Knowledge Can Reduce Anxiety in Hospitalized Children

Talking to hospitalized children holds the same basic perils as dealing with children in any situation: How much do they know? How much should they know? When should they know it?

The answers may be found in the tangled web of physicians, nurses, parents, and the young patients themselves, suggests an Irish study published in the August issue of the Journal of Clinical Nursing.

Imelda Coyne, Ph.D., of the School of Nursery & Midwifery at Trinity College in Dublin, and her colleague, Pamela Gallagher, Ph.D., of Dublin City University found that children want to be included in conversations about their own health, but are often left in the dark, largely because of adults’ actions. Children spoke of being asked a few specific questions by physicians, but then the physicians would conduct the rest of the conversation with their parents. Or physicians would take their parents elsewhere to talk, leaving the children apprehensive and alone.

In a study involving focus groups and individual interviews from 10 wards and two clinics (one outpatient) in three hospitals in Ireland, results showed that only approximately 9% of children aged 7-18 years had positive experiences during their hospital stay in terms of experiences of participation in communication and decision-making in their care, Dr. Coyne said in an interview. This despite the United Nations Convention on the Rights of the Child in 1989 emphasizing that children’s voices should be heard, and the endorsement of the concept in Ireland (Ireland’s Department of Health and Children, 2000) as well as in the United States (American Academy of Pediatrics Committee on Bioethics 1995, Pediatrics 1995;95:314-7), the researchers wrote.

This lack of communication created a spur of negative feelings in the children who expressed anxiety and loneliness. Or children felt physicians "do things" to them with little or no explanation, according to the article reporting the qualitative study of 55 hospitalized children and teenagers, aged 7-18 years.

"I need to know because otherwise I’m going to be sitting there panicking going all paranoid thinking about the worst scenario," a 13-year-old girl was quoted in the published report.

The final sample of children included 28 children with acute illnesses such as appendicitis, fractures, infection, or constipation, and 27 children with chronic illnesses such as asthma, diabetes, cystic fibrosis, or sickle cell disease (J. Clin. Nurs. 2011;20: 2334-43).

Dr. Jack Gladstein, director of the pediatric hospitalist program and professor of pediatrics and neurology at the University of Maryland Medical Center, Baltimore, said the article from Ireland is "is right on target, and our inpatient pediatric unit changed our care" to reflect similar thinking.

"Six years ago, I was asked to bring our inpatient unit up to date," Dr. Gladstein said in an interview. "We were using an old model where rounding took place in the hall outside a patient’s room with the door shut, with no input from the patient, family, or nurse. Now all rounds take place in the patient’s room and include input from the child, parents, and nurse. We all see what the child looks like, how sick the child is.

"I ask children open-ended questions, such as, ‘Is there something you want to ask your team?’ I stand next to the mom, and if the resident speaks in gibberish, I’ll ask the mom, ‘Did you understand that?’ "

Since changing to this model, there has been an increase in safety and an increase in satisfaction for the physicians, patients, and nurses, as well as a decrease in length of stay, he said.

"What we’re learned is that there is nothing you can’t say in front of the family. Kids know that they’re sick. Hearing the treatment plan instills hope and takes away their worries. Even with very young children – 2- to 3-year-olds – [it helps that] they see the same people each day, people who go in, and play with them and make them smile. It is all about allaying fear," Dr. Gladstein said.

"You can empower children by letting them take part in their care. For example, when a child has an abscess, you might have the child remove the bandage and then put a new one back on. There is no downside to being at the bedside as much as possible," he noted.

At All Children’s Hospital in St. Petersburg, Fla., openness is the rule. Although the age of assent there is 7 years old, Dr. Gregory A. Hale of the hospital’s hematology and oncology division suggests that an honest relationship with the patient, at any age, is pertinent to a sick child’s development and may prevent the child from jumping to conclusions about his/her health.

"Knowledge, to a certain extent, alleviates fear. A lot of times, if you give kids a little bit of knowledge, they’re not so intimidated to ask their doctor a question," he said in an interview, emphasizing that all communication should be done in an age- and developmentally-appropriate manner.

For example, at All Children’s, child life specialists use a puppet to explain to younger patients about different types of cancers, how to take medication, and the basics of blood test results.

At Seattle Children’s Hospital, Dr. Glen S. Tamura, director of the inpatient medical service, found that, similar to findings of the study, children – particularly younger patients –are especially unlikely to start in-depth dialogue with their health care team. They prefer to stick with getting information from Mom or Dad.

