Caregivers

UNDERSTANDING AND MANAGING PATIENT’S SUPPORT SYSTEM.

Families and caregivers play a key role in helping manage IPF patients’ medications and arranging post-transition care plans,¹ and should be involved in regular discussions of disease progression and support, which should begin early in the disease.²

AN IPF DIAGNOSIS CAN CAUSE A RANGE OF EMOTIONS IN CAREGIVERS.

• One survey of patients with IPF and their caregivers found that caregivers were devastated and expressed disbelief at diagnosis³
• Other common emotions included anger and hopelessness at the situation, fear of inevitable progression, and sadness knowing they only had months or a few years left with the patient³

Sometimes emotions manifested as resentment.³

CAREGIVERS CAN FEEL OVERWHELMED DEALING WITH IPF³

• Caregivers can feel frustrated by their inability to help the patient feel better³
• Caregivers often feel alone and insecure with the responsibility of caring for their patient with IPF⁵
• Some feel guilty about their own good health³
• Both patients and caregivers are likely to experience anxiety and depression^3-6
• However, patients and caregivers may not cope the same way when dealing with a diagnosis of IPF⁵

CARING FOR A PATIENT WITH IPF CAN INTERFERE WITH THE CAREGIVER’S LIFE.

Caregiving often disrupts the normal life of the caregiver by causing the caregiver to refocus around the patient.³

IPF strains relationships between patients and caregivers:

Two separate studies found that spouses/caregivers took over household chores as patients with IPF became incapacitated, creating physical and mental demands on top of the emotional strain.⁵

ADVANCED IPF CAN ALTER THE RELATIONSHIP DYNAMIC.

Patients need assistance with daily tasks, which can change the relationship dynamic dramatically.⁷

HCPs managing the patient often do not address the stress (or other needs) the caregiver experiences with a diagnosis of IPF.⁷

CAREGIVERS TRY TO MAINTAIN NORMALCY WHILE PREPARING FOR THIS TERMINAL DISEASE OUTCOME.⁵

• Couples dealing with IPF try to protect each other by balancing honesty and silence⁵
• Neither patient nor caregiver have the proper outlet to express his or her feelings while trying to protect the other and feel lonely⁵

CARE PARTNERS ARE “HIDDEN PATIENTS”.⁸

• Caregivers have substantial unmet psychosocial needs⁷
• Caregivers provide invaluable support to patients, but they also will often need support to continue in their role as caregiver⁷
• Caregivers find it hard to balance providing support to the patient and taking care of their own emotional and physical well-being³
• Caregivers help patients relax and avoid stress, which causes stress for caregivers (to be the “strong one”)^5,6

Caregivers need to balance their role and need for space and grieving.⁵

HCPS SHOULD CONSIDER THE NEEDS OF CAREGIVERS WHEN PROVIDING INFORMATION.

Family caregivers should be involved from disease onset/diagnosis and need to be supported since they are the main support for the patient.^5,9

PATIENTS AND CAREGIVERS WANT TO BE INFORMED GRADUALLY AND TOGETHER.⁵

HCPs should pace information over the course of follow-up visits as much as possible.^5,10

Practical information on managing and living with IPF should be conveyed. In addition to discussing lung function parameters, HCPs should discuss information about patients’ health status, disease progression, self-management, and nutrition tips with patients and their caregivers.⁶

EDUCATIONAL SUPPORT CAN HELP CAREGIVERS AND PATIENTS COPE WITH IPF.

Patient and caregiver support resources, including increased educational support, may ease the emotional burden and improve patient outcomes.¹¹

Advance care planning can help approach end-of-life conversations to provide information to both the patient and caregiver.⁵

HCPS CAN HELP CAREGIVERS COPE WITH IPF.

• Suggest they participate in patient support groups¹²
  • Support groups can decrease anxiety and depression and can provide education to patients and caregivers and improve well-being
• Create caregiver support groups as a standard part of care³
• Ensure that caregivers take the time they need to care for themselves³
• Develop a caregiver-specific curriculum (e.g., symptoms to expect, how to handle progression of symptoms/disease, coping with it all)³
• Help them maintain a support network³
• Caregivers should have a follow-up consultation after bereavement to help obtain closure⁵

REFERENCES