BOSTON – Findings from a recent online survey conducted by Rx4good in collaboration with 70 leading organizations show that caregivers play a central and multi-dimensional role in researching, managing and participating in the medical care decisions of their loved ones. According to the results, presented today as part of a panel discussion: Beyond Adult Patients, Untapped Advisors in Clinical Development at the DIA meeting, 91% of caregivers report being “very involved” in medical choices and/or treatment decisions, participating in an average of 17 doctor visits per year and accompanying their care recipient to see an average of six different healthcare providers in the past two years.

“Much is already understood about the challenges and burdens of caregivers,” said Ann Moravick, President of Rx4good, “but until now, little was known about the extent of their role as medical decision-makers, including the precipitating factors in taking on the role of caregiver, their information-seeking priorities and habits or their engagement with healthcare practitioners. This research shows that caregivers are medical understudies, thrust into their role unprepared while learning continuously so they can be a true partner with their care recipient and health professionals.”

“Sometimes we see the word ‘informal’ to describe the family caregiver, but as this research shows, there’s nothing informal about the type of care unpaid family members and friends can provide,” said C. Grace Whiting, J.D., President and CEO of the National Alliance for Caregiving. “Family caregivers are truly partners in care and should be integrated into models of care delivery. Shared decision-making should include not just the patient, but the family decision-makers as well.”

Among the research’s key findings:

  • Forty-three percent of caregivers stepped into their role as a result of a medical emergency, 24% as a result of a new diagnosis and 20% as their care recipient’s condition progressed.  As a result, most are unprepared for the role and lack confidence in the beginning on how to care for a loved one with a medical condition.
  • The caregiver/healthcare provider relationship is strong and based on trust. Eighty-eight percent of caregivers said doctors listen carefully to what they have to say, 87% say doctors respect their assessment of their care recipient and 85% say doctors treat them as a partner in care decisions. Caregivers who are more confident in their role have an even better relationship with their care recipient’s physician – speaking to the need for helping caregivers with information and support as they take on the role.
  • Top priorities of caregivers include: maintaining or improving quality of life of their loved one (68%), keeping their loved one safe from injury from falls, accidents or other mishaps (49%) and extending the life and health of their care recipient (41%). In contrast, caregiver stresses and quality of life take on a much less important role in their decision-making, illustrating how many caregivers consider their own needs secondary to those of their care recipient.
  • Confidence and involvement of caregivers grows over time. Twenty-eight percent felt they had the information they needed to make medical decisions or treatment choice at the onset, 89% reported actively seeking information when first taking on their caregiver role, 40% considered themselves expert on the medical condition, medications and treatment options at first and 59% reported an increasing role in medical decisions over the past year.
  • Caregivers are information-seeking. Seventy-nine percent said they frequently searched for information about the medical condition, medications and treatment options of their care recipient. And, regardless of their confidence, caregivers keep seeking information throughout their journey with the patient. Sources most relied on for information include: loved one’s doctor(s) or other health professionals (76%), health information websites, such as WebMD (51%), medical journal or medical literature (39%) and friends of family members (37%).  
  • Topics researched as helpful for making future care decisions include new treatment options and medications (69%), support programs for caregivers like themselves (63%), and alternative treatment options (56%).  
  • Clinical trials and new treatments are of interest, but little understood. Half (50%) seek information about clinical trials and new treatment options, yet only 20% consider themselves expert in these areas – pointing to the need for more information and education of caregivers about clinical trials.

"These findings show the need to support caregivers in their significant role as medical decision-makers,” says Moravick. “By acknowledging their influence as critical allies with healthcare professionals, providing them with education and resources throughout their journey, particularly at the onset when the need is greatest, and equipping them with tools to build confidence and reduce stress, we will help ease their burden and benefit those they love and care for.”

Rx4good is a global patient advocacy and engagement consultancy dedicated to empowering organizations to put the patient first. Its clients and partners span the industry, nonprofit, government and academic sectors. Parkinson’s Resource Organization is one of 70 organizations that partnered in the development of the survey questionnaire and in the dissemination of the survey through social media engagement and outreach to their networks. The survey was based on an online survey of 633 caregivers conducted between April 16 and May 31, 2018. The survey instrument was IRB-approved and developed with input from more than 70 organizations representing a broad range of diseases, caregiver-specific groups, and companies. Topline research results are available at A complete research report of the findings will be available in July.

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Updated: August 16, 2017