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.
http://patientengagementhit.com/news/patients-need-help-receiving-chronic-illness-social-support
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