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Children's regard for nurses and nursing: A mosaic of children's views on community nursing
Duncan Randall J Child Health Care 2012 16: 91 originally published online 13 January 2012 DOI: 10.1177/1367493511426279 The online version of this article can be found at: http://chc.sagepub.com/content/16/1/91

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Article

Childrens regard for nurses and nursing: A mosaic of childrens views on community nursing
Duncan Randall
Nursing and Physiotherapy, School of Health and Population Sciences, College of Medical and Dental Sciences, University of Birmingham, UK

Journal of Child Health Care 16(1) 91104 The Author(s) 2012 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493511426279 chc.sagepub.com

Abstract In the past decade there has been both an increase in the number of children who receive nursing care in their communities rather than in hospitals, and an increasing willingness to listen to children. This qualitative study used Clarks Mosaic approach to elicit childrens views of community childrens nursing. Twenty-one children took part in total, with seven children making up a core group who participated in a number of activities for over a year. A non-core group of 14 children were observed receiving care from six community childrens nurses. The children had diverse medical conditions, were aged from 11 months to 17 years old and came from diverse social, ethnic and cultural backgrounds. Some children expressed a positive regard for nurses and nursing. Some children a negative regard, others were ambiguous. From these data it is proposed that there is a continuum of regard for nurses. How children regarded nurses did not seem to be related to the nurses actions, but to the childs understanding of their illness and their involvement in care. Further study is required to clarify the concept and should focus on what effect childrens regard for nurses and nursing has on health outcomes. Keywords community care, nursepatient relationship, patient participation, qualitative approaches

Introduction
Much of the research on childrens views of nursing comes from hospital settings (Carney et al., 2003; Coyne, 2006), even though more children are now surviving previously fatal illness, trauma and medical procedures, and requiring ongoing nursing care in their communities (Glendinning

Corresponding author: Duncan Randall, Nursing and Physiotherapy, School of Health and Population Sciences, College of Medical and Dental Sciences, University of Birmingham, 52 Pritchatts Road, Edgbaston, Birmingham B15 2TT, UK Email: d.c.randall@bham.ac.uk

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et al., 2001; Earle et al., 2006). It might be expected that children receiving care in community settings, often at home, would have a different experience of nursing than children on a hospital ward, but very little research has focused on how the community setting influences how children receive nursing care. The concept of community childrens nursing may be particularly British, however, in many other countries children live at home and receive ongoing nursing care (Earle et al., 2006; Oktem et al., 2008).

Background
Over the past decade there has been a growing willingness to listen to children when considering how to develop health services (Coad and Shaw, 2008). In part this has been influenced, in the UK, by the public patient involvement agenda (DH, 2002, 2004, 2007) and in part it has been facilitated by research which has shown that children can provide sophisticated and useful insights into their social worlds and nursing care (Prout, 2001; Carter; 2005; Coyne; 2006; Moules, 2009). An acceptance that children are competent commentators on the services that they receive underpins Clarks (2005) mosaic approach which was used in this study. Clark sets out three aspects which give theoretical support to her approach, these are that children are competent to comment on their own social worlds (Prout, 2001; Mayall, 2002); that participatory methods can empower children (International Institute for Education and Development, 2001; Kemmis and McTaggart, 2005); and that understanding about childrens social world is co-created between adults and children (Edwards et al., 1998) A search of the literature using Parahoos (2006: 137) suggested steps identified very few studies, in the main studies were identified by the authors own experience and connections as a lecturer rather than by the search strategy. The lack of previous studies perhaps forced a more exploratory approach, rather than allowing a more restricted or targeted approach. The review of the literature did identify three issues which challenge the quality of the evidence presented in previous studies of childrens perceptions of receiving care in community settings. Firstly, very few of these studies detail how the research relationships between children and adults were managed. Secondly, the rigour of these studies is highly variable. Often the method is poorly described and none of the studies state whether the data analysis was open to independent review. Thirdly, most of these studies use methods adapted from adult research, such as interviewing, rather than methods which might use childrens cultures of communication (Christensen, 2004). The literature on childrens views of nursing has been focused more on hospital studies (Carney et al., 2003; Coyne, 2006) than community settings. Of those studies that do deal with community settings only Carter (2005) provides a discussion of the research relationships between adults and children. None of these studies takes a mosaic approach that includes the observation of nurses practice in community settings as well as participatory methods.

