Mothers' Lived Experience of Caring for Children with Inborn Errors of Amino Acid Metabolism

doi:10.21203/rs.3.rs-2084481/v1

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Research Article

Mothers' Lived Experience of Caring for Children with Inborn Errors of Amino Acid Metabolism

https://doi.org/10.21203/rs.3.rs-2084481/v1

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Journal Publication

published 07 Jun, 2023

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Background

Inborn errors of amino acid metabolism are chronic conditions which have many sequels. Mothers of these children are facing different challenges which are underdetermined. This study was done to explore lived experience of mothers caring these children.

Methods

This is an interpretive phenomenology with Van Manen's approach which has 6 steps. Data were gathered by convenience and purposeful sampling. Nine mothers with different experiences were interviewed and audio taped.

Results

Six final themes were revealed from the exploring mothers' experiences including: future tied to past, psychosis in the shadow of lost ideal child, rebellion and blaming, the ways of escaping difficulties, self-forgetting in the shadow of full time care, passing difficulties in the duality of hope-hopelessness, caring in a continuum of isolation-socialization.

Conclusions

Mothers have multiple challenges in taking care of their children, especially psychologically and financially. So, nurses must plan programs for helping mothers of children with inborn errors of amino acid metabolism to reduce the effects of disease on mothers and consequently the children and whole family.

lived experience

mother

inborn errors of metabolism

children

qualitative

Inborn errors of amino acid metabolism (IEAAMs) are one of Inborn Errors of Metabolism (IEMs) which have substantial contribution in intellectual disability, seizure, sudden infant death syndrome (SIDS), and neurologic disorders (1).These disorders are due to a defect in a metabolic pathway and the aggregation of the defective pathway's metabolites cause the signs and symptoms. These metabolites are poisonous or can cause cell destruction because of aggregation in organelles. Also, the deficiency of the lower path metabolites are effective in disease pathogenesis, whole this process can affect one or more systems (2–4). The signs of these disorders could be encephalopathy, metabolic acidosis, hyperammonemia, coma, liver damage, cataract, kidney failure, kidney cyst, cardiomyopathy, pericarditis, and etc. (2, 4, 5). The incidence of these disorders are 1/800–2500 live birth, which is differs by countries, the least reported in Japan (10/100000 live birth) and the most in Mexico (350/100000 live birth) (2). Although, there is no official information in Iran; it is prevalent in other middle east countries like Saudi Arabia and Bahrain which have cultural and social proximities with Iran (1/1443, and 1/6000 live birth, respectively) (4, 6).

IEAAMs are categorized as rare and chronic conditions that need lifelong support, protection, care and treatment (3, 7). Having a child with such condition is very annoying for mothers because they may have pain, feel ill, or not able to do what other children do (8). These disease, regardless of the intensity and duration, cause parenteral and familial stress, and the more stress result in the least parental psychological coping (7).

Various studies has done on IEAAMs, but the most are about the diagnosis, screening, and treatment methods. Although, the mothers of these children have many challenges; there is few and scattered studies about different aspects of caring children with IEAAMs and their mothers' experience of caring. These few studies describe parents have many problems due to the involvement of multiple systems (9), low quality of life (10), worried of ambiguous future of the children (11), and acceptance of the disease has an important role in taking care of children (11, 12). Mothers suffer from depression, sleep disorders, social and familial relations disturbances, and low quality of life and have more struggles than other families (3). Although, these mothers are facing different overwhelming obstacles; they can move forward, adapt to new norms and even have an optimistic view (11).

Since the lack of knowledge about the experience of caring children with IEAAMs, recent studies suggested more research on it. For example the UK Strategy for Rare Disease, National Rare Disease Plan for Ireland, and many national strategies for rare disease in Europe emphasize on the importance of participating parents and families in research and using patients and caregivers' opinions in policies and services affecting them. Also, these strategies stress on applying different research approaches. Among research approaches, qualitative methods can demonstrate experience of living with a rare condition and the patients and caregivers' challenges (11).

