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Fulltext Psychosocial dimension of children with chronic disease: a case study in Malaysia

Lee, Chee Chan, Fahisham Taib

Education in Medicine Journal, 2016;8(1):79-83.
MyJurnal

Psychosocial issues have been seen as minor in medicine despite the importance for holistic medical
care involving emotional, spiritual and psychological domains. Most patients with chronic conditions
have complex and complicated psychosocial needs especially when dealing children with life limiting
conditions. These needs have a dynamic extension to patients’ care as their impact can also affect the
extended family members. Across the trajectory of the illnesses, the pattern of psychosocial needs
changes and, this demands attending physicians to perform accurate psychosocial assessment and
understanding issues from patients and caregivers perspective. Non-judgmental decision making
is essential to avoid friction and misunderstanding between the healthcare providers and caregivers
especially during the consultative process. Resolving psychosocial issue may involve various techniques
from moral support, bridging the services to helping the family, counseling on relationship issues and
many other areas. There is a need to equip healthcare workers with different skills in order to deliver a
better psychosocial care and input even after the bereavement period.
Fulltext Palliative care approach for preemie – an ethical case learning

Fahisham Taib, Lee, Chee Chan

Education in Medicine Journal, 2018;10(2):55-59.
MyJurnal

Palliative care for life limiting conditions usually starts at birth. In neonatal period, planning,
discussion and goal of care should focus towards improving the baby quality of life. It does not mean
palliative care in this age group mainly as end of life care. We illustrate a complex 30 weeks baby
who was born with genetic abnormality complicated with intracranial bleeding and acute myeloid
leukaemia. There were various ethical issues related to the approach of death and dying infant and
psychosocial challenges surrounding the case.
Fulltext Medical students’ preparedness as junior doctors on palliative care issues: a single centre study

Muhamad Riduan Daud, Fahisham Taib, Lee, Chee Chan

Education in Medicine Journal, 2016;8(2):3-14.
MyJurnal

Introduction: Palliative care teaching has little emphasis during the undergraduate period. Most
teachings in medical school are geared towards preventive and curative approach. Competency in
palliative care including therapeutic and effective communication has been the taught indirectly
without emphasis on other areas. We investigate medical students’ preparedness on palliative care
subjects using past studies questionnaire to evaluate knowledge, attitudes and understanding on end
of life issues. Method: Cross sectional study was performed on the final year medical students (class
2015) from a public university in the northern state of Peninsular Malaysia. Proforma was adopted
from the previously published studies covering the aspect of knowledge, attitude, end-of-life, advanced
directive and bioethical principles in palliative care. Conceptual framework of final year medical
students’ preparedness was ascertained following impartment of palliative care knowledge, either
directly or indirectly, after the exposure and completion of the clinical attachment. Results: The
study elicited a 78.5% response rate where 133 students replied out of 177 total students. Overall the
knowledge and attitude of palliative care were good. There were some misconceptions especially the
use of morphine and role of physician in the management of dying patients. Conclusion: There were
gaps identified following the completion of the study. Misunderstanding in different aspect of care
should be remedied with more exposure and practicality suitable to undergraduate medical curriculum
learning
Advance Care Planning in Malaysia

Lim ZN, Ng WJ, Lee CC

Z Evid Fortbild Qual Gesundhwes, 2023 Aug;180:103-106.
PMID: 37357108 DOI: 10.1016/j.zefq.2023.05.019

BACKGROUND: In Malaysia, advance care planning is still in its infancy. There is no national implementation of Advance Care Planning.
AIMS: To describe the national state of advance care planning development in Malaysia METHODS: Review of relevant advance care planning literature locally and internationally was undertaken.
RESULTS: Positive development in Malaysia includes implementation of advance care planning at institutional level, initiatives to develop educational programmes as well as research activities to understand the attitude and perception of patients on advance care planning. However, there remain challenges, including lack of knowledge and awareness, lack of legislative framework to guide advance care planning implementation and lack of strong initiatives at a national level.
CONCLUSIONS: It is evident that there is much to learn nationally and internationally about ACP before any decision on implementation of ACP is made in Malaysia. ACP is a public health issue and requires concerted effort of all stakeholders, including Government agencies, academic institutions, and non-government organizations to raise public awareness. More research is needed to shape the future direction of ACP development in Malaysia.
Fulltext Development and user evaluation of an online caregiver education resource for Malaysian parents of children with leukemia or lymphoma

Tan CE, Admodisastro N, Lau SCD, Tan KA, Teh KH, Lee CC, et al.

