This study explores the lived experiences of primary caregivers of individuals diagnosed with X-linked Dystonia Parkinsonism (XDP) in Panay, Philippines. Semi-structured interviews were conducted with 6 primary caregivers. The interviews were analyzed using Colaizzi's method and 6 themes were identified: emotional burden, financial constraints, barriers in communication, desire to alleviate patient's sufferings, enabling self reliance, and exhausting all possible means. The study found that caregivers experience significant hardships and recommends increased support services including counseling, support groups, health education, and information about XDP.

1. WEST VISAYAS STATE UNIVERSITYWEST VISAYAS STATE UNIVERSITY
COLLEGE OF NURSINGCOLLEGE OF NURSING
La Paz, Iloilo CityLa Paz, Iloilo City
MARY ANTOINETTE F. ALINSANGAO
PJEECO P. BAGASBAS,
ISABELLA DIANE L. MORGA,
RACHELLE ANN LORISSE J. RESPICIO,
WALTHER J. TALABAN
RYAN MICHAEL F. ODUCADO, MAN, MAEd, RN, RM, LPT
Villa Caceres Hotel, Magsaysay Avenue,
Naga City, Camarines Sur, Philippines
November 29, 2017

2. Progressive and involuntary in nature, X-linked
Dystonia Parkinsonism (XDP) causes a great impact
on the quality of life of the individuals affected.
(Dystonia Society, 2014)

3. To explore the lived experience of primary caregivers
taking care of individuals diagnosed with
X-linked Dystonia Parkinsonism (XDP)
in Panay.

4. Qualitative
Descriptive
Phenomenology
Purposive Sampling
Informed Consent
RESEARCH DESIGN
SAMPLING
TECHNIQUE
ETHICAL
CONSIDERATION
Neurologist
as Gatekeeper

5. (1) They were willing and able to
articulate, share, participate, and
describe their lived experience;
(2) participants were 18 years of
age or above and are currently
taking care of an XDP patient;
(3) a primary caregiver to dystonic
patients for at
least 1 year;
(4) the dystonic individual taken
cared of were clinically diagnosed
primarily by X-linked dystonia
Parkinsonism;
(5) participants were residents on
the island of Panay; and
(6) were able to understand the
risks and benefits of taking part in
the study; and
(7) were able to understand the
risks and benefits of taking part in
the study;

6. Colaizzi’s 7 steps described by Sosha (2012)

7. Investigator
triangulation
Member checking
Transcriptions and
Verbatim Quotes
Reflexive Journal
Bracketing
External Auditors
Confirmability Dependability
Thick Structural
Descriptions
Transferability
RIGOR

8. RESULTS
Six themes were identified:

9. Emotional
Burden
Financial
Constraints
Barriers in
Communication
Desire to Alleviate
Patient’s Sufferings
Enabling Self
Reliance
Exhausting All
Possible Means
Patient Before Self
Acceptance
Issues
Learned
Helplessness
Suppression and
Diverting Focus
Family Support
Looking for
Alternative
Treatment
Keeping One’s
Faith
RESULTS

10. Lived Experience of Primary Caregivers in
Taking of Individuals with XDP
Demonstration of themes
CONCLUSION AND RECOMMENDATIONS

11. Lived Experience Of Primary
Caregivers in Caring for
Individuals Diagnosed With
X-Linked Dystonia
Parkinsonism In Panay
CONCLUSION AND RECOMMENDATIONS

12. Social and
Psychological
Counseling and Support
Groups
Inform Foundation
aids
Health Teachings
Non-verbal
Communication
Information and educational
campaign for
X-linked Dystonia
Parkinsonism
Genetic Counseling Holistic Nursing Care Framework for Future
Studies
CONCLUSION AND RECOMMENDATIONS
Thank
Caring is central to
nursing. Understanding
primary caregiver’s
perspective is crucial in
designing interventions that
highlight
caring for the
carers themselves.