Clearing these mothers experiences, disclosure stories of their struggles for meeting their children's complicated social and health needs. Mothers' stories are remained silent, and not understood for healthcare services and society. Breaking the silence and clarifying the mothers' sounds and experiences can increase the insight to their challenges and help them to be understood (13). The purpose of qualitative research is describing, understanding, or explaining the social phenomenon with a scientific and systematic process (14). Qualitative research give the children and families the chance to share their experiences and views and make deep insight for conscious care. More qualitative research is needed to make shared decision making and planning interventions based on patients and families priorities and preferences (15). Among these approaches, interpretive phenomenology is looking for studying personal life world or experiences as one lived. This method provides deeper understanding of parents' daily life, the management, and living with child's disease in the context of family, and it provides the strengthening or inhibiting factors of this experience (11). Therefore, this study was done with purpose of exploring the experiences of mothers with a child with IEAAMs with interpretive phenomenology to assess the challenges from their points of views.

This study was carried out through the lens of naturalism and Van Manen's interpretive phenomenology to answer the question of "what is the meaning of caring children with inborn errors of amino acid metabolism?" exploring their mothers' lived experiences. As Van Manen says "interpretive phenomenology is a search for entire life" (16).

The research was done with ethical confirmation from Mashhad University of Medical Sciences (Ethical code: IR.MUMS.REC.1399.435). This study is based on convenience and purposeful sampling of 9 mothers referring to Akbar Hospital, a pediatric educational tertiary hospital in Mashhad, who had at least one child with IEAAM that is diagnosed for more than 1 year, willing to participate and speak Persian. Data were gathered by semi-structured interviews during inpatient visits or child hospitalization based on the preference of the mothers. All were performed by first author after communication and explanation of the study purpose and completing the informed consent by mothers. Then, the interview were began with an introductory question "Please, describe how the child's disease were diagnosed?" and continued with main questions like "Please express your feeling when you have found out the metabolism disease", "What is the experience of caring a child with IEAAM is like to you?" and for deepening the interview complementary questions were asked such as "Could you explain more?" or "Could you tell a memory of it?". The mean time of interviews were 25–50 minutes and all were audio recorded and written word by word as soon as possible. Sampling was continued till the saturation of data when no new themes were appeared.

Thematic analyzes was done by Van Manen phenomenology approach including 6 steps: turning to the nature of lived experience, investigating experience as we live it, reflection on the essential themes, the art of writing and rewriting, maintain a strong and oriented relation to the phenomenon, and balancing the research by considering the parts and the whole. Also, for isolating thematic statements three wholistic, detailed, and selective approaches were used. This process was performed by research team including a PhD student of nursing, an advisory and a supervisory professors who had Nursing PhD.

To achieve the trustworthiness criteria including credibility, dependability, confirmability, and transferability were used (17). In this study the trustworthiness of data based on the four mentioned criteria was confirmed as follows:

For credibility of data member checking was carried out – the preliminary analysis of the data was sent to participants to find out if they felt the analysis was accurate and reflective of their experiences and to solicit additional feedback in this regard (18, 19). Also, the coding process were continuously assessed by research team and the other colleagues who weren't involve in the study but were familiar to qualitative research and thematic analysis. Spending enough time for gathering data, interviewing and observing participants and continuous involvement with them were done for increasing credibility, too.

Accurate assessment of data and documents were done by external supervisors step by steps to achieve dependability. Also, for reaching confirmability some of interviews, codes, and themes were checked by some of nursing faculty members who were familiar to qualitative analysis but were not participating in this study. Lastly, Graneheim & Lundman (2004) point out that it is up to the reader to determine transferability of the findings to other contexts. So, to assist the reader in determining transferability characteristics of participants, data collection and process of analysis is included in the study (17).

Participants were 9 mothers aged between 22–50 years old who had at least on child with IEAAMs, all were housewives and three of them had experienced death of one child due to the disease (Table 1).

Table 1

participants characteristics
Participants	Participants1	Participants2	Participants3	Participants4	Participants5	Participants6	Participants7	Participants8	Participants9
Disease	Citrolinemia	propionic acidemia	Homocystinuria	MSUD	Leucine disorder	Urea cycle disorder	Urea cycle disorder	MMA	Glutaric academia
Child gender	girl	boy	girl	girl	boy	girl	boy	girl	boy
Child's age	3 years	19 months	16 years	10 years	15 months	16 years	3 years	17 years	3.5 years
Disease duration	2.5 years	1 year	15 years	10 years	1 years	16 years	3 years	8 years	3 years
Mother's age	22 years	28 years	50 years	30 years	34 years	42 years	34 years	50 years	26 years
Mother's educated	Under diploma	Software engineer	none	diploma	Bachelor of Theology	diploma	Under diploma	Under diploma	diploma
Children No.	1	1	5	3	1	4	2	3	1
No. of affected child	1	1	1 and 3 death	2	1	1	2 and 1 death	2 and 1 death	1

Thematic analysis with the selective, detailed, and wholistic approaches revealed 303 theme statements, which were compared to each other and similar themes put in a category to form stratified, main, and final themes which were 86, 12, and 6 respectively (Table 2).

