Despite a vast number of studies demonstrating that bereaved persons, particularly bereaved parents, find value in participating in research studies and talking about their experiences [8,9,10,11,12,13, 19], little is known about their experiences of the research process itself. Without this information, it is difficult to design recruitment strategies and identify appropriate locations for data collection that best facilitate the inclusion of bereaved families into research studies. As part of routine follow-up after participation in a bereavement study, we explored parental experiences of the research process, in order to shed light on their preferred recruitment timeframes, contact methods, and locations for data collection.
The majority of bereaved parents in our study felt that the most appropriate timeframe to contact them regarding research participation was 12–24 months after their child’s death, with five parents preferring contact from 6 months. In previous studies, researchers have attempted contact somewhere between 6 months to 4 years after death [9, 20,21,22,23,24,25,26,27,28,29,30], but there is little empirical research to support these decisions. Studies of parental grief trajectories indicate that the passage of time is only one factor in a complex process [6, 13, 31,32,33], and thus there may be no time period that is universally appropriate. Respecting parents’ autonomy by giving them the opportunity to participate if they wish to do so may be more important than attempting to find a timeframe that will be least painful . Parents in our study also supported the timeframe of 12–18 months as being optimal for recall. This presents a very narrow window for researchers that, as in our study, may be impractical. Researchers may need to balance parental preferences with pragmatic considerations. Though more research exploring bereaved parents’ preferred research contact timeframes is urgently needed, we suggest researchers consider approaching families 6 months- 2 years after a child’s death.
It is important to note that none of the parents in our study who expressed a wish for research participation prior to 12 months after their child’s death received any follow-up care from the hospital or other bereavement services. It is possible that their views are reflective of a desire for follow up care , rather than actual research participation. This presents a potential ethical dilemma for researchers, who could be seen as exploiting parents’ vulnerability. Though we recommend that parents still be given an opportunity to participate in research at this stage, heightened caution may be required. In addition, whilst research participation may be therapeutic for families, it cannot replace appropriate bereavement support, which should be provided by the child’s hospital or by local bereavement services [34,35,36]. It is important that researchers do not attempt to assume a counselling role.
During follow-up phone calls, we also asked the bereaved parents to comment on the way they were initially contacted for research participation and whether they would have preferred a different contact method. Consistent with previous studies of bereaved parents [9, 10] and bereaved adults more generally , parents in this study typically preferred that initial contact be undertaken via a mailed letter, rather than from an unexpected phone call. This was particularly true for letters that utilised an ‘opt-in’ approach, which placed parents in control of any further contact with the research team. Bereaved adults have also shown a preference for initial research contact through hospital personnel , though our experiences have suggested that this preference largely depends on a positive ongoing or pre-existing relationship with the staff member making contact. As such, we suggest that initial research contact with bereaved parents occur via a mailed letter that includes a reply-paid ‘opt-in’ card (with the study name on the outside to provide some warning), which both promotes parental autonomy and minimises intrusion and distress as much as possible.
Consideration of the location of research interviews is also particularly important when conducting bereavement research. Many parents in our study expressed a strong aversion to returning to the hospital, citing an association with negative memories and heightened distress. Instead, bereaved parents strongly preferred to be interviewed in their own homes. This location typically provided appropriate privacy and comfort, was noted to be a “safe place” for parents, and minimised parental inconvenience. The preference for interviews in the family home is not unique to our study, and has also been expressed by bereaved parents and siblings in previous studies [9, 10, 12]. However, five parents in our study preferred to do their interviews over the phone and did not find this format caused additional distress, and one parent preferred to be interviewed at the university, demonstrating the importance of providing parents with choices over where their interview takes place. As such, we strongly recommend that flexibility is ingrained into the research protocol, with bereaved family members offered various options for where or how their interview takes place, including in their own homes, to ensure they feel as comfortable as possible.
Within the current literature, it is becoming increasingly apparent that though bereaved parents find research participation emotionally painful, they still describe it as a positive experience and are thankful to have taken part [8,9,10, 12]. Our findings add weight to this concept, further demonstrating the importance of facilitating the inclusion of bereaved parents into research studies. For most parents, including those in this study, research participation provides a valuable opportunity to talk about their child that can often be missing in their daily lives, helps preserve their bond with their child by keeping their memory alive, and may help them to feel their child’s life and death had meaning and would be helpful to other families in the future [8,9,10, 12, 13, 37]. These findings also offer valuable insights into societal views of childhood death and longer-term parental bereavement. The fact that less-recently bereaved parents value research participation as a place to talk about their child that they do not have in daily life suggests a societal expectation to ‘move on’ from grief and, in a sense, act as though the deceased child did not exist . However, research demonstrates that bereaved parents never ‘get over’ their child’s death, and want to continue to incorporate their deceased child into their lives and talk about them no matter how much time has passed [38, 39]. Though a detailed discussion on ways to change societal perceptions of ‘acceptable’ parental bereavement is beyond the scope of this article, it is important for bereavement researchers to publicise these findings to the public as well as the academic community, in order to begin to ‘normalise’ parental bereavement experiences and needs.
Whilst including parents in bereavement research may provide some therapeutic benefits, it is also important that they are fully aware of all potential risks before deciding to take part. Aside from emotional distress during the interview, over half of the parents in our study reported ongoing heightened emotions and fatigue in the days following their interview. Though post-interview fatigue is briefly mentioned by both K Dyregrov  and JL Buckle, et al. , it has not been extensively discussed within the literature, nor noted as a consideration for bereavement research planning. Therefore, in addition to the likelihood of ongoing emotional distress, we suggest that the likelihood of increased fatigue in the 24–48 h following research participation be made explicit on participant information sheets. This way, bereaved parents are able to make informed decisions about research participation, and are empowered to schedule interviews so that they do not cause significant disruption to their lives.
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 . 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. , 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.