Method Design
In this study Clarks (2004, 2005) mosaic of methods was extended to a mosaic of methodologies. Phenomenology, ethnography and visual methodologies were used to capture different aspects of childrens experiences and to offer children different ways in which they could participate in the study. All of these methodologies come from a qualitative interpretive tradition (Parahoo, 2006) which offers a unifying framework for the use of these methodologies.
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This study was approved by a Local Research Ethics Committee (ref. 05/Q2706/53) under the Central Office for Research Ethics Committees framework, a predecessor of the National Research Ethics Service. It was also approved by three NHS research and development departments in separate NHS institutions. The work of the principal investigator (PI) was overseen by a supervisory team from the University of Warwick. Because this study was about childrens experience of receiving nursing care, a purposive sample of children aged 512, who had ongoing experiences of nursing was sought. To be included in the study the children had to live in the study area and receive more than one visit from the nurse per month, and to have been doing so for more than six months. The initial approach to children and families was made by nurses working with the children. Children were excluded from the study if the nurses working with the children felt that participation may be harmful to the child or their family. These inclusion and exclusion criteria were designed to allow as many children as possible to take part. The criteria did not focus on medical conditions. Interpreter services and communication experts were available to facilitate childrens communication. Although the sample is not large in number (n 21), the data collected gave rich insights into the childrens lives (Reitmanova, 2008).

Data collection
The use of a mosaic of methodologies in a framework of qualitative research gave rise to a mosaic of methods. Although in practice these methods to some extent influenced each other they can be grouped into the following stages: researcher bracketing interviews; first arts-based group activities; photo talk diary; observation visits; second arts-based group activities; and observation of nurses working days. Researcher bracketing interviews. Two interviews involving the principal investigator and an insightful and critical colleague were undertaken, each lasting approximately one hour. The interviews were recorded and transcribed. Arts-based group activities (core group children). Two groups were held with the core group children. Both groups were preceded by a social trust building event hosted by the research team to which children and their parents were invited (an evening of bowling with a snack meal), both groups were held in an arts venue with no connection to healthcare services (a regional theatre). A range of arts-based activities were used including word selection, ranking helpful people, drawing, puppet making, six-part story creation and other theatre-based activities. The groups were facilitated with help from co-workers (CWs) who were either student childrens nurses or specialist arts therapists. The research team (principal investigator and co-workers) met before and after each group to ensure a consistent approach and to debrief. Photo talk diary. Core group children were asked by the principal investigator to complete a diary of their nurses visits. To help them in this each child was given an activity book with a series of activities to guide their diary making. Each child was also given a disposable camera with 24 exposures, and a digital dictaphone. The children were encouraged to use the camera and the dictaphone in any way they liked to record how they felt about their nurses visits. The children were given a two-week period, or at least enough time for two nurse visits to make their diary. Parents were encouraged to help their children in making their diary, but reminded that it should be the childrens own work. Once the diaries were complete they were collected and copied, by the principal
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investigator, before being returned to the child. The child was then interviewed about the diary. This interview was conducted in the childs own home away from their main carer, privacy for the child was negotiated with other people living in the house, a co-worker sat in on these interviews. Observation visits. Early analysis of data showed that some aspects of nursing were not reported by the children (e.g. how nurses taught parents to deliver care). To determine whether these aspects were present, but not the focus of childrens talk, participant observation was used. Four of the core group children, two with negative and two with positive regard for nurses, were observed by the principal investigator before, during and after receiving care at home. Separately, six nurses were also observed by the principal investigator over their working day (8am5pm). The children observed in the course of observing the nurses made up the non-core group of children. These children were observed receiving care, but not formally interviewed. Because of a lack of previous observation studies no observation schedule was used, instead extensive notes were taken both in the field and immediately after the observation periods. Core group children and the six observation nurses were interviewed immediately after the observation period. In these post-observation interviews one child was interviewed with his mother present, but for the other three mothers were either not present or were in the background. All interviews were recorded on audio tape with the participants consent. Where children made images these were copied and a copy given to the child. The data were collected between August 2005 and October 2007.

