Ethical Considerations

Research involving palliative care patients has been challenged as being inappropriate because it is disrupting the short time left to the patient (Ross and Cornbleet 2003; Seymour and Ingleton 2005, Calman and Hanks 1998). However, I adopted the approach that by taking due care and attention to the rights of all individuals involved, palliative care research can be both rigorous and ethical. My experience with research committees and more recent literature (Rodin 2013, Hughes 2006, Murray and Sheikh 2006) supports this idea.

The care that patients received was not changed by this study. The ward nurses remained responsible for the care given to the patient. The time I spent becoming familiar with the workings of the ward, combined with my palliative nursing experience, allowed me to assist with care as part of the nursing team. There was still a risk that having a researcher present could change the interactions, so I kept a reflexive diary (excerpt in appendix 1) to record my feelings about this. These factors helped to maintain ethical integrity throughout the study. Additional ethical issues are described below using Beauchamp’s key principles of ethics (Beauchamp and Childress 2001, Murphy and Dingwall 2001).

3.2.1 Consent

In any research study it is ethically important to consider the issue of consent to participate. If a decision has been made in observational studies that individual participant consent is required, it is vital that the researcher ensures at each stage that participants are happy to continue their involvement in a study (Silverman 2013, Seymour et al. 2005, Lawton 2001). The process of verbal and written consenting of participants is described in section 4.1.3.

Continued consent was verified verbally during each stage of data collection. No participant who gave written consent to participate in the study withdrew their consent as the study progressed. However, some patients’ conditions deteriorated during data collection to the extent that they had to be withdrawn from the study.

3.2.2 Non-maleficence and beneficence

The issues of not doing harm to, and aiming to help, research participants can be considered simultaneously. The most potentially damaging, or helpful, aspect of this study was interviewing. Revisiting psychosocial needs, or the response given, had the potential to upset patients or nurses – in the latter case, because they may recognise deficiencies in the care they provided. A sensitive, reflective, counselling-skills approach to the questioning was used to minimise the risk of introducing new, potentially upsetting issues. In some cases this approach helped participants to see value in what was observed. My extensive experience as a palliative care nurse enabled me to recognise if anything that was being discussed was distressing an interviewee. I was able to deal with any distress appropriately, either by myself, or by arranging for someone else to help the interviewee.

3.2.3 Autonomy/self-determination

The overt nature of the research gave all potential participants ample opportunity to choose whether or not they wished to participate: I wore a different uniform from all other staff, as a reminder of my different role. The study was well advertised by presentations, posters, and information sheets to everyone in the ward. Autonomy, the right to choose (in this case whether to participate), was further ensured by: obtaining consent in writing from each participant; re- confirming consent at each phase of data collection; and reminding participants that they could withdraw consent at any time, even temporarily. Repeatedly checking the participants’ continuing consent to participate also protected their privacy. Privacy was further protected by

minimising feelings of voyeurism or exploitation, through my active participant observer role in patient care.

Participants in this study were free to do and say whatever they wished without being judged by me. It was also important to protect research participants’ rights to share their views without being judged; I have done so by ensuring that confidentiality and anonymity are maintained throughout. Every participant has a pseudonym which only I can recognise. Due care has been taken to hide any identifiable characteristics which might allow internal recognition by hospice staff. For example, when a patient says something that makes nurses, or their colleagues, potentially recognisable, the distinguishing characteristic has been removed. Likewise, all efforts have been made to disguise the identity of the hospice in presentations about this study. Using a ‘realistic’ (Pawson and Tilley 1997) and reflective style of interviewing respected participants’ right to self-definition: sharing observations with the participants gave them the opportunity to clarify, or correct, my ideas about what happened, thus increasing the validity of the data. This process of self-definition for the nurses was enhanced by the collaborative approach to the research, whereby the nurses were given opportunity to comment on the analyses of the data (Bailey et al.2002, Murphy and Dingwall 2001).

3.2.3.1 Distinguishing Between Patient and Participant

The ethical right of self-determination is also protected by considering the changing roles of participants in observational research. Because I am an experienced, registered, palliative care nurse, who had spent time on the ward familiarising myself with the ways of the ward, I was able to provide the same care for patients as any of the nurses on the ward. Interactions between myself and patients only changed when I was interviewing them. This change was facilitated by moving from the patients’ usual ward environment, to a private room, and the presence of a tape-recorder. The ethical dilemma of patients not being acutely aware that they are currently

being recorded for research purposes was overcome by a commitment to ensure that their care was not compromised. Patients were given the opportunity to withdraw their observational data from the study when they were approached for interview. This offer was never accepted.

3.2.4 Justice

All potential participants were treated equally. All nurses were given the opportunity to consent to participate, and the off-duty rota determined whom I would observe. Participation was offered to all eligible patients who had the potential to be involved in the study. All other patients and people in the ward were informed of my role whenever I had contact with them. Everyone who consented was made aware that their participation would depend on whether a psychosocial need arose during my observations. I was very strict in only retaining data on individuals who had consented to participate in the study, and I repeatedly checked that the consent continued.

3.2.5 Ethical Approval

This study had ethics committee approval from Stirling University Nursing & Midwifery Departmental Research Ethics Committee (date of approval: 2nd _{August, 2004) and from the}

Local Research Ethics Committee (date of approval 30th _{June, 2004, appendix 2). The}

independent status of the hospice meant that the local Research & Development Office did not need to approve the study, however, they were advised of the study and agreed that it could go ahead.

3.2.6 Summary of Ethical Considerations

Much consideration was given to ethical issues throughout this study. The anonymity of all participants has been carefully maintained throughout and once written consent had been gained, consent was continuously verbally verified. Patients received the same care from me in

opportunity to voice their opinions about psychosocial support, without judgement. Throughout this thesis data excerpts and discussions refer back to these rigorously upheld ethical principles.