Bereaved parents’ experiences of research participation

Study design

The Bereaved Paediatric Intensive Care Unit (PICU) Parent Study explored bereaved parents’ experiences of the death of their child in the PICU, and their subsequent follow-up care [14]. In order to check on the wellbeing of participants, follow-up phone calls were undertaken by the research team 1 week after their interview, with parents asked to reflect on their experiences of research participation.

Setting and participants

Twenty-six bereaved parents from 18 families took part in The Bereaved PICU Parent Study. Parents were recruited using purposive and theoretical sampling from four Australian PICUs by social workers involved in routine bereavement follow-up or via mailed letters 6–48 months after their child’s death in 2015–2016. For the primary study they took part in audio-recorded, semi-structured interviews at a time and location of their choice, conducted by the first author, a PICU nurse with prior qualitative research experience who was unknown to the participants. Participants were also advised that they would be called by a member of the research team within 1 week of their interview to ensure their wellbeing and to discuss their experiences of participating in the study.

Research process

Data analysis

Data from the follow-up interviews were subjected to descriptive content analysis, informed by the processes described by S Elo, et al. [15]. Content analysis is used to explore common issues and experiences within a set of data from both a qualitative and quantitative perspective [15, 16]. It involves establishing categories which describe the data, and identifying the frequency with which they occur, proving both a qualitative overview of the key concerns for participants and an indication of how commonly they occurred [17].

Data analysis was primarily undertaken by the first author, in consultation with the research team. The ‘preparation’ phase of content analysis commenced by identifying each individual question within the follow-up interview as the units of analysis, and re-reading the data multiple times to facilitate familiarity. During the ‘organising’ phase, open coding was undertaken, with common codes within each question grouped into categories. Where possible, these categories were further grouped based on similarities, which allowed key concepts in each question to be described and explored. Frequencies of each code and category were also identified at this stage, and analysed using descriptive statistics.

Ethics

This study was reviewed and approved by four human research ethics committees. Written informed consent was provided by all participants prior to their interview, with verbal consent reconfirmed at the commencement of each follow-up phone call. Participants were encouraged to rely on personal coping strategies during and after their interviews, with breaks from the interview process utilised as required. Social workers associated with the study were also available for follow-up care of participants if ongoing distress was noted during the interviews or follow-up calls. In order to protect participants’ privacy, all data have been de-identified, and pseudonyms are used for all participants and their children.

The timing of research contact

Initially, we contacted parents 6–18 months after the child’s death in the PICU. This time frame was chosen to avoid early intense grief, and to minimise the impacts of memory and recall bias on data collection. However, due to lower than anticipated recruitment within this timeframe, we extended an invitation to all bereaved parents up to 48 months after their child’s death.

Though five parents specifically suggested avoiding contact within the first 12 months as “the pain might be too fresh” (Erin), this opinion was not shared by parents who actually took part before the 12-month anniversary of their child’s death (Layla, Hannah, and Daniel). These three parents all felt that waiting longer than 12 months may have impacted their ability to remember exactly how they felt and what they needed, and felt that talking about their experiences helped them realise what they currently wanted and needed for support, as none of these parents had received follow-up care from the hospital or other bereavement services. In addition, one couple (Zara and Ryan) who participated at 18 months also mentioned they would have preferred to be contacted before 12 months, as the interview offered them a chance to debrief after their child’s death that they had otherwise not received, as no follow-up care was provided for them.

For the 9 parents who took part more than 2 years after their child’s death, four parents felt this timeframe was “okay” (Eva) but would have preferred to take part earlier in their bereavement because they felt they would have remembered their experiences more clearly. The remaining parents were happy with the contact time frame, suggesting that it provided sufficient time to work through any issues they had experienced. Erin also suggested that opportunities to discuss her child with family and friends lessened over time, and noted that the interview offered a forum to talk about her child when there was otherwise “no space to talk about [her]” in daily life.

