1.The Needs and Problems in Epilepsy Caregiving: A Qualitative Exploration
Pei Lin Lua ; Nor Khaira Wahida Khairuzzaman ; Zariah Abdul Aziz ; Jimmy Lee Kok Foo
ASEAN Journal of Psychiatry 2015;16(1):116-126
Objective: Living with epilepsy imposes great challenges on both patients and
their family caregivers but most researchers only explored the impact on
patients, with less attention given to family caregivers. Our study intended to
explore the needs and problems of epilepsy family caregivers of epilepsy patients
encountered during the caregiving process. Methods: Respondents were
recruited from the Neurology Clinic of Hospital Sultanah Nur Zahirah (HSNZ),
Kuala Terengganu. A semi-structured interview was conducted using openended
and broad questions asking about their general experience in caregiving,
daily routine activities, caregiving effects, caregiving difficulties and caregivers’
needs. The interviewed data were later transcribed into verbatim before further
analysis using the QSR International’s NVivo10 software. Results: Fifteen Malay
Muslim family caregivers between the age of 19 and 66 years participated. Most
were females (53%), married (67%), with education level at secondary school or
equivalent (73%) and were homemakers (40%). In particular, respondents
expressed the need for extra support from their family members and experts in
terms of physical (care relief), mental, and financial aspects. In addition, the
major caregiving problems identified included: (i) emotional disturbances (sad,
angry, depressed, and anxious); (ii) care giving challenges (family adjustments,
physical burden, psychological burden, and time management); and (iii)
financial issues (not working and limited family income). Some advantages in
caregiving were also reported. Conclusion: In conclusion, their experiences while
taking care of their loved ones in terms of feelings, beliefs and needs exposed the
difficulties in caregiving, causing substantial emotional pressure which could
later lead to poor quality of caregiving.