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The Importance of Caregiver and Family Input in the Patient Experience

As levels of chronic disease rise, growing numbers of patients require help and assistance from caregivers and family members. The importance of caregiver and family input in the patient experience should therefore not be overlooked by hospitals.

According to the Centers for Disease Control:

“90% of the nation’s $3.5 trillion annual healthcare expenditures are for people with chronic and mental health conditions.” [1]

 “Six in ten Americans live with at least one chronic disease, like heart disease and strokecancer, or diabetes. These and other chronic diseases are the leading causes of death and disability in America, and they are also a leading driver of healthcare costs.” [2]

As health system leaders look towards the future, they are fully aware of the impact of several key issues:

  • The impact of chronic disease on the patient population.
  • The prevalence of mental illness and addictions.
  • The aging “Baby Boomer.”

Chronic diseases alone often result in increased inpatient admissions for infections (such as, sepsis, UTIs, pneumonia) and other disease exacerbations related to cancer, heart disease, stroke, lung disease and COPD, arthritis leading to major joint replacements, digestive disorders, diabetes, kidney disease, renal failure – the list goes on.

Typically, when the patient is admitted, they are usually accompanied by a family member who has been their caregiver.

“An estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community. The value of this unpaid labor force is estimated to be at least $306 billion annually, nearly double the combined costs of home healthcare ($43 billion) and nursing home care ($115 billion).” [3]

Contributions from these caregiver/family members are crucial to the healthcare team. Furthermore, patient and family centered care has been identified as a best practice in achieving quality outcomes. As hospitals review their processes and aim to increase patient engagement, they must include family members.

NB: According to the Institute for Patient and Family Centered Care, “family” refers to two or more persons who are related in any way, i.e., biologically, legally, or emotionally.

Patient and family centered care is vital to best practice in achieving quality outcomes. Hospitals must include family members to increase patient engagement. Click To Tweet

“There is an increasing body of evidence that patient and family centered care and partnerships with patients and families in care and in improvement and change efforts will improve safety, quality, and the experience of care.” [5]

“Working with patients and families as advisors at the organizational level is a critical part of patient and family engagement and patient – and family centered approaches to improving quality and safety. Patient and family advisors are valuable partners in efforts to reduce medical errors and improve the safety and quality of healthcare.” [5]

The Institute for Patient and Family Centered Care has created the “Better Together Program” which highlights recommended best practices to be utilized by hospital staff wishing to engage with patients and their families:

 “Family members and friends who have been identified by patients as their care partners, together with you and other staff, are integral members of the health care team. These family members and friends provide comfort and assistance for patients. As care partners, they can also help you by sharing information, by participating in aspects of care, and by helping make decisions. They can be spokespersons, advocates, and supporters, especially if patients are too sick or too overwhelmed to do this for themselves.” [6]

Multiple research studies and guidance from federal and private entities have also established the need for healthcare systems to include both patients and families in their communications.

Patient and family centered care is best practice in providing high quality healthcare.

“Although hospitals make unique, organization-specific Patient and Family Centered Care (PFCC) principles, all of them tend to endorse similar core values by recognizing the importance of family members’ roles in individual patients’ health care experience, establishing relationships with and supporting patients and families, and helping patients discover how their own strengths and weaknesses influence their health and health care.” [7]

“The loved ones of a patient may not have a medical license or healthcare background, but their voice and presence matters in the hospital room. Similar to a mechanical system of interlocked gears, the communication between the patient, family, and health care providers is very important throughout the entire recovery process.” [8]

In the “Partnership for Patients Program”, CMS notes the importance of patient and family engagement:

Robust efforts to engage patients and families in their care are woven throughout all aspects of the Partnership for Patients to achieve system-wide adoption of patient and family engagement best practices.” [9]

Enhancing the patient experience with iSUGEZT

Enhancing the patient experience through innovation is a goal identified by healthcare leaders for 2020.

The above-mentioned research supports the expansion of that goal to include patient and family centered programs. Communication between providers, patients, and families must be improved in order to foster a culture of trust. When patients and family members trust their doctors and their hospital, they become lifelong partners in care.

VIE Healthcare® Consulting has developed an innovative tool to promote communication between hospital leadership, patients and their families.

The iSUGEZT app is easily downloaded to your patients’ smartphones upon admission. As they move through your hospital processes, patients and their caregivers can:

  • Make suggestions for innovation or improvement.
  • Share an idea.
  • Praise a staff member for outstanding service.
  • Share a challenge or problem they encounter.

Feedback and comments are submitted to hospital leadership in real-time enabling them to respond while the patient is still in their care if required.

Patients and their families are given a voice, so they feel empowered, heard, and valued.

iSUGEZT provides an interactive way to understand the patient experience from the patient and family perspective, offering a springboard for ideas to improve processes and celebrate successes. It provides a catalyst to build trust and boost your hospital’s reputation.

Implementing iSUGEZT for your patients and their families delivers sought after innovation to enrich your patient and family centered programs and achieve best practice in the patient experience.

What would you SUGEZT?


[1] CDC website; accessed at: https://www.cdc.gov/chronicdisease/about/costs/index.htm

[2] CDC website; accessed at : https://www.cdc.gov/chronicdisease/index.htm

[3] Family Caregiving Alliance/ National Center on Caregiving; accessed at: https://www.caregiver.org/caregiver-health

[4] Institute for Patient and Family Centered Care; accessed at: https://www.ipfcc.org/resources/bibliographies.html

[5] AHRQ- Working with Patients and Families as Advisors; accessed at: https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy1/index.html

[6] Institute for Patient and Family Centered Care: Best Practices; accessed at: https://www.ipfcc.org/bestpractices/IPFCC_Better_Together_Staff_Pocket_Screen.pdf

[7] Aaron M. Clay and Bridget Parsh; Patient- and Family-Centered Care: It’s Not Just for Pediatrics Anymore; American Medical Association Journal of Ethics; January 2016, Volume 18, Number 1: 40-44.

[8] Brian Boyle, The Critical Role of family in Patient Experience; Patient Experience Journal; Volume 2, Issue 2 – Fall 2015, pp. 4-6

[9] CMS/Partnership for Patients/ Patient and Family Engagement, accessed at: https://partnershipforpatients.cms.gov/about-the-partnership/patient-and-family-engagement/the-patient-and-family-engagement.html