AppendixE_Finding SupportSPA

está enfermo, los hermanos pueden sentirse
relegados o resentidos, y posiblemente culpables
por sus sentimientos. Igualmente, los hermanos
pequeños pueden sentirse atemorizados o
confundidos. Es importante que se extienda el apoyo
a los hermanos que necesiten expresar emociones
o necesiten tomar un descanso. Hable con sus
hijos acerca de las necesidades que ellos tienen, y
las maneras en que les gustaría recibir apoyo. Por
ejemplo, por medio de:
• Música y arte
• Tutorías
• Campamentos para
• Juegos con otros niños
hermanos
• Grupos de apoyo
• Terapia

Providers

g about pediatric
ive care.

lth care provider, you are
positioned to discuss options for
care with your pediatric patients
r families. This conversation can
cate families about palliative
sure clear communication
provider and family, and build
st and confidence in you.

an use this pad?

r-off pad was designed to help
are professionals from any
e working in any setting engage
ctive palliative care discussions
iatric patients and their families.
ot need to have a specialty
tive care to use this tool.
ally, you can use the pad even
ospital does not have a built-in
palliative care team. See the
e of this page for information and
s to help you use this tool.

™

®

Instructions on how to use this pad.

This pad includes basic information about pediatric palliative care and
explains how it can work with ongoing treatment to help improve quality
of life for the patient and family. The front and back covers of this tear-off
pad have information for you—the health care provider. The 50, doublesided patient pages in between are meant to guide the discussion with your
patient and his/her parent or caregiver. The pages allow you to customize
your recommendations based on the patient’s and family’s individual
knowledge, past experiences, needs, and interests. The following steps
correspond to each section on the patient pages of the pad.

1. Start the discussion by providing background on palliative care. Patients
and their families are often unfamiliar with the term and what services
are included.

2. Explain which palliative care services are available in your care setting.
Check the boxes of services appropriate for the patient, and use the
space provided below each box to make specific recommendations on
appropriate care.
3. Provide information about additional palliative care services in your
community. This might include home-based care teams, tertiary care
facilities, community health centers, or a local social worker or faith leader
experienced in palliative care.

Note: Your hospital or practice setting may be able to provide you with
information about available resources. Consider working with your hospital to
create a sticker listing resources in your community to affix over the Palliative
care help in your community section.

Apoyo para los hermanos: Cuando un niño

Generalmente un grupo de apoyo cuenta
con la guía de una persona que ha
vivido la misma situación (por ej., un
sobreviviente) o un especialista en salud
mental. Algunos grupos están dirigidos
específicamente a pacientes o a los padres,
mientras que otros permiten que participe toda la
familia, incluidos los hermanos y abuelos. El tema
principal de la conversación también puede variar;
algunos grupos analizan una enfermedad o un
síntoma específico y otros ofrecen un apoyo familiar
más general.
4. Provide information about the different members of a palliative care
team and use the space provided to recommend a team for the patient
and his or her family. Include the names and contact information of the
recommended team (e.g., social worker, chaplain, dietitian, home health
aide, etc.).
5. It is important to convey to patients and their families that this is the
first of many conversations. Fill in the space provided with a date and
recurring time frame for when the patient’s care will be discussed.

Reiterate that palliative care provides support for patients and family members
during this difficult time. Suggest that the patient and/or family use the space
provided for notes or questions for your next conversation.

ser una fuente de consuelo y conexión durante
experiencias difíciles. Existen diferentes clases de
grupos, y se encuentran disponibles en línea y en
forma presencial.

Grupos de apoyo: Los grupos de apoyo pueden
Una enfermedad grave en un niño afecta a toda la
familia. Aunque el equipo de cuidados paliativos
pediátricos es el mejor recurso disponible, a
continuación se encuentran otros tipos de apoyos
adicionales que podrían mejorar la calidad de vida
de su familia ante esta situación.

