Experiencia de cuidado parental de niños con diabetes tipo 1: metasíntesis cualitativa

Zhang, Zhaoying; Wang, Xin; Dong, Wenwen; Gao, Danshan

doi:10.1590/1980-220X-REEUSP-2024-0118en

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REVIEW • Rev. esc. enferm. USP 58 • 2024 • https://doi.org/10.1590/1980-220X-REEUSP-2024-0118en linkcopiar

Experiencia de cuidado parental de niños con diabetes tipo 1: metasíntesis cualitativa

Autoría SCIMAGO INSTITUTIONS RANKINGS

RESUMEN

Objetivo: Evaluar estudios cualitativos sobre las experiencias de cuidado de padres cuyos hijos tienen diabetes tipo 1 y desarrollar estrategias de apoyo personalizadas basadas en los hallazgos.

Método: Revisión sistemática con metasíntesis realizada en las bases de datos Cochrane Library, Embase, Scopus, CINAHL, PubMed, Web of Science, CNKI, CBM, VIP y Wanfang. La calidad se evaluó utilizando los criterios del JBI y se aplicó el método metaagregativo para categorizar los resultados en subtemas y agregarlos en tres metatemas interrelacionados para comprender las experiencias de cuidado de los padres.

Resultados: En total se encontraron 2.100 artículos, de los cuales 15 fueron seleccionados y analizados. Los tres metatemas identificados fueron “Padres que enfrentan múltiples desafíos físicos, mentales y vitales”, “Falta de una gama completa de apoyo externo por parte de los padres” y “Competencia de los padres en la función de cuidado mejorada para adaptarse a la nueva vida”.

Conclusión: Es fundamental que los profesionales de la salud reconozcan estas experiencias de los padres y ofrezcan conocimientos específicos, capacitación en habilidades y apoyo psicológico adaptado a sus necesidades, incluida capacitación en grupo, intervenciones de atención plena en línea y una mayor empatía por parte del personal médico.

DESCRIPTORES
Diabetes Mellitus Tipo 1; Niño; Padres; Emociones; Investigación Cualitativa; Revisión

Procedure	Search mode
#1	Diabetes Mellitus, Type 1 [mh] OR Diabetes, Type 1 [tiab] OR Type 1 Diabetes [tiab] OR Type 1 Diabetes Mellitus [tiab] OR Diabetes Mellitus, Type I [tiab] OR Juvenile Onset Diabetes [tiab] OR Diabetes Mellitus, Juvenile Onset [tiab] OR Insulin-Dependent Diabetes Mellitus [tiab] OR Insulin Dependent Diabetes Mellitus 1 [tiab] OR Diabetes Mellitus, Insulin Dependent [tiab]
#2	child [mh] OR Children [tiab] OR Infant [tiab] OR Infants [tiab] OR Adolescent [tiab] OR Teenager [tiab]
#3	parents [mh] OR parent [tiab] OR father [tiab] OR mother [tiab] OR maternal* [tiab] OR paternal* [tiab]
#4	Emotions [tiab] OR experience [tiab] OR needs [tiab] OR perceptions [tiab] OR feeling [tiab]
#5	qualitative research [mh] OR qualitative study [tiab] OR research, qualitative [tiab] OR phenomenon* [tiab] OR ground theory [tiab] OR narrative research [tiab] OR action research [tiab] OR case study [tiab] OR descriptive study [tiab] OR focus group [tiab] OR interview[tiab]
#6	#1 AND #2 AND #3 AND #4 AND #5

Inclusion study	①	②	③	④	⑤	⑥	⑦	⑧	⑨	⑩	Literature quality
Sullivan-Bolya et al.(¹³)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Khandan et al.(¹⁴)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Tong et al.(¹⁵)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	No	Yes	B
Iversen et al.(¹⁶)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Rifshana et al.(¹⁷)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Symons et al.(¹⁸)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Nurmi and Stieber-Roger(¹⁹)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Smaldone and Ritholz(²⁰)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Moghadam et al.(²¹)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Tong et al.(²²)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Rossiter et al.(²³)	Yes	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	B
Sullivan-Bolyai et al.(²⁴)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Chan et al.(²⁵)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B
Dai et al.(²⁶)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	No	Yes	B
Haegele et al.(²⁷)	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	B