"[Children] are not initiating the conversation, for the most part. You need to engage them. That said, when you engage them, they frequently have an opinion," he said in an interview.

Family-centered care is central in making sure that everybody is aware of what is happening, according to these doctors and St. Jude Children’s Research Hospital’s bone marrow transplant board life specialist, Ashley Carr. With consistent rounds with medical teams and parents, patients are able to maintain ongoing and close relationships with both physicians and nurses and have their frequent questions of – "Is it going to hurt?" or "Am I going to die?"– answered.

"[Our doctors] know what these kids like to do before they were patients at St. Jude’s," Ms. Carr said in an interview. "They go the extra mile, and they take the extra step to get to know these families as a whole and not just as a patient."

In the published study, a teenage girl articulated how the inverse in the physician-patient interaction can be equally valuable. "[The doctor] started telling me about himself which kind of got me more kind of like trusting to him that he’s going to make the right decision."

Unfortunately, too often it’s parents and guardians who are the highest hurdle in communicating with pediatric inpatients. They may be trying to protect the child or simply be offering up wrong information on their child’s behalf, the study authors observed. "Therefore, children should be allowed the opportunity to volunteer their own information," they wrote, quoting a 13-year-old boy’s sentiments this way: "I think the children should get the opportunity to tell what they think it is and not just what their parents or the doctors think it is."

And some children in the study reported learning how to negotiate the system to get the most out of talking with their doctors. As a boy, age 11, put it: "If you keep being on them and asking all these questions, they are going to get annoyed and they’ll tell you anything, so you shouldn’t really ask them that much, ask them a few times, that’s it. You just have to wait until they come to you, and if you wait, they’re much nicer to you."

Study author Dr. Coyne has considered the root of why some physicians struggle with communication issues surrounding young patients. "I believe some doctors are trying really hard to include children, but they find it difficult to get around the parent that’s blocking them," she said. "Maybe if they had good education at an undergraduate level in their medical curriculum [on] how to communicate with children and how to handle triadic encounters, then they might be better at being able to facilitate the child’s needs and the parent’s needs."

"Ultimately, these parents are their child’s biggest team leaders. They’re their biggest support, so if a parent is uncomfortable sharing information right away, I just continue to support them and educate them and continue to advocate for what I’m seeing the patient needing," Ms. Carr said.

The results of this study suggest that guidelines and policies should be established to ensure full communication among all three parties, Dr. Coyne said.

"Health care organizations need to build cultures of participation where participation is firmly embedded, not just a desirable add-on," according to the study authors. "Given that children’s participation improves the quality of care provided, it is an important investment and one that requires adults to move to a child-centered approach in how they relate to children."

"We shouldn’t discount their views just because they’re children," they said.

Funding for this study was provided by the Office of the Minister for Children, Department of Health and Children, Dublin. Researchers reported no other relevant financial disclosures.

Talking to hospitalized children holds the same basic perils as dealing with children in any situation: How much do they know? How much should they know? When should they know it?

The answers may be found in the tangled web of physicians, nurses, parents, and the young patients themselves, suggests an Irish study published in the August issue of the Journal of Clinical Nursing.

Imelda Coyne, Ph.D., of the School of Nursery & Midwifery at Trinity College in Dublin, and her colleague, Pamela Gallagher, Ph.D., of Dublin City University found that children want to be included in conversations about their own health, but are often left in the dark, largely because of adults’ actions. Children spoke of being asked a few specific questions by physicians, but then the physicians would conduct the rest of the conversation with their parents. Or physicians would take their parents elsewhere to talk, leaving the children apprehensive and alone.

In a study involving focus groups and individual interviews from 10 wards and two clinics (one outpatient) in three hospitals in Ireland, results showed that only approximately 9% of children aged 7-18 years had positive experiences during their hospital stay in terms of experiences of participation in communication and decision-making in their care, Dr. Coyne said in an interview. This despite the United Nations Convention on the Rights of the Child in 1989 emphasizing that children’s voices should be heard, and the endorsement of the concept in Ireland (Ireland’s Department of Health and Children, 2000) as well as in the United States (American Academy of Pediatrics Committee on Bioethics 1995, Pediatrics 1995;95:314-7), the researchers wrote.

