“It goes against the grain”: A qualitative study of the experiences of parents’ administering distressing health-care procedures for their child at home

3.1 Participants and recruitment

We aimed to recruit no more than 20 parents to allow in-depth exploration of the topic. There were two criteria for study inclusion. First, the parents must have had current or past experience of carrying out technical health-care procedures that they thought their child found distressing. Second, the child was aged approximately 10 years or less. In terms of exclusion, we purposefully avoided recruiting older children; issues relating to puberty may have added another layer of complexity to the topic that could not be accommodated within this project.

No further criteria were used, but we tried to ensure a range of factors were represented in the sample (see Box 1). Participants were recruited via adverts placed on websites and newsletters of charitable organizations, and social media (see Box 2). The adverts contained a web link to further information and an online form which could be used to express interest in participating. Parents could also contact the researchers directly. Those who expressed interest were contacted by the researchers to discuss the possibility of taking part in the research.

3.2 The sample

Nineteen primary caregivers were recruited. These were mainly mothers. A range of diagnoses, family composition, types of procedures, duration of responsibility for the procedures and cognitive ability of the child was represented (see Table 1). Recruitment was UK-wide with a broad geographical spread within the sample. A brief description of the procedures that parents undertook for their child is provided in Table 2. We also recruited a subsample of secondary carers (usually fathers). However, this paper focuses on the findings from the primary caregivers.

3.3 Data collection

Interview schedules ensured consistency and comprehensiveness of topic coverage across all interviews (see Box 3, column A). The topics explored in the interview were informed by the research questions and objectives, consultation work with children's community nurses conducted to support the bid for funding this research, and findings from existing research. Draft topic guides were shared and discussed with our research unit's permanent consultation group of parents of children with complex needs. Interviews took place either face to face or via telephone depending on parents’ preference. They typically lasted around one hour (range 39-145 minutes). Interviews were audio-recorded with permission and transcribed verbatim. The data were collected during 2014-2015.

3.4 Ethical considerations

This was a sensitive topic on which to undertake research, and strategies were put in place to pre-empt and address this. First, all information conveyed to participants made it clear that the interview could be pause or stopped at any time. Second, the structure of the topic guide ensured participants were eased into difficult topics and that interviews ended on less sensitive issues. Third, participants were given a leaflet containing details of local and national support and advice organizations for parents of children with complex health-care needs. Fourth, the researchers anticipated that due to the topic, some participants may become upset during interviews, and prepared a strategy to manage this prior to embarking on fieldwork. This involved sensitively acknowledging the participants’ distress, asking the participant whether they would like to pause or end the interview, and only continuing if and when the participant felt ready. Only a minority of participants became upset, but all wanted to continue with the interview. Informed consent was obtained from all parents, and all were given £20 as a thank you for their time. Ethical approval was obtained from the University's Social Policy & Social Work departmental ethics committee.

3.5 Data analysis

A thematic approach21 to data analysis was taken. It comprised a four-stage process. First, transcripts were read and re-read, with extensive notes written to facilitate familiarization with the data and to begin identifying emerging themes in parents’ accounts. We then prepared “pen portraits” of each interview which yield a condensed account whilst retaining the complexity, context and narrative. These pen portraits included participant quotes (referenced with transcript page numbers for transparency and tracking), and a series of bullet points to summarize the key themes of the interview. Portraits were typically 3 to 5 pages long, and text was organized under five categories: the participants’ circumstances, how they came to have responsibility for carrying out the procedures, parents’ experiences of the procedures, perceived impact and support needs. The themes and narratives of the pen portraits were then collated into a set of overarching themes (see Box 2, column B) and displayed visually, with summaries of supporting data, using mind maps. Mind maps are a tool for visually displaying themes and subthemes and the connections between them. Mind Genius^® software was used to support this process. Using the mind maps and pen portraits, we then undertook a thematic analysis.21 This involved writing analytical notes comprising thick layers of description about the themes, patterns and typologies. As part of this, we compared groups and examined cases to seek explanations for the findings. These notes were then reworked and refined until the team was satisfied the analytical process was complete and the account produced comprehensive and accurate. This resulted in the refined themes reported in this paper (see Box 3, column C).

3.6 Validity and rigour

Validity and rigour in this study were supported through numerous strategies. At the stage of recruitment, clear information was given to ensure we sampled relevant “key informants” in our purposive sample.22 At data collection, an interview schedule ensured the topics explored were consistent across interviews. Throughout analysis, [GS] and [BB] regularly discussed the data and our interpretations, cross-checking emerging themes to enhance reliability of interpretation.23 Data analysis tools (pen portraits, mind maps) included systems by which summarized/reduced data were referenced back to the raw data. Towards the end of analysis, a small group of stakeholders (nurses, paediatric psychologists, play therapists, voluntary sector representatives and parents) met to discuss and reflect on the emerging findings. This discussion, facilitated by the research team, fed into final data interpretation, thus enhancing its validity. Finally, methods are reported clearly here for purposes of transparency and understanding.24

4.1 Emotional experiences and responses

Not all felt this way: for two parents, being responsible for procedures that caused their child distress either presented little emotional burden or did not occupy a significant emotional “space.” One mother, who gave thumb pricks to her child, indicated that whilst she did not like doing this, it was not something that she typically struggled with. Other aspects of her child's care were more “significant,” and, because her son had come close to dying on more than one occasion, she was willing to take on this component of care: “you don't care what it means to do anything extra cos you're just glad to have them” (Interview 6, Mother, thumb pricks). Another mother's account indicated that it was the responsibility for life-preserving care (tracheostomy tubes) that was the most demanding part of her caring role.