Findings	Subtopic	Topics	Meta-topic
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	At-risk physical health
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	Taking care of lack of knowledge and ability
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
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	Insufficient professional support
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	Insufficient social support
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	Unreasonable external expectations
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	Thinking positively about the future

Author	Country	Method of analysis	Participants	Context	Topic
Sullivan-Bolya et al.(¹³)	United States	Descriptive qualitative research	28 mothers	Home	Constant vigilance
Khandan et al.(¹⁴)	Iran	Phenomenon study	11 mothers	Home/workplace/hospital	Facing the care management challenges; Care in the shadow of concern; Hard life in the impasse of diabetes
Tong et al.(¹⁵)	China	Phenomenon study	12 mothers and 6 fathers	Hospital	Desire for information; Skill guidance needs; Seeking emotional support; Lack of social support
Iversen et al.(¹⁶)	Nordic countries	Phenomenon study	8 mothers and 7 fathers	Home/hospital/workplace/cafe	Striving to live an ordinary family life, yet feeling and living very differently
Rifshana et al.(¹⁷)	New Zealand	Phenomenon study	14 mothers and 3 fathers	Home/workplace	Problematic care for children with type 1 Diabetes Mellitus
Symons et al.(¹⁸)	New Zealand	Descriptive qualitative research	5 mothers and 4 fathers	Home	The destruction of family life; The impact on family relations; The influence of social psychology; Living with diabetes
Nurmi et al.(¹⁹)	Canada	Collective case study	13 parents	Failure to report	Hope the child can live like a normal person; Protecting children from harm
Smaldone et al.(²⁰)	United States	Descriptive qualitative research	7 mothers and 7 fathers	Failure to report	Diagnostic experience: frustration, fear and doubt; Adjusting to diabetes; Negotiated development transformation
Moghadam et al.(²¹)	Iran	Descriptive qualitative research	20 mothers	Failure to report	Coping with the burden of care through personalized strategies and access to social support
Tong et al.(²²)	China	Descriptive qualitative research	13 mothers and 7 fathers	Hospital	Continued psychological stress; Changes in family functions; Daily management challenges; Excessive financial burden; Lack of social support system
Rossiter et al.(²³)	United Arab Emirates	Phenomenon study	4 mothers	Hospital	From disbelief and shock to acceptance of illness
Sullivan-Bolyai et al.(²⁴)	United States	Phenomenon study	14 fathers	Home/hospital	From grief to action
Chan et al.(²⁵)	Mauritius	Phenomenon study	11 mothers	Failure to report	Facing the disruption of life; Experiencing mixed emotions; Taking matters into one’s hands; Coping with life
Jinling Dai et al.(²⁶)	China	Phenomenon study	10 mothers	Failure to report	Disease information needs; Individual health needs; Family support needs; Social support needs; Economic support needs
Haegele et al.(²⁷)	United States	Phenomenon study	19 mothers and 10 fathers	Failure to report	The cost of type 1 Diabetes Mellitus; Supermom; Coping differently

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[T2FN1] Caption: ① Whether the philosophical basis is consistent with the methodology; ② Whether the methodology is consistent with the research question or research objective; ③ Whether the methodology is consistent with the data collection method; ④ Whether the methodology is consistent with data representativeness and typicality and data analysis methods; ⑤ Whether the methodology is consistent with the interpretation of results; ⑥ Whether to explain the researcher’s own situation from the perspective of cultural background and values; ⑦ Whether the impact of the researcher on the research or the impact of the research on the researcher is stated; ⑧ Whether the research object and its views are typical; ⑨ Whether it is approved by the ethics committee; ⑩ Whether the conclusion is derived from data analysis and interpretation.