Conceptualizations of family relationships
All parent and child responses to the open-ended question about what makes family relationships strong were found to align with one or more of the six facets of the PROMIS® family relationships measure (defined in Table
2). Parents described close family relationships as requiring communication, time together, and supporting, caring for, and/or valuing the other members. For example, the father of 13-year-old said, “Communication, trust, honesty, just time, you know, being spent with each other … well I guess being there for each other.” Similarly, the mother of 8-year-old said, “Just communicating, just being together […] being honest with one another” and the mother of 12-year-old said, “Communication makes our relationship strong so it’s, you know, talking all the time, asking lots of questions, and listening to each other.” Children included these and other concepts like love in their descriptions. For example, a 12-year-old boy said, “To, like, be able to talk to them, know that they love you, and to basically know that they’re always there for you,” while a 13-year-old said, “It’s a lot of love in [my] family.” An 11-year-old girl said, “I think it’s like being able to talk to them whenever you need to, tell them secrets without them telling anybody.” A 15-year-old girl said, “You gotta have a lot of trust and loyalty;” a 13-year-old girl said, “It’s like you have someone that’s always there for you,” and a 14-year-old boy said, “Like they’re always communicating.” Finally, another 12-year-old boy included the concept of spending time together, “When they ask, like, to talk to you, or when they ask if you want to go somewhere like to the mall, for example, or if you, like, just want to hang out.”
The Family Composition theme covered how participants defined their families, regardless of whether they lived in the same household or not. While participants had different criteria for defining their families, nobody had difficulty naming who they considered their family. For example, a 16-year-old girl who lived only with her mother described her family as “the everyday people” who included her mom, step-siblings, and an uncle, all of whom she spoke about regularly throughout the interview.
Sense of Family covered feelings of belonging, closeness, and connection to family members as well as the strength of family relationships. A 13-year-old girl described the connection with her father, “Like, just us in the car, it’s like, he’ll like bring up a subject and I’ll like, laugh at him then I’ll make a comment. It’s like a father-daughter conversation.” The mother of an 8-year-old boy described strong family relationships as, “Just having family time together. I’m learning it now, you know. Putting away the technology stuff and everything, just—just being together as a family, even if it’s like Sunday dinners coming together or game night or something like that.” Belonging was expressed by the father of a 13-year-old girl as, “I’ve been there for everything. [Child’s name] knows she’s just – that’s – that’s like my heart. That’s my daughter, that’s my princess, so I don’t know. I can’t see her even thinking that she just belong anywhere else.”
Trust, Dependability, and Support covered concepts of helping, providing guidance, and being there when needed. For example, a 12-year-old boy said, “To basically know that they’re always there for you,” and the mother of a 14-year-old boy described, “How everybody’s willing to help out each other. When there’s a problem, they’re there, and when there’s something good, they’re there to celebrate. So they’re always there.” Within this code we included the concepts of being treated fairly (or unfairly) as well as comparisons to others provided as a metric for fairness. For example, a 16-year-old boy described feeling like he was treated differently from his older brother: “I see my brother like all the time, like he just goes out on the weekends and stuff and just hangs out, but it’s probably ‘cause he can drive and stuff, but like with me like it’s almost like they know, like want to know, everything I’m doing at every moment of the day.” A 13-year-old boy described receiving help from his mother, “About struggling in school, just giving me advice like how to stay positive and like cause at the time I was struggling I had my grades low, she was like just stay positive. Give me good advice and like let the negativity flow away.”
Another aspect of the Trust, Dependability, and Support theme was the concept of developing independence and increasing responsibilities for disease self-management. For example, the mother of a 10-year-old described how her son “tries to do everything by himself. He don’t want to feel like he can’t do anything, so it depends on him pretty much. We help him a lot during his down days, but if he’s not feeling too bad, he does a lot by himself.” Two of the older children and a few parents also made comments that addressed children’s autonomy and/or independence. For example, a 16-year-old girl spoke about how having diabetes requires her to be responsible and how she struggled with finding the right balance of independence with still managing her chronic condition adequately. She talked about turning down offers of help from her mother and others, even when that meant she could not live up to the responsibility of managing her condition, which sometimes resulted in negative outcomes, saying “I be more mad at myself ‘cause it’s like I failed myself but I do it by myself, so it’s like sad ‘cause I’m only 16 and having to do all this; like diabetes not easy. I got a disease, an illness where I do need to take better care of it […] but then it’s like now that I’m so used to doing it by myself, I don’t want nobody to help me with it. Like when my mom would try to help me and I be like, she’ll be like, ‘what was your blood sugar was?’ and that irritates me ‘cause I’m like: Why? Why do you care?” The mother of a 14-year-old discussed how giving too much attention could be detrimental to children needing “to be able to branch out and do things on their own. So if you’re doing things for them or giving them too much attention while they’re trying to do stuff, then that’s too much.”
Love and Caring covered the sense of being cared about and loved by family members. A 10-year-old noted “a lot of hugs and kisses” as a mark that her family loved each other, and others also mentioned physical affection or saying “I love you” as a sign of love and caring. The father of 16-year-old girl said, “If you don’t feel loved or don’t feel wanted, you know, that’s kind of the base building block of things. You know, of human – human wants.” The mother of 14-year-old boy described caring for her son by encouraging him, “Well, we always try to tell him no matter what you do, put your best foot forward. And even if you don’t do as well as everybody else, you do your best and you’re great.” She also described the lack of love her son feels because his father is absent, “His dad’s nowhere around and he hates it because he doesn’t understand […] why his dad doesn’t love him. So I have to make him understand that it’s his dad’s loss, it’s not his loss.” This theme also included family members paying attention to each other. The father of a 16-year-old boy described, “We tell him we love him, he knows we’re engaged, he knows we’re involved with his day-to-day life and his success and what he wants to do and how he needs to do it.”
