Mothers' experiences of giving medicines to children with severe and profound intellectual disabilities—The impact on time

Abstract Background Chronic health conditions experienced by children with severe and profound intellectual disabilities are accompanied by numerous challenges because of the prolonged period over which children take medication and the large number of drugs they take. Mothers experience many challenges in giving medicines, from difficulties in physical administration to manipulation of medication, covert administration and alternative formulations. The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. Methods A hermeneutic phenomenological approach was used. Semistructured face‐to‐face interviews and participant diaries were adopted for data collection, resulting in 28 interviews undertaken and 7 diaries completed with mothers of children with severe and profound intellectual disabilities. Van Manen's method for thematic analysis was used for data analysis. Results The concept of time and the impact of giving medicines were apparent, mothers being ‘always on call’ and the constant full‐time pace of their caring role evident. There was little spontaneity in their lives, dampened by the routine of giving medicines and their caregiving role. The necessity to be prepared and organized was highlighted as important in ensuring children got their medications on time and safely. Conclusions This study provides insight into the phenomenon of mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. It has enabled exploration and familiarity with the lifeworld of mothers and offers meaning on the phenomena of giving medicines. It was concluded that this experience is a relentless and challenging one, yet appears invisible as an element of care in professional discourse. Through addressing the gap in understanding and exploring the meaning of this phenomenon, it may be useful in developing care for mothers and children with severe and profound intellectual disabilities.


| INTRODUCTION
The rate of newborns and children with intellectual disabilities who have life-limiting conditions and complex physical healthcare needs has increased significantly (D'Amore et al., 2011;Health Service Executive [HSE], 2018;Milligan, 2010), with approximately 1106 children with a severe or profound intellectual disability in Ireland (Hourigan et al., 2018). This growth is a result of increased life expectancy, ongoing developments in healthcare knowledge, drugs, advanced medical care, technology, parental efforts and availability of varied facilities for education and living (Brenner et al., 2018(Brenner et al., , 2020HSE, 2009;McCarron et al., 2011;McConkey et al., 2007;Nakken & Vlaskamp, 2007;Nicholl et al., 2013;Simkiss, 2011). Many of these children have rare syndromes and multiple and complex needs and require high levels of assistance and support (Eddy, 2013;Gates & Mafuba, 2014). Consequently, many children are becoming increasingly dependent on equipment or technological devices to sustain their life or optimize health involving a myriad of equipment, technology and medications, managed by parents at home (Brenner et al., 2018(Brenner et al., , 2020Doyle, 2020a;Toly et al., 2012).
Chronic health conditions experienced by children with severe and profound intellectual disabilities are accompanied by numerous challenges because of the prolonged period over which children take medication and sometimes the large number of drugs they take (Kalyango et al., 2012). Children with complex needs receive 5 times the number of medications than typical children (Fiks et al., 2012), and this can include a variety of medications: protein pump inhibitors for gastro-oesophageal reflux, prokinetic agents for dysmotility, anticonstipation agents, bronchodilators, anti-epileptics, spasmolytics, sleep medications, and behaviour medications such as stimulants, antipsychotics or anxiolytics (Hogg, 1992;Kapell et al., 1998;Zijlstra & Vlaskamp, 2005). Mothers of children with severe and profound intellectual disabilities experience many challenges in giving medicines: difficulties in physical administration, manipulation of medication, covert administration and alternative formulations (Doyle, 2020a).
Although longer life expectancy and the advent of improved home-based care is a positive development for children and their families, it creates specific demands on the whole family. When delivering home-based care, parents repeatedly take on the challenge of managing their child's care hour to hour, often undertaking healthcare interventions such as medication giving and assessing clinical status (Doyle, 2020a(Doyle, , 2020bToly et al., 2012). The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. Objectives included identifying the range of activities mothers giving medicines undertake and any other pertinent issues.

| METHODS
The study adopted a hermeneutic phenomenological approach using multiple face-to-face interviews and participant diaries for data collection. Thematic analysis was guided by the work of van Manen (1990).
The study was ethically approved by both the University and service providers through completion of an ethical application and review by an ethics committee.

| Sample and recruitment
Purposive sampling was used to identify potential participants to include mothers of children with severe and profound intellectual disabilities who experienced the phenomenon of giving medicines. As mothers are more likely to be the direct caregiver, fathers were not invited to partake in this study as mothers were deemed more likely to have experience of the phenomena. Inclusion criteria required the child they were referring to was aged, between 2 and 18 years of age who needed medication administered daily. The sample was accessed through six service providers who deliver services to children with severe and profound intellectual disabilities in the Republic of Ireland.
Recruitment began following receipt of ethical approval. Each service appointed a gatekeeper who distributed information packs to potential participants who fulfilled the inclusion criteria. A total of 46 information packs were distributed, generating 17 responses with final recruitment of 15 participants.

