents. 15 Mainstream health-care services that parents can readily access, such as General Practioners (GPs), Accident & Emergency (A&E) and Out of Hours services, often lack the expertise to help. 15,16 This places added responsibility on parents to solve problems themselves, particularly out of hours, when seeking help from specialist staff can be difficult.
Families undertake extensive work, including administering treatments and medications and co-ordinating care. This work has been described as the 'burden of treatment' in the context of selfcare for patients with chronic conditions. 17,18 In this paper, we use burden of treatment theory as a lens to explore the challenges faced by parents who carry out complex medical procedures. The aim of this qualitative study was to explore the challenges faced by families caring for children who need complex medical care at home. We present a secondary analysis of 11 in-depth interviews with parents whose children had abdominal surgery and needed on-going medical procedures at home.

| Sample
Participants were purposely selected from an existing sample of 44 in-depth interviews with parents from the United Kingdom whose child had abdominal surgery in the first year of life. 19 Extracts from the interviews are available publicly on the Healthtalk.org website. 20 Parents talked about a broad range of issues such as diagnosis, birth planning, the surgery itself and life back home. Interviews lasted between 1 hour 15 minutes and 3 hours 30 minutes. Further information about the recruitment and participants is available in the original publication and online. 19,20 Although the original study was designed to explore parents' experiences of having a baby who needed abdominal surgery, many parents talked extensively about the longterm impact of caring for their children at home, which has not yet been explored in publications from this data set. 19,21 The interviews began with unstructured narrative prompted by an open-ended question and were followed up by a semi-structured component following up on issues raised by parents and themes suggested by the literature and advisory panel. The open narrative approach to the interviews lends itself to supra analysis, that is secondary analysis of an existing data set to investigate a different question to that of the primary research. 22 A purposive sample was selected to include families who provided complex medical care for their child. This included medical tasks such as tracheostomy care, feeding tubes, stomas and bowel washouts. A total of 11 relevant interviews were identified and full transcripts accessed through a data sharing agreement. All parents had given informed consent before taking part and consented for their data to be used in publications, stored in an archive, and available (subject to approval) to other researchers for secondary analysis (Berkshire Ethics Committee, 09/H0505/66). Table 1 shows information about the families. All infants had surgery in their first year of life, but to capture the long-term impact of this surgery, the original sample included a broad range of ages of the children at the time of interview, ranging from 18 weeks to 9 years (see Table 1). Some of the children remained in hospital following birth for long periods of time, including one child who was in hospital for 3 years before going home. Other children were discharged home shortly after birth and returned to hospital for planned surgery several weeks or months later, with a few readmitted in emergencies.

K E Y W O R D S
caregivers, children, chronic disease, home nursing, medical complexity, paediatrics, parents The type of care provided by the parents varied according to the clinical condition. The conditions are listed in Table 1 and further information is given in Appendix S1. Five of the children needed bowel washouts, two had tracheostomies, two had stomas, two needed enteral tube nutrition (nasogastric tube or gastrostomy), one needed home oxygen, one needed parenteral nutrition (feed is delivered into the bloodstream, bypassing the gut) and two needed anal dilations. Appendix S2 explains in more detail what these tasks involve.

| Analysis
The first author BP undertook a thematic analysis of the transcripts, using the steps laid out in Ziebland and McPherson's paper on analysing personal experiences of health and illness. 23 This approach is suitable for analysing secondary data, and ensures all the different issues raised by participants, including negative evidence ('deviant cases'), are included in the analysis process. The author first read through the interview transcripts noting down potential themes and then coded the interviews with the support of NVIVO v12 (software for qualitative analysis), developing a coding framework iteratively in discussion with LH and CV. The research question was focused on the experiences of parents caring for children at home: parts of the transcript which were irrelevant to the research question (eg, descriptions of the birth) were not coded. The data were organized under anticipated and emergent themes, used constant comparison techniques to group the data. The codes were revised through an iterative process. For each theme, a 'one sheet of paper' (OSOP) analysis was conducted. 23 Summaries of each code were then written and re-written and discussed with the research team. Each code was illustrated with quotes.

| RE SULTS
Parents described facing a number of challenges when caring for children with complex medical needs. The first theme explores parents' responsibilities, the second looks at the impact on daily life and the third explores the parent journey over time. Table 2 shows illustrative quotes for each theme to give an overall sense of the coding structure and challenges faced by families.

| The responsibilities of the parent
Parents had numerous responsibilities beyond those most parents have for their child. These included performing medical procedures, managing emergencies, co-ordinating care and advocating for their child. These responsibilities would traditionally be held by healthcare providers, who in comparison with parents, receive far more training and on-going supervision. The sense of responsibility parents felt was particularly acute in the period following discharge from hospital, when parental confidence was still building and routines were unfamiliar. For some parents, there was a real sense of being alone in these responsibilities.