Value and Acceptance covered feeling important (or conversely feeling like a burden), feeling like one matters to their family members and that family members make them feel good and understand them. A 16-year-old girl described the importance of her “leadership skills” to her family, because “They feel comfortable leaving me with my younger siblings and kind of like taking charge of them when I need to.” Parents described making sure their children are noticed and appreciated, giving examples of good grades in school, participation in activities, completing chores at home, etc. The mother of 8-year-old boy said, “I think that’s very important to feel, you know, like somebody, like you’re worthy to be loved or liked or hugged or being around.” The mother of 13-year-old described how she demonstrated value and acceptance to her son, “We always acknowledge the good work that he does. We acknowledge the bad things that he does too […] I’m a believer in rewards and consequences, because it’s just life.” One child, a 16-year-old girl, described feeling like a burden to her family and not feeling important to them, “When I be in hospitals and I be in there by myself [….] That be the depressing moment I have because then they got to have me on suicide watch because I’m by myself and my thoughts is getting to me and I don’t have nobody there […] not even my mom ‘cause don’t nobody want to deal with it.” This was corroborated in the interview with her mother who said, “Right now at this present time, she don’t feel like she’s important to the family […] she’s not feeling too accepted by them at this time.”
Enjoyment covered having fun or pleasurable interactions with family members. Many children described holidays, birthdays, and trips out of town as enjoyable times with family. An 11-year-old girl described, “We go to my grandpa’s every Sunday and Wednesdays, so and my cousins come, so it’s pretty fun too.” An 8-year-old boy described his favorite leisure activities as, “Play on the iPad or play with my cousins […] we play games, we play hide and go seek.” One 9-year-old boy said he did not usually have fun with his family because they didn’t do things together, “We just do our own thing […] Like I play my [video] games, my brother watches TV, and they [parents] usually watch TV.” Parents often described eating together, travel, and shared activities such as playing games or sports. The mother of 13-year-old boy indicated that having fun together was an important part of being a family, “Because sometimes families miss out on that. You know, you get so caught up in your own personal life, you miss what it’s all about. ‘Cause see whenever – growing up as a child for me, that’s all I had was cousins and family. I didn’t really have outside friends. All I had was family and that’s all we did was together every day all day, that’s all we did was play.” Another mother described organizing fun activities for her family because, “It builds the memories and it keeps [us] close.”
Communication covered listening, talking and willingness to talk, and the communication outcome of feeling understood. The father of 11-year-old girl said, “We have an open door policy with them, like when they come and they want to talk about stuff, whatever’s on their mind, whatever’s concerning to them, if it’s something that’s going on in school to all the way down to – I would love to get some ice cream. You know what I mean, like it’s – nothing’s off limits to them.” Similarly, the mother of 13-year-old boy said, “You know sometimes you can’t talk, you have to listen. Every time you can’t talk. You just have to be the ears and listen to hear what’s going on. So that’s very important and something you can understand how a person is feeling, where they’re coming from, or what their point is what they’re trying to explain. You just have to listen.” In the interviews with children, many gave general responses indicating that their parents listened “all the time” or “a lot.” Some children provided concrete examples of a parent listening to them, such as the 11-year-old who said, “We’re planning on going vacation on like a huge vacation […], we were like discussing stuff, where we’re gonna go, and what house to choose.”
Disease Impact included the experience of living with a chronic illness, including how illness does or doesn’t impact family interactions and relationships. The large majority of both parents and children indicated that they had not thought about their (or their child’s) illness when they answered the general questions about family relationships during the interview. For example, a parent of an 11-year-old who explained, “I very rarely think about her specifically with diabetes. It’s more of ‘she’s my child’ and then that’s it. You know, diabetes just came with it, so it doesn’t define who she is.” However, parents and children may have differing views about the relevance of the child’s chronic disease to the concept of family relationships, as evidenced by whether they spontaneously raised the chronic condition during probing about family relationships. Among the 14 child participants who mentioned their chronic illness, 1 of 4 children with asthma, 3 of 5 children with diabetes, and 1 of 5 children with sickle cell disease spontaneously raised their chronic illness while being probed about family relationships. Parents more commonly brought up their child’s illness without being probed specifically about it. Among parents, 3 of 5 parents of a child with asthma, 4 of 5 parents of a child with diabetes, and 4 of 4 parents of a child with sickle cell disease spontaneously brought up their child’s chronic illness when asked questions about family relationships.
Children across each of the 3 chronic conditions described ways that aspects of their family relationships can be influenced by these conditions, such as being able to have fun or play. Specifically, children with asthma described becoming out of breath when playing or running or because of allergies and needing to carry with them and use an inhaler – something that for some children involved the family helping with those responsibilities. For example, as a 13-year-old described: “Having asthma’s like, it’s like some things I can’t do like when I want to. When I take my inhaler. I go home, my family they make sure I’m alert. They make sure [to] have inhalers with them at all the times. Like in their car or in their purse or something.” A mother of a 14-year-old described how her son’s diagnosis affected their family, “When [child name] was diagnosed with diabetes, everyone was there to help him. We all got together, we all learned how to help him, we all changed our diet to make it easier for him. If he couldn’t have something, nobody got it. We all started learning how to count carbs [….] Makes that transition a lot easier for the one person who has to do it.” A 16-year-old boy with sickle cell disease said, “I think like having sickle cell like, that could be why my family like cares so much around me or like watches like – pays like a lot of attention to me, just like to make sure I’m doing ok and like never am in pain and […] can’t do anything about it.” At least one child described less positive views of the influence of her chronic condition on family relationships. This 16-year-old girl thought having diabetes changed her role in her family, “Yeah, ‘cause I feel like the black sheep or like the burden child.”