Download Caregivers of Huntington`s Patients Voice Frustrations with Doctors

Caregivers of Huntington's Patients Voice Frustrations with
Doctors and Health System
http://huntingtonsdiseasenews.com/2016/06/17/interactions-with-healthcare-st
aff-source-of-disappointment-in-huntingtons-disease-caregivers/
by Magdalena Kegel June 17, 2016
Huntingtons Disease News
Caregivers of people with Huntington's disease describe themselves as
invisible patients in a healthcare system they are profoundly disappointed
with, according to a study in the journal
<http://www.psychiatriapolska.pl/> Psychiatra Polska. While the study was
done in Poland, similar findings in both the U.S. and U.K. indicate that
changes in medical education and healthcare systems are needed to better
help both Huntington's patients and their caregivers.
The caregiving burden and quality of life of people caring for family
members with Huntington's disease is a relatively well-studied domain. But
few researchers have focused on how caregivers interact with healthcare
services, an issue that researchers at <http://pums.ump.edu.pl/> Poznan
University of Medical Sciences recently explored. People included in the
study, <http://www.ncbi.nlm.nih.gov/pubmed/27288682> "Family caregivers'
experiences with healthcare services - a case of Huntington disease," were
in 80 percent of the cases the primary caregiver of the patient. Most were
between the ages of 50 and 70, and some cared for more than one family
member, as several, including children, had developed the disease. The
majority of the patients, 72.7 percent, were in an advanced disease stage.
During interviews with the 55 caregivers, a number of themes emerged.
Caregivers described a widespread lack of knowledge about Huntington's
disease among physicians and other healthcare staff, including neurologists,
and having to turn to alternative sources for information about causes,
symptoms, prognosis, or treatment options.
Carergivers noted that the lack of knowledge among treating physicians often
reduced the therapy to psychiatric drugs, and they found poor access to
specialists and genetic counseling particularly disheartening. Genetic
testing most often did not include options for counseling or psychological
support, either for the patients or the caregiver.
In addition to the poor knowledge among healthcare professionals, caregivers
also complained about the lack of emotional support, and of being completely
ignored by physicians when accompanying family members.
Healthcare system shortcomings often placed an extra burden on caregivers,
who stated that the poor quality of care led to extra costs for
rehabilitation, diets, and therapies. Understanding and support from
governmental and social institutions were also rated very low.
Caring for a person with Huntington's disease can differ from other chronic
diseases in many aspects. Huntington's frequently strikes at relatively
young ages, and the hereditary nature of the disease makes it likely for a
caregiver to have several family members to care for, while living with the
worry of also being affected.
The authors cited several other studies from the U.S. and U.K., or other
countries considered to have a better quality healthcare, where the
situation for caregivers was similar. The study clearly shows the need to
better educate physicians and other healthcare professionals about
Huntington's disease and its impact on both patients and their caregivers.
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Psychiatr. Pol. 2016; 50(2): 375-391
http://www.psychiatriapolska.pl/375_391
DOI: <http://dx.doi.org/10.12740/PP/59103>
http://dx.doi.org/10.12740/PP/59103
Author: Jan Domaradzki
Summary
Introduction. Despite a growing interest in the health and psychosocial
consequences of caring for a person with Huntington's disease (pHD), little
is still known about family caregivers of such patients in Poland. At the
same time, while researchers focus on the needs, quality of life and
caregiving burden, they frequently omit caregivers' experiences with
healthcare services.
Aim. This paper aims to report a study on the perception of healthcare
services of family caregivers of pHD.
Material and method. The research was carried out between August and
December 2014 among 55 family caregivers of pHD. The respondents were
recruited via the Polish Huntington Disease Association and a discussion
forum for pHD and their carers. The material was collected via
semi-structured interviews and analysed using a content and thematic
analysis of the transcripts.
Results. Four themes emerged during the interviews: 1) Lack of information
on HD from physicians; 2) Negative experience with health professionals 3)
Lack of emotional support, and 4) General dissatisfaction with healthcare
services. Caregivers were frustrated by the lack of knowledge about HD from
physicians and believed that they do not show enough empathy and support to
caregivers. They also felt let down by the system and expressed general lack
of trust in the standard of healthcare.
Conclusions. This study revealed HD caregivers' complex needs for healthcare
assistance and emotional support. For that reason health and social
professionals should monitor caregivers' mental health, identify the sources
of their distress and support effective strategies to cope with the stress.
FREE POLISH FULLTEXT:
Psychiatria Polska is an open access journal
Doœwiadczenia opiekunów rodzinnych z systemem opieki medycznej
<http://psychiatriapolska.pl/uploads/images/PP_2_2016/375Domaradzki_Psychiat
rPol2016v50i2.pdf> - przypadek choroby Huntingtona
PDF document in Polish