Ethical issues

This section deals with the ethical issues which this study raised. As well as issues which may be found in many studies, such as ethical approval and funding issues, there were aspects such as researching with children living with illness and gender which were more pronounced in this project.

5.2.1. Research with children living with illness

The production of ethical guidelines for those doing research with children indicates that children are seen as a vulnerable group in society and in need of protection from researchers (Alderson 1995, Medical Research Council 2004, Carter 2009). If all children, as a social group who may be assumed to be generally healthy are seen as vulnerable, those living with illness are arguably even more vulnerable (Broome et al 2001). The Medical Research Council (2004) guidance suggests that research with children should only be undertaken if the relevant knowledge cannot be achieved by doing research with adults and that the purpose of the research is to obtain

knowledge about children’s health, or health care. This study meets both these criteria. The study is about the health care that children receive, delivered by nurses and is about children’s experiences and therefore must involve children. Scott (2000)

has argued that adults cannot answer for children’s experience. In health care, Knutsson et al (2006) showed that parents, nurses and children had different

perceptions of pain. This supports the notion that children and adults may not share the same perceptions of health care and justifies the involvement of children in this research.

Berman’s (2003) argument may also apply. Berman argues that adults’ perceptions of children as vulnerable and in need of protection serve to silence children. If adults perceive of children living with illness as exceptionally vulnerable and less

competent than well children, they may act more vigorously to “protect” these children, excluding them from research studies. These children’s voices are then often silenced (Coad and Shaw 2008). However, there seems to be no evidencethat children living with illness find participating in research burdensome, or that it negatively affects the management of their illness (Broome et al.2001).

For children living with illness, being involved in research may provide some benefits. Participation in research which values their voice may allow them to communicate with their parents, other adults and with health care professionals in ways perhaps not open to children under normal circumstances. Just participating in research that focuses on their experience may alter the dynamic between child, parents and health professional, which is often adult centred (Shin and White-Traut 2005), allowing children to perhaps be more assertive in their health care. Having their voice heard in their health care may also improve children’s self esteem (Abbott et al 2008)

Children receiving nursing care at home may be isolated by their illness, which prevents them attending school. They may be further isolated because their nursing care is not being delivered in a public space, such as in a hospital setting, but at home. Children experiencing nursing in hospital do so as a group, albeit a transient group. In the hospital children are gathered together, often on the basis of health condition, and are placed in close proximity. This does not apply to children in community settings where nursing care is delivered in isolation. The use in this study of social trust building events and group activities allowed children to meet others with similar health needs. These opportunities to share experiences may lessen children’s sense of isolation. This in itself is justification for children’s involvement in the study.

However, research with children, or adults may touch on difficult and painful experiences, as indeed this study did, raising issues for children about the hurtful nature of nursing and about being different from their peers. Although telling a stranger about these experiences may be traumatic, it may also be cathartic and therapeutic. Whether such therapeutic gains or other altruistic motivations are factors in the motivation of children to take part in research studies, is unclear. Although Ashcroft et al. (2003) claim that when children have experience of research studies they can give clear and often altruistic reasons for participating. Thus arguments for children’s participation, as those for adults, may include altruistic motivations, such as the benefit to future children derived from improvements in care that arise from the study, but which may not benefit the participants themselves.

5.2.2. Ethical approval

This study involved children who receive community children’s nursing services from the National Health Service (NHS). Ethical approval was therefore sought from the Central Office of Research Ethical Committees (COREC), a predecessor of the National Research Ethics Service (NRES), through the Solihull Local Research Ethics Committee (LREC). Access was negotiated with all relevant NHS organisations via their respective Research and Development Departments. Community children’s nurses delivering care, and their direct line managers were involved in the early development of the study. This involved negotiations with three separate NHS organisations, two Primary Care Trusts and one hospital NHS Trust. Three substantive amendments were applied for and approved by the LREC during the study.

5.2.3. Funding issues

In the second year of doctoral studies the principal researcher was awarded a Leading Practice Through Research Award from the Health Foundation. The award fully funded all aspects of the study. This allowed the principal researcher to devote 2 days a week to the study. The award also paid for social trust building events, group activities, co-workers’ costs, translation costs and arts consultants.

The source of funding for research may influence the focus of a research project. However, the Health Foundation is an independent non-governmental charity set up in 1998 with an endowment from the sale of PPP Medical Healthcare. The

Foundation funds projects across the health care sector with no particular focus on children or children’s health care (The Health Foundation 2009). As the Health

any other competing services to children it could be argued that the funders’ interest in influencing the findings of this study were minimal. However, the focus on health service improvement, which is a concern of the Health Foundation, ensured that the study remained focused on the potential implications for community children’s nursing services, rather than an emerging children’s agenda not related to healthcare e.g. such as children being like their peers.