The method of research contact

Due to differences in local site requirements, we used three methods to invite potential participants into the study. At hospital 1, we were able to obtain contact information for eligible families and send an invitation letter directly from the research team. Hospitals 2 and 3 requested that social workers approach eligible families to obtain permission for research letters to be sent from the research team. Invitation letters at Hospital 4 were sent from a hospital based research nurse on behalf of the research team, with an enclosed ‘consent to contact’ card for interested parents to return. All mailed letters were then followed up with a phone call 2 weeks later. Further detail of our recruitment procedures has been published elsewhere [18].

Overall, 17 out of the 19 parents who provided direct comments felt that letters were an appropriate form of initial contact with bereaved families, regardless of whether the letter came directly from the research team or from another hospital staff member. Only 1 parent suggested a phone call would have been preferred as the initial contact method (Layla), and one parent did not share an opinion. Parents commented that a letter was a sensitive way to invite them into research participation, as it gave them time to consider the research project and make an appropriate decision, rather than being “put on the spot” (Connor). Many parents also felt a ‘cold-call’, or an unsolicited phone call from a research team member, would be an invasion of privacy and would be too shocking to enable them to consider what was being asked. Three parents from hospital 4 did mention they were confused by the arrival of a letter from the hospital, particularly in the absence of any previous contact, and noted it was helpful to have the name of the researcher and the research study on the back of the envelope. Many parents from hospital 4 also commented favourably on the use of an ‘opt-in’ card they could fill in and return if they were interested in the study; they suggested that this method of contact left the decision to participate entirely up to them without any pressure from the research team or hospital, and required no effort if they did not want to take part.

Four out of five parents who were initially approached by social workers also provided comments during follow-up phone calls. These parents all felt that contact through social workers was appropriate, but noted that this was only because they already had ongoing personal relationships with the social work team through routine bereavement follow-up. A follow-up letter and phone call from the research team was still desired, as it gave parents time to recall what the social worker had mentioned during the initial phone call, think of questions for the research team, and make a decision.

The location of the interview

Parents in our study were encouraged to choose an interview type (face to face or phone) and location that was comfortable and convenient for them. The vast majority of parents (20 parents from 12 families) preferred face to face interviews in their own homes. Parents commented that discussing their child’s death was easier in their own home environment as it provided comfort, reduced feelings of vulnerability, and offered sufficient privacy for emotional expression. In addition, the home environment contained positive memories of the deceased child; for some parents, these memories provided comfort, whilst others felt more able to share their child’s life with the interviewer. For these reasons, the family home was often considered a “safe place” (Edward). In contrast, nine parents specifically mentioned that returning to the hospital for interviews would be too difficult, as that was “where it [the child’s death] happened” (Edward). In addition, parents commented that returning to the hospital added many logistical challenges to an already difficult task, such as locating and paying for parking, and having to drive home afterwards.

Only one parent (Emma) chose to do a face to face interview in a location other than her home. At her request, Emma’s interview was conducted in a private office in one of the university buildings. At the time of her interview, Emma was living in shared accommodation, and did not feel her home offered adequate privacy. However, Emma was also uncomfortable returning to the hospital, and noted she would not have participated in the study if the only alternative location for her interview was at the hospital, reinforcing the need for flexibility in interview locations.

Five parents preferred to participate in phone interviews. All three of the parents who were followed up noted that it would have been “too hard to meet face-to-face” (Eva). These parents commented that they would have either felt uncomfortable expressing their emotions in the presence of a stranger, or felt that they would have been more emotional talking about their experiences face-to-face than over the phone. One mother appreciated that there were options and that she could choose what suited her best, stating that if the only option was a face-to-face interview, she would not have taken part because she felt it would have been too difficult to talk about her experiences in person.

