care, health and development Child: Original Article bs_bs_banner
doi:10.1111/cch.12117
Parents of children with neurogenic bowel dysfunction: their experiences of using transanal irrigation with their child C. Sanders,* L. Bray,† C. Driver‡ and V. Harris§ *Children’s Nursing Research Unit, Alder Hey Children’s Hospital, Liverpool, UK †The Children’s Nursing Research Unit, Edge Hill University, Alder Hey, Liverpool, UK ‡Aberdeen Children’s Hospital, Aberdeen, UK, and §Parent Co-researcher, Scope, Liverpool, UK Accepted for publication 6 October 2013
Abstract
Keywords children, parent experience, transanal irrigation Correspondence: Caroline Sanders, PhD, Alder Hey Children’s Hospital, Children’s Nursing Research Unit, C/O DPS, Alder Hey, Eaton RD, Liverpool L12 2AP, UK E-mail: caroline.sanders@ alderhey.nhs.uk
Background Neurogenic bowel dysfunction in children is a lifelong condition often resulting in the need for active bowel management programmes, such as transanal irrigation. Parents are central in the decision-making process to initiate and carry out treatments until such a time their child becomes independent. Minimal research has focussed on examining parents’ experiences of undertaking transanal irrigation with their child. This study aimed to explore parents’ experiences of learning about and using irrigation with their child and how parents motivated their children to become independent. Methods Semi-structured telephone interviews were conducted with parents with experience of using transanal irrigation with their child. Interviews were undertaken by a parent researcher. Data were analysed using qualitative content analysis. Results Eighteen telephone interviews (16 mothers, 1 father and 1 carer) were conducted. Parents shared how they had negotiated getting started and using transanal irrigation with their child. They discussed a sense of success derived from their confidence in using and mastering irrigation, the process of making decisions to continue or stop using irrigation and how they motivated themselves and their child to continue with the irrigation regime. Challenges included minimizing their child’s distress during the irrigation procedure and how they negotiated and moved towards their child becoming independent. Conclusion Despite the emotional difficulty parents experienced as a result of the invasive nature of transanal irrigation most parents reported an improvement in their child’s faecal continence which positively impacted on the child and family’s lives. The child’s physical ability and emotional readiness to develop independent irrigation skills in the future concerned some parents. The experiences shared by parents in this study has the capacity to inform transanal irrigation nursing and medical care.
Introduction Neurogenic bowel dysfunction occurs when there is damage to the nerve tissue in the rectum or colon resulting in constipation
© 2013 John Wiley & Sons Ltd
and incontinence (Benevento & Sipski 2002). A child can have such dysfunction as a result of birth anomaly such as spina bifida or long segment anorectal malformation (Nisell 2005) or as an acquired injury during childhood such as spinal
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cord injury or following inflammation of the spinal cord for example, transverse myelitis. Having a child who requires daily attention in order to manage their bodily function of elimination can place substantial demands on parents (Wallander & Varni 1998). The continual need during early childhood to complete daily bowel care routines when a child has neurogenic bowel dysfunction can be burdensome and restrictive for parents (Holmbeck et al. 1997) and cause additional stress in the family home (Vermaes et al. 2008).
Background Despite advances in health care the approaches to bowel management in children with neurogenic bowel dysfunction remain challenging (Benevento & Sipski 2002). Management approaches in children can follow a series of stages as described in Fig. 1. Parents are aware and often worry about the social consequence of their child soiling. Therefore, treatment is patient and family directed, determined by their goals, such as their child having no soiling accidents when they start school. Transanal irrigation (TAI) aims to offer a bowel management routine which can empty the rectum of stool at a time convenient for children and their parents. Irrigation can be used with children in the UK from aged three and upwards due to product licensing. Using TAI involves the parent being able to place a tube (rectal catheter) or cone device into their child’s rectum via which they administer an irrigation solution. This is usually performed in the home environment either daily, alternate days or twice a week depending on the child’s needs. A review of the literature indicated that while irrigation can be effective for children the procedure is time consuming and can impact nega-
tively on child, parent and family life (Bray & Sanders 2013). Research examining how parents learn about irrigation as an option for their child as well as how they facilitate their child’s independence with irrigation is limited. This study aimed to better understand parent’s experiences of learning about and using TAI with their child.
Methods Semi-structured qualitative telephone interviews were used to seek previously unexplored perceptions, experiences and the meanings that parents attributed to undertaking and managing TAI with their child. The interviews were conducted over the telephone due to the geographical spread of participants. A parent researcher who had direct experience of irrigation regimes conducted the interviews. The interview was guided by a topic sheet. At the beginning of the interview structured information was collected on the irrigation system used, followed by participants being encouraged to discuss issues of importance to them, with prompts and probing questions being used to explore their experiences. This qualitative phase formed part of a larger project which used a mixed method approach to develop a shared health resource for parents and professionals (FoNS 2012; Sanders & Bray 2013). This paper reports on the qualitative data from this study.