Data analysis
The data generated in this study were both textual (transcripts from interviews, dictaphones, observation field notes, text written by children) and visual (images made by the children including photographs, video images and drawings). Visual images were analysed in their own right, using text descriptions of the image, detailing the images, method of production, content and intended audience, as suggested by Harper (2003). The textual analysis was aided by the use of Nvivo (version 7) computer software. The textual and visual data were analysed together using Colaizzis framework (1978) as set out by Beck (1994). All of the data were reviewed in an iterative process in which codes were created each with an inclusion and exclusion criteria, new data was allocated to codes according to these criteria. The codes were then organised into an axial or tree structure. Counter cases were considered. Finally short statements were generated which attempted to encapsulate the early findings, and these were put to the core group children at the final group, as a part of participant verification.

Findings Participants
Twenty-one children took part in this study; seven children made up a core group and these children were recruited by community childrens nurses and took part in the arts-based group activities, photo talk diaries and four were observed receiving care. A separate non-core group of 14 children were observed receiving care during the observations of the six nurses working day. In the core group childrens participation was variable. One child participated in all aspects of the study, but others declined some activities and some children on occasions were too ill to participate. The seven children who made up a core group had a variety of medical diagnosis, and
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came from different family, cultural and ethnic backgrounds and have experience of different nursing interventions (see Tables 1 and 2, the names used are research pseudonyms chosen by the children themselves). In the exemplar extracts, the principal investigator is denoted as PI. In addition to this a non-core group of 14 children were observed receiving nursing care during participant observation studies of six nurses during their working day. The nurses and children came from two study areas one urban area and one rural area with large settlements. These non-core group children also had diverse backgrounds and received a variety of nursing interventions (see Table 3).

Context
The concept of childrens regard for nurses and nursing put forward here needs to be seen in context. The children in the study presented themselves as like other children (Randall, 2011). The first thing they spoke about was their family, their friends and their school and communities. The children endorsed the following participant verification statements derived from early data analysis:
I dont like to think about being ill. I prefer to think about playing with my friends and being with my family. I would rather have my mum or dad do all the things I need to keep me well, than have nurses visit me at home.

The children did not endorse the statement that:

A good nurse is fun, but also knows how to do things right to make me better, they respect me as a person and work with my family and friends.

Children with positive regard for nurses

The focus in this paper is to report on the concept of regard for nurses and nursing, other aspects of this study are reported elsewhere (Randall, 2010, 2011) The data quoted below shows how some of the children had a positive regard for nurses. These children understood and were able to articulate the reasons they had a nurse visit them (see Figure 1). They also seemed to have a better understanding of their illness:
PI Nanny PI Nanny PI Nanny PI Nanny PI Nanny Why does a nurse come and see you? To have my needle. You have a needle? OK why do you have a needle? Cause I have growing spurts. You have growing spurts. So what does the needle do? Makes me not grow as quickly. Right OK, so is there something, is it a medicine that you have? Yeah. Right OK. Its like medicine in the needle. (Nanny: photo talk diary interview)

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96 Religion Muslim 31,20052,000 Mortgage 18,20031,200 Own 18,20031,200 Mortgage Degree (21) Diploma (18) NVQ2 (18) Family structure (lives with) House tenure Household income () Maternal education Paternal education (age left education) (age left education) GCSE (16) Degree (22) Certificate (16) 5,20018,200 5,20018,200 5,20018,200 None (16) None (16) A level (18) Non rent Local None (16) Authority Non rent Local BETEC (18) Authority Mortgage GCSE (18)

Table 1. Core group childrens demographic details

Age Gender Ethnicity

Honey

Female Mixed

Nanny 8 Mohammed 6

Gizzmo

Kelly

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Joanne

12

Mother & younger brother Female White Christian Foster parents Male Asian/Asian Muslim Both biological British Parents & 2 older Brothers Male White Christian Mother & 2 older brothers Female White None Mother & younger brother Female Asian/ Asian Muslim Both biological British Parents & extended family 10 siblings

Note: Rabbit attended group activities but no demographic details were collected.

