Patient Education

Patient and Family Caregiver Educational Handouts

Even as scientific advancements are leading to new CF therapies, many aspects of well-being for people with CF and their families require attention. You can now access a new series of educational handouts created especially for people living with CF and their loved ones through Improving Life with CF: A Primary Palliative Care Partnership.

These handouts address symptoms commonly experienced by those with CF, such as pain, changing energy levels, poor appetite, stress, and breathing problems like cough and shortness of breath. Each handout provides information on the common causes of specific symptoms, how to communicate with healthcare providers, techniques for self-management and medical management, and patient and family resources. Other handouts provide education on general topics, such as discussing health care choices with your CF care team.

Palliative Care in CF

This handout explains what palliative care is, who typically provides this type of care, and how palliative care may help to reduce symptoms and stress for those with CF.

What is Palliative Care in CF?
¿Qué Son Los Cuidados Paliativos en la Fibrosis Quística (FQ)? (Español)

Common Physical Symptoms

Each of the handouts below discusses common physical symptoms among individuals with CF.

Gastrointestinal Symptoms

Many people with CF experience gastrointestinal (GI) problems that can affect their quality of life. This handout reviews possible causes and management options for abdominal pain, diarrhea, and constipation.

Abdominal Pain, Diarrhea, and Constipation
Dolor Abdominal, Diarrea, y Estreñimiento (Español)

This handout provides information on poor appetite, nausea, vomiting, and weight loss, as well as actions that can be taken to help improve these conditions.

Poor Appetite, Nausea, Vomiting, and Weight Loss
Poco Apetito, Náuseas, Vómitos, y Pérdida de Peso (Español)

Dyspnea (Shortness of Breath)

Dyspnea, or difficulty breathing, may be associated with chest tightness, cough, or wheezing. This handout reviews possible causes of dyspnea and cough, and provides self-management techniques that people with CF can use to recover from a breathlessness episode.

Dyspnea and Cough
Disnea y Tos (Español)

Fatigue

Persistent fatigue that does not improve with rest is a frequent problem for many people with CF. This handout describes different types of fatigue that are common with CF and a variety of self-management strategies to manage it, including physical activity, activity pacing, improving sleep, and relaxation.

Fatigue
Fatiga (Español)

Pain

This handout reviews how CF can lead to acute or chronic pain, potential problems caused by pain, effective treatment approaches, and strategies for self-assessment and management, including a self-assessment guide and relaxation techniques.

Pain
Dolor (Español)

Emotional Stress

The handouts below focus on unique sources of stress that may be experienced among individuals with CF and their caregivers.

Pediatric Patients and their Caregivers

Everyone experiences stress at some points in time. However, young people living with CF and their families can experience unique sources of stress. This handout can assist parents and caregivers with understanding and managing common stressors for their children as well as themselves.

Stress in Families of Children & Adolescents
Estrés en las Familias de Niños y Adolescentes con Fibrosis Quística (FQ) (Español)

Adult Patients and their Caregivers

Adults living with CF, as well as their spouses, partners, or caregivers, can face challenging circumstances and demands. This handout reviews some common sources of stress related to CF, signs of stress, and techniques to self-manage stress.

Stress Among Adults with CF and Loved Ones
Estrés en los Adultos con Fibrosis Quística (FQ) y Sus Seres Queridos (Español)

Health Care Decision-Making

The handouts below focus on making decisions regarding health care.

While no one likes to think about being so sick that making your own decisions becomes challenging or impossible, people with a serious illness may find themselves in this situation, and it is good to be prepared. This handout provides important information on making your advance directives, including recording treatment preferences and choosing a health care agent.

Advance Directives
Directivas Anticipadas (Español)

This handout provides insight into how you can partner with your CF team and support system to make decisions about your health care.

Discussing Health Care Choices
Analizar las Opciones de Atención Médica (Español)

This handout explains what palliative care is, who typically provides this type of care, and how palliative care may help to reduce symptoms and stress for those with CF.

What is Palliative Care in CF?
¿Qué Son Los Cuidados Paliativos en la Fibrosis Quística (FQ)? (Español)

Each of the handouts below discusses common physical symptoms among individuals with CF.

Gastrointestinal Symptoms

Many people with CF experience gastrointestinal (GI) problems that can affect their quality of life. This handout reviews possible causes and management options for abdominal pain, diarrhea, and constipation.

Abdominal Pain, Diarrhea, and Constipation
Dolor Abdominal, Diarrea, y Estreñimiento (Español)

This handout provides information on poor appetite, nausea, vomiting, and weight loss, as well as actions that can be taken to help improve these conditions.

Poor Appetite, Nausea, Vomiting, and Weight Loss
Poco Apetito, Náuseas, Vómitos, y Pérdida de Peso (Español)

Dyspnea (Shortness of Breath)

Dyspnea, or difficulty breathing, may be associated with chest tightness, cough, or wheezing. This handout reviews possible causes of dyspnea and cough, and provides self-management techniques that people with CF can use to recover from a breathlessness episode.

Dyspnea and Cough
Disnea y Tos (Español)

Fatigue

Persistent fatigue that does not improve with rest is a frequent problem for many people with CF. This handout describes different types of fatigue that are common with CF and a variety of self-management strategies to manage it, including physical activity, activity pacing, improving sleep, and relaxation.

Fatigue
Fatiga (Español)

Pain

This handout reviews how CF can lead to acute or chronic pain, potential problems caused by pain, effective treatment approaches, and strategies for self-assessment and management, including a self-assessment guide and relaxation techniques.

Pain
Dolor (Español)

The handouts below focus on unique sources of stress that may be experienced among individuals with CF and their caregivers.

Pediatric Patients and their Caregivers

Everyone experiences stress at some points in time. However, young people living with CF and their families can experience unique sources of stress. This handout can assist parents and caregivers with understanding and managing common stressors for their children as well as themselves.

Stress in Families of Children & Adolescents
Estrés en las Familias de Niños y Adolescentes con Fibrosis Quística (FQ) (Español)

Adult Patients and their Caregivers

Adults living with CF, as well as their spouses, partners, or caregivers, can face challenging circumstances and demands. This handout reviews some common sources of stress related to CF, signs of stress, and techniques to self-manage stress.

Stress Among Adults with CF and Loved Ones
Estrés en los Adultos con Fibrosis Quística (FQ) y Sus Seres Queridos (Español)

The handouts below focus on making decisions regarding health care.

While no one likes to think about being so sick that making your own decisions becomes challenging or impossible, people with a serious illness may find themselves in this situation, and it is good to be prepared. This handout provides important information on making your advance directives, including recording treatment preferences and choosing a health care agent.

Advance Directives
Directivas Anticipadas (Español)

This handout provides insight into how you can partner with your CF team and support system to make decisions about your health care.

Discussing Health Care Choices
Analizar las Opciones de Atención Médica (Español)