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Caring for ventilated children at home

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VOL: 97, ISSUE: 39, PAGE NO: 42

Ros Sanders, BSc, RSCN, is team leader to the children's homecare team, Ordsall Health Centre, Salford Community Health Care NHS Trust

The children's homecare team at Salford Community Health Care NHS Trust was one of the first in the North West region to set up a team of nurses to care specifically for ventilator-dependent children at home. The children, aged from six months to nine years old, were initially cared for by six registered sick children's nurses (RSCNs). When the first two nurses left, care assistants replaced them, having undergone extensive training. The children thrived and were relatively stable with regard to their respiratory needs.

The children's homecare team at Salford Community Health Care NHS Trust was one of the first in the North West region to set up a team of nurses to care specifically for ventilator-dependent children at home. The children, aged from six months to nine years old, were initially cared for by six registered sick children's nurses (RSCNs). When the first two nurses left, care assistants replaced them, having undergone extensive training. The children thrived and were relatively stable with regard to their respiratory needs.

Eventually, with the loss of all but two of the original nurses, care assistants were managing most of the children at home. They were found to be competent, reliable, likely to remain in post longer than an RSCN and the families had a good rapport with them.

Initiating the survey
Ventilator-dependent children are at high risk and it is vital that the staff caring for them receive effective training. Moreover, caring for this patient group in the home is a complex task, carrying more responsibility than care assistants are likely to encounter in a hospital setting.

Recognising these factors, the team leader decided to organise a survey exploring the care assistants' experiences with regard to the children and families in their care. It was hoped that the survey would reveal any gaps in training and indicate whether the care assistants were receiving adequate support for this demanding role.

Information was collected from nine carers who had looked after ventilator-dependent children in the home environment. Six of them were homecare workers (as opposed to staff nurses).

The carers worked three 12-hour day shifts and 10-hour night shifts. No one replaced them when they went off duty.

Data collection
The sample consisted of four female home care workers, aged between 24 and 50 years old, who had been in post for six months or more. For confidentiality reasons they have been given the pseudonyms Julie, Janet, Jane and Judy.

A semi-structured interview was tape-recorded to collect data. This type of interview allows the wording of the questions to be changed but not their overall meaning, acknowledging that not every word has the same meaning to every participant (Barriball and White, 1994).

Investigators have a responsibility to ensure that participants receive the necessary debriefing in the form of active intervention before they leave the research setting (Robson, 1993). Therefore, after the interviews, all participants were offered a chance to 'debrief' off the record. It was felt that the strategies used to ensure ethical integrity were adequate. These included empathy, genuineness, a trusting relationship and confidentiality. Anonymity was guaranteed.

The participants read their own transcripts after analysis and were asked if they agreed with the meaning and context of the interview. At this point they were informed that this could be published - none of them had any objections.

Several themes emerged from the interviews: brothers and sisters, boundaries, and mothers.

Brothers and sisters
All the participants were caring for children with an older sibling who the carers believed had behavioural problems. They were uncertain a lot of the time as to how they should interact with the sibling. They felt that this was frustrating, especially as they had no training on how to deal with aggressive outbursts.

Julie remembered an incident that conveys the danger of a jealous sibling: 'One time I was sat having a cup of tea on the settee with the baby on the floor playing at my feet, when X climbed onto the chair opposite and launched himself from it onto me and the hot drink. I think he was jealous of me playing with the baby. Fortunately, there wasn't much tea left in the cup.'

Jane said that she diverted all behaviour problems or interactions, however minor, to the mother: 'I never tell Y off if she has been messing with the equipment. I go to the mother and ask her to have a word with Y and tell her what she's been doing. Then it's up to the mother whether to tell her off or not - that's not my job.'

A study carried out by Scelles (1997) demonstrates the importance of giving siblings the opportunity to express themselves, whether it be about their difficulty in dealing with their unique situation or about their feelings of shame or guilt. The siblings, like their parents, are often anxious to find ways in which they can be 'good' brothers or sisters to the child with the disability.

Sibling jealousy exists in all family units; coping with it psychologically can be especially problematic in cases where there is a disabled child. Aggression can be transferred to another sibling, who will then become a favoured target. Alternatively, children can turn their aggression against themselves, thus becoming 'problem children' in their turn.

There are unspoken rules which govern interpersonal relationships, determining what is acceptable and unacceptable behaviour. Every individual has different expectations and consequently different boundaries. When carers are working in the homes of families for up to 12 hours a day, it is inevitable that relationships are formed. Problems can occur within these complex relationships if either the parent or carer steps over the invisible boundaries. Uncertainty, confusion and frustration follow, often with no outlet due to the nature of the relationship.

For example, in one case the mother expected the carer to change soiled nappies and handed the child over to the carer when this needed to be done. The carer saw this as an infringement of the unwritten rule that the mother cared for the baby.

Each carer takes with them a differing set of boundaries, no matter how subtle. Understandably, sensitive issues around the mother's social life or social activities within the home cause the carers to become uncomfortable or uncertain.