| Performing medical procedures
As well as medication management, parents were also responsible for managing supplies and regular deliveries, and there were often hiccups. Homes became medical spaces, storing these vital supplies.
We were having loads of trouble with the supplier, they were throwing our supplies over the back gate when it was raining… So the boxes were getting wet and I was calling them and I was like 'I can't use stoma bags that have been outside in the rain you're gonna have to re-send them' (ID39&40)

| Advocating for your child and fighting the system
Parents advocated strongly for what they felt was best for their child and family. Parents wanted to feel they were able to make decisions and sometimes got frustrated when they felt the rules and regulations were being applied without flexibility. In some cases, there were disagreements between parents and health-care professionals. For example in one instance, health-care professionals threatened to report the parents to social services citing safeguarding concerns because the parents wanted to care for their child at home rather than in hospital.
We said well this is ridiculous we're not doing this and they said well at that, at this point then that becomes a child protection issue we're gonna have to bring in

| The impact on the family and day-to-day life
The impact on day-to-day life for families was substantial. There

| The challenges of going out
Families were unable to leave the house and go out with their child after coming home from hospital. There were practical constraints such as being unable to carry all the medical equipment or not being able to take their child out due to infection risk, and psychological reasons for not going out, especially soon after coming home from hospital.
I was afraid to take him out for long periods of time and like we say we've had all of these different things go wrong over the years and although they're rare… they're quite life threatening. (ID35)

| Impact on siblings
Concern for the impact on other siblings was a key feature of parents' narratives. They felt guilty and torn: they had to prioritize the needs of their medically complex child, and didn't have enough time to spend with their other children.

| The parents' journey over time
Parents invested a lot of time and effort in developing substantial expertise in the medical needs of their children and felt that aspects of their expertise exceeded that of clinicians. Parents were on a journey to find a new normal for their family as they tried to make sense of their new reality which few others understood.

| Developing expertise
Parents became experts in their child's medical needs by doing procedures daily, learning through trial and error, and doing extensive research. They used a range of sources, including online information, advice and recommendations from their peers, and journal articles.
Over time, many developed more expertise than the professionals.
They wanted their expertise to be valued by professionals.
Don't undervalue the amount of time and energy [um] that parents put into trying to find out as much as they can and also knowing their child inside out and back to front.
Parents developed expertise in managing and responding to problems, and detecting early warning signs and became increasingly confident in medical decision making.
As parents developed expertise, some also became very wary of the care given to their child in hospital or by other professionals and carers. For example, one family (ID28&29) describe the distress caused to their child during a bowel washout performed in hospital.
It was absolutely brutal…clearly someone who is mostly used to doing things on unconscious people, you know, and he [child] was hysterical in the end. (ID28&29)

| The new normal
Parents were on a journey to find a new normal as they adapted their lives. The pursuit of normality was a key feature of their narratives. Some families talked about normal life returning, in relation to their child's condition getting better or being able to go out and do everyday things. Feeling like their child was 'normal' was important to some: they made references to 'normal' activities their children (or other children with the same condition) do, like playing football.
Others reflected that their normal wasn't necessarily what others saw as normal, but something they had come to accept.
He'll be fine, it will be fine, they're just a different normal. (ID20&21) Parents reflected on the differences between their family and oth- We knew that we would have a lot of obstacles to face…I did not anticipate our life to become completely and utterly consumed by medical needs. (ID19)

| Burden of treatment
Burden of treatment theory was originally developed to describe the work of patients with chronic conditions (and their caregivers) who are increasingly delegated tasks previously undertaken by the health-care system, such as self-monitoring, drug management and passing information between health-care professionals. 17,18,24 The parenting of children with complex medical needs is similarly complex and burdensome and has been described in one study as 'intense parenting'. 14 The capacity of families to take on these responsibilities is dependent on many factors such as the medical complexity of the child and the psychosocial complexity of the family. 25 An additional challenge for parents of children with the most complex needs is that hardly anyone else has the expertise to care for their children.
This contributes to a substantial sense of responsibility and means that parents are isolated and cut off from normal support networks.
Parents are taking on significant responsibilities, many of which are within the remit of highly trained professionals in hospital settings, but given comparatively little support and preparation.
Parents learn to navigate the complex health and care system and become advocates for their children. As other studies have found, the burden of navigating the system can have a negative impact on parents' mental health. 25 May and colleagues described burden of treatment as the ability to exploit opportunities to utilize health-care service. Parents in this study similarly had to develop structural resilience (potential to absorb adversity), social capital (informational and material resources), social skills (securing co-operation) and functional performance (potential to do the work). 24 The health and care system may sometimes appear to try to control parents (eg, by involving social services or threatening to take away a care package as was the case in the interviews) which can lead parents to feel they are 'fighting the system'. Studies from other countries have also found that parents feel they are fighting the system. 26,27 Systems, and the rules and regulations which govern them, are often created around services, rather than designed to meet the needs of children and families. Coordinating care and advocating for their child becomes a time consuming endeavour for parents and adds to the burden of care.