Second, “temporary” roles were adopted. Parents reported going into “nurse mode,” being a “different” person or having to “get out of the mother zone” so as not to engage with their maternal feelings about the procedures.

These were the ways parents handled their discomfort in the moment of carrying out the procedures. Separate to this, when reflecting on their experiences during the interview, some parents reconciled their responsibility for carrying out distressing procedures by making sense of their role in the context of perceived benefits and choice. We go on to describe this next.

4.2 Making sense of their role

There were two ways by which parents made sense of having to do something that caused their child distress.

Thus, even though they disliked having to do the procedures, the perceived benefits to the child and/or family were greater or prioritized. Indeed, some proactively made choices to administer the procedures, in place of health staff, to achieve these trade-offs.

4.3 Changes in experience over time

This acceptance of the role was particularly observed in those carrying out procedures that were not time-limited. Thus, the long-term inevitability of the responsibility may have shaped such acceptance. There was also evidence that carrying out the procedures regularly enhanced familiarity with, and thus acceptance of, them. For some, carrying out the procedures ceased being an anomalous part of their role, with descriptions of these becoming a “normal” component of their caring responsibility as a parent over time. For example, one parent described the changing and care of her son's tracheostomy tube as something that became “as normal to me as changing his nappy” (Interview 1).

A greater sense of competence in carrying out the procedures, developed over time, was also described by many. This was linked to the child becoming less distressed (in some cases as a result of the way parents managed this or because the child better understood what was happening with age), or more compliant. Whilst the child's increased understanding of what was happening was implicated in the lessening of their distress (and thus parents’ sense of competence), there was no evidence that the child's age played a role in how quickly parents adapted to this responsibility.

Regardless of whether the emotional burden lessened over time, there were still other demands that parents had to contend with because the procedures caused their child distress. In the next section, we describe what might be considered as these “added challenges.”

4.4 The added demands

The procedures that parents carried out were not simply a clinical task. Because the procedures elicited some form of distress in the child, parents had to manage this. To manage, or prevent, distress, various strategies were tried, mostly initiated by parents themselves but in a few cases with the guidance of health staff.

There could also be physical resistance from the child, requiring some form of holding or restraint. Many developed their own ways of doing this, but restraint itself was another source of unease for parents. One mother noted how she had become “an expert at dodging arms” as restraint had never been suggested by health staff as an option, and nor was it something she was comfortable with. Restraining a child and undertaking the procedure could be a two-person job and thus was a further challenge for those acting alone.

For single parents, or those who did not have another family member in the house at the time, the presence of siblings was necessary or inevitable. There were reports of making the best of this situation, by getting the sibling involved to “demystify” the procedure, but also a sense of guilt from parents that their other children may end up helping them. A minority recalled initial concerns about how siblings would or did respond to seeing their brother or sister upset. However, none felt this had become problematic in the long-term, and parents believed they had successfully explained what was happening to their other children.

So far, the findings reported have revealed how carrying out distressing health-care procedures means parents are managing a complex situation that extends beyond the technical delivery of the procedure alone. Next, we report the ways in which parents wanted to be supported with this responsibility.

4.5 Parents’ support needs

Parents’ experiences of being supported with this responsibility varied. Some described on-going contact with ward and/or community nurses, and others reporting little to no input after the initial training period. The input from health-care staff, in particular nurses, which parents valued or did not have but desired, reveals four areas of support.

The first related and responded to the fact that the procedures caused their child distress. As such, there was an expressed need for advice about ways of managing their child's distress, and ways of managing, and assistance with, restraining the child. One parent also highlighted useful advice she had received about distracting her other children.

Third, the importance of practitioners recognizing and addressing the emotional demands of the role, and any associated support needs, was stressed even among parents who believed they had adjusted to the responsibility. Opportunities for peer support, being asked by their child's nurse how they, as a parent, feel about doing the procedures, and recognition from health-care teams of the responsibility parents have when taking on these procedures were all ways of providing emotional support. Some felt such support would be more beneficial, or critical, in the earlier stages of being responsible for the procedures, whilst others did not identify a point at which it would be most useful, implying it would be valued at any time.

The fourth area of support concerns parents’ anxieties about performing the technical aspects of the procedure correctly. This type of support thus extended beyond the fact that these procedures were distressing, and the associated demands this created. This could be achieved through paced training at the stage of learning the procedure that allowed the parent to grow in confidence and address anxieties, opportunities to refresh training later through intermittent supervision and observation from nurses, the provision of information about carrying out the procedures and, importantly, access to a ward or community nurse once at home to call for advice if needed.

5.1 Study strengths and limitations

Given the lack of existing evidence, the in-depth, exploratory approach is a major strength. It is, however, important to note that we struggled to recruit “secondary carers,” usually fathers. This is not an unfamiliar experience33 but does mean the study has not been able to explore the experiences of others who may, in some way, be involved in administering health-care procedures which distress their child. Whilst mother are typically the main carers for ill children, fathers’ views are important, especially in this context where parents may be negotiating responsibility for carrying out procedures, or where responsibility is shared. Finally, the self-selecting sample presents a source of bias. However, a range of procedures and children's conditions were represented, thus minimizing the potential for these exploratory findings to be applicable only to particular groups of children or procedures.