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Table 2. Nursing care received by core group children Number of named nurses Honey Nanny Mohammed Gizzmo Kelly Joanne 2 1 0 2 1 1 Number of nurses visiting 4 5 4 3 6 2 Time receiving care (years) Frequency of visits 1.5 0.75 5 0.5 1 2 Care tasks

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Pain Sometimes Painful Painful procedure Sometimes Painful Sometimes Painful Painful procedure Painful procedure

Fortnightly Multiple Monthly Injection Three times per week Dressings Fortnightly Multiple Weekly Injections Weekly Injection

Table 3. Non-core group childrens demographic details Age (yrs) Gender Reason for receiving nursing care Nursing interventions observed 8 17 0.9 3 2 16 12 10 16 4 2.5 14 6 3 Female Oncology condition Flushing of long line Female Oncology condition Thumb prick test Female Complex health needs sequela to Respite including enteral feeding, parental advice prematurity Female Liver disease Taking off total parental nutrition Male Tracheostomy Respite including suction-health advice to parents Male Oncology condition Flushing of long line Female Cerebral Palsy (profound) Joint visit with social worker, weight, enteral feeding disability advice Female Arthritis Injection Male Abscess Dressing Male Metabolic disorder Injection Female Oncology condition Flushing of long line Male Abscess Dressing Male Constipation Advice Female Abscess Dressing

Figure 1. Image from Nannys photo talk diary 97

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PI Kelly PI Kelly PI Kelly PI Kelly ... PI Kelly

What if we did this thing from sort of 10 is the well, the best you could be, and zero is like very, very ill. I wouldnt think I was like really ill. I wouldnt think I was that. What would you say what sort of number would you put on it? I would like, just, just over 5 OK put a cross or something. About 7. A 7, oh OK. So what makes you well do you think? Umm, like my needles make me well. If you didnt have the nurses where do you think you would be on that nought to 10? I would be about on number, on number 3. (Kelly: interview after observation)

These childrens mothers and nurses allowed them to be involved in receiving care. This involvement took different forms. For example, Kelly used an ice pack which she got for herself and placed on the injection site with no prompting, while Nanny used counting to control when the injection was given. Children with a positive regard for nurses found it difficult to suggest ways in which nursing services could be improved. As can be seen from the data quotes below both Kelly and Nanny continued to express positive regard for their nurses, despite their view of the nurses being challenged:
PI In your diary you were talking about how when your nurses came and they had real fun with you they tickled you, but when [names CCN] came today she didnt do that, she didnt tickle you didnt play any games with you or [names brother] she pretty much came, gave you your injection, wrote the notes . . . . . . and went and went yeah because sometimes like the nurses that tickle me like theyve been to every single house and Im like the last one so (Kelly: interview after observation) Yeah but what about the not so good nurse? Ive never had a not so good nurse. . . . You must know what makes a good nurse, so what do you think would make a not so good nurse? Can you think of anything that you wouldnt like? Well I had a doctor put a needle in me when he said I promise I wont do it, and he did it. (2nd childrens group)

Kelly PI Kelly

Co-worker 4 Nanny Co-worker 4 Nanny

Children with a negative regard

Other children in the study had a negative regard for nurses. The data quote below from a post observation interview with Gizmo is perhaps typical of how these children were less clear about why they were visited by nurses and did not seem to have as good an understanding of their illness, as children with a positive regard.

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PI Gizmo PI Gizmo PI Gizmo PI ... PI Gizmo PI Gizmo PI Gizmo

Because you go to the hospital a lot dont you? Yep. . . . and you go see a doctor? Yep. . . . and you have nurses come? Yep, its stupid. You dont need them really. Because you are perfectly well? No [Gizmo shakes head] You do need them, yeah [he nods]. Because you are poorly yeah [he nods]. Why do you think you are poorly? Because I am. Because you are, what is it that makes you poorly do you think? Mmm, one answer. One answer, yep. I dont know. (Gizmo: interview after observation)

These children were often difficult to engage when talking about nurses or nursing. Honey, for instance, made no images of her nurse, and often answered only with a nod or shake of her head. However, she was a keen artist and was able to engage with the researchers in social activities:
PI Why didnt you like doing it [the photo talk diary]? Because you love drawing dont you? . . . Yeah. Was it because it was about nurses? Yeah. Do you not like your nurses? No, youre shaking your head. (Honey: photo talk diary interview)

