| There are times when I’m completely drained. I sit down and cry. I ask God, “Why me?”. It’s challenging (M06-mother of a 5-year-old girl)(25). |
Sensing body fatigue |
At-risk physical health |
Parents facing multiple physical, mental and life challenges |
| I have become an insomniac. I don’t sleep at night as every 2–3 hours I have to check on him (…) I sleep only 2–3 hours. It’s my son’s diabetes that has made me like that (M07-mother of a 9-year-old boy)(25). |
Chronic sleep deprivation |
| I could not believe that my child had diabetes. I took him to different doctors (One mother)(21). |
Diagnosis difficult to accept, deny and escape |
Complex emotional experience |
| It was like you were killing your own daughter…. I don’t think that I’m going to be able to do it (One mother)(20). |
Fear of managing the disease process |
| Society’s perception of diabetes is backward and even wrong. Her peers were afraid to drink from her glass as they thought that it was contagious… (M10-mother of a 10-year-old girl)(14). |
The outside world’s misunderstanding of the disease |
| I was so worried about the consequences of spreading the news among them, which may have a negative or bad effect on my daughter’s future (FATIMA)(23). |
Concerns about stigma associated with type 1 Diabetes Mellitus |
| I feel guilty that I may have done something wrong that has resulted in my child’s diabetes as I’m the one who feeds him and takes care of him (M07-mother of a 9-year-old boy)(25). |
Self-blame and guilt |
| I went through a grieving process, not grief for dying... it’s about the loss of your child’s health (One mother)(18). |
Sorrow and pity |
| Diabetes is an underrated condition: you look healthy—nothing is visible. To be parents in this situation implies that you live in a state of perpetual attention (Mother child 7)(13). |
Constant high tension |
| There are family and friends ready when we need time for ourselves. But it is difficult to let go, and we think about all the considerations we must make all the time. It is difficult for us to leave this responsibility to others (Mother child 7)(16). |
Alleviating the burden of care and the ambivalence of not being able to let go |
| I am always thinking about his future. I wonder what will happen to his body. Can he be successful in his life? I do not know; the future is unclear (M:3)(14). |
Fear for the child’s future |
| We are confused about why blood sugar control is not very good. I don’t know what to do, I want to know all about blood sugar control (One mother)(26). |
Lack of knowledge about the disease |
Taking care of lack of knowledge and ability |
| I was confused at the beginning and did not know where to start. I had never practiced insulin injection before. I still remember how my hands trembled when I injected my child the first time, causing me to inject too much insulin (DM17)(15). |
Care skills need to be improved |
| Now I rarely focus my energy on the company [I work for]; just get off work as soon as possible. I used to leave early and return late to make money. Now I quit my job and found a new one that can make a living while taking care of my child (DM5)(21). |
Changing future career plans |
Limited personal development and social activities |
| Since my child had a ketosis coma, I have never dared to relax again. I have lost myself. Every day in the year, there are no more visits to relatives or friends (DM10)(22). |
Interfering with normal social interaction |
| I revolve around my children almost all day, and I don’t have any time to myself (One mother)(18). |
Reducing personal time elasticity |
| I spend a lot of time with Ahmed. This has made his siblings dissatisfied (One mother)(21). |
Having an impact on siblings |
The reconstruction of family dynamics |
| We ordered beepers and we would beep. Every time…(she) did a (blood glucose) test we would beep the number… she’d just beep the number and I would call her and we would consult each other (A father of a 4-year-old child)(20). |
Spousal responsibility division and support |
| I have too many chores and things to take care of besides taking care of him, but it is difficult for me to juggle them (M07-mother of a 9-year-old boy)(25). |
Hard to balance care and daily life |
| What shall I say… near fights where we have accused each other like. Why did you forget this? Don’t you know that this food contains lots of carbohydrates? Yes, we have had a few of those (Father child 8)(16). |
Diabetes-related family conflict |
| The test strip and the insulin needle are too expensive. We did not have such costs earlier, but now we have to save by cutting down on family expenses for the sake of our child (M:7)(14). |
Financially stressful long-term treatment |
Heavy economic burden |