Ethics Approval for the study was gained through the National Research Ethics Service and specific local research Site approvals. All participants were assured that their interviews would be
None surgical, patients can shift between approaches None invasive management approaches • Diet • Lifestyle changes • Toilet routine / positioning • Oral laxatives • Oral stimulants • Alternative therapies
Minimially invasive • Digital stimulation • Suppositories • Small enemas • Biofeedback
Invasive
Nerve stimulation
• Transanal irrigation (prescribed treatment) • Various devises and equipment avialable usinging rectal catheters / rectal cones, pump and hand held devises
• Percutaneous • Sacral • Both involve mild electrical stimulation and are a form of neuromodulation
Antegrade colonic enema / irrigation • Formation of small stoma through which to irrigate bowel, can be performed laprascopic and use a button device to maintain channel opening (Antao et al. 2006)
More complex surgical intervention • Stoma, usually permanent
Figure 1. A proposed staged approach to treatment of children with neurogenic bowel dysfunction: adapted from Emmanuel and colleagues (2013).
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
Transanal irrigation in children
anonymized, they could withdraw from the study at any point without compromise to their child’s care. Pseudonyms are used throughout the results section.
Participants Participants were mothers, fathers or carers using TAI with their child aged 3–16 years with neurogenic bowel dysfunction. Participants were recruited through the clinical research teams via a postal invitation at each of the three study sites. Parents were invited to participate if they had been using irrigation with their child for at least two months. Parents using irrigation for less than 2 months were excluded on the advice of the parents on the research team. Parents who had used irrigation with their child for more than two months but had subsequently stopped within the last nine months were also invited to participate, as it was thought that these parents could provide a valuable perspective on the difficulties and challenges which had led them to stop using irrigation.
Procedure In total, 46 parents/carers were approached to take part. Participants were asked to send the research team their contact details and a completed consent form if they wished to participate. The researcher (CS) contacted all the participants, verified consent and scheduled a date and time for their telephone interview. All interviews were digitally recorded and later transcribed.
Data analysis Data analysis used qualitative content analysis, which is a systematic and objective means of describing and quantifying phenomena (Elo & Kyngas 2008) within a naturalistic paradigm. Content analysis was used to interpret meaning from the content of data in that coding categories were derived directly from the text data (Hsieh & Shannon 2005). Coding was carried out independently by five members of the research team. Data were read repeatedly to achieve immersion and for those analysing the data to create a sense of whole across the interviews (Tesch 1990). Words within the text that captured key thoughts and themes were highlighted (Miles & Huberman 1994). All five members were asked to make notes of their thoughts, impressions and questions at the initial data analysis phase and these were shared with the wider research team. The emerging codes, labels or phrases were grouped into six sub-categories. These were circulated to the research team and the lead researcher sorted these into a higher-order framework
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based on how different themes seemed related and linked. Two main themes emerged during analysis. Discrepancies were discussed and the transcripts reviewed for contextual data to aid the discussion within the team similar to the approach described by Filigno and colleagues (2012).
Results Twenty parents (43%) of the 46 contacted consented to participate in the study. Two parents could not be contacted, resulting in 18 parents being interviewed. The majority of participants were mothers (n = 16) with one father and one grandmother being involved. The age that their children started using irrigation ranged 3–16 years. The children were discussed as having predisposing medical conditions including spina bifida (n = 9), imperforate anus (n = 3) and sacral agenesis (n = 1), cloaca (n = 1) or parents did not report on an underlying condition (n = 4). Four (22%) of the parents had stopped using irrigation, the remaining 14 (78%) were still using irrigation successfully with their child at the time of interview. All the families involved were using the Peristeen© irrigation system. The type of irrigation fluid used was body warm tap water (n = 11, 78%) or body warm saline solution (n = 3, 22%) made by parents, one level teaspoon of table salt per 500 ml tap water as described by Christensen and Krogh (2010). Of the 14 parents using irrigation, only two reported their children as able to manage the regime independently (a 9-yearold girl and a 14-year-old boy). Three parents reported that their child helped with aspects of the irrigation (two girls aged 7 and 12 years and a boy aged 13 years). Two parents felt their child would never achieve independence due to their child’s severe physical and cognitive disability. Five parents reported that their children were not physically ready to start developing independent skills required to perform irrigation, the ages of these children ranged 3–14 years. Two children (aged 6 years) were reported as not emotionally ready to start carrying out irrigation independently as they remained upset at each irrigation session. Parents began their accounts by describing their experiences before using irrigation. All parents reported using oral laxatives with their children when they were pre-school with no success and side effects of increasing faecal incontinence and abdominal cramps. Their early experiences had not been positive and they had often found little advice available from general and specialist professionals when oral treatments failed. The parents reported hearing about TAI from several sources including their hospital doctor, a nurse in the hospital or community, other parents via social media sites or from support groups. When
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
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learning about irrigation most of the parents (n = 17, 94%) recalled having access to multi-media tools and literature. Two key themes were identified from the parent interviews both of which impact on clinical practice.