| Procedure
Multiple data sources can be used in hermeneutic phenomenology, and in this study, face-to-face interviews and participant diaries were adopted over a 17-month period. Any participant who expressed an interest in the study was contacted by phone to discuss what was required of them before agreeing to participate. Informed consent was received by the researcher prior to the audio recorded, unstructured, first face-to-face interviews. All participants were invited to take part in further interviews. Some participants agreed to be

Key messages
• Health professionals need to develop an understanding of the task of giving medicines and the associated time required to manage these medicines on a daily basis, appreciating the challenges experienced by mothers.
• Health professionals such as the general practitioner, pharmacist and hospital are key in providing supportive elements to mothers' daily role.
• Mothers need to be able to get a break from the task of giving medicines achievable through adequate in-home and out-of-home respite care.
• Formal education and training need to be developed to encompass all elements related to giving medicines, in turn empowering mothers to be confident and competent in this task.
interviewed second and third times, using a semistructured approach allowing for in-depth exploration of the phenomenon. This permitted an in-depth review of what was previously said and further clarification on key issues. As an adjunct to interviewing, all participants were also asked to keep an account of happenings in relation to giving medicines in a diary given to them at first interview, complementing the interview findings. The diary allowed for collection of data that would enrich and confirm the data already collected during interviews and to clarify and seek responses to questions inadequately explored during interviews. The resulting rich data were used to explore participant situations in the interview process and to confirm the findings in subsequent interviews. Diaries were unstructured but used prompts in the instructions to encourage each participant to document their experiences that were significant to them. Mothers were reminded that there was no right or wrong way of documenting their experiences. Of the completed diaries, some had multiple diary entries, and some had minimal diary entries. A total of 28 interviews and 7 diaries were completed.

| Data analysis
Thematic analysis of both interviews and diaries was aided by guidelines to approaching hermeneutic phenomenology, the work of van Manen (1990) who advocates using three methods to isolate thematic statements that attribute meaning to a phenomenon. The process of thematic analysis (Table 1) began at the first interview, through return of completed diaries, and continued to completion of the write-up of findings. The selective reading approach was assumed involving thorough scrutiny of the text, with the aim of revealing statements or phrases that seem essential to the experience being described (van Manen, 1990). Adding depth to the analysis, the holistic reading approach was also adopted where the text was viewed as a whole and notable phrases that captured the fundamental meaning were identified. This was further presented in line with the five existential themes that are fundamental to the lifeworld of all human beings according to van Manen (2014): 'lived space', 'lived time', 'lived body', 'lived human relation' and 'lived things'. The existential of 'lived time' is applied in presenting the findings outlined below. Data were managed using NVivo 11 qualitative data analysis software.
Pseudonyms are adopted throughout, and labelling is adopted in the presentation of quotes: Int1, Int2 and Int3 indicate which interview the quote refers to, whereas D refers to diary entries.

| RESULTS
The existential dimension of 'lived time' provided an understanding of mothers' daily lives in terms of their experience of giving medicines to their child with severe and profound intellectual disabilities. All mothers were conscious of time and the demands placed upon their day with many clock watching and some being all consumed by time

| 'Always on call'
All mothers emphasized that the pattern of their daily lives meant that they were always 'on call' and carried their mobile phones if away from their child. Whether it was a weekend or holiday time, mothers had to get up and administer medications as 'they were going by the clock' (Pam, mother of John-D) and seldom experienced a lie-in. If a child had epilepsy, any deviation in the time when medications should be given could have led to an increase in seizure activity.
I think sometimes you'd love to just get into bed, especially when you are tired that you just want to sleep and wake up naturally. But you have to actually go by the clock … some morning I would just love to be able to sleep. (Pam, mother of John-Int2) Mothers described how they planned their lives around knowing they needed to be home if on a night out and up early in the morning to give medications and so restrained themselves when out. Furthermore, mothers acknowledged the constant pace of their caring role and how they were always on alert due to the complexity of care their child required and the necessity of medication giving. The lack of escape from caring as there was no one else to take over was a recurring matter. One mother admitted that respite offered a break from the monotony of medication giving each morning and from being constantly on call: it's great having a break from the 7am routine because everything is by the clock, even with the other children.
So when Eoin is in respite we'd tend to go off for the T A B L E 1 Process of data analysis Van Manen's (1990) guidelines Phase of data analysis Turning to the nature of lived experience

Transcribing, reading and rereading
Turning to the nature of lived experience

Constructing a qualitative database
Investigating experience as we live it Selective reading approachcreating initial themes Reflecting on the essential themes which characterize the phenomenon Holistic reading approachcreating essential themes Describing the phenomenon in the art of writing and re-writing Balancing the research context by considering the parts and whole