Asia Pac J Oncol Nurs, 2024 Feb;11(2):100363.
PMID: 38304227 DOI: 10.1016/j.apjon.2023.100363

OBJECTIVE: Malaysian parents of children diagnosed with leukemia or lymphoma stand to benefit from a comprehensive Malay-language online resource, complementing existing caregiver education practices. This study aimed to develop and assess the efficacy of e-Hematological Oncology Parents Education (e-HOPE), an online caregiver education resource in Malay, designed to enhance the knowledge of parents with children diagnosed with leukemia or lymphoma in Malaysia.
METHODS: A user profile and topic list were established based on previous needs analysis studies. Content was developed for each identified topic. An expert panel assessed the content validity of both informational content and activity sections. Subsequently, the contents were presented via a learning management system to parents of children newly diagnosed with leukemia or lymphoma. Parents evaluated the quality of e-HOPE using the Website Evaluation Questionnaire (WEQ) after an 8-week period.
RESULTS: The scale content validity index (S-CVI/Ave) achieved 0.996 for informational content and 0.991 for the activity section. Sixteen parents provided evaluations of e-HOPE after an 8-week usage period. Mean WEQ scores for various dimensions ranged from 4.23 for completeness to 4.88 for relevance.
CONCLUSIONS: E-HOPE was meticulously designed and developed to offer Malaysian parents a Malay-language resource complementing current caregiver education practices. It exhibited strong content validity and received positive user ratings for quality. Further assessment is warranted to evaluate its effectiveness in supporting parents of children with leukemia or lymphoma. The resource is anticipated to enhance information accessibility and support for Malaysian parents facing hematological cancers in their children.
TRIAL REGISTRATION: Clinicaltrials.govNCT05455268.
Parents of children with cancer require health literacy support to meet their information needs

Tan CE, Lau SCD, Abdul Latiff Z, Lee CC, Teh KH, Mohd Sidik S

Health Info Libr J, 2024 Sep;41(3):267-282.
PMID: 37332240 DOI: 10.1111/hir.12491

BACKGROUND: Timely and relevant information helps parents to cope when a child is diagnosed with cancer. However, obtaining and understanding information is not a straightforward process for parents.
OBJECTIVES: This article aims to explain paediatric cancer parents' information behaviour related to the care of their child.
METHODS: Qualitative in-depth interviews were conducted with fourteen Malaysian paediatric cancer parents and eight healthcare professionals who worked with paediatric cancer patients. Reflexivity and inductive approaches were used to interpret the data to identify meaningful themes and subthemes.
RESULTS: Three themes about how paediatric cancer parents interact with information emerged: Acquiring information, internalising information, and using information. Information may be actively sought or passively acquired. Cognitive and affective aspects influence how information is internalised into meaningful knowledge. Knowledge then leads to further action including further information gathering.
CONCLUSION: Paediatric cancer parents need health literacy support to meet their information needs. They require guidance in identifying and appraising suitable information resources. Development of suitable supporting materials is needed to facilitate parents' ability to comprehend information related to their child's cancer. Understanding parents' information behaviour could assist healthcare professionals in providing information support in the context of paediatric cancer.
Fulltext Development and Validation of a Caregiving Knowledge Questionnaire for Parents of Pediatric Leukemia and Lymphoma Patients in Malaysia

Tan CE, Lau SCD, Tan KA, Latiff ZA, Teh KH, Lee CC, et al.

Cureus, 2022 Oct;14(10):e30903.
PMID: 36465778 DOI: 10.7759/cureus.30903

Introduction Validated tools to measure caregiving knowledge among parents of children with hematological cancers are needed to measure the clinical outcome of caregiver interventions. This study reports the development and validation of the Hematological Oncology Parents Education Caregiving Knowledge Questionnaire (HOPE-CKQ) among Malaysian parents of pediatric leukemia and lymphoma patients. Methods Initially, 60 items on caregiving knowledge were developed based on a qualitative needs assessment study. Content validity was evaluated using item content validity index (I-CVI) and scale content validity index (S-CVI/Ave). Parents of pediatric leukemia and lymphoma patients were invited to complete the 60-item version of the HOPE-CKQ. Exploratory factor analysis (EFA) using polychoric correlation resulted in an 18-item version of HOPE-CKQ. Confirmatory factor analysis (CFA) was used to verify the factor structure. Known-group validity was tested by comparing the scores among different levels of parent education. Results The I-CVI ranged from 0.83 to 1.00 whereas the S-CVI/Ave was 0.99, indicating good content validity. A total of 167 complete responses were analyzed for factor analysis. EFA using polychoric correlations resulted in a single-factor structure consisting of 18 items. CFA confirmed that the 18-item single-factor HOPE-CKQ model had a good fit for the data. The internal consistency reliability was good (α=0.80). Parents with tertiary education level had higher caregiving knowledge (M=12.61, SD=3.37) compared to parents with secondary education and below (M=10.33, SD=3.80) (t=3.58, p<0.001). Conclusions The 18-item HOPE-CKQ is valid and reliable for use to measure caregiving knowledge among pediatric leukemia and lymphoma parents. This tool may be considered to measure caregiving knowledge in future preventive and intervention programs.