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The research article “Hope for the Best, prepare for the Worst” (Lotz et al., 2016) was published in the Journal of Palliative Medicine. The sample characteristics and study findings are summarized. The study design and underlying ethical principles applied in the research design are identified and further discussed.
The research was a qualitative study on parents’ needs and fears in pediatric advance care planning (ACP). 12 parents of 10 deceased children were invited at the beginning of the sampling, and at the end there was 11 parents of 9 children agreed to participate in the research. The medical team members should respect the parent’s wishes by increasing the chance for the patient’s parents to be involved in the ACP, which might improve the quality of the family-centered approach in pediatric palliative care and help the parents could adopt the fact of their children was coming to the end stage of their life sequentially. However, there were factors that affected the advanced care planning and surrogate decision of pediatric patients and their family members under emotional distress.
How it works
The study’s aim was to investigate the bereaved parents of children who had died from severe illnesses through qualitative interviews. The information and the data were analyzed by descriptive and evaluation coding, according to Saldaña (2016). There were 11 parents who participated in the interviews; the maximum variation was found, which was related to the child’s illness, age at death, care setting, and parent gender. As a result, the participants expressed that pACP was critical for cooperation between medical team members and parents, especially for effective communication. However, the parents suggested that the pACP was difficult to engage.
They expected that pACP was the sensitive, individualized, and gradual approach; the major issue that the parents were concerned about was their child’s hope and quality of life in the latest stage. Parents pointed out that providing continuous medical care and information regularly during the pACP meetings with the various care providers could enhance planning efficiency. Also, the participants emphasized that continuous contact person facilitating the pACP was also important. In conclusion, pACP enhanced the informational psychological support for the related families. Therefore, ACP had to be adjusted the content and continuity of communication. Also, facilitating parents to engage in pediatric palliative care planning would be a main concern in future research to enhance the quality of support for bereaved families.
Research ethics means a set of moral values or belief that was concerned with doing the study, and research procedures were linked with professional, legal, and social obligations in the participation. There were three fundamental principles of research ethics which were respect for persons, beneficence, and justice.
The principle of respect for a person consists of two elements that compact with respecting people regarding research, including the right to self-determination and full disclosure (Vanclay et al., 2013). Firstly, treating people as autonomous mean people have a right to have their own decision-making on what to do and what to agree to. The participants should make their own decision in the research, which the researchers must respect. Before the research, the participant had a right to get comprehensive information about the study and decide whether to participate or not.
Furthermore, people with diminished autonomy should be protected, such as young children and patients with terminal illnesses or mental disabilities, and the inability to make fully informed decisions about what they do or what happens to them (Oliver, 2011). These people should be protected and only be included in research under specific circumstances.
The principle of beneficence refers to the operation done for others got advantages which represented that the research should not cause harm to the participants and the community under strict obligation, according to the Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). Nonmaleficence means doing no harm to the participants during the research regarding physical, psychological, social, and economic harm (Vanclay et al., 2013). The research should be conducted without an unfair process and maintain a balance of risk and benefits caused. Healthy research was aimed at discovering knowledge or information which could be helpful to the community and never hurt anyone or find out information at the expense of other people. Also, the research should maximize the benefits and minimize any harm and risks for the participants.
Lastly, the principle of justice refers to the fairness in distributing benefits and risks among parties in the study (Vanclay et al., 2013). However, according to the Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979), the principle of justice can also be conceived as everyone should be treated equally. The right to privacy, confidentiality, and anonymity of the participants should be respected equally to the non-participants with basic requirements.
To begin with, according to the principle of beneficence and nonmaleficence, the investigator considered that the potential benefits to the participants and the contribution to the professional knowledge outweighed the potential psychological distress in this nontherapeutic research.
Although the article did not mention the potential benefits, a similar study on bereaved parents showed a majority of participants provided positive comments on their research experiences, such as feelings of emotional release (Butler et al., 2018). Apart from the potential emotional release to the participants, the study findings contributed to the knowledge and facilitation of formulating concrete therapeutic recommendations for pediatric palliative care services.
The participants were the parents of deceased offspring, who were defined as a highly vulnerable population in the research field. Intensive and persistent grief reactions such as depression, anxiety, and guilt were common in bereaved family members (Lichtenthal et al., 2015). Besides, this study focused on the ACP, so the questions of the interview inevitably involved sensitive topics about the bereavement process and the opinion of the health professionals during advance care planning. There is a possibility that the support from the professionals was not satisfactory, so the participants might experience unusual levels of temporary discomfort because they were asked to recall prior emotional burdens and traumatic experiences (Grove et al., 2012).