Theme one: parents’ investment in their child’s bowel management Parents’ early experiences of struggling to find the ‘right’ treatment for their child’s faecal incontinence were emotionally draining. Their journey to find a reliable, timely and effective bowel management regime which enabled their child to be continent and free from cramping pain had often involved trialling multiple different interventions. They were able to give a clear rationale for determining the failure for such approaches as well as express their feelings of being ignored by professionals: It was a case of every few weeks we’d say [trying something else but] it wasn’t working, she started being sick, [her tummy] was swollen, it was horrendous, it was absolutely horrible. [Brenda] When oral treatments did work the unpredictable nature of the results were problematic, with parents worrying about their child’s ability to independently manage ‘stool accidents’ as faeces which had previously been hard and difficult to pass became liquid and difficult to contain: They worked extremely well but it was a nightmare, just an absolute nightmare, uncontrollable, liquid it was horrific beyond anything, it was just dreadful. [Carol] Each new medication offered hope for improvement while repeated failures had the potential to impact on parent’s confidence to trial new approaches. Therefore, confidence in the options being offered by professionals was sometimes low. A few parents ‘discovered’ irrigation was an option from peer networks or voluntary organization web sites. Peer support systems had the capacity to impact on parent thinking and build their confidence to ask their child’s doctor if they could trial irrigation. Two parents heard about irrigation from a doctor, with one recalling her initial feelings about the possibility of using irrigation with her young child: When you are actually sitting in the consultant’s room, talking about it, it sounds pretty horrific, but seeing it and watching [with the nurse] how straight-forward it was gave us a bit of confidence to go and give it a try. [Helen] If doctors and nurses were judged as having knowledge and experience of teaching others to use TAI then parents appeared
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
to be more confident to try this approach. Having training about how to use irrigation equipment and subsequently feel secure in undertaking the procedure at home, without a nurse, was for some parents a daunting prospect. Although some parents were offered the opportunity to ‘come into [hospital] and stay a few days’ this was not perceived as an ‘inviting prospect’ since it was a significantly different environment from home. Four parents had been taught to use irrigation at home, while at least half of those taught in hospital (n = 7) believed that ‘If the nurse had actually done one with us [at home] I probably would have felt less worried about some of the obstacles’ [Abbie]. Despite the training venue most of the parents spoke about the positive training and support they received from nurses: ‘we got a lot of support from the nurses, a lot of training which gave us the confidence to do it’ [Helen]. A couple of parents reported being proud of their new skills, how they negotiated undertaking the irrigation with their child and the direct impact it had on their child no longer being incontinent of stool. As their children went from pre-school to school children the parents wanted them to achieve a reliable bowel routine and continence of stool as they worried about the social difficulty of their child ‘soiling in the classroom’ or ‘still wearing a nappy’ in school. TAI was believed to be helpful with some parents reporting fewer visits to school in order to change their child after an episode of soiling. Parents also spoke about how achieving a more predictable bowel emptying routine resulting in them being more confident about their child being in school. Several parents reported that their child talked positively about being clean: ‘It’s quite a basic thing, he feels much better about it (not soiling)’. Several of the mothers spoke about how not soiling had allowed their daughter’s to wear ‘normal’ knickers like their school friends and as a result of no longer needing to wear pads some children were able to engage in new activities, such as swimming. Many different factors influenced how parents made decisions about continuing to use irrigation, including coaxing their child to continue even if they were unhappy using irrigation. Parents believed that being continent of stool and not wearing a nappy meant that children needed less help with their toilet routine, which impacted positively on their developing independence in line with their peers. However parental emotional resilience was necessary in these circumstances as one parent described very clearly: We had to make a decision to trial it and keep going with it even when she’s not happy with it, emotionally it’s quite difficult because obviously it’s personal, [so] building up to doing it was quite difficult. [Fiona]
Transanal irrigation in children
For some parents the decision to continue with irrigation placed a strain on their relationship with their partner: Irrigation became, even between my husband and I, a very, very, big thing. [We had to decide if] we could carry on. [Greta] The physical act of holding their child to undertake irrigation when their child was distressed was overwhelming for some parents: ‘It, really upset me, I couldn’t do it [we would both be] crying all the time’ [Katie] and ‘she would cry saying ‘it hurts, it hurts, stop, stop, it hurts’. It felt like it was abuse; it upset me that much we stopped’ [Diane]. Both mothers stopped using irrigation despite their daughters (aged 5 and aged 6) being continent.
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relief in their constipation that resulted from using irrigation but worried about the future, as their children were described as never likely to be independent. Dependence was problematic: If you are going to use it [irrigation] and never be independent with it, it’s what do you do about other people doing it because it’s not simple? It’s the bureaucracy of getting other people to do it. He is going to respite for a week so I’ve persuaded, bless them, my district nurses to go up and do it out of their area. Well honestly I can’t tell you how hard that’s been to organize and it’s only due to their kindness that that’s happened. [Carol] In these cases it was more difficult to understand what the future could be like for young people who would always be dependent.