| … a lot of things I don’t think he (father) does right with this, and I’m sure he thinks I micro-organize the whole thing… he doesn’t get the calls from the nurse. He’s not watching the meter all day with every number that’s coming up, and so I think it’s a little more stress free for him (One mother of a 9-year-old girl)(20). |
Absent paternal care role |
Insufficient family support |
Parents’ lack of a full range of outside support |
| My son is a little uncomfortable; they (family) are putting the responsibility on me, the child does not cooperate with me, I can do nothing, they should understand my difficulties more (One mother)(26). |
Relatives’ lack of understand |
| I hope the whole family can help me share a little, because my ability is limited, and if my family members can help take care of me, I can feel more relaxed and the care effect will be better (One mother)(26). |
Family members’ hope to participate in care |
| I really want the doctors and nurses to tell me what kind of food that my child can and cannot eat, in what amount, and how to prepare it, so I can write them all down in a little notebook. I have a hard time figuring out the calories of the diet. I wish I could ask the doctors and nurses to prepare a list of recipes so I can follow them; otherwise, it is too difficult for me to prepare the meals for my child (DM7)(15). |
Eager for professional guidance from medical staff |
Insufficient professional support |
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| Nowadays, we can find all kinds of information on the Internet, but there are always examples of falsehoods on the Internet. The more the information that I browse, the more I want to know, and I feel panicky deep down. I particularly hope that there will be a professional platform where I can ask question when I encounter problems that I cannot handle and receive timely answers from doctors and nurses (DM8)(15). |
Difficult to obtain authoritative information |
| The children do not have medical insurance; these test strips, insulin cannot be reimbursed. It would be nice if some drugs were covered by Medicare, as they are for type 2 diabetes (One mother)(26). |
Lack of social security |
Insufficient social support |
| Since my child has started going to school, my heart really trembles as soon as the school calls, and I am afraid that my child will have an accident. Teachers at school do not know how to take care of diabetic children, and the schools generally have no nurse specialist. I am really afraid that there will be an accident (DM13)(15). |
Not perfect school configuration |
| The family will tell me that you are the mother of the child and you must take care of him (One mother)(17). |
Relatives taking their parents’ care for granted |
Unreasonable external expectations |
| I feel anxious every time I go to the clinic. They (healthcare staff ) don’t understand the reality of living with a T1DM child, that I’ve done my best and still don’t meet the requirements, and he feels that I should be able to take care of the child (One mother)(20). |
Unrealistic expectations form medical staff |
| But over the time, the situation has been changed and become almost ordinary and acceptable to us (KHULUD)(23). |
Gradual acceptance of disease |
Self-empowerment, actively responding to life changes |
Parents’ caregiving role competency enhanced to adjust to the new life |
| Taking care of my daughter, it’s not that I think I can or can’t, but that I must be able to do. It’s like a parent’s obligation. If I can’t, what else can she do? It’s not something I can or can’t do. It’s something I must be able to do (DM6)(22). |
Adapt to the caregiving role |
| As time went by, I felt that I could handle the problems in the management of the child’s disease, and also determine the dosage properly. I learned many diabetes-related skills, and had confidence in the care of the child (A father)(24). |
Improve caring ability |
| I started reading online about diabetes care. I obligated myself to take the responsibility of the care of my child myself (One mother)(21). |
Actively seeking out new information about the disease |
| I read a book on healing. It helped me accept my child’s diabetes and also encouraged me to start taking care of my child (M10-mother of a 7-year-old girl)(25). |
Finding ways to relieve negative emotions |
| If you let it, it (diabetes) will retreat into your life sooner or later, and we will always get back to normal (A father)(24). |
Encouraging children to live a normal life |
Thinking positively about the future |
| I told her to do whatever you want. You are just like everyone else (A mother)(27). |
Having confidence in having life back to normal |
Experiência de cuidado parental de crianças com diabetes tipo 1: meta-síntese qualitativa
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Base1: CNKI; Base2: VIP; Base3: CBM; Base4: Wang Fang; Base5: PubMed; Base6: Web of Science; Base7: CINAHL;Base8: The Cochrane library; Base9: Scopus; Base10: Embase.