Writing
Describing the phenomenon in the art of writing and re-writing Adopting an existential approach day and do something totally random with the other kids, which is good. (Grace, mother of Eoin-Int2)

| Adapting 'my' life
Mothers acknowledged that they adapt what they do daily to suit their child and the routine of giving medicines. One mother described giving medicines as something they needed to do: it's probably one of those things that you are doing and you just take it for granted. It's one of those sort of hidden kind of things that just becomes part of your routine, the bottom line is we do whatever we need to do …. (Siobhan, mother of Niamh-Int1) Some mothers indicated that they plan their lives with a lot of thought and very little spontaneity exists due to the full-time nature of their role. One mother talked about going home to visit her parents with her child and family and after having a lovely day catching up, it being undone by the necessity to 'get in' (Pam, mother of John-Int1) medications into her child who was tired and due to decreased muscle tone found it difficult to swallow. Moreover, this mother recognized that she does not go out at night until she has her child in bed and medications given, to alleviate her anxiety and reassure herself he is The need for privacy when administering some medications due to the nature of the route of administration such as rectal was also highlighted and added another layer of complexity.

| Time-consuming
This theme refers to the amount of time that it takes mothers to manage the task of giving medicines and how time and the clock can impact on their daily life.  about what I did or did not already draw into syringes.

| Preparation of medications
(Gillian, mother of Ava-Int3) A level of precision was also required in terms of measuring the various medicines especially if they required reconstitution, crushing or dispersal and the child was not on a full dose, which meant mothers were measuring portions of medicines and discarding the remainder.
Additionally, flushes for gastrostomy tubes had to be considered. This level of precision was also used in terms of ensuring safety was a top priority with one mother acknowledging she cuts the tablet packs into groups of 3 so she knows she only needs to take out one piece of the packet per administration, and in turn, she felt this was safer than having the full pack out on display. Precision was also made easier when mothers adopted strategies such as using a specific size syringe for drawing up medicines or for administration, for example, 5-ml syringe for 5-ml medication. One mother specified that many of the medicines her child was prescribed were only available in tablet form and required crushing and then dissolving further in liquid in order to administer more easily, but this took more preparation time. Being precise was also described by one mother relating to preparing an injection for her child. She recognized her commitment to ensuring there was no scope for error by using the correct size syringe for the dose that was required: I transfer his Anakinra to a syringe. I transfer from, it's 100 mg in 0.67 ml … it's a bit tricky, and you have to transfer that into an insulated syringe. He gets 0.47 ml at the moment and I give that in a 0.5 syringe … I really am a stickler … I try to use the correct size syringe, so like, he's on 0.8 of Sildenafil, so I use a 1ml syringe.
He's on 2ml of Motilium, so I use a 2.5ml syringe. It just leaves less room for mistakes. (Liz, mother of Jake-

Int1)
Precision was also adopted by mothers in terms of timing and how it was important that their child be positioned correctly, often upright in a chair, to support the ingestion of medicines. This became more problematic when it was night-time and the child had to be removed from bed to 'give medicines'. You just have to be ultra organised …. (Liz, mother of Jake-Int1)

| Being organized
This mother also admitted that with the requirement to be so organized that sometimes she felt it was the only thing she could keep on top of. Additionally, mothers also relayed the importance of ensuring being organized included having the medications ordered. Interestingly, one mother described her checking process as akin to preparing a 'shopping list' (Lynn, mother of Emma-Int1). Mothers also indicated that ensuring you kept copies of prescriptions was important especially when several people were involved in the process and to ensure the child got the correct drug and dose.
you really have to micro-manage and make sure that if the hospital is faxing the GP, they post the original to me so that I can make sure that what I'm getting from the GP is what the hospital prescribed. (Gillian, mother of Ava-Int3)