Table 2

main and final themes of mothers' experience of caring a child with IEAAMs
	Main themes	Final themes
1	Confused skein of diagnosis and treatment	Future tied to past
2	Ambiguous future capture to disease	Future tied to past
3	Mother psychosis	Psychosis in the shadow of lost ideal child
4	Lost ideal child	Psychosis in the shadow of lost ideal child
5	Child's rebellion, Mother's helplessness	Rebellion and blaming, the ways of escaping difficulties
6	Suffering decrease by blaming	Rebellion and blaming, the ways of escaping difficulties
7	Motherhood in the shadow of disease, fear, and self-forgetting	Self-forgetting in the shadow of full time care
8	Full time care dependent to lots of restrictions	Self-forgetting in the shadow of full time care
9	Tiny candle of hope in the duality of denial-belief	Passing difficulties in the duality of hope-hopelessness
10	Passing the storm of difficulties riding the boat of time, patience, and believes	Passing difficulties in the duality of hope-hopelessness
11	Self-wanted isolation	Caring in a continuum of isolation-socialization
12	Reliving in the duality of hiding-finding sympathy	Caring in a continuum of isolation-socialization

3.1. Future tied to past

Mothers expressed the future of their children physical, mental and intellectual health are dependent to early diagnosis and on time treatment. If the diseases were diagnosed in the neonatal period it was possible to prevent most of their unpleasant consequences such as intellectual disability. It is hard to diagnosis IEAAMs as they are rare conditions and doctors known little about them. Also, sometimes doctors misdiagnosed them with most prevalent disease such as gastroenteritis or neurologic disorders and ordered inappropriate treatment, because of their nonspecific and obscure signs and symptoms.

Participant 1, 22 years old mother: "around 4–5 months old she got diarrhea and vomiting for 1 month and her growth stopped. I started protein foods and because of her disability to excert protein, the amount of her plasma urea increased, so she became flabbier and all the time doctors thought it is because of viral diarrhea. It was too late when we brought her to this hospital, she lost her consciousness, and her ammoniac level was 612, and went to coma. After she came out of coma, intellectual problem appeared, seizures started and her brain was involved."

Moreover, an ambiguous future is in front of mothers and children. Because of the wide spectrum of these diseases, the future signs and sequels are unclear and can cause little to intensive physical and mental problems, or even death. So, parents often do not receive clear information about the prognosis and what would happen.

Participants 2, 28 years old mother "They said 1000 different things, one said he wouldn't grow, one said he became intellectual disabled, one said nothing will happen. His disease is a kind that isn't clear yet, they are saying it is unclear what will happen to him because it has a wide spectrum and it isn't clear what other things will happen, it depends what type it is, for example sometimes recur, sometimes progress, and sometimes became a little bit better."

3.2. Mentally disturbed in the shadow of lost ideal child

Since IEAAMs are rare and chronic diseases without certain cure and have side-effects and sequels in most cases, mothers experienced grief and sorrow as soon as they realized the disease. The more time passed and more signs and symptoms appeared, mothers experienced more psychological problems such as depression, and anxiety, and in some cases they even needed to go to psychiatrist and start treatment.

Participants 5, 34 years old mother "At first I didn't know what this disease is, so I searched the internet many times and each time I found worse content than the previous, cried a lot. Then I found he can't eat protein foods, has short life span, and so on. I've found out it is incurable, became disappointed, depressed, and always cried."

Most of mothers said the acceptance of child's disease was so hard because they had a healthy child for the first months or years and then his/her conditions changed suddenly not only physically but also mentally and intellectually. Mothers who had planned to have healthy children and they were their mothers' entire hope and wishes, had to watch disappearing of the obtained abilities day by day, and each day waiting for new problems happen, or new sign or symptom add.

Participants 1, 22 years old mother "If my daughter had a problem, an intellectual problem when she was born, although it was difficult; I thought it was congenital and I accepted it easier. She was healthy till 6 months old and now she is completely disabled, it is though because we had seen her abilities, her playing, and now she is disabled, it is hard."