Overall experiences of research participation

Although comments such as ‘It was difficult’ and ‘it was painful to talk about’ were common, all 24 of the parents who provided feedback on their research experiences mentioned that they were pleased and thankful to have taken part. They saw having a forum to talk about their child as a benefit; Erin said “It was good to talk. I haven’t told the story in a long time”, while Layla expressed gratitude to the researchers: “Thank you for listening and taking the time to know his story.” Importantly, none of the parents who participated expressed any regret over taking part, nor any concerns about their experience. Instead, many commented that they had “got a lot out of it [the research interview]” (Charlie).

Overall, half of the parents who were followed-up mentioned that they experienced increased fatigue, and increased episodes of crying, numbness, or heightened emotional distress in the 24–48 h after their interviews. However, the parents did not view these emotions negatively; instead, most commented that the interview provided a sense of emotional release that allowed them to “get [things] off your chest” (Charlie) or “take the weight off your shoulders” (Zara). Evelyn said “It really hit home … but it was a good release” while Alice commented “I cried, but I’m not too upset. Overall, it’s a positive experience.” Many suggested that despite the difficulties, it was “better to talk about it” (Eva) and remember their experiences, both positive and negative. Three couples suggested that the interview provided a space for them to talk about their experiences together for the first time, whilst another mother appreciated the opportunity to have a conversation entirely focused on her child, suggesting that research participation may be highly valued by bereaved parents. This is supported by the fact that not all parents in our study noted significant emotional distress after their interviews. Twelve parents commented that they felt okay or even ‘good’ after their participation, suggesting that perceptions of bereaved parents as especially ‘vulnerable’ to emotional distress might not be accurate.

Finally, many bereaved parents shared their motivations for participation in the research study. For most, the desire to help others and improve the experiences of families in the future was the main influencing factor in their decision to take part. Some parents, like Evelyn, felt like they were “flying blind” in the PICU, with no idea of what would happen during or after the death, and no support available to them. As a result, many wanted to take part in the research study because “if some of the systems can change because of Henry and because of what we put into this research, all the better for it” (Evelyn). For some parents, participation in research also allowed them to keep their child’s memory alive, “connect[ing] us with our child” (Charlie) or “acknowledg[ing] her life” (Erin), or create something positive from what had often been an otherwise traumatic experience.

Strengths and limitations

Our study was strengthened by the inclusion of both mothers and fathers from four different hospitals, whose children suffered from a variety of acute and chronic illnesses and injuries, and who experienced varied follow-up care, increasing the transferability of our findings. Findings are also reported according to the Consolidated Criteria for Reporting Qualitative Research [40]. However, there are some limitations to our study.

Firstly, the opinions of bereaved parents provided are only from those who had agreed to participate in the study, and who may have been more inclined to view bereavement research favourably. The views of parents who had chosen not to take part are unknown, and as such it is unclear whether some aspect of the recruitment process or contact timeframe influenced their decision not to participate. Where possible, we did attempt to enquire about the reason for their decision not to take part. Though responses were limited, most parents cited a lack of time or the desire to ‘move on’ as the primary reason for not taking part, rather than any specific concerns about recruitment timing or methods.

The findings were also limited by the fact that not all parents were able to be followed up directly. Two parents were lost to follow up, and five parents had comments relayed by their spouses. It is possible that these parents had negative comments that were not expressed to the research team, or were misrepresented by their spouses. However, the comments provided were consistent with the broader comments offered and offer valuable insights into the parents’ experiences.

Finally, participant feedback during follow-up phone calls was solicited by the same researcher who met with the parents and undertook the research interviews. Some parents may not have felt comfortable expressing negative or critical opinions of the research process to someone they had already met, which may have led to a higher incidence of positive feedback. However, similarly to the findings of J Hynson, et al. [10], a significant number of participants also spontaneously expressed positive feedback on the research process during or after their recruitment or interview participation, which suggests that our method of soliciting feedback was not a major limitation to the trustworthiness of the findings. In future studies, it may be beneficial to adopt alternative methods of seeking feedback about the research process, such as a survey or through a non-interviewing member of the research team, to ensure parents feel free to express both positive and negative feedback without fear of offending the interviewer.