Theme two: supporting their child’s independence Most parents were motivated towards their child becoming independent in the future but many of the parents described feeling ‘tied’ to undertaking their child’s irrigation: It’s stressful when you know you are the only person who can do it. Like I’m her lifeline and if something goes wrong then it can be quite dangerous if only one person can do it. [Fiona] Trying to balance dependency and independence by fostering a sense of privacy for their child around toilet routine was also challenge for some parents. In order to achieve a degree of harmony between their child being clean and enjoying their childhood within the context of a busy social family life parents described regularly re-evaluating how effectively irrigation was working against the impact it was having on their child and them. While two parents, one mother and one father acknowledged that they should be encouraging their adolescent to manage irrigation independently they believed their help resulted in the procedure being completed quickly which left their teenagers with more free time for other activities. They were also more confident in the knowledge that irrigation had been done correctly. On reflection this mother wondered if routine played a part in her son ‘not managing it’ himself ‘he is quite happy for me to do it at the moment because I’ve always done it for him.’ She continued to talk about encouraging him to be independent in the next few months but her worry was his ability to insert the catheter. This was also reported as a factor by three other parents’ who believed this could negatively influence their child’s development of independence. Some children (n = 2) using irrigation had severe disabilities with very limited movement and little language. The mothers’ of these children were delighted with their child’s continence and
Discussion This study aimed to understand parents’ experiences of learning about and using TAI with their child in order to manage their child’s faecal incontinence. Professional’s knowledge about TAI and the environment in which parents were taught how to use it and their need for ongoing professional support had the capacity to influence parents’ confidence and motivation, which is similar to evidence from adult studies (Emmanuel et al. 2013). Some parents believed that starting TAI early could be beneficial since younger children could have the opportunity to start school wearing underwear similar to their peers and attain a level of faecal continence in line with their age. It was also discussed that growing up using TAI, could make the procedure an accepted part of life. Yet the negotiation, coaxing, bargaining and at times holding were described by parents as emotionally difficult. Some parents had only limited success with irrigation due to their child’s distress, an experience which has been reported elsewhere (Ausili et al. 2010). However, parents were driven to continue using irrigation since they wanted their child to be faecally clean and where possible continent. In trying to conceptualize the efforts these parents made, we were able to identify the actions, emotional investment and beliefs held by many parents. Parents are usually the main care givers when children have physical needs which require bowel management programmes (Mitchell et al. 2004; Ojmyr-Joelsson et al. 2009), so the importance of them being confident in delivering this care cannot be underestimated. Once parents have acquired technical and clinical skills they later have to share their knowledge with their child in order to promote self-management. Parents worried about their child’s future independence and parents needed to develop trust in their child’s ability to self-manage irrigation.
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
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They recognized that in handing over the irrigation procedure to their child they risked episodes of unpredictable incontinence and the recurrence of constipation. Once continence had been achieved parents were reluctant for their child to return to experiencing incontinence. The many challenges associated with the transfer of treatment responsibility also exists in other populations with chronic conditions (Filigno et al. 2012) and parents experience of irrigation is in keeping with this. All of the children in this study were using the same irrigation system (Peristeen©) as irrigation devices suitable for longer term use with children are limited. The principles of TAI are similar with other irrigation systems. Further research in this area should focus on exploring the child and young person’s perceptions of using irrigation in order to provide a useful insight into how children and young people feel about such interventions.
Key messages • Transanal irrigation can be well tolerated by children. • Parents are motivated and will invest time and energy into using transanal irrigation if it can result in their child achieving faecal continence. • Parents need support from professionals when learning about transanal irrigation as well as ongoing support as it can be a very emotionally draining and difficult procedure to administer. • It can be difficult for parents to relinquish the responsibility for the irrigation procedure as well as tricky for the young people to manage independently.
Funding The study was funded by a grant from the Foundation of Nursing Studies.
Acknowledgements The authors would like to thank all the parents who participated in the study.
References Antao, B., Ng, J. & Roberts, J. (2006) Laparoscopic antegrade continence enema using a two-port technique. Journal of Laparoendoscopic & Advanced Surgical Techniques. Part A, 16, 168–173.
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