3.3. Rebellion and blaming, the ways of escaping difficulties

Mothers and children used different ways to face disease problems. Mother sometimes blamed others like family member and healthcare professionals to escape from their problems. In a few cases mothers were blamed by family members because the disease is congenital and they thought it just transferred from mothers to children.

Participants 1, 22 years old mother "I told my husband you caused this condition happen to our child, because she was hospitalized one week in our town and doctors told us she must go to Mashhad (to a pediatric tertiary hospital) for more tests that they didn't have there, but my husband objected and said she would became well at home"

Participants 4, 30 years old mother "Family blamed me a lot, as a doctor said the disease is congenital and they thought it transferred just only from mother to child"¹

As the children grow up to adolescent, sometimes they start stubbornness and non-adherence to their diet, the key element of their treatment, for breaking the restrictions of the disease.

Participant 3, mother of a 16 years old adolescent "She doesn't listen to me at all, she eats what she wants and doesn't adhere her diet. She cooks what she wants and eats them. Never listen to me."

3.4. Self-forgetting in the shadow of full time care

In families had a child with IEAAMs, the whole burden of care was on mothers. Mothers noted that the children need full-time care which is all up to them. Also, they were always in fear of the child get another disease or an infection, and her/his illness worsens.

Participants 6, 42 years old mother "Caring this child means full-time job, it is like I always have a work to do. Never free"

Participant 8, 50 years old mother "During night I check her many times, take her hands and assess if she is breathing or not, when I assure she is fine, then I thank God "

Because of multiple problems of these children, mothers were engaged fulltime in caring them and ignored their own needs and wishes. Mothers put all their attention on the children so that completely forgot themselves.

Participant 2, 28 years old mother "when I see other mothers have independence, can go out, and do their personal stuff, but I completely forget myself because caring this child is too much, I can't do anything for mine"

In addition to the time consumes for caring, there were lots of restriction that made the caring harder such as the cost of treatment, providing important and vital drugs, difficulty in accessing specialized medical centers, and the problems of preparing and bearing the special diet.

Participant 6, 42 years old mother "the cost of the disease is too much, and the insurance company doesn't support. I should have buy all of her drugs without insurance because the numbers of her drugs supported by the insurance is less than her needs. They support 10–15 tablets each month but she uses 4 tablets in a day. For me, the most important problem is providing her drugs, I must provide them before we run out of them, otherwise her plasma ammoniac level will increase, she become sick and seizures happen."

3.5. Passing difficulties in the duality of hope-hopelessness

Mothers choose different ways for facing the difficulties of caring a child with IEAAMs. Some of them believed in complete cure of the disease in future, and some denied the disease and try to provide some hope for themselves in order to bearing the difficulties.

Participant 2, 28 years old mother "I didn't believe his disease, yet. I still hope he doesn't have this disease and it will completely cure"

Participant 1, 22 years old mother "I'm hopeful that something happens and she cures"

Also, the majority of mothers could handle this situation as time passed, with patience, trust in God, and accepting the child's disease as a divine test or gift. Although some of mothers see this phenomenon as a divine torment and feel helplessness.

Participant 1, 22 years old mother "Now when I see other mothers, tell them about my diaries. When a problem happens, it is hard to accept it at first, but when you accept it you become comfort, at least you will not feel guilty. I tell them wait, everything will be right by time"

Participant 8, 50 years old mother "Whenever someone asks what you are doing with your problems? I only say God is with us. God looks at us and gave us 3 daughters, such good children. I think they are all the grace of God, and may be my daughter's disease is a test by God to see how much power I have. I always calm down my daughter and me this way."

3.6. Caring in a continuum of isolation-socialization

Most of mothers with a child with IEAAMs preferred not to communicate to others and choose isolation because of multiple reasons including taking care of the children takes too much time, they wanted to avoid others humiliating looks, and also parry the others numerous questions about the child's condition. Therefore, they selected self-wanted isolation instead of socialization.

Participant 2, 28 years old mother "Since this problem happened for my son, I didn't go to parties because of what people say. Always ask doesn't he speaks? Doesn't walk? Why you don't give him this or that food? and etc. These things annoy me a lot. I didn't tell anybody about my son's disease because his disease is unknown and if I want to explain it, at least takes 1–2 hour. What people say bother me the most ".

Sometimes mothers tried to speak to others to find sympathy and relief themselves. They found comfort in communication. Therefore, they selected socialization instead of isolation.

Participant 1, 22 years old mother "I used to talk to anyone sitting next to me, even in bus or subway. I expected to receive sympathy from all people and they all understand me, I loved to take mercy from anyone".

