Table 2.

Parental Definition of “Being a Good Parent to My Dying Child”

Theme (n = 8)	Definition	Codes		Parents Reporting		Sample Quote
		No.	%	No.	%
Doing right by my child	Making prudent decisions in best interest of child (even when parent would prefer different course) after weighing all options; meeting basic needs (eg, clothing, food, education) in unselfish way that may require sacrifices	67	30.45	57	89.1	“We tried as much as we could to get her the best treatment.” “This is simple—doing what is best for your child.”
Being there for my child	Always at child's side and supportive regardless of challenges; knowing at all times which activities child is engaged in and with whom	50	22.7	31	48.4	“Always being at her side.” “Being with her every step of the way.”
Conveying love to my child	Demonstrating to child by actions and words how cherished child is, even under difficult circumstances; focusing on child's quality of life and happiness	30	13.0	27	42.2	“Most of all, giving him the love that I have.” “Tell them you love them every day, and never take anything for granted.”
Being a good life example	Trying to live life that teaches child to behave in positive ways, know right and wrong, make good choices, be respectful of others, and show sympathy to others	17	7.7	13	20.3	“Training your child to make good choices.” “Doing things that will make the child be a better person rather than slipping through life.” “Sympathy—make sure your kids learn sympathy for others.”
Being an advocate for my child	Knowing what child wants and alerting staff to those wants; involving staff in care that parent is unable to perform; trying to stay focused on meeting child's needs at all times	14	6.4	14	21.9	“We try to tell the staff if it is something we can't do.” “For a while, I felt like I was a bad person because I'm honoring his wish, but I told myself to go on and be the bad person because you are doing what your child wants.”
Letting the lord lead	Bringing child up to know God and find comfort in his constant presence; letting child know that parent prays for child every day	14	6.4	11	17.2	“To provide a Christian home, to bring them up in a Christian home learning about God and knowing how important that is.” “Pray every day for yourself, your children, and others. And let your kids know that you do this.”
Not allowing suffering	Trying to prevent care that causes child to suffer but may not benefit child; wanting child to be able to die with dignity	21	9.54	12	18.8	“Making her as comfortable as we can—little things like what type of saline—the purple top—doesn't make her nauseous.” “A good parent is also to let her leave this world with dignity that she entered it with and not with someone beating on her chest.”
Making my child healthy	Helping child to be as healthy as possible and to function as normally as possible for as long as possible	7	3.2	6	9.4	“Do everything you can to help your child live longer and healthier.” “To help him be as functional as he can be for as long as he can be.”