Ausili, E., Focarelli, B., Tabacco, F., Murolo, D., Sigismondi, M., Gasbarrini, A. & Rendeli, C. (2010) Transanal irrigation in myelomeningocele children: an alternative. Safe and valid approach for neurogenic constipation. Spinal Cord, 48, 560–565. Benevento, B. T. & Sipski, M. L. (2002) Neurogenic bladder, neurogenic bowel, and sexual dysfunction in people with spinal cord injury. Physical Therapy, 82, 601–612. Bray, L. & Sanders, C. (2013) An evidenced based review of rectal irrigation in children and young people with neurogenic bowel. Spinal Cord, 51, 88–93. Christensen, P. & Krogh, K. (2010) Transanal irrigation for disordered defecation: a systematic review. Scandinavian Journal of Gastroenterology, 45, 517–527. Elo, S. & Kyngas, H. (2008) The qualitative content analysis process. Journal of Advanced Nursing, 62, 107–115. Emmanuel, A., Krogh, K., Bazzocchi, G., Leroi, A. M., Bremers, A., Leder, D., van Kuppevelt, D., Mosiello, G., Vogel, M., Perrouin-Verbe, B., Cossgrave, M. & Christensen, P. (2013) Consensus review of best practice of transanal irrigation in adults. Spinal Cord, 1–7 advance online publication, 20 August 2013; doi: 10.1038/sc.2013.86. http://my-bowel.co.uk/pdf/ Consensus%20TAI.pdf. Filigno, S. S., Brannon, E. E., Chamberlin, A., Sullivan, S. S., Barnett, K. A. & Powers, S. W. (2012) Qualitative analysis of parent experiences with achieving cystic fibrosis nutrition recommendation. Journal of Cystic Fibrosis, 11, 125–130. FoNS (2012) An action research project exploring the utility of rectal irrigation in children from a professional and parent perspective (study report) [on line]. Available at: http:// www.fons.org/library/report-details.aspx?nstid=24405 (accessed from 27 February 2013). Holmbeck, G. N., et al. (1997) Maternal, paternal, and marital functioning in families of preadolescents with spina bifida. Journal of Pediatric Psychology, 22, 167–181. Hsieh, H. & Shannon, S. E. (2005) Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. Miles, M. B. & Huberman, A. M. (1994) Qualitative content analysis: a guide to paths not taken. Qualitative Health Research, 3, 112–121. Mitchell, L. E., et al. (2004) Spina bifida. Lancet, 364, 1885–1895. Nisell, M. (2005) Psychosocial consequences of high and intermediate imperforate anus. Published Thesis Karlinska Institute. Karolinska University Press, Sweden. Ojmyr-Joelsson, M., Nisell, M., Frencker, B., Rydelius, P. & Christensson, K. (2009) A gender perspective on the extent to which mothers and fathers each take responsibility for care of a child with high and intermediate imperforate anus. Journal of Pediatric Nursing, 24, 207–215. Sanders, C. & Bray, L. (2013) Examining professionals’ and parents’ views of using transanal irrigation with children: understanding their experiences to develop a shared health resource for education and practice. Journal of Child Health Care. Available at:
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http://chc.sagepub.com/content/early/2013/02/14/ 1367493512474866.full.pdf (accessed from 3 March 2013). Tesch, R. (1990) Qualitative Research. Analysis Types and Software Tools. Falmer, Bristol, PA, USA. Vermaes, I. P., Janssens, J. M., Mullaart, R. A., Vinck, A. & Gerris, J. R. (2008) Parents’ personality and parenting stress in families of
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children with spina bifida. Child: Care, Health and Development, 34, 665–674. Wallander, J. L. & Varni, J. W. (1998) Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 30, 29–46.
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
doi:10.1111/cch.12117
Parents of children with neurogenic bowel dysfunction: their experiences of using transanal irrigation with their child C. Sanders,* L. Bray,† C. Driver‡ and V. Harris§ *Children’s Nursing Research Unit, Alder Hey Children’s Hospital, Liverpool, UK †The Children’s Nursing Research Unit, Edge Hill University, Alder Hey, Liverpool, UK ‡Aberdeen Children’s Hospital, Aberdeen, UK, and §Parent Co-researcher, Scope, Liverpool, UK Accepted for publication 6 October 2013
Abstract
Keywords children, parent experience, transanal irrigation Correspondence: Caroline Sanders, PhD, Alder Hey Children’s Hospital, Children’s Nursing Research Unit, C/O DPS, Alder Hey, Eaton RD, Liverpool L12 2AP, UK E-mail: caroline.sanders@ alderhey.nhs.uk
Background Neurogenic bowel dysfunction in children is a lifelong condition often resulting in the need for active bowel management programmes, such as transanal irrigation. Parents are central in the decision-making process to initiate and carry out treatments until such a time their child becomes independent. Minimal research has focussed on examining parents’ experiences of undertaking transanal irrigation with their child. This study aimed to explore parents’ experiences of learning about and using irrigation with their child and how parents motivated their children to become independent. Methods Semi-structured telephone interviews were conducted with parents with experience of using transanal irrigation with their child. Interviews were undertaken by a parent researcher. Data were analysed using qualitative content analysis. Results Eighteen telephone interviews (16 mothers, 1 father and 1 carer) were conducted. Parents shared how they had negotiated getting started and using transanal irrigation with their child. They discussed a sense of success derived from their confidence in using and mastering irrigation, the process of making decisions to continue or stop using irrigation and how they motivated themselves and their child to continue with the irrigation regime. Challenges included minimizing their child’s distress during the irrigation procedure and how they negotiated and moved towards their child becoming independent. Conclusion Despite the emotional difficulty parents experienced as a result of the invasive nature of transanal irrigation most parents reported an improvement in their child’s faecal continence which positively impacted on the child and family’s lives. The child’s physical ability and emotional readiness to develop independent irrigation skills in the future concerned some parents. The experiences shared by parents in this study has the capacity to inform transanal irrigation nursing and medical care.
Introduction Neurogenic bowel dysfunction occurs when there is damage to the nerve tissue in the rectum or colon resulting in constipation
© 2013 John Wiley & Sons Ltd
and incontinence (Benevento & Sipski 2002). A child can have such dysfunction as a result of birth anomaly such as spina bifida or long segment anorectal malformation (Nisell 2005) or as an acquired injury during childhood such as spinal
863
864
C. Sanders et al.
cord injury or following inflammation of the spinal cord for example, transverse myelitis. Having a child who requires daily attention in order to manage their bodily function of elimination can place substantial demands on parents (Wallander & Varni 1998). The continual need during early childhood to complete daily bowel care routines when a child has neurogenic bowel dysfunction can be burdensome and restrictive for parents (Holmbeck et al. 1997) and cause additional stress in the family home (Vermaes et al. 2008).
