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Understanding and Managing Patients’ Support System

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Understanding and Managing Patients’ Support System

Caregivers play a critical role in supporting patients with IPF

Families and caregivers play a key role in helping manage patients’ medications and arrangingpost-transition care plans1

Families and caregivers should be involved in regular discussions of disease progression and support, which should begin early in the disease2

1. Coleman EA et al. J Healthcare Qual. 2015;37(1):12-21.
2. Moreo K et al. Prof Case Mgmt. 2017;22(2)54-63.

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 resentment3

3.  Belkin et al. BMJ Open Resp Res. 2013;1:e000007.

Caregivers can feel overwhelmed dealing with IPF

  • 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 IPF4
  • Some feel guilty about their own good health3
3. Belkin et al. BMJ Open Resp Res. 2013;1:e000007.
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.

Caregivers can feel overwhelmed dealing with IPF3 (cont.)

  • Both patients and caregivers are likely to experience anxiety and depression4-6
  • However, patients and caregivers may not cope the same way when dealing with a diagnosis of IPF4
3. Belkin et al. BMJ Open Resp Res. 2013;1:e000007.
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
5. van Manen M et al. ERJ Open Res. 2017; 3:00065-2016.
6. Ryerson CJ et al. Chest. 2011;139(3):609-616.

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 patient3

3.  Belkin et al. BMJ Open Resp Res. 2013;1:e000007.

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 strain4

4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.

The amount of strain/burden on caregivers depends on lots of complex factors

As caregivers, women tend to be more emotionally affected than men, which makes them feel like they have been emotionally abandoned by their loved ones3
–Men usually do not experience the same feelings when acting as caregivers

3.  Belkin et al. BMJ Open Resp Res. 2013;1:e000007.

Advanced IPF can alter the relationship dynamic

Patients need assistance with daily tasks, which can change the relationship dynamic dramatically7

HCPs managing the patient often do not address the stress (or other needs) the caregiver experiences with a diagnosis of IPF7

7. Bajwah et al. Palliat Med. 2013;27(9):869-876.

Caregivers try to maintain normalcy while preparing for this terminal disease outcome

  • Couples dealing with IPF try to protect each other by balancing honesty and silence4
  • Neither patient nor caregiver have the proper outlet to express his or her feelings while trying to protect the other and feel lonely4
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.

Care partners are “hidden patients”

  • 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
7. Bajwah et al. Palliat Med .2013; 27(9):869-876.
8. Roche V. Am J Med Sci. 2009;337(3):199-204.

Care partners are “hidden patients” (cont.)

  • 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”)4,5
Caregivers need to balance their role and need for space and grieving4

3. Belkin et al. BMJ Open Resp Res. 2013;1:e000007.
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
5. van Manen M et al. ERJ Open Res. 2017; 3:00065-2016.
8. Roche V. Am J Med Sci. 2009;337(3):199-204.

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 patient4,9
 
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
9. van Manen M et al. Ther Adv Respir Dis. 2017;11(3):157-169.

Patients and caregivers want to be informed gradually and together

HCPs should pace information over the course of follow-up visits as much as possible4,10
 
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
10. Longacre ML et al. J Cancer Educ. 2015;30(4):786-791.

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 caregivers5

5. van Manen M et al. ERJ Open Res. 2017;3(1):00065-2016.

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 outcomes11
 
Advance care planning can help approach end-of-life conversations to provide information to both the patient and caregiver4

4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
11. Swigris JJ et al. Chest [supplement]. 2015;s1-s8.

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 (eg, 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 closure4
3. Belkin et al. BMJ Open Resp Res. 2013;1:e000007.
4. Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
12. Danoff SK et al. Curr Opin Pulm Med. 2013;19(5):480-484.

Summary

  • An IPF diagnosis significantly affects the caregiver as well as the patient3
  • Caregivers need psychosocial support and help balancing the needs of the patient and their own emotional and physical well-being3,7
  • HCPs should ensure that caregivers are included as part of the team in discussions with patients2
  • Better educational resources and support networks can help reduce the burden of IPF on the caregiver11
2. Moreo K et al. Prof Case Mgmt. 2017;22(2)54-63. 
3. Belkin et al. BMJ Open Resp Res 2013;1:e000007.
7. Bajwah et al. Palliat Med. 2013; 27(9):869-876.
11. Swigris JJ et al. Chest [supplement]. 2015;s1-s8.

References

1.Coleman EA et al. J Healthcare Qual. 2015;37(1):12-21.
2.Moreo K et al. Prof Case Mgmt. 2017;22(2)54-63.
3.Belkin et al. BMJ Open Resp Res. 2013;1:e000007.
4.Overgaard D et al. Eur Respir J. 2016;47(5):1472-1480.
5.van Manen M et al. ERJ Open Res. 2017;3:00065-2016.
6.Ryerson CJ et al. Chest. 2011;139(3):609-616.
7.Bajwah et al. Palliat Med. 2013;27(9):869-876.
8.Roche V. Am J Med Sci. 2009;337(3):199-204.
9.van Manen M et al. Ther Adv Respir Dis. 2017;11(3):157-169.
10.Longacre ML et al. J Cancer Educ. 2015;30(4):786-791.
11.Swigris JJ et al. Chest [supplement]. 2015;s1-s8.
12.Danoff SK et al. Curr Opin Pulm Med2013;19(5):480-484.