This lack of communication created a spur of negative feelings in the children who expressed anxiety and loneliness. Or children felt physicians "do things" to them with little or no explanation, according to the article reporting the qualitative study of 55 hospitalized children and teenagers, aged 7-18 years.

"I need to know because otherwise I’m going to be sitting there panicking going all paranoid thinking about the worst scenario," a 13-year-old girl was quoted in the published report.

The final sample of children included 28 children with acute illnesses such as appendicitis, fractures, infection, or constipation, and 27 children with chronic illnesses such as asthma, diabetes, cystic fibrosis, or sickle cell disease (J. Clin. Nurs. 2011;20: 2334-43).

Dr. Jack Gladstein, director of the pediatric hospitalist program and professor of pediatrics and neurology at the University of Maryland Medical Center, Baltimore, said the article from Ireland is "is right on target, and our inpatient pediatric unit changed our care" to reflect similar thinking.

"Six years ago, I was asked to bring our inpatient unit up to date," Dr. Gladstein said in an interview. "We were using an old model where rounding took place in the hall outside a patient’s room with the door shut, with no input from the patient, family, or nurse. Now all rounds take place in the patient’s room and include input from the child, parents, and nurse. We all see what the child looks like, how sick the child is.

"I ask children open-ended questions, such as, ‘Is there something you want to ask your team?’ I stand next to the mom, and if the resident speaks in gibberish, I’ll ask the mom, ‘Did you understand that?’ "

Since changing to this model, there has been an increase in safety and an increase in satisfaction for the physicians, patients, and nurses, as well as a decrease in length of stay, he said.

"What we’re learned is that there is nothing you can’t say in front of the family. Kids know that they’re sick. Hearing the treatment plan instills hope and takes away their worries. Even with very young children – 2- to 3-year-olds – [it helps that] they see the same people each day, people who go in, and play with them and make them smile. It is all about allaying fear," Dr. Gladstein said.

"You can empower children by letting them take part in their care. For example, when a child has an abscess, you might have the child remove the bandage and then put a new one back on. There is no downside to being at the bedside as much as possible," he noted.

At All Children’s Hospital in St. Petersburg, Fla., openness is the rule. Although the age of assent there is 7 years old, Dr. Gregory A. Hale of the hospital’s hematology and oncology division suggests that an honest relationship with the patient, at any age, is pertinent to a sick child’s development and may prevent the child from jumping to conclusions about his/her health.

"Knowledge, to a certain extent, alleviates fear. A lot of times, if you give kids a little bit of knowledge, they’re not so intimidated to ask their doctor a question," he said in an interview, emphasizing that all communication should be done in an age- and developmentally-appropriate manner.

For example, at All Children’s, child life specialists use a puppet to explain to younger patients about different types of cancers, how to take medication, and the basics of blood test results.

At Seattle Children’s Hospital, Dr. Glen S. Tamura, director of the inpatient medical service, found that, similar to findings of the study, children – particularly younger patients –are especially unlikely to start in-depth dialogue with their health care team. They prefer to stick with getting information from Mom or Dad.

"[Children] are not initiating the conversation, for the most part. You need to engage them. That said, when you engage them, they frequently have an opinion," he said in an interview.

Family-centered care is central in making sure that everybody is aware of what is happening, according to these doctors and St. Jude Children’s Research Hospital’s bone marrow transplant board life specialist, Ashley Carr. With consistent rounds with medical teams and parents, patients are able to maintain ongoing and close relationships with both physicians and nurses and have their frequent questions of – "Is it going to hurt?" or "Am I going to die?"– answered.

"[Our doctors] know what these kids like to do before they were patients at St. Jude’s," Ms. Carr said in an interview. "They go the extra mile, and they take the extra step to get to know these families as a whole and not just as a patient."

In the published study, a teenage girl articulated how the inverse in the physician-patient interaction can be equally valuable. "[The doctor] started telling me about himself which kind of got me more kind of like trusting to him that he’s going to make the right decision."

Unfortunately, too often it’s parents and guardians who are the highest hurdle in communicating with pediatric inpatients. They may be trying to protect the child or simply be offering up wrong information on their child’s behalf, the study authors observed. "Therefore, children should be allowed the opportunity to volunteer their own information," they wrote, quoting a 13-year-old boy’s sentiments this way: "I think the children should get the opportunity to tell what they think it is and not just what their parents or the doctors think it is."