Background Despite advances in health care the approaches to bowel management in children with neurogenic bowel dysfunction remain challenging (Benevento & Sipski 2002). Management approaches in children can follow a series of stages as described in Fig. 1. Parents are aware and often worry about the social consequence of their child soiling. Therefore, treatment is patient and family directed, determined by their goals, such as their child having no soiling accidents when they start school. Transanal irrigation (TAI) aims to offer a bowel management routine which can empty the rectum of stool at a time convenient for children and their parents. Irrigation can be used with children in the UK from aged three and upwards due to product licensing. Using TAI involves the parent being able to place a tube (rectal catheter) or cone device into their child’s rectum via which they administer an irrigation solution. This is usually performed in the home environment either daily, alternate days or twice a week depending on the child’s needs. A review of the literature indicated that while irrigation can be effective for children the procedure is time consuming and can impact nega-
tively on child, parent and family life (Bray & Sanders 2013). Research examining how parents learn about irrigation as an option for their child as well as how they facilitate their child’s independence with irrigation is limited. This study aimed to better understand parent’s experiences of learning about and using TAI with their child.
Methods Semi-structured qualitative telephone interviews were used to seek previously unexplored perceptions, experiences and the meanings that parents attributed to undertaking and managing TAI with their child. The interviews were conducted over the telephone due to the geographical spread of participants. A parent researcher who had direct experience of irrigation regimes conducted the interviews. The interview was guided by a topic sheet. At the beginning of the interview structured information was collected on the irrigation system used, followed by participants being encouraged to discuss issues of importance to them, with prompts and probing questions being used to explore their experiences. This qualitative phase formed part of a larger project which used a mixed method approach to develop a shared health resource for parents and professionals (FoNS 2012; Sanders & Bray 2013). This paper reports on the qualitative data from this study.
Ethics Approval for the study was gained through the National Research Ethics Service and specific local research Site approvals. All participants were assured that their interviews would be
None surgical, patients can shift between approaches None invasive management approaches • Diet • Lifestyle changes • Toilet routine / positioning • Oral laxatives • Oral stimulants • Alternative therapies
Minimially invasive • Digital stimulation • Suppositories • Small enemas • Biofeedback
Invasive
Nerve stimulation
• Transanal irrigation (prescribed treatment) • Various devises and equipment avialable usinging rectal catheters / rectal cones, pump and hand held devises
• Percutaneous • Sacral • Both involve mild electrical stimulation and are a form of neuromodulation
Antegrade colonic enema / irrigation • Formation of small stoma through which to irrigate bowel, can be performed laprascopic and use a button device to maintain channel opening (Antao et al. 2006)
More complex surgical intervention • Stoma, usually permanent
Figure 1. A proposed staged approach to treatment of children with neurogenic bowel dysfunction: adapted from Emmanuel and colleagues (2013).
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 6, 863–869
Transanal irrigation in children
anonymized, they could withdraw from the study at any point without compromise to their child’s care. Pseudonyms are used throughout the results section.
Participants Participants were mothers, fathers or carers using TAI with their child aged 3–16 years with neurogenic bowel dysfunction. Participants were recruited through the clinical research teams via a postal invitation at each of the three study sites. Parents were invited to participate if they had been using irrigation with their child for at least two months. Parents using irrigation for less than 2 months were excluded on the advice of the parents on the research team. Parents who had used irrigation with their child for more than two months but had subsequently stopped within the last nine months were also invited to participate, as it was thought that these parents could provide a valuable perspective on the difficulties and challenges which had led them to stop using irrigation.
Procedure In total, 46 parents/carers were approached to take part. Participants were asked to send the research team their contact details and a completed consent form if they wished to participate. The researcher (CS) contacted all the participants, verified consent and scheduled a date and time for their telephone interview. All interviews were digitally recorded and later transcribed.
Data analysis Data analysis used qualitative content analysis, which is a systematic and objective means of describing and quantifying phenomena (Elo & Kyngas 2008) within a naturalistic paradigm. Content analysis was used to interpret meaning from the content of data in that coding categories were derived directly from the text data (Hsieh & Shannon 2005). Coding was carried out independently by five members of the research team. Data were read repeatedly to achieve immersion and for those analysing the data to create a sense of whole across the interviews (Tesch 1990). Words within the text that captured key thoughts and themes were highlighted (Miles & Huberman 1994). All five members were asked to make notes of their thoughts, impressions and questions at the initial data analysis phase and these were shared with the wider research team. The emerging codes, labels or phrases were grouped into six sub-categories. These were circulated to the research team and the lead researcher sorted these into a higher-order framework
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based on how different themes seemed related and linked. Two main themes emerged during analysis. Discrepancies were discussed and the transcripts reviewed for contextual data to aid the discussion within the team similar to the approach described by Filigno and colleagues (2012).