| DISCUSSION
The findings provide an understanding of mothers' daily lives in terms of their experience of giving medicines to their child with severe and profound intellectual disabilities. The concept of time and the impact of giving medicines were apparent, mothers being 'always on call' and the constant full-time pace of their caring role evident. This is to be expected, largely due to the nature of disability and the associated medical conditions requiring medication management (Brenner et al., 2018(Brenner et al., , 2020Doyle, 2020a;Green, 2007;Nakken & Vlaskamp, 2007). Often, these conditions are complex and require a demanding schedule of care (Brenner et al., 2018;Davies & Carter, 2013;Davis et al., 2014;Luzi et al., 2019;Nakken & Vlaskamp, 2007;Toly et al., 2012). Furthermore, nurturing a child with severe and profound intellectual disabilities develops into a lifelong responsibility placing enormous burden on families (Carter & Bray, 2017;Coad et al., 2014). This was evident here with mothers afraid to deviate from specific times for giving medicines due to the risk of deterioration in their child's condition, resulting in mothers adhering to a 24-h schedule of care.
The difficulty highlighted by mothers surrounds the delivery of relentless complex care within the home setting, something that may historically have been delivered in the healthcare setting, where at least staff got a break (Leiter et al., 2004;Murphy et al., 2021). The intensity and unpredictability of mothers' caring responsibilities as well as lack of escape from their role was evident and is supported within the literature (Bourke-Taylor et al., 2010;Heaton et al., 2005;Swallow et al., 2011). More specifically, the task of giving medicines was acknowledged by these mothers as an onerous one eating into their caring activities. Similar to this study, the high time demands on parents were explored by McCann et al. (2012McCann et al. ( , 2015 who identified that parents of children with complex needs carry significant caregiving burden often increasing as the child gets older. However, this particular study emphasizes the task of giving medicines and all of the associated work that is involved in ensuring these are administered on a daily basis often multiple times per day. Furthermore, it was established that the concept of 'vigilance' was a large component of caregiving for these parents. This vigilance referred to by Carter and Bray (2017) was also explained by mothers indicating that even if it was a weekend, they still had to get up and 'give medicines'. Additionally, this study has increased insight into vigilance in the context of monitoring for medicine effect and side effect, all demanding a portion of time for mothers. It is also notable that many of the mothers used several routes of administration for medicines, requiring a diverse array of preparation skills. It became more time-consuming when a gastrostomy tube was being used as this required a more complex medicalized procedure or when a child's condition deteriorated and determined the need for yet more medications. Using a gastrostomy tube for giving medicines requires alteration to drug formulation, and not all medicines are available in liquid form, the recommended formulation for administration using a gastrostomy (Wright, 2011). Therefore, alternative approaches to manage tablets are required to ensure the correct consistency to minimize blockage while also maintaining accuracy and precision (Wright & Kelly, 2012 Mothers acknowledged that they adapted their daily life to suit their child and the routine of giving medicines, with few spontaneous activities or social outings planned. Heaton et al. (2005) recognize this need to adapt, also supported by Crowe and Michael (2011) with an acknowledgement that typical days do not really exist for mothers of children with severe and profound intellectual disabilities. Finding the time to do anything other than care is difficult and stressful with the literature identifying specific difficulties for mothers in terms of employment, leisure activities or social interaction (Brandon, 2007;Carnevale et al., 2008;Silibello et al., 2016). Although some mothers in this study worked outside the home, this required immense planning and organization for their child with severe and profound intellectual disabilities. Diehl et al. (1991) and Woodgate et al. (2015) suggest that one parent usually ends up taking on the full-time caring role. Evidence also indicates that the daily burden of routine and continual responsibilities can result in physical and emotional over burden for carers (Woodgate et al., 2015)

| Implications for clinical practice
Although caregiver burden is addressed in the literature, the intricacies of giving medicines are less so. There are implications for various other cohorts of children with continuing medication requirements: those with complex healthcare needs and those with chronic illness.
There appears to be no standard system of practice in Ireland for supporting mothers of children with severe and profound intellectual disabilities in giving medicines. Mothers admitted not being asked about their experiences and therefore placed value on participating in this study, providing a rare opportunity to discuss their daily lives. It is important that health professionals develop an understanding of the task of giving medicines and the associated time required to manage these medicines on a daily basis, appreciating the challenges experienced by mothers. Formal education for mothers (parents) needs to be developed to encompass all elements related to giving medicines, in turn empowering them to be confident and competent in this task.
The importance of supportive relationships from professionals especially the general practitioner, pharmacist and hospital is also key in providing supportive elements to mothers' daily role. With the volume of medications and administrations, development of a single medication administration record for use at home is welcome. This should form part of the medication passport where a record of daily administration is recorded. The availability of respite care is also recommended as a positive coping strategy for mothers to have a break from the daily task of giving medicines.

| Limitations
Published research on this topic area has been limited; thus, this study offers a first-hand understanding of mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. Although this study offers insight into a topic area often forgotten by professionals and not prioritized, it is worth noting that the purposive sample engaged in this study may have chosen to partake as they had experienced specific difficulties in giving medicines.
Furthermore, the experiences captured are a moment in time, and subsequent experiences might sway mothers' understanding of the phenomenon. Additionally, fathers who might be direct caregivers were not included in this study.

| CONCLUSIONS
The findings of this hermeneutic phenomenological study have severe and profound intellectual disability are increasing. The findings will also contribute to enhancing the support and care of mothers and children with severe and profound intellectual disabilities and provide a platform for further deliberation.