Patients Need Help Receiving Chronic Illness Social Support

May 17, 2017

New research indicates that clinicians need to help their patients obtain adequate social support when dealing with chronic illness, such as Parkinson's Disease.

Healthcare professionals must educate patients about the importance of social support when facing a chronic illness, according to a report from The Parkinson’s Alliance.

The report featured findings from a survey of over 1,400 individuals with Parkinson’s Disease (PD). Results showed that although 82 percent of patients are generally happy with their social support system, there are some areas in which they are concerned.

Forty percent of patients said needing a social support – defined as support from friends, family members, and other loved ones – put a strain on their relationships. The stress of needing emotional, physical, and practical support (i.e. getting rides to appointments) became a hindrance to these patients’ relationships, the report said.

Increasing or worsening symptoms adversely affected access to social supports for 77 percent of patients. Most pressing symptoms included fatigue, motor symptoms, speech disturbance, and cognitive and emotional disturbance.

Patients reported needing more emotional support than any other kind of social support (including physical support, intellectual support, spiritual support, financial support, and practical support). Thus, clinicians must emphasize the importance of a strong support system both at the time of diagnosis and throughout the period of chronic illness treatment, the report stated.

“Given the vulnerability to perceived reduced social support and heightened psychological distress, increased attention towards patients and their support system as the disease progresses is indicated,” the report explained.

“That said, early education about the importance and establishment of social support systems may prove advantageous to the preparation for challenges that are faced in the advanced stages of PD,” it continued.

Additionally, clinicians should consider referring a patient to a Parkinson’s Disease social worker.

“Most patients who have been referred to a Parkinson’s expert social worker have never worked with this service before and are not aware of the full range of options that can be provided,” the report noted. “A referral to a Parkinson’s expert social work team can be a doorway to tailored support programs and services for patients, families and care partners.”

Social support is a critical aspect of Parkinson’s Disease and overall chronic disease management, the report authors contend.

“Although social support is often an aid to physical and psychological comfort, over time, social support becomes a necessity to manage well-being, such as engaging in and completing activities of daily living,” the report pointed out.

And while it is important for patients to identify their non-clinical support team, clinicians can play a significant role in making supportive resources available. Clinicians should regularly check in with patients to ensure they are receiving the support they need, and can also point patients toward supportive resources and social workers.

"Increased attention towards patients and their support system over the course of PD is needed,” said Parkinson Alliance Chief Research Consultant Jeffrey Wertheimer, PhD, ABPP-CN.

“Early education about the importance and establishment of social support systems, may prove advantageous in the preparation for challenges that are faced in the advanced stages of PD. Perceived adequate social support may be a buffer, in part, for psychological distress," added Wertheimer, who is also a clinical neuropsychologist.

Other Parkinson’s advocacy groups are working to create better support systems for patients. The American Parkinson’s Disease Association (APDA) recently announced the formation of an online Parkinson’s Disease support group, helping to connect patients and caregivers to others with similar experiences.

The network will also host the APDA’s resources, offering more educational resources to patients and families who otherwise may not have access to them.

The community will be free to join and is hosted online by Smart Patients. Patients and caregivers can also offer online advice for free.

“We are thrilled with our partnership with Smart Patients to launch this community,” explained APDA Vice President of Programs and Patient Services Robin Kornhaber.

“This network is designed for people with PD, care partners, and family members. This innovative opportunity will further a dialogue to nurture the PD community, provide socialization, education, and critical access to information – and will allow us to expand our reach across the country,” Kornhaber concluded.

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