key: cord-0954060-ro5a4boo authors: Rugwizangoga, Belson; Niyibizi, Jean Berchmans; Ndayisaba, Marie Claire; Musoni, Emile; Manirakiza, Felix; Uwineza, Annette; Tuyisenge, Lisine; Nyundo, Martin; Hategekimana, Theobald; Ntakirutimana, Gervais title: Exploring Perceptions and Acceptance of Minimally Invasive Tissue Sampling among Bereaved Relatives and Health-Care Professionals in Rwanda date: 2021-12-15 journal: J Multidiscip Healthc DOI: 10.2147/jmdh.s340428 sha: baaa18f232f1628b835908efad82e59619d80ca2 doc_id: 954060 cord_uid: ro5a4boo PURPOSE: In most low- and lower middle-income countries (LMICs), minimally invasive tissue sampling (MITS) is a relatively new procedure for identifying the cause of death (CoD). This study aimed to explore perceptions and acceptance of bereaved families and health-care professionals regarding MITS in the context of MITS initiation in Rwanda as an alternative to clinical autopsy. METHODS: This was a qualitative phenomenological study with thematic analysis. Participants were bereaved relatives (individual interviews) and health-care professionals (focus-group discussions) involved in MITS implementation. It was conducted in the largest referral and teaching hospital in Rwanda. RESULTS: Motivators of MITS acceptance included eagerness to know the CoD, noninvasiveness of MITS, trust in medics, and the fact that it was free. Barriers to consent to MITS included inadequate explanations from health-care professionals, high socioeconomic status, lack of power to make decisions, and lack of trust in medics. Health-care professionals perceived both conventional autopsy and MITS as gold-standard procedures in CoD determination. They recommended including MITS among hospital services and commended the post-MITS multidisciplinary discussion panel in CoD determination. They pointed out that there might be reticence in approaching bereaved relatives to obtain consent for MITS. Both groups of participants highlighted the issue of delay in releasing MITS results. CONCLUSION: Both health-care professionals and bereaved relatives appreciate that MITS is an acceptable procedure to include in routine hospital services. Dealing with barriers met by either group is to be considered in the eventual next phases of MITS implementation in Rwanda and similar sociocultural contexts. Minimally invasive tissue sampling (MITS) refers to the diagnostic removal of organ tissue without resorting to major surgery or conventional autopsies. 1 MITS has been in use for many decades in different fields of human medicine 2 and veterinary medicine. 3, 4 In humans, MITS has been explored since the 1800s 5 for diagnosing diseases using noninvasive methods 2, 6 and in postmortem determination of the cause of death (CoD). 7, 8 In clinical autopsy pathology, the use of MITS is increasing 1 and is sometimes guided by imaging techniques. 9 ,10 MITS accuracy vis-à-vis conventional autopsy is excellent (sensitivity and specificity exceeding 93% and 99%, respectively) in determination of the CoD. 8 The excellent adequacy and reliability of MITS coupled with its time-and cost-effectiveness and less emotional stress for the bereaved family are among the motivators for the widespread use of MITS. 1, 11, 12 Additionally, MITS is considered a safer postmortem diagnostic procedure than conventional autopsy in cases of contagious diseases, such as COVID-19. 13 It is worthy of note that when compared to conventional autopsy, MITS has relatively lower sensitivity in terms of diagnosis and characterization of the extent of lesions. 5, 14 Nevertheless, the use of MITS in low-and lower middle-income countries (LMICs) is relatively new, with most countries having never practiced it or being at the stage of exploration, validation, or initiation. 7, 12, 15, 16 Studies have documented the acceptability of MITS among bereaved families and health-care professionals across different countries. 1, 11, 12, [15] [16] [17] [18] [19] The use of MITS in autopsy pathology is quite new in Rwanda, with the first occurrence being a feasibility study conducted from December 2019 to September 2020 on death cases eligible for clinical autopsy. 20 As such, it is necessary to explore perceptions and acceptance of MITS among health-care professionals and bereaved families whose beloved ones have undergone MITS as an alternative to clinical autopsy in Rwanda. This study intended to inform policy-makers on enabling factors and challenges encountered so far with MITS and thus improve the program. Furthermore, the optimal implementation of MITS would likely be an alternative to conventional autopsy pathology services, which are almost never exploited in most LMICs. 8, 18, 21 This qualitative study was phenomenological. This study targeted bereaved relatives who had consented to MITS as an alternative to clinical autopsy of their deceased relatives during December 2019 to September 2020 and health-care professionals involved in a pilot of the MITS procedure at the University Teaching Hospital of Kigali (CHUK). The volunteer-sampling strategy was used to select bereaved relatives to be interviewed. After a patient had died, a nurse or clinical psychologist approached a bereaved relative and asked them if MITS could be performed in order to know the exact CoD. Those who accepted were given a consent form providing details on MITS and this qualitative study. From a list of 100 bereaved relatives who consented to MITS, a phone call was made 2 months later to schedule a phone interview. Prior to data collection, data collectors were trained in qualitative data-collection methods. Individual interviews were conducted with the bereaved relatives and focus-group discussions (FGDs) with health-care professionals. An interview guide with the questions that would be asked was provided to the bereaved relatives explained by health-care providers about MITS. Participants were asked what they already knew about autopsy, new knowledge gained from health-care professionals, and what was difficult for them with regard to MITS. They were also asked about their reactions to the request to perform MITS, challenges encountered when they were