Therefore, there were several measures to minimize such drawbacks. To begin with, the prior study showed that bereaved parents preferred to participate in interviews after six months or within 12–24 months after the death of their offspring (Butler et al., 2018). It was an appropriate selection criterion to choose bereaved parents at least six months after their child’s death in this study. However, most importantly, the participants should be acknowledged and confirmed with mental readiness and willingness in addition to the agreement in the consent form.
Although no incentive and compensation measures were mentioned in the article, the interviews were conducted by qualified psychological professionals Julia Desiree Lotz. Qualified interviewers can build researcher-respondent relationships and rapport to subtle psychological consequences before, during, and after the interview in order to minimize the potential harm to the participants (Sivell et al., 2015). Although it was not indicated in the article, the interviewer should be sensitive to the suspected undue emotional distress of the participants during the interview. If the need to terminate the interview is suspected, participants should be asked whether they are willing to continue with the conversation (Sivell et al., 2015).
Regarding the right to inherent human dignity, this study respects the right to full disclosure of the participants, which information in the valid consent covers all the relevant matters for a person’s voluntary choice and action (Dranseika et al., 2016). The information sheet clearly indicated the information of the research team, the purpose and procedure of the study, and the possible risks and benefits. Although it was not mentioned in the article, the potential participants should verbalize their understanding and agreement of the information sheet and consent form so the consent was appropriately and validly informed.
In addition to the right of full disclosure of relevant information in the consent, the study respected the autonomy of participants, including the right to withdraw at any time, the right to ask questions or seek clarification, and the right to refuse to give any information (Gupta, 2013), which were clearly indicated in the consent form. It is also important to highlight that the grieving process of the participants and the advance directives of their children were highly personal. If the participants were not comfortable sharing any information, the investigators did not have the right to get data against the participants’ will.
In addition, the study respected the principle of justice in research studies. To begin with, there is no dual relationship between the research team and the interviewees. According to Mecca et al. (2015), disclosure is the prerequisite protocol to maintain integrity and reliability in scientific research. In this study, the participants were contacted by a research team member, Monika Führer, via phone or email, while the interviews were conducted by Ms. Lotz. None of the participants was acquainted with the interviewer before the research. Therefore, the research team declared no potential conflicts of interest.
Furthermore, the participants had the right to privacy. Investigators should refrain from collecting identifiable personal details that are not relevant to the research question (Sanjari et al., 2014). The sociodemographic information, including the age, gender, and profession of the participants, the gender, illness, date, and place of death, age at death and a number of family members of the child, and the completion of the palliative care, was collected necessarily for the analysis of the research study. Moreover, according to the European Commission (2018), the consent should be with the confirmatory indication of the agreement to acquire and process the personal data, including the publication of anonymized information in the report.
The investigators highly valued the right to confidentiality and anonymity of the participants. Firstly, the right to confidentiality refers to the right to expect personal information to be kept in the strictest confidence (Profetto-McGrath et al., 2010). Although it was not mentioned in the article, according to the Royal College of Nursing (2004), there are several measures for data protection; for instance, all computer files should be encrypted, handwritten notes and other documents should be stored and locked in a cabinet, and only research team members or authorized consultant could assess the data and information. The location of the interviews should also be private and quiet, such as a comfortable meeting room, to avoid interruption and maintain confidentiality (Bolderston, 2012).
Moreover, the article mentioned that all interviews were audio-taped and deleted after the verbatim transcription, which followed the principle of data minimization, according to the European Commission (2018). All the study protocols and materials were reviewed and approved by the institutional review board of the local University Hospital (no. 049-12).
Finally, for the right of anonymity, the identity of the participants should not be recognizable in research reports or any publication of study findings (Royal College of Nursing (2004). The study indicated that personal identifiers, including personal names, places, and institutions, were irretrievably anonymized. However, in order to distinguish different participants, unique combinations of characteristics can be used as identification coding (Kaiser, 2009). In this study, the family role of the participant and the age of death, gender, and illness of the child remained as identifying information in the study article.
In conclusion, comprehensive research should follow the principles of autonomy, beneficence, nonmaleficence, and justice in order to protect the participants’ inherent rights and preserve the truthfulness of scientific research, which maximizes the benefit to the participants, professional clinical knowledge and practice, and society.
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