And some children in the study reported learning how to negotiate the system to get the most out of talking with their doctors. As a boy, age 11, put it: "If you keep being on them and asking all these questions, they are going to get annoyed and they’ll tell you anything, so you shouldn’t really ask them that much, ask them a few times, that’s it. You just have to wait until they come to you, and if you wait, they’re much nicer to you."

Study author Dr. Coyne has considered the root of why some physicians struggle with communication issues surrounding young patients. "I believe some doctors are trying really hard to include children, but they find it difficult to get around the parent that’s blocking them," she said. "Maybe if they had good education at an undergraduate level in their medical curriculum [on] how to communicate with children and how to handle triadic encounters, then they might be better at being able to facilitate the child’s needs and the parent’s needs."

"Ultimately, these parents are their child’s biggest team leaders. They’re their biggest support, so if a parent is uncomfortable sharing information right away, I just continue to support them and educate them and continue to advocate for what I’m seeing the patient needing," Ms. Carr said.

The results of this study suggest that guidelines and policies should be established to ensure full communication among all three parties, Dr. Coyne said.

"Health care organizations need to build cultures of participation where participation is firmly embedded, not just a desirable add-on," according to the study authors. "Given that children’s participation improves the quality of care provided, it is an important investment and one that requires adults to move to a child-centered approach in how they relate to children."

"We shouldn’t discount their views just because they’re children," they said.

Funding for this study was provided by the Office of the Minister for Children, Department of Health and Children, Dublin. Researchers reported no other relevant financial disclosures.

Talking to hospitalized children holds the same basic perils as dealing with children in any situation: How much do they know? How much should they know? When should they know it?

The answers may be found in the tangled web of physicians, nurses, parents, and the young patients themselves, suggests an Irish study published in the August issue of the Journal of Clinical Nursing.

Imelda Coyne, Ph.D., of the School of Nursery & Midwifery at Trinity College in Dublin, and her colleague, Pamela Gallagher, Ph.D., of Dublin City University found that children want to be included in conversations about their own health, but are often left in the dark, largely because of adults’ actions. Children spoke of being asked a few specific questions by physicians, but then the physicians would conduct the rest of the conversation with their parents. Or physicians would take their parents elsewhere to talk, leaving the children apprehensive and alone.

In a study involving focus groups and individual interviews from 10 wards and two clinics (one outpatient) in three hospitals in Ireland, results showed that only approximately 9% of children aged 7-18 years had positive experiences during their hospital stay in terms of experiences of participation in communication and decision-making in their care, Dr. Coyne said in an interview. This despite the United Nations Convention on the Rights of the Child in 1989 emphasizing that children’s voices should be heard, and the endorsement of the concept in Ireland (Ireland’s Department of Health and Children, 2000) as well as in the United States (American Academy of Pediatrics Committee on Bioethics 1995, Pediatrics 1995;95:314-7), the researchers wrote.

This lack of communication created a spur of negative feelings in the children who expressed anxiety and loneliness. Or children felt physicians "do things" to them with little or no explanation, according to the article reporting the qualitative study of 55 hospitalized children and teenagers, aged 7-18 years.

"I need to know because otherwise I’m going to be sitting there panicking going all paranoid thinking about the worst scenario," a 13-year-old girl was quoted in the published report.

The final sample of children included 28 children with acute illnesses such as appendicitis, fractures, infection, or constipation, and 27 children with chronic illnesses such as asthma, diabetes, cystic fibrosis, or sickle cell disease (J. Clin. Nurs. 2011;20: 2334-43).

Dr. Jack Gladstein, director of the pediatric hospitalist program and professor of pediatrics and neurology at the University of Maryland Medical Center, Baltimore, said the article from Ireland is "is right on target, and our inpatient pediatric unit changed our care" to reflect similar thinking.

"Six years ago, I was asked to bring our inpatient unit up to date," Dr. Gladstein said in an interview. "We were using an old model where rounding took place in the hall outside a patient’s room with the door shut, with no input from the patient, family, or nurse. Now all rounds take place in the patient’s room and include input from the child, parents, and nurse. We all see what the child looks like, how sick the child is.

"I ask children open-ended questions, such as, ‘Is there something you want to ask your team?’ I stand next to the mom, and if the resident speaks in gibberish, I’ll ask the mom, ‘Did you understand that?’ "

Since changing to this model, there has been an increase in safety and an increase in satisfaction for the physicians, patients, and nurses, as well as a decrease in length of stay, he said.