¹- In Persian the "congenital" term translated "maternal" and that’s the reason caused some persons thought it is the mother's fault.

The purpose of this study was deep understanding the meaning of caring a child with inborn errors of amino acid metabolism, so 6 themes were revealed including future tied to past, psychosis in the shadow of lost ideal child, rebellion and blaming, the ways of escaping difficulties, self-forgetting in the shadow of full time care, passing difficulties in the duality of hope-hopelessness, caring in a continuum of isolation-socialization.

Late diagnosis is one of the most important problems of families with a child with IEAAMs. Studies showed that the diagnosis of IEMs are delayed in other countries, too. Khangura et al (2016) confirmed that diagnosis of IEMs always accompany doubts and reaching to final diagnosis can takes time, and there are lots of unknown about the prognosis and future of these children (20). Also, Pelentsov et al (2016) and Berglund (2010) explained reaching the final diagnosis in rare disease including IEMs are difficult (21, 22). Deuitch et al (2021) described the diagnosis of these diseases are time consuming any may last some years (23). Yamaguchi et al (2016) quoted from Kubo et al (2008) that delay in diagnosis is because of healthcare professionals' lack of knowledge about these diseases (24). But, Zurynski et al (2017) mentioned that although delay in diagnosis of rare diseases is too much in Australia; IEMs are diagnosed faster than other rare conditions which is might to the national screening test of amino acid metabolism disorders in this country (25).

Late diagnosis has consequences affecting both parents and children. The more delay in diagnosis, the more physical and mental sequels happen to children, disease progress more and leads to inappropriate treatment (25). Also, it can cause anxiety, stress, and worries in parents (25)and the consequences of late diagnosis can be serious even if the child be in a good condition (26).

Children's disease is a crisis for families, and when it happens, parents try to find guilty persons to relief their pains by blaming them. Sometimes they blame healthcare professionals because of longtime diagnosis process. Eiser et al (1995) and Garau (2016) noted that parents believed the healthcare professionals' lack of knowledge about rare diseases is the reason of late diagnosis, which consequently resulted in physical and mental sequels (27, 28). Vice versa, sometimes parents are the ones are blamed by others (29, 30), specially mothers in genetic disorders (30).

Since the crisis of child's disease began, mothers have experienced different mntal and psychological problems. Studies showed that these problems can include anxiety and stress (24, 31, 32), negative feeling, anger, deny, and depression (12), loneliness (21), physical and emotional stress and feeling of inadequacy (33), internalization problems such as anxiety, depression, mood disorders, interpersonal challenges, low quality of life, grief and sorrow(34, 35), indigestion problems (34).

In addition to multiple problems and worries which mothers are facing to them, new problems appear by growing children to adolescents like non adherence to diet. Medford et al 2017 showed the adherence to treatment regimen decreased by children grew up and they wanted to escape their disease's challenges by disobeying parents. Yamaguchi 2016 narrated from Yuhara 1991 that children compare themselves with healthy children and tempted to consume restricted foods (24). Also Mc Mac. Donald et al 2012 AND Zeltner 2019 showed the adherence to diet in children with IEAAMs decrease by the age of 10 years old (36, 37), which might be the result of the transferring health responsibilities from parents to patients during adolescence (38, 39).

During the childhood, children with IEAAMs are partially or completely dependent to parents for care and daily activities because first IEAAMs occurs in first years of children life when they have no ability to care themselves, and secondly these disorders affect multiple body systems which need lifelong care and treatment (9). In these cases all of care burden is on the parents specifically mothers. Plentsov et al 2016 revealed that parents feel most of children care burden and disease management is on them and it makes lots of restriction for them (22). Therefore, parents should have considerable effort for decreasing the disease effects on children (12). Parents scarifying themselves for their caring role and became a caregiver and therapist for their fragile and vulnerable children, even at the cost of losing themselves (40). It is difficult for parents to find balance between work and child care, and it causes some mothers leave their jobs or decrease their work time, and their professional wishes lose their priority (22, 41).

Disease acceptance is difficult for parents most of the time and sometimes they try to deny it. Carpenter (2018) mentioned all parents could not be able to accept disease and prefer it doesn't exist and hope they had a normal child (12). On the other hand, some families try to increase their hope by religious beliefs and pass the difficulties. Nematollahi 2019 revealed parents try to care more by appreciation and communication with God (42). Zengin 2020, also, showed parents could cope with their problem by believe in God and life after death (9).

