**4.5 Donors and volunteers**

*Bioethics in Medicine and Society*

**4.3 Parent interactions**

**4.4 Communications and media**

Institutional Review Board, or Ethical Research Committee and approved before it is instituted. Moreover, it is necessary if your home institution is involved that approval from the relevant committee there is obtained. One should not be conducting research in LMIC that was not approved by the assisting team's home institution [19]. The claim of *"they are experimenting on our children"* can be a program downfall. Research fits well with the maintenance of a database registry, providing the local team with an opportunity to publish their progress in development [20]. The presentation and publication of results builds confidence within the local team and is extremely beneficial to overall program development. Alternatively, when the visiting team publishes work that was performed at the assisted site it is beneficial to involve the local team and to invite them to contribute to the publication and therefor co-authorship [21]. Collaborative efforts like this build trust and confi-

dence between the two teams and the benefit is program growth [22].

The parents of the child with heart disease who live in LMIC and must deal with the day-by-day question of will their child live to see another day must be treated with utmost respect and clarity. Frequently local caregivers have limited understanding of the risks and complications of surgery and post-operative care and therefore should not be the sole descriptors of these risks [23]. The surgeon and anesthesiologist of the visiting team need to treat these families with the same type of informed consent as they would at home to be equitable [24]. A major difference is that a translator will frequently be needed and should be instructed to translate exactly rather than to interpret the information you are providing. Importantly the translator must be well versed in medical terminology and have an adequate understanding of the procedure and risks so they can provide a basic understanding to the parents. Similarly updates following surgery should be provided with the same level of respect and clarity by the surgeon performing the operation. Updates in the ICU should follow the same course with the Intensivist or nurse of the visiting team providing important information with a translator as needed. Once the local team becomes experienced these updates can be provided by them with the visitors available for questions from the family if needed. During all these talks it is critical that the visiting team members build confidence with the families for the local team. We have found over the years that the best approach is for the visiting and local surgeon are both present during both the pre-operative discussion as well as the post-surgical update. The format works well as the families can hear from both and it is an opportunity to build confidence in the local team in the eyes of the family.

The presence of a group of foreign experts in pediatric cardiac surgery in a LMIC frequently results in many media requests for access to the visitors, local caregivers, and parents [25]. The goal of the visiting team is to build confidence in the local team during these exchanges [23]. However, it is imperative that expectations be realistic so that the public clearly understands that this is a program in development and that the local team is building experience. Again, the autonomy of the local team is important, and the leaders of the local team must be included in any media interview so that they are viewed in a positive manner by the public. There is no better justification for program continuation than to have parent testimonials, but again this is a parental decision. You may request that they participate to tell their story, but you cannot coerce or demand they do so, this is not ethical, it removes parent autonomy, and the interview will not have the authenticity they need to convey.

**244**

Donors (financial, material) and volunteers (medical, others) both contribute to the success of the program. The expectations of both groups should be known before they participate to avoid disappointment in the outcomes and program funding removed [26]. Donors should be briefed on the reality of the situation on the ground so that their expectations align with those of the visiting team. One should not make promises to donors that cannot be carried out given the local situation, this is disingenuous and not ethical. Conversely it is important to prepare volunteers for the cultural issues of the country being visited. Local medical ethics do not necessarily always coincide with those that the volunteers adhere to at home. A perfect example of this is the compassionate discontinuation of care practiced in many countries. Such medical decisions are not the norm in several countries around the world and it is important to brief the volunteers on this issue before the trip so they can decide if they can adhere to this cultural norm and refrain from inappropriate social media posts [27].