| Support for parents
Families have substantial expertise that needs to be valued and listened to, 21 but they need help to ease the burden of care, and more preparation and support for the responsibilities they undertake. There is a clear psychological impact on the whole family which needs to be core to the preparation and support parents receive.
There are existing resources from the literature on trauma-informed care which may help families cope with managing distressing procedures and emergencies at home. 28 Online education materials are available at HealthCareToolBox.org. Some of parents' existing responsibilities, for example co-ordinating care and navigating the system, ought to be provided by statutory services. Although this is mandated by clinical guidelines in the UK, 29 it is difficult to achieve in practice. It is well recognized that greater integration between health-care services has the potential to help with co-ordination of care. 25,30 In Canada and the United States, models of care for children with medical complexity are being tested in which care coordination is provided. 31 In the UK, community paediatricians and palliative care often help with co-ordination of care and the charity Well Child funds nurses who help with co-ordinating care, day-today emotional and practical support and also help train parents and carers, but these services need expanding. 32 In order for parents to feel safe leaving their child with others (eg, paid carers, family members, respite services), high-quality training needs to be more readily available. There is evidence that greater access to respite care, peer support and financial aid can also help reduce the burden on families. 33,34 Cuts to services which support families (eg, respite care) are creating more acute problems and high costs in the longer term when families are unable to cope. 35

| Strengths and limitations
The open narrative approach to the interviews enabled the researchers to uncover rich insights into the experiences of parents caring for children who require complex medical care at home, despite the fact that the interviews were originally conducted to answer a different research question. Some of the findings clearly resonate with themes identified in other qualitative studies, for example feeling you are fighting the system and parents' experiences of doing distressing procedures. 8,14,26 Parents of children with complex needs have limited time and can be difficult to recruit; by conducting secondary analysis of existing interviews we have maximized the utility of participants' data. 36 The analysis was conducted primarily by the first author, a psychologist who is conducting research on support for parents of children with medical complexity. The author's extensive knowledge of the subject area meant they were well-placed to identify anticipated themes to enrich the analysis, as well as emergent themes from the data. The analysis was overseen by the second author, an experienced social scientist and qualitative researcher who conducted the original interviews and the third author, a paediatrician. This meant that the analysis could be checked firstly against the insights from the original interviewer from 'being there', and secondly against the experiences of a clinician who works with children with medical complexity who confirmed the analysis 'rung true' with the experiences of families she supports. The sample covered a wide range of on-going needs and medical procedures so the findings may transfer to children with other conditions, beyond abdominal surgery which was common to all the children in our sample. 37 The range of ages of the children at the time of interview meant that we captured parents' experiences at different time points, but conversely meant that not all participants could reflect on the long-term impacts.

| CON CLUS IONS
Children with serious clinical conditions of many different kinds have benefitted from advances in surgery and critical care. 38,39 Little is known about the longer term outcomes for these families, and the day-to-day of caring for children with on-going complex medical needs at home. This study highlights the challenges families are facing. The responsibilities placed on parents are substantial. Parents need to be better prepared and supported to take on these roles, whether that be in managing emergencies, performing medical procedures or co-ordinating care. There is scope for some of these responsibilities to be shouldered by the health and care system.
Increased access to properly funded respite care, care packages that parents trust, and dedicated professionals to help parents navigate the complex health-care system could all help reduce the burden.

ACK N OWLED G EM ENTS
We would like to thank the parents who took part in the interviews and The Health Experiences Research group at the Nuffield Department of Primary Care Health Sciences, University of Oxford for collating and storing the data used in this paper.

CO N FLI C T S O F I NTE R E S T
The authors declare that they have no conflicts of interest.

AUTH O R CO NTR I B UTI O N S
BP analysed the data with input from LH and CV. The original interviews were conducted by LH. BP drafted the paper, and all authors commented and contributed to the revisions. All authors read and approved the final version.

E TH I C A L A PPROVA L
Berkshire Ethics Committee, 09/H0505/66. All parents gave informed consent before taking part and consented for their data to be used in publications.

DATA AVA I L A B I L I T Y S TAT E M E N T
This paper is based on the analysis of qualitative interviews.