Consejos sobre cuidados paliativos pediátricos

En busca de apoyo para la familia

™

CUIDADOS PALIATIVOS

Providers

Por su bienestar y su vida

Conversaciones Valiosas™
®

http://ninr.nih.gov/conversationsmatter

Para obtener más recursos, visite:
Instructions on how to use this pad.

This pad includes basic information about pediatric palliative care and
explains how it can work with ongoing treatment to help improve quality
of life for the patient and family. The front and back covers of this tear-off
pad have information for you—the health care provider. The 50, doublesided patient pages in between are meant to guide the discussion with your
patient and his/her parent or caregiver. The pages allow you to customize
your recommendations based on the patient’s and family’s individual
knowledge, past experiences, needs, and interests. The following steps
correspond to each section on the patient pages of the pad.

(inclusive en medios sociales como Facebook) que
lo ayuden a conectarse con amigos, parientes y
otras familias con experiencias similares. Existen
sitios que le permiten crear páginas web privadas,
lo que facilita la tarea de mantener al tanto a sus
seres queridos.

g about pediatric
ive care.

lth care provider, you are
positioned to discuss options for
care with your pediatric patients
r families. This conversation can
cate families about palliative
sure clear communication
provider and family, and build
st and confidence in you.

an use this pad?

1. Start the discussion by providing background on palliative care. Patients
and their families are often unfamiliar with the term and what services
are included.

2. Explain which palliative care services are available in your care setting.
Check the boxes of services appropriate for the patient, and use the
space provided below each box to make specific recommendations on
appropriate care.

Recursos en línea: Busque páginas web

r-off pad was designed to help
are professionals from any
e working in any setting engage
ctive palliative care discussions
iatric patients and their families.
ot need to have a specialty
tive care to use this tool.
ally, you can use the pad even
ospital does not have a built-in
palliative care team. See the
e of this page for information and
s to help you use this tool.

ideas al proveedor de atención de la salud
o al equipo de cuidados paliativos de su
hijo. También puede buscar publicaciones en la
pizarra de noticias o el sitio web de su hospital o
clínica, o buscar en Internet guías de recursos en
la ciudad y el condado. Igualmente puede recibir
sugerencias de una organización local enfocada en
la enfermedad de su hijo.
3. Provide information about additional palliative care services in your
community. This might include home-based care teams, tertiary care
facilities, community health centers, or a local social worker or faith leader
experienced in palliative care.

Note: Your hospital or practice setting may be able to provide you with
information about available resources. Consider working with your hospital to
create a sticker listing resources in your community to affix over the Palliative
care help in your community section.

4. Provide information about the different members of a palliative care
team and use the space provided to recommend a team for the patient
and his or her family. Include the names and contact information of the
recommended team (e.g., social worker, chaplain, dietitian, home health
aide, etc.).
5. It is important to convey to patients and their families that this is the
first of many conversations. Fill in the space provided with a date and
recurring time frame for when the patient’s care will be discussed.

Recursos locales: Empiece por solicitar
Reiterate that palliative care provides support for patients and family members
during this difficult time. Suggest that the patient and/or family use the space
provided for notes or questions for your next conversation.

estudiantes deben poder continuar su
educación en una escuela, en una clínica o en
la casa. Para desarrollar un plan, reúnase con
el asesor escolar y el enfermero, y hablen de
las preguntas y las inquietudes que se tengan.
Hable también con los maestros, quienes
generalmente personalizan las tareas para su
hijo. Y, si resulta apropiado, pregunte cómo
ayudar a los compañeros a comprender la
enfermedad de su hijo.

Recursos escolares: Por ley, los

tomar un descanso cuando se brindan cuidados
a otra persona. Los servicios de respiro familiar,
dentro o fuera de la casa, se prestan desde un par
de horas hasta la noche completa. Cuando usted
se tome un descanso, piense qué es lo que más
necesita hacer durante ese tiempo. Quizás pueda
hacer un recado, algunas compras o relajarse. ¿Con
qué frecuencia necesita ese tiempo? Estos y otros
factores, como la movilidad de su hijo, le indicarán
qué tipo de programa es el mejor en su caso.

Servicios de respiro familiar: Es importante