counseled about MITS and asked to consent to having it performed on their relatives, benefits they got from the findings, advice they would provide to improve MITS performance, and why or why not they would encourage others to consent to MITS. Data saturation was reached at the eighth interview. The The data were analyzed using thematic analysis following the six steps described by Vaismoradi et al: 22 familiarization with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. An inductive approach was used during analysis, which was performed using Atlas.ti 7.5.18 (Atlas.ti Scientific Software Development). Prior to analysis, information recorded in the local language (Kinyarwanda) was simultaneously transcribed, then translated into English. Transcripts were read carefully to identify initial themes and codes. Thereafter, codes were inductively developed from the transcripts and subsequently analyzed using major themes with an iterative process. This report provides findings of individual interviews and FGD separately. Eight phone interviews were conducted with eight bereaved relatives. Most (five of eight) were women. Their age varied between 21 and 41 years, with most (five of eight) aged >30 years. Regarding the relationship of the bereaved and the deceased person, five of eight of the bereaved were sons or daughters, one a partner, one a sibling, and one a friend. The findings from individual interviews conducted with bereaved relatives are presented in three overarching themes: knowledge or information on MITS, perceived benefits and acceptance of MITS, and suggestions to improve the implementation of MITS. Themes are described separately, with quotes representing the obtained opinions. Some respondents in this study appreciated how healthcare professionals provided them with information about MITS. They confirmed that the explanations were clear. Everything had been well explained to me, so I did not find any difficulty. Respondent 8 Almost all respondents knew that MITS was a way of assessing the CoD without opening the body. Some added descriptions of the MITS procedure. I understand it is a way of seeking the possible cause of death. Respondent 1 I came to know that different samples were taken from different organs for analysis, and pneumonia was found to be the cause of death. Respondent 7 The respondents unanimously stated that MITS helped in determining the exact CoD, which consequently prevented family conflicts. Some added that MITS was less invasive and did not disfigure the deceased person, brought more comfort to bereaved relatives, and was free of charge. In accordance, these perceived benefits may have accounted for the increased acceptance of MITS among the respondents. This kind of autopsy is much better than the usual one . . .. It is an appreciated mode of autopsy [MITS] compared to open autopsy, whereby someone would think of disrupting the grieving state of the bereaved family. This type of autopsy is quicker than the usual open autopsy, which can delay the burial plans on the side of the grieving family . . . Nothing was difficult for me, since no money was spent for this examination. Respondent 1 I would advise everybody to have an autopsy performed, since the medics would advise on the disease that might run in the rest of the living family, hence initiating early screening with follow-up and why not possible vaccination for the disease? Respondent 2 Something that I would tell other people is that MITS is the best option to determine the cause of death. . . . Additionally, no money required to be performed. Respondent 3 The only way to have accurate results is an autopsy. I like that with this new method, you can find out the cause of death without completely opening . . .. Respondent 6 When you find out the cause of death, it gives you a different view, because you get to know that you did all that could be done. This is what brings you comfort and removes all sources of conflict among relatives/families. Respondent 8 This study also revealed that some respondents accepted MITS because they trusted medics. They stated that if a medic suggested that MITS be performed, it was likely that MITS were needed. Perceived barriers to MITS acceptability included lack of power to make decisions and lack of trust in medics. Allow me to ask you: when a person dies suddenly when his/her organs are healthy, eg, kidneys, if there is someone in the hospital who needs one, can't the healthy kidney be removed from the deceased and given to the sick patient? Respondent 6 I even called my grand brother just talking about performing the autopsy. He definitely encouraged me through the process . . .. Respondent 2 Theme 3: Bereaved Relatives' Suggestions to Improve Implementation of MITS A challenge expressed by respondents was the delay in receiving MITS results. One suggestion is to inform the family on the progress of the research and timely release of the results. Respondent 4 In total, 13 health-care professionals attended two FGDs (one with seven nurses and one with six doctors of different specialties). A majority (seven of 13) of FGD participants were women, and age ranged from 34 to 51 years. Work experience was 5-14 years. The findings from FGDs are presented in four key themes: knowledge and perceptions of MITS, perceptions regarding acceptance of MITS among bereaved relatives, challenges in performing MITS, and suggestions for effective MITS implementation. Findings from FGDs are presented in the form of themes, each with quotes representative of the given opinions. Knowledge on Autopsy Health-care professionals explained that autopsy was a gold-standard procedure done in order to identify the CoD. Some health-care professionals were reluctant to approach bereaved relatives. Interestingly, some suggested approaching the family before the death of the patient. There are some {healthcare professionals} who say that they don't want to be associated with anything concerning the deceased . . .. Participant 4, FGD with nurses Other health-care professionals . . . consider autopsy not necessary for a grieving family. Participant 3, FGD with doctors I think . . . it would be much better to talk to them before death . . .. Participant 1, FGD with nurses Challenges identified by health professionals included discordance between ante-and postmortem findings, the fact that the international classification of diseases version 10 (ICD10) section on MITS was not userfriendly, and the delay in issuing MITS results. MITS results were found to be discordant along clinical results, reflecting its limitations in organ sampling . . .. Also, its ICD10 entry is not user-friendly. Participant 1, FGD with doctors The results of MITS were delayed a bit to the extent we issued the death certificate in absence of its findings, while . . .. Participant 4, FGD with doctors Health-care professionals appreciated the MITS procedure itself and the MPDs. Suggestions included conducting an awareness campaign about the availability of MITS services, adopting an MPD culture, including pre-MITS MPDs, setting a reasonable turnaround for issuing MITS results, and advocating for making the ICD10 more userfriendly. If it is to be done at CHUK, I think announcements can be made through the media so that everyone gets to know about it . . .. Participant MITS is considered to have evolved since the 1800s; 5 however, it is a quite new procedure in most LMICs, including Rwanda. To the best of our knowledge, this is the first study of its kind conducted on perceptions and acceptability regarding MITS as an alternative to clinical autopsy in Rwanda. In this study, the bereaved relatives confirmed the adequacy of counseling services provided to them. This is an important step of customer care toward the acceptability of an offered service. [23] [24] [25] In accordance, bereaved relatives stated that the primary objective of performing MITS was to determine the CoD. Cited benefits included the prevention of the identified CoD among relatives and the prevention of conflicts among family and/or community members. All these advantages of MITS over conventional autopsy have been previously documented, 1, 5, 7, 11, 12 highlighting that bereaved families in this study received adequate information about MITS. Regarding MITS acceptability, enablers of MITS acceptability among bereaved relatives included eagerness to know the CoD, noninvasiveness, trust in medics, and no cost. Noninvasiveness of MITS and curiosity to know the CoD were also reported by health-care professionals as motivators of bereaved relatives' willingness to accept MITS. These MITS enablers have been previously documented in the literature. 1, 11, 12, [15] [16] [17] [18] [19] Barriers to the consent process included high socioeconomic status, religious beliefs, lack of power to make decisions, and lack of trust in medics (thinking that internal organs are harvested). Previous studies have shown that some religious believers are reluctant to accept autopsy procedures. 26, 27 The fear of harvesting organs of the deceased individuals has also been previously reported as one of the barriers to MITS acceptance. 12 This barrier could be eliminated if detailed information regarding the MITS procedure were made available to the community. The bereaved relatives and health-care professionals complained about delay in obtaining MITS results, which consequently reduces the acceptability of MITS. 19 Although health-care professionals perceived MITS to be more acceptable than conventional autopsy because of its less invasive nature, they stated that MITS was sometimes inconclusive compared to open autopsy. These findings are in keeping with published literature. 1, 5, 11, 12, 14, 23 Still, healthcare professionals recommended integrating MITS services among hospital services. MPDs were highly appreciated. A multidisciplinary approach to determination of the CoD has also been recommended previously. 28 Nevertheless, special consideration should be made to avoid eventual long turn-around-time. Barriers to MITS acceptability stated by the health-care professionals mirrored those identified by the bereaved relatives in this study. Health-care professionals' reluctance to approach bereaved relatives was a challenge in implementing MITS, both in this study and a previous one conducted in another setting. 28 As for disease classification, health-care providers should strive to use the ICD10 in order to have the same terminology, 29 likely by implementing MPDs when classifying diseases using the ICD10. 30 This study revealed that both health-care professionals and bereaved relatives understood the purpose and benefits of MITS. However, their comments also implied a need to improve some MITS aspects. These included organizing pre-MITS MPDs between pathologists and clinicians, improving the turnaround to issue MITS results, and incorporating MITS in regular hospital services, including it on death certificates, and organizing an awareness campaign on MITS-service availability. CHUK, University Teaching Hospital of Kigali (Centre Hospitalier Universitaire de Kigali); CoD, cause of death; FGD, focus-group discussion; ICD, international classification of diseases; LMICs, low-and lower middle-income countries; MITS, minimally invasive tissue sampling; MPD, multidisciplinary panel discussion; WHO, World Health Organization. The ethics committee of the CHUK granted this study ethical clearance (EC/CHUK/0126/2019) prior to data collection. To ensure confidentiality, data were deleted from audio-recording devices immediately after transfer to a computer. The information provided by participants was treated as strictly confidential. 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All authors made a significant contribution to the work reported, whether in conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas, took part in drafting, revising, or critically reviewing the article, gave final approval to the version to be published, have agreed on the journal to which the article has been submitted, and agree to be accountable for all aspects of the work. Dr Felix Manirakiza reports grants from the Bill & Melinda Gates Foundation during the conduct of the study. The authors report no other relevant conflicts of interests in this work.