Parents of Childhood Cancer Patients Knock Hospital Visiting Restrictions

DENVER — Parents of children with cancer are requesting a more balanced approach to hospital-visiting restrictions this flu season, one that recognizes the hardships that these restrictions impose on patients and their families.

A national survey that was conducted in January 2010 of 205 parent members of SuperSibs! (a nonprofit childhood cancer support group) indicates that visiting restrictions aimed at limiting the spread of H1N1 influenza at the time of the survey exacerbated the adverse emotional and economic impact of cancer on patients and their families, Melanie Goldish reported at the annual meeting of the American Public Health Association.

Although parents understood and appreciated the reasons why the H1N1-related visitation restrictions were in place, most felt they were too restrictive, harsh, and potentially ineffective, said Ms. Goldish, executive director and founder of SuperSibs! in Palatine, Ill. 

Although visiting restrictions varied among institutions, 62% of parents reported that siblings younger than a specified age weren’t allowed in the hospital at all, and 24% said that siblings younger than a certain age were allowed only in the lobby area.

Among the respondents, 64% indicated that they as parents had been negatively affected by H1N1-related visiting restrictions, as were 50% of their children with cancer and 56% of the siblings.

The parents reported that 34% of siblings younger than age 8 years became markedly more anxious because they couldn’t visit the patient, and 27% experienced separation anxiety because of their inability to see the parent who was isolated along with the hospitalized child.

These same issues were even more pronounced among siblings aged 8-12 years, who often also developed psychosomatic symptoms and acting-out behaviors that were attributed by parents to the forced isolation.

Three-quarters of parents said that the H1N1-related visiting restrictions had required them to make burdensome changes, including fewer or shorter visits with the hospitalized child, altered work schedules, more frequent hiring of babysitters, and the need to have siblings stay with relatives or friends.

The survey respondents called for changes to hospital-visiting restrictions that strike a balance between preserving the safety of the hospitalized child and avoiding undue added emotional distress for parents and siblings, according to Ms. Goldish.

Among the survey respondents’ specific suggestions were the following:

• Allow the non-sick siblings and parents in the patient’s hospital room, provided they have had a documented influenza vaccination.

• Offer vaccinations on-site.

• Require visitors to use masks and hand sanitizers while in the patient’s room.

• Use Internet-based Webcams to allow siblings at home to visit with the patient and parent in the hospital.

• Provide access to off-site social workers and caregiver services.

SuperSibs! provides detailed recommendations for parents and medical professionals regarding H1N1-related visiting restrictions.

Ms. Goldish reported having no relevant financial interests.

DENVER — Parents of children with cancer are requesting a more balanced approach to hospital-visiting restrictions this flu season, one that recognizes the hardships that these restrictions impose on patients and their families.

A national survey that was conducted in January 2010 of 205 parent members of SuperSibs! (a nonprofit childhood cancer support group) indicates that visiting restrictions aimed at limiting the spread of H1N1 influenza at the time of the survey exacerbated the adverse emotional and economic impact of cancer on patients and their families, Melanie Goldish reported at the annual meeting of the American Public Health Association.

Although parents understood and appreciated the reasons why the H1N1-related visitation restrictions were in place, most felt they were too restrictive, harsh, and potentially ineffective, said Ms. Goldish, executive director and founder of SuperSibs! in Palatine, Ill. 

Although visiting restrictions varied among institutions, 62% of parents reported that siblings younger than a specified age weren’t allowed in the hospital at all, and 24% said that siblings younger than a certain age were allowed only in the lobby area.

Among the respondents, 64% indicated that they as parents had been negatively affected by H1N1-related visiting restrictions, as were 50% of their children with cancer and 56% of the siblings.

The parents reported that 34% of siblings younger than age 8 years became markedly more anxious because they couldn’t visit the patient, and 27% experienced separation anxiety because of their inability to see the parent who was isolated along with the hospitalized child.

These same issues were even more pronounced among siblings aged 8-12 years, who often also developed psychosomatic symptoms and acting-out behaviors that were attributed by parents to the forced isolation.

Three-quarters of parents said that the H1N1-related visiting restrictions had required them to make burdensome changes, including fewer or shorter visits with the hospitalized child, altered work schedules, more frequent hiring of babysitters, and the need to have siblings stay with relatives or friends.

The survey respondents called for changes to hospital-visiting restrictions that strike a balance between preserving the safety of the hospitalized child and avoiding undue added emotional distress for parents and siblings, according to Ms. Goldish.

Among the survey respondents’ specific suggestions were the following:

• Allow the non-sick siblings and parents in the patient’s hospital room, provided they have had a documented influenza vaccination.

• Offer vaccinations on-site.

• Require visitors to use masks and hand sanitizers while in the patient’s room.

• Use Internet-based Webcams to allow siblings at home to visit with the patient and parent in the hospital.

• Provide access to off-site social workers and caregiver services.

SuperSibs! provides detailed recommendations for parents and medical professionals regarding H1N1-related visiting restrictions.

Ms. Goldish reported having no relevant financial interests.

DENVER — Parents of children with cancer are requesting a more balanced approach to hospital-visiting restrictions this flu season, one that recognizes the hardships that these restrictions impose on patients and their families.

A national survey that was conducted in January 2010 of 205 parent members of SuperSibs! (a nonprofit childhood cancer support group) indicates that visiting restrictions aimed at limiting the spread of H1N1 influenza at the time of the survey exacerbated the adverse emotional and economic impact of cancer on patients and their families, Melanie Goldish reported at the annual meeting of the American Public Health Association.

Although parents understood and appreciated the reasons why the H1N1-related visitation restrictions were in place, most felt they were too restrictive, harsh, and potentially ineffective, said Ms. Goldish, executive director and founder of SuperSibs! in Palatine, Ill. 

Although visiting restrictions varied among institutions, 62% of parents reported that siblings younger than a specified age weren’t allowed in the hospital at all, and 24% said that siblings younger than a certain age were allowed only in the lobby area.

Among the respondents, 64% indicated that they as parents had been negatively affected by H1N1-related visiting restrictions, as were 50% of their children with cancer and 56% of the siblings.

The parents reported that 34% of siblings younger than age 8 years became markedly more anxious because they couldn’t visit the patient, and 27% experienced separation anxiety because of their inability to see the parent who was isolated along with the hospitalized child.

These same issues were even more pronounced among siblings aged 8-12 years, who often also developed psychosomatic symptoms and acting-out behaviors that were attributed by parents to the forced isolation.

Three-quarters of parents said that the H1N1-related visiting restrictions had required them to make burdensome changes, including fewer or shorter visits with the hospitalized child, altered work schedules, more frequent hiring of babysitters, and the need to have siblings stay with relatives or friends.

The survey respondents called for changes to hospital-visiting restrictions that strike a balance between preserving the safety of the hospitalized child and avoiding undue added emotional distress for parents and siblings, according to Ms. Goldish.

Among the survey respondents’ specific suggestions were the following:

• Allow the non-sick siblings and parents in the patient’s hospital room, provided they have had a documented influenza vaccination.

• Offer vaccinations on-site.

• Require visitors to use masks and hand sanitizers while in the patient’s room.

• Use Internet-based Webcams to allow siblings at home to visit with the patient and parent in the hospital.

• Provide access to off-site social workers and caregiver services.

SuperSibs! provides detailed recommendations for parents and medical professionals regarding H1N1-related visiting restrictions.

Ms. Goldish reported having no relevant financial interests.