Results Twenty parents (43%) of the 46 contacted consented to participate in the study. Two parents could not be contacted, resulting in 18 parents being interviewed. The majority of participants were mothers (n = 16) with one father and one grandmother being involved. The age that their children started using irrigation ranged 3–16 years. The children were discussed as having predisposing medical conditions including spina bifida (n = 9), imperforate anus (n = 3) and sacral agenesis (n = 1), cloaca (n = 1) or parents did not report on an underlying condition (n = 4). Four (22%) of the parents had stopped using irrigation, the remaining 14 (78%) were still using irrigation successfully with their child at the time of interview. All the families involved were using the Peristeen© irrigation system. The type of irrigation fluid used was body warm tap water (n = 11, 78%) or body warm saline solution (n = 3, 22%) made by parents, one level teaspoon of table salt per 500 ml tap water as described by Christensen and Krogh (2010). Of the 14 parents using irrigation, only two reported their children as able to manage the regime independently (a 9-yearold girl and a 14-year-old boy). Three parents reported that their child helped with aspects of the irrigation (two girls aged 7 and 12 years and a boy aged 13 years). Two parents felt their child would never achieve independence due to their child’s severe physical and cognitive disability. Five parents reported that their children were not physically ready to start developing independent skills required to perform irrigation, the ages of these children ranged 3–14 years. Two children (aged 6 years) were reported as not emotionally ready to start carrying out irrigation independently as they remained upset at each irrigation session. Parents began their accounts by describing their experiences before using irrigation. All parents reported using oral laxatives with their children when they were pre-school with no success and side effects of increasing faecal incontinence and abdominal cramps. Their early experiences had not been positive and they had often found little advice available from general and specialist professionals when oral treatments failed. The parents reported hearing about TAI from several sources including their hospital doctor, a nurse in the hospital or community, other parents via social media sites or from support groups. When
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learning about irrigation most of the parents (n = 17, 94%) recalled having access to multi-media tools and literature. Two key themes were identified from the parent interviews both of which impact on clinical practice.
Theme one: parents’ investment in their child’s bowel management Parents’ early experiences of struggling to find the ‘right’ treatment for their child’s faecal incontinence were emotionally draining. Their journey to find a reliable, timely and effective bowel management regime which enabled their child to be continent and free from cramping pain had often involved trialling multiple different interventions. They were able to give a clear rationale for determining the failure for such approaches as well as express their feelings of being ignored by professionals: It was a case of every few weeks we’d say [trying something else but] it wasn’t working, she started being sick, [her tummy] was swollen, it was horrendous, it was absolutely horrible. [Brenda] When oral treatments did work the unpredictable nature of the results were problematic, with parents worrying about their child’s ability to independently manage ‘stool accidents’ as faeces which had previously been hard and difficult to pass became liquid and difficult to contain: They worked extremely well but it was a nightmare, just an absolute nightmare, uncontrollable, liquid it was horrific beyond anything, it was just dreadful. [Carol] Each new medication offered hope for improvement while repeated failures had the potential to impact on parent’s confidence to trial new approaches. Therefore, confidence in the options being offered by professionals was sometimes low. A few parents ‘discovered’ irrigation was an option from peer networks or voluntary organization web sites. Peer support systems had the capacity to impact on parent thinking and build their confidence to ask their child’s doctor if they could trial irrigation. Two parents heard about irrigation from a doctor, with one recalling her initial feelings about the possibility of using irrigation with her young child: When you are actually sitting in the consultant’s room, talking about it, it sounds pretty horrific, but seeing it and watching [with the nurse] how straight-forward it was gave us a bit of confidence to go and give it a try. [Helen] If doctors and nurses were judged as having knowledge and experience of teaching others to use TAI then parents appeared
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to be more confident to try this approach. Having training about how to use irrigation equipment and subsequently feel secure in undertaking the procedure at home, without a nurse, was for some parents a daunting prospect. Although some parents were offered the opportunity to ‘come into [hospital] and stay a few days’ this was not perceived as an ‘inviting prospect’ since it was a significantly different environment from home. Four parents had been taught to use irrigation at home, while at least half of those taught in hospital (n = 7) believed that ‘If the nurse had actually done one with us [at home] I probably would have felt less worried about some of the obstacles’ [Abbie]. Despite the training venue most of the parents spoke about the positive training and support they received from nurses: ‘we got a lot of support from the nurses, a lot of training which gave us the confidence to do it’ [Helen]. A couple of parents reported being proud of their new skills, how they negotiated undertaking the irrigation with their child and the direct impact it had on their child no longer being incontinent of stool. As their children went from pre-school to school children the parents wanted them to achieve a reliable bowel routine and continence of stool as they worried about the social difficulty of their child ‘soiling in the classroom’ or ‘still wearing a nappy’ in school. TAI was believed to be helpful with some parents reporting fewer visits to school in order to change their child after an episode of soiling. Parents also spoke about how achieving a more predictable bowel emptying routine resulting in them being more confident about their child being in school. Several parents reported that their child talked positively about being clean: ‘It’s quite a basic thing, he feels much better about it (not soiling)’. Several of the mothers spoke about how not soiling had allowed their daughter’s to wear ‘normal’ knickers like their school friends and as a result of no longer needing to wear pads some children were able to engage in new activities, such as swimming. Many different factors influenced how parents made decisions about continuing to use irrigation, including coaxing their child to continue even if they were unhappy using irrigation. Parents believed that being continent of stool and not wearing a nappy meant that children needed less help with their toilet routine, which impacted positively on their developing independence in line with their peers. However parental emotional resilience was necessary in these circumstances as one parent described very clearly: We had to make a decision to trial it and keep going with it even when she’s not happy with it, emotionally it’s quite difficult because obviously it’s personal, [so] building up to doing it was quite difficult. [Fiona]
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For some parents the decision to continue with irrigation placed a strain on their relationship with their partner: Irrigation became, even between my husband and I, a very, very, big thing. [We had to decide if] we could carry on. [Greta] The physical act of holding their child to undertake irrigation when their child was distressed was overwhelming for some parents: ‘It, really upset me, I couldn’t do it [we would both be] crying all the time’ [Katie] and ‘she would cry saying ‘it hurts, it hurts, stop, stop, it hurts’. It felt like it was abuse; it upset me that much we stopped’ [Diane]. Both mothers stopped using irrigation despite their daughters (aged 5 and aged 6) being continent.