As adults are often given incentives to participate in social research it seemed fair, and in line with ethical symmetry, to offer this to children also. However, as Cree et al (2002) discovered, offering incentives can be difficult, as the incentive rather than interest in the research topic can become the main motivation for participation (Cree et al 2002; Curtis et al. 2004). In this study children received incentives in terms of fun activities, opportunities to network with other children, and sharing food at the groups. In addition, for core group children, after the child’s contribution had ceased, a £10 book voucher was offered by way of thanks for their time and comments; but neither children, nor families were informed of this before or during the study. This policy of not informing participants of this benefit was used as it was felt that some children and or parents may participate for the financial reward, if this was known at the outset.

5.2.4. Gender and research with children

The ethical approval process highlighted interesting dilemmas in conducting research with children. It was strongly suggested, both at the ethical review meeting and in subsequent correspondence, that the principal researcher, as a male researcher, would need a chaperone in order to interview children away from their parents or main

carers. The focus of discussion at the ethical review was very much on child protection, rather than methodological issues.

This may reflect the view of male nurses as described by Evans (2002), where men who deliver nursing care are deemed unorthodox, suspicious and even sexual predators, while caring by women is seen as “natural”. Although the evidence is anecdotal, female colleagues who research with children report that in similar submissions to various ethical committees the focus has been on methodological issues rather than child protection. Issues of men as suspect researchers were also described by Scourfield and Coffey (2006), when Jonathan Scourfield sought access to men who abuse children. He found himself being accused by social work

colleagues of paedophilia by association. Rather than rejecting such accusations as prejudice, it may be helpful in understanding such reactions to compare and contrast how perpetrators of sexual abuse operate, with the behaviour of researchers as suggested by established research protocols.

Finklehor’s model of child sex abuse (Finklehor 1986), would suggest that gaining private access to children away from the public gaze is essential to any potential child abuser, as abusing children in public would quickly result in the perpetrator being vilified. Child abuse is a common taboo and in most cultures is deemed illegal. Abusing children would normally result in the perpetrator being removed from children through incarceration and or distrust and increased surveillance. Abusers of children who want to maintain their access to the child seek to keep their abusive behaviour secret from the rest of society in order to be able to continue with the abuse. In this study the request to see children away from their main carers could be

misinterpreted as seeking an abusive opportunity for privacy to abuse, rather than seeking to hear children’s voices and to reduce the influence of adults. According to Finklehor’s model, abusers work by ensuring a degree of secrecy, to ensure that the child does not tell others in the society, which again could result in the perpetrator being “discovered”. Often the building of such secret relationships is referred to as “grooming”. For research with children, the language of consent has a great deal of potential for being misinterpreted as “grooming”. In establishing consent, the researcher and child are entering into a “secret arrangement” where what the child and researcher do in the study is kept “secret”, or confidential from others, much as a paedophile would use secrecy to prevent detection (Finklehor 1986).

Mindful of these potential problems, guidance was sought from the Royal College of Nursing on care of children in community settings (Royal College of Nursing 2001). This guidance recommends that care is either delivered in the presence of parents, or by two members of staff. Given that the concerns of the ethics committee may be shared by parents, as the mistrust of men in caring roles seems widespread (O’Lynn 2007, Evans 2002) and that the professional community suggests chaperoning in this situation, the principal researcher decided to accept the ethics committee suggestion and use a co-worker when interviewing children at home away from their main carer. However, it is acknowledged that the presence of a co-worker may have altered the dynamic between the principal researcher and the children. Of course it is possible that the principal researcher and co-workers may collude in abusing children. There have been a number of high profile cases where adult men and women have worked together to abuse children (Gibson 1995). The use of a co-worker then should not prompt the abandonment of measures to safeguard children from abuse. In this study,

all those working directly with children had enhanced Criminal Records Bureau clearance and information was provided to children and parents about how to make a complaint to the nurse responsible for safeguarding children in a local NHS trust. Participant information also included details of sponsors of the research to whom more general complaints could be addressed (Appendices 7, 8, 11and 12).

A favourable ethical opinion was received from Solihull Local Research Ethics Committee, once co-workers and measures to emphasise safeguarding children were written into the study protocol and participant information sheets. However, as Masson (2004) has pointed out, gaining access in research with children is more complex than simply gaining ethical acceptance. Rather, researching with children requires reflexivity around the researcher as a social actor, the environment and the social setting of the research.