One of the biggest challenges of families have a child with IEAAMs is the way other look at their sick child which causes they feel stigma. In studies multiple factors introduced as the reasons of this feeling, for example parents thought that even different way of feeding the child draw people attention and made an unsatisfied situation (34, 43). Consequently, parents decided to decrease their relationships in order to avoid others heavy look, frequent questions, and comparing the child with healthy ones. Diesen 2014 showed that the area of stigma management is a continuum which intimacy and family isolation are its ends (43). Parents may feel unrelated or conversely expand their relations as a fighter and savior until their voice are heard and gain necessary services in health and social systems (40). Vegni et al (2009) revealed that patients thought the disease is not the subject by itself, rather continuously maintaining the difficult balance between socialization and isolation is their problem (44). Also, Ford (2018) and Plentsov (2016) showed that most of parents experience social isolation (22, 34). Stigma, misunderstandings, and feeling rejected from the society were common, too (34).

In this study, the first one explores mothers' experience of having a child with IEAAMs by qualitative method, showed that mothers have multiple challenges in taking care of their children. They mentally disturbed following the diagnosis of IEAAMs, a chronic and life threatening disease which affect multiple systems, they tried to accept it through patience, their beliefs, and sometimes blaming others or themselves. Also, we demonstrated mothers taking care of children full time that caused self-wanted isolation and even self-forgetfulness. These findings reveal the importance of psychological support of mothers. Also, we describe the possibility of preventing physical and mental problems in children and increasing their quality of life by fast and on time diagnosis of these diseases, which can be done by screening tests in neonates. It is suggested to study other inborn errors of metabolism and plan supportive programs for children and their mothers.

This study is done on families referring to one center which decrease its generalizability to international, although this center is a tertiary one which families with different culture referred to it and authors tried to enter participants with different experiences such as duration of disease and numbers of affected children in families. Also, this study was done during the COVID-19 pandemic which make impossible to interview with mothers in their homes, for more assessment of their daily life, in order to prevent the infection and all interviews were done in our center when the children were hospitalized or visited in day clinic.

IEAAM: inborn errors of amino acid metabolism, IEM: Inborn Errors of Metabolism, SIDS: sudden infant death syndrome.

8.1: Ethical approval and consent to participate: Mashhad University of Medical Sciences has an ethical committee to approve the study on humans and this study was approved (Ethical code: IR.MUMS.REC.1399.435). All methods were carried out in accordance with relevant guidelines and regulations. Also, all were performed by first author after communication and explanation of the study purpose and completing the informed consent by mothers.

8.2: Consent for publication: All mothers signed the informed consent for publication.

8.3: Availability of data and materials: The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

8.4: Competing interests: The authors declare that they have no competing interests.

8.5: Funding: This study received no funding.

8.6: Authors' contribution: SS was participated in conceptualization, methodology, data curation, methodology, project administration, formal analysis, resources, investigation, validation, writing original draft, review and editing. AH was contributed in conceptualization, methodology, supervision, visualization. MR participated in conceptualization, methodology, project administration, supervision, validation, visualization, writing original draft, writing- review and editing of the manuscript and PE contributed in conceptualization, methodology, and data gathering. All authors read and approved the final manuscript.

8.7: Acknowledgment: We appreciate all mothers participating in this study, patiently responded to our questions, and share their experiences with us. Also, we want to thank the doctors and nurses of Akbar pediatric hospital in Mashhad who modestly help us, specially Dr. Sepide Bagheri, Dr. Afsane Nazari, and Dr. Nosrat Ghaemi, the pediatric endocrinologists.

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No competing interests reported.

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published 07 Jun, 2023

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Mothers' Lived Experience of Caring for Children with Inborn Errors of Amino Acid Metabolism

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Journal Publication

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Abstract

Background

Methods

Results

Conclusions

1. Background:

2. Methods:

3. Results:

3.1. Future tied to past

3.2. Mentally disturbed in the shadow of lost ideal child

3.3. Rebellion and blaming, the ways of escaping difficulties

3.4. Self-forgetting in the shadow of full time care

3.5. Passing difficulties in the duality of hope-hopelessness

3.6. Caring in a continuum of isolation-socialization

4. Discussion:

5. Conclusion:

6. Study Limitation:

7. List Of Abbreviations:

8. Declaration:

References:

Additional Declarations

Status:

Journal Publication

Version 1