The children with a negative regard appeared to be less involved in the care they received. During the observation of Gizmo he was held by his mother while a nasogastric tube was passed. The children were not passive in receiving care, Gizmo wanted the tube put into the same nostril, but was overruled by the nurse (see field notes below). The involvement allowed by adults (parents and nurses) was often restricted for children and this seemed to be especially so for children with a negative regard:
CCN ready, suggested Gizmo taken on to Mothers lap, Mother cradles Gizmo restraining his arms as she removes his old tube. CCN suggests different nostril for NG tube. Gizmo upset wants the same side. CCN insists, some explanation, do not want to get sore. Mother restrains Gizmo while tube is inserted, Gizmo very upset crying. States he hates nurse. When over cuddles into Mother. (Field notes observation Gizmo)

Like the children with a positive regard, children with a negative regard also found it difficult to articulate how nurses could improve the services they offered. As the data quote below with Gizmo shows, perceptions of the care they received also did not change, despite being challenged by the researcher:
PI Gizmo How are the ones [the nurses] who come and see you at home different then do you think? Dont like them I hate them.

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PI Gizmo PI Gizmo PI Gizmo PI Gizmo PI Gizmo PI Gizmo PI Gizmo PI Gizmo PI Gizmo PI Gizmo

I know, I know, you said that. Why is that? Pulling my tube. What about when they come and give wiggly* a drink whats that like? The same. Yeah [pause]. Put that one on as well. How do you think they could make it better for you, the nurses? By playing. By playing a bit more [names CCN] did didnt she? When she came in you were playing doggie, you were hiding in there, yeah. She came and tickled you didnt she? She made me laugh. Do you remember that? She never found me though. She did! She was playing a game with you though wasnt she? Yeah, but the idea is to play more games than one game. Yeah spend a bit longer with you, would that help mmm . . . But not the tube. No the tubes do, dont like the tube, but does the tube make you better? Yeah. Yeah and it has to be changed doesnt it? I hate it though. (Gizmo: interview after observation)

* Wiggly is a common name for a central venous catheter

A continuum of regard for nurses

These children from the core group with positive and negative regard for nurses perhaps mark the extremes of regard for nurses. Other children in the core group like Mohammed, Joanne and Rabbit were ambivalent about nurses or had a mixture of more positive and more negative regard. The extract below points to how Mohammed understood his illness but did not hold nurses in either particularly positive or negative regard.
PI Mohammed PI Mohammed PI Mohammed PI Mohammed PI Mohammed PI Mohammed Why do they come and do dressings? Because I got poorly skin. Poorly skin? How long have you had poorly skin? For a hundred years Hundred years? Since I was born new baby (Mohammed: photo talk diary interview) When a nurse comes to see you at home, what happens? They dont come Monday, Tuesday, Wednesday What sort of thing happens when they come, what they do? Nothing. Nothing? They just do my dressings. (1st childrens group)

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Increasing positive regard for nurses

ve +ve

Negative regard for nurses Not rationalised Associated with poor understanding of illness Less involved in own care

Positive regard for nurses Rationalised (they make me better) Associated with good understanding of illness More involved in own care

Increasing illness understanding and involvement in care

Figure 2. Continuum of childrens regard for nurses

Childrens position on this continuum of regard for nurses and nursing may be determined by their understanding of their illness and the extent to which adults allow them to be involved in receiving care (see Figure 2). In this study the childrens regard for nurses did not seem to be influenced by whether the intervention they received was painful. Children with both positive and negative regard stated that what nurses did was painful. Nor did a difficult diagnosis seem to affect childrens views, both Kelly and Honeys mothers reported that the girls had symptoms which went untreated for some time before eventually being diagnosed and accessing treatment, but they had different regard for nurses. Eliciting the understanding of children in the non-core group was more difficult because of the short period of observation. The opportunities to address the relationship between children and the researcher as an adult were restricted by the nature of the observations of nurses work. The time spent with the children was determined by the nurses and was often brief. There was little opportunity to talk to children away from their adult carers. Children who did attempt to express negative views of nurses were often deemed, by nurses as, grumpy or hospitalised. However, the observation of non-core group children did reveal similar strategies used by the children to be involved in receiving care as demonstrated in the field notes below:
[The] Family are tired back from holiday late last night. Mother opens negotiations checking when ready mentions sing song. CCN 10 distracts by discussing auntys holiday gifts. Mother insists time for inject; Child C resists protests, child delays talking about future holiday plans. Bribed with cuddle from dad, threatened with removal of dads cuddle. Child C takes Mr Bump [an ice pack] off throwing it away and hides beneath cover (gives permission to do injection takes control) injection done. (Field notes observation of CCN10)