"What we’re learned is that there is nothing you can’t say in front of the family. Kids know that they’re sick. Hearing the treatment plan instills hope and takes away their worries. Even with very young children – 2- to 3-year-olds – [it helps that] they see the same people each day, people who go in, and play with them and make them smile. It is all about allaying fear," Dr. Gladstein said.

"You can empower children by letting them take part in their care. For example, when a child has an abscess, you might have the child remove the bandage and then put a new one back on. There is no downside to being at the bedside as much as possible," he noted.

At All Children’s Hospital in St. Petersburg, Fla., openness is the rule. Although the age of assent there is 7 years old, Dr. Gregory A. Hale of the hospital’s hematology and oncology division suggests that an honest relationship with the patient, at any age, is pertinent to a sick child’s development and may prevent the child from jumping to conclusions about his/her health.

"Knowledge, to a certain extent, alleviates fear. A lot of times, if you give kids a little bit of knowledge, they’re not so intimidated to ask their doctor a question," he said in an interview, emphasizing that all communication should be done in an age- and developmentally-appropriate manner.

For example, at All Children’s, child life specialists use a puppet to explain to younger patients about different types of cancers, how to take medication, and the basics of blood test results.

At Seattle Children’s Hospital, Dr. Glen S. Tamura, director of the inpatient medical service, found that, similar to findings of the study, children – particularly younger patients –are especially unlikely to start in-depth dialogue with their health care team. They prefer to stick with getting information from Mom or Dad.

"[Children] are not initiating the conversation, for the most part. You need to engage them. That said, when you engage them, they frequently have an opinion," he said in an interview.

Family-centered care is central in making sure that everybody is aware of what is happening, according to these doctors and St. Jude Children’s Research Hospital’s bone marrow transplant board life specialist, Ashley Carr. With consistent rounds with medical teams and parents, patients are able to maintain ongoing and close relationships with both physicians and nurses and have their frequent questions of – "Is it going to hurt?" or "Am I going to die?"– answered.

"[Our doctors] know what these kids like to do before they were patients at St. Jude’s," Ms. Carr said in an interview. "They go the extra mile, and they take the extra step to get to know these families as a whole and not just as a patient."

In the published study, a teenage girl articulated how the inverse in the physician-patient interaction can be equally valuable. "[The doctor] started telling me about himself which kind of got me more kind of like trusting to him that he’s going to make the right decision."

Unfortunately, too often it’s parents and guardians who are the highest hurdle in communicating with pediatric inpatients. They may be trying to protect the child or simply be offering up wrong information on their child’s behalf, the study authors observed. "Therefore, children should be allowed the opportunity to volunteer their own information," they wrote, quoting a 13-year-old boy’s sentiments this way: "I think the children should get the opportunity to tell what they think it is and not just what their parents or the doctors think it is."

And some children in the study reported learning how to negotiate the system to get the most out of talking with their doctors. As a boy, age 11, put it: "If you keep being on them and asking all these questions, they are going to get annoyed and they’ll tell you anything, so you shouldn’t really ask them that much, ask them a few times, that’s it. You just have to wait until they come to you, and if you wait, they’re much nicer to you."

Study author Dr. Coyne has considered the root of why some physicians struggle with communication issues surrounding young patients. "I believe some doctors are trying really hard to include children, but they find it difficult to get around the parent that’s blocking them," she said. "Maybe if they had good education at an undergraduate level in their medical curriculum [on] how to communicate with children and how to handle triadic encounters, then they might be better at being able to facilitate the child’s needs and the parent’s needs."

"Ultimately, these parents are their child’s biggest team leaders. They’re their biggest support, so if a parent is uncomfortable sharing information right away, I just continue to support them and educate them and continue to advocate for what I’m seeing the patient needing," Ms. Carr said.

The results of this study suggest that guidelines and policies should be established to ensure full communication among all three parties, Dr. Coyne said.

"Health care organizations need to build cultures of participation where participation is firmly embedded, not just a desirable add-on," according to the study authors. "Given that children’s participation improves the quality of care provided, it is an important investment and one that requires adults to move to a child-centered approach in how they relate to children."

"We shouldn’t discount their views just because they’re children," they said.

Funding for this study was provided by the Office of the Minister for Children, Department of Health and Children, Dublin. Researchers reported no other relevant financial disclosures.