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relief in their constipation that resulted from using irrigation but worried about the future, as their children were described as never likely to be independent. Dependence was problematic: If you are going to use it [irrigation] and never be independent with it, it’s what do you do about other people doing it because it’s not simple? It’s the bureaucracy of getting other people to do it. He is going to respite for a week so I’ve persuaded, bless them, my district nurses to go up and do it out of their area. Well honestly I can’t tell you how hard that’s been to organize and it’s only due to their kindness that that’s happened. [Carol] In these cases it was more difficult to understand what the future could be like for young people who would always be dependent.
Theme two: supporting their child’s independence Most parents were motivated towards their child becoming independent in the future but many of the parents described feeling ‘tied’ to undertaking their child’s irrigation: It’s stressful when you know you are the only person who can do it. Like I’m her lifeline and if something goes wrong then it can be quite dangerous if only one person can do it. [Fiona] Trying to balance dependency and independence by fostering a sense of privacy for their child around toilet routine was also challenge for some parents. In order to achieve a degree of harmony between their child being clean and enjoying their childhood within the context of a busy social family life parents described regularly re-evaluating how effectively irrigation was working against the impact it was having on their child and them. While two parents, one mother and one father acknowledged that they should be encouraging their adolescent to manage irrigation independently they believed their help resulted in the procedure being completed quickly which left their teenagers with more free time for other activities. They were also more confident in the knowledge that irrigation had been done correctly. On reflection this mother wondered if routine played a part in her son ‘not managing it’ himself ‘he is quite happy for me to do it at the moment because I’ve always done it for him.’ She continued to talk about encouraging him to be independent in the next few months but her worry was his ability to insert the catheter. This was also reported as a factor by three other parents’ who believed this could negatively influence their child’s development of independence. Some children (n = 2) using irrigation had severe disabilities with very limited movement and little language. The mothers’ of these children were delighted with their child’s continence and
Discussion This study aimed to understand parents’ experiences of learning about and using TAI with their child in order to manage their child’s faecal incontinence. Professional’s knowledge about TAI and the environment in which parents were taught how to use it and their need for ongoing professional support had the capacity to influence parents’ confidence and motivation, which is similar to evidence from adult studies (Emmanuel et al. 2013). Some parents believed that starting TAI early could be beneficial since younger children could have the opportunity to start school wearing underwear similar to their peers and attain a level of faecal continence in line with their age. It was also discussed that growing up using TAI, could make the procedure an accepted part of life. Yet the negotiation, coaxing, bargaining and at times holding were described by parents as emotionally difficult. Some parents had only limited success with irrigation due to their child’s distress, an experience which has been reported elsewhere (Ausili et al. 2010). However, parents were driven to continue using irrigation since they wanted their child to be faecally clean and where possible continent. In trying to conceptualize the efforts these parents made, we were able to identify the actions, emotional investment and beliefs held by many parents. Parents are usually the main care givers when children have physical needs which require bowel management programmes (Mitchell et al. 2004; Ojmyr-Joelsson et al. 2009), so the importance of them being confident in delivering this care cannot be underestimated. Once parents have acquired technical and clinical skills they later have to share their knowledge with their child in order to promote self-management. Parents worried about their child’s future independence and parents needed to develop trust in their child’s ability to self-manage irrigation.
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They recognized that in handing over the irrigation procedure to their child they risked episodes of unpredictable incontinence and the recurrence of constipation. Once continence had been achieved parents were reluctant for their child to return to experiencing incontinence. The many challenges associated with the transfer of treatment responsibility also exists in other populations with chronic conditions (Filigno et al. 2012) and parents experience of irrigation is in keeping with this. All of the children in this study were using the same irrigation system (Peristeen©) as irrigation devices suitable for longer term use with children are limited. The principles of TAI are similar with other irrigation systems. Further research in this area should focus on exploring the child and young person’s perceptions of using irrigation in order to provide a useful insight into how children and young people feel about such interventions.
Key messages • Transanal irrigation can be well tolerated by children. • Parents are motivated and will invest time and energy into using transanal irrigation if it can result in their child achieving faecal continence. • Parents need support from professionals when learning about transanal irrigation as well as ongoing support as it can be a very emotionally draining and difficult procedure to administer. • It can be difficult for parents to relinquish the responsibility for the irrigation procedure as well as tricky for the young people to manage independently.
Funding The study was funded by a grant from the Foundation of Nursing Studies.
Acknowledgements The authors would like to thank all the parents who participated in the study.
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