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Discussion Limitations of the study

Guba and Lincoln (1989) suggest that the concepts of credibility, dependability, confirmability and transferability are used to asses an overall trustworthiness of a piece of qualitative research. Credibility in this study was enhanced by the triangulation of data over time, as data were collected from children at separate times of day, for over a year. The triangulation of space was addressed by collecting data in group settings as well as in the childs own home, and the triangulation of persons was met by collecting data from children, parents and nurses. The use of participant verification also adds to the studys credibility (Polit and Beck, 2004). Dependability and confirmability were addressed by the triangulation of data and by the researchers interpretations of the data being scrutinised by two supervisors and an independent childrens nursing expert. Transferability is addressed by giving a detailed description of the childrens backgrounds (see Tables 13). In addition to trustworthiness the actions of gatekeepers, as described by Cree et al. (2002), need to be considered. Some adults, acting as gatekeepers, found the idea of children holding negative regard for nurses difficult and there was some evidence that adults agreed to childrens participation only if they felt the child would give a positive view. The findings may therefore be biased towards a more positive view of nurses and nursing. Staniszewska and Henderson (2004) found a similar positive bias in their study of adults views of healthcare. Although it is suggested here that the findings of this study point to a continuum of regard for nurses and nursing it is also possible that childrens regard is part of an adaptation to living with illness. Because this was not a cohort study, it is possible that children could be at different stages of adaptation.

Implications
While hospital studies of childrens views of nursing have focused on the personality and competency of the nurse (Brady, 2009) and on the disruption to the childs normal life as caused by hospital admission (Coyne, 2006), previous studies have not focused on how children regard nurses. However, the findings of this study seem to suggest that children receiving care in both hospital and community settings focus more on their family and friends than they do on nurses and nursing. Studies conducted in community settings have also focused on the nurses personality and satisfaction with services (Sartain et al., 2000, 2001; Carter, 2005), rather than how childrens understanding of care and involvement in care might effect how they receive care. In some studies the construct of good and not so good (bad) nurse has been used (Carter, 2005; Randall et al., 2008; Brady, 2009), but the findings of this study would suggest that children with negative regard for nurses will focus exclusively on the not so good aspects and those with a positive regard will report only the good aspects. This study does not indicate whether childrens regard for nurses is an important concept. As can be seen from the data extract above from the observation of Gizmo, children with negative regard for nurses, even those who vocalise such a view, still received nursing interventions. There may be long-term psychological problems which originate from children being forced to receive care, but as yet there is little evidence to support such a view. Restraining children, which may, in effect, force treatment on to them, is an accepted practice in childrens nursing (RCN, 2010).

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Guidance for nurses justifies such restrictive physical intervention or therapeutic holding on the basis that it is in the childs best interests as it facilitates delivery of care (RCN, 2010). The findings of this study could constitute what Meleis (2007) has described as concept exploration, where a concept not currently within the lexicon of nursing is identified. The concept here is that children have negative and positive regard for nurses. As Meleis points out, the concept can be one which is familiar to nurses in their daily practice, but which has not been articulated and explored. The next step is to clarify the concept through further study and research. Acknowledgements This study was undertaken as a part of doctoral study at the University of Warwick (Randall, 2010). Thanks are due to Dr Clare Blackburn and Dr Ann Adams, of the University of Warwick who acted as supervisors and Professor Jane Coad (Coventry University) who advised on the project as an independent childrens nursing expert. Thanks are also due to Dr Robert Williams (University of Birmingham) for his help with the researcher bracketing interviews. References
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