Judy spoke of a situation where the mother overstepped the boundary between employer and friend: 'When she has friends round she will say, 'Come and sit with us', so you sit with her and her friends, which is very uncomfortable because you don't know what to say and they aren't your friends. I would rather be in the kitchen but I wouldn't want to be rude to her friends. I'd be quite happy to say hello.'

The double-edged impact of the support rendered by home care workers and the infringement on family privacy due to their presence in the home has been described as the 'mixed blessing' of home care nursing (Coffman, 1995). The intrusion of professionals on the family's privacy affects parental decision-making and interactions with family members (Aday and Wegener, 1988).

Parents repeatedly raised the issue of boundaries in the study by Coffman (1995). The carers articulated the essence of their experiences as 'crossing lines'. The crossing lines issue reflected parental expectations of the boundaries of the role of the carer in the home and each parent had his or her own idea about what was deemed professional behaviour by the carer.

An infringement of privacy might detract from the support gained from having carers in the home. However, the support the family gains, the genuine caring attention the child receives from the carer, the competency brought by the carer and the collaboration the parents receive usually compensate for any perceived boundary incursions (Patterson et al, 1994).

In the present study, the uncertainty of roles was a recurrent theme throughout. All four participants felt that the mothers perceived the carers in the role of 'residential babysitters' or 'glorified babysitters'.

Janet complained: 'I think that A (the mother) seems to think we are residential babysitters and at times I find it very frustrating.'

It was suggested by more than one carer that to have various 'boundary rules' written down, almost in the form of a contract, would be helpful.

Julie said: 'I think it would be better if there were rules, proper rules, you know. If the boundaries were written down you could say this is why [I'm doing this], it's because it's in the rules.'

Judy's ideas almost exactly mirrored Julie's: 'There isn't much room for compromise but if there was something written down ... Because everybody doesn't do the same thing, you could easily set yourself apart and not know it. If everybody had to do the same thing, like going to sit alone for 10 minutes to eat your tea ...'

From the mother's point of view, the stress is tenfold. The health and well-being of the disabled child, as well as that of her other children, is a constant worry. The need for normality within their lives regarding routines such as school, work, shopping and social contacts, all bring a need to change lifestyles. It is the ease with which some families are able to adapt which seems to decide if they view the home care workers as essential allies or a stressful but necessary support.

Family lifestyle changes reported in a study by Hazlett (1989) included parental and family activity restrictions, financial burdens, high levels of stress, negative sibling behaviour, loss of privacy, sleep disruptions and schedule conflicts. All reported physical and/or mental exhaustion associated with the child's home care.

In the present study, the carers could only give opinions based on their unique experiences, from their own perspectives.

The carer's role
The themes identified are a representation of the participants' perceptions of their role and their experiences as interpreted from the transcripts/interviews.

The training the carers received seemed to be effective: all participants felt that they were well prepared to carry out the role. When asked about their role, the carers either perceived themselves within the family as the professional, officially supporting the family, or the question caused them to experience a vivid realisation of the role they found themselves in. This became obvious when all carers rephrased the question for their own clarity.

For example, Julie said: 'Are you asking what I think I should be doing or what I actually do?' And Judy stated: 'I think we should be there for support, but what we are actually doing is ...'

From the transcripts, it appears that the most important aspect of the carers' jobs was communication with the mothers (or lack of it), and the misinterpretations placed on actions, non-actions or, more worryingly, assumptions.

In retrospect, the interviewer could have probed more deeply as none of the participants would go into greater detail beyond the challenges and problems with the interactions and dynamics of the family. Nevertheless, the objectives of the study appear to have been met as the home care workers have had the chance to express their views.

Looking at the transcripts, it seems that the carers sometimes lost track of the wider picture. Although they saw themselves as working to support the families, they did not always present the view that they were providing a service via the trust to empower these families to integrate the sister/brother/son/daughter into as normal a family life as possible.

The findings of this study have prompted several recommendations for the children's homecare team, including:

- A review of training so that information about coping with challenging behaviours is incorporated;

- The compilation of clear guidelines concerning the role of the carer towards the siblings;

- Formal contracts to cover parental responsibilities and to avoid confusion over boundaries in the home.

There also appears to be a need for training in family dynamics and child development, given that the data suggests the carers could have been more sensitive to the unspoken needs of the mothers and other children in the families.

Obviously, the mothers of these children hold a wealth of information that could help with the dilemmas reported and it seems that more UK research on their thoughts and feelings into this phenomenon is definitely overdue.

Existing research tends to be from the USA, where different cultural conditions, and therefore different approaches, apply. Nevertheless, the insights have been invaluable in trying to understand the stresses the carers of ventilated children undergo on a persistent basis.

Finally, further audits into the mothers' views seems imperative and would reap rewards in terms of staff recruitment and retention, as well as having positive implications regarding education and management of these teams.

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