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Fulltext Development and Usability Assessment of a Mobile App (Demensia KITA) to Support Dementia Caregivers in Malaysia: A Study Protocol

Rashid NSA, Chen XW, Mohamad Marzuki MF, Takshe AA, Okasha A, Maarof F, et al.

Int J Environ Res Public Health, 2022 Sep 20;19(19).
PMID: 36231181 DOI: 10.3390/ijerph191911880

The impact of dementia on caregivers is complex and multi-dimensional. In low- and middle-income settings, caregivers are often left without adequate support, despite their multiple needs. These include health information, caregiving skills, social and emotional support, and access to local resources-all of which can be partially fulfilled by technology. In recent years, mobile apps have emerged and proven useful for caregivers. We found a few existing apps suitable for Malaysian users in terms of affordability and cultural and linguistic compatibility. Our study aims to design a mobile app that suits dementia caregivers in Malaysia and consists of three phases. Phase I is content development that employs Focus Group Discussion (FGD) and Nominal Group Technique (NGT) involving field experts. Phase II comprises a mobile app (Demensia KITA) designed in collaboration with a software developer specializing in mobile health apps. Phase III entails testing the usability of the app using the Malay version of the mHealth App Usability Questionnaire (M-MAUQ). This study protocol elaborates on the rigorous steps of designing a mobile app and testing its usability, along with anticipated challenges. Our protocol will provide insight for future researchers, healthcare providers, and policymakers and pave the way for better use of digital technology in the field of aging and caregiving.

Matched MeSH terms: Caregivers
The perceived cancer-related financial hardship among patients and their families: a systematic review

Azzani M, Roslani AC, Su TT

Support Care Cancer, 2015 Mar;23(3):889-98.
PMID: 25337681 DOI: 10.1007/s00520-014-2474-y

PURPOSE: The escalating health-care spending for cancer management has caused cancer patients to struggle further as a result of financial burden. This systematic review was carried out to investigate the prevalence of perceived financial hardship and associated factors among cancer patients and their families.
METHODS: A systematic search for studies concerning the perception of financial burden among cancer patients and their families was conducted. Several electronic resources such as Medline, Elsevier (Science Direct), Web of Science, Embase, PubMed, CINAHL and Scopus (SciVerse) were searched. Additionally, manual search through indices citation was also thoroughly utilized. The main outcome of interest was the prevalence of perceived financial hardship among cancer patients and their families. Studies reported only the cost of cancer treatment and qualitative studies were excluded. Our search was limited to articles that were published from 2003 to 2013.
RESULT: Ten studies were included in this review and with a majority originating from high-income countries. The prevalence of the financial burden perception was reported between 14.8 and 78.8 %. The most frequent and significant risk factor reported associated with the perception of financial difficulty was the households with low income. Discontinuation of treatment and poverty were conversely the important consequences of financial burden in cancer patients and their families.
CONCLUSION: Evidently, cancer is a long-term illness that requires a high financial cost, and a significant number of cancer patients and families struggle with financial difficulty. Identifying such groups with a high risk of facing financial difficulty is a crucial measure to ensure safety nets are readily available for these targeted population.

Matched MeSH terms: Caregivers/economics; Caregivers/statistics & numerical data
Health care interactional suffering in palliative care

Beng TS, Guan NC, Jane LE, Chin LE

Am J Hosp Palliat Care, 2014 May;31(3):307-14.
PMID: 23689367 DOI: 10.1177/1049909113490065

A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care.

Matched MeSH terms: Caregivers/psychology; Caregivers/statistics & numerical data
Distressed animal behaviors and some recommendations for improvements at the Kuala Lumpur Zoo, Malaysia

Haque A

J Appl Anim Welf Sci, 2006;9(4):333-5.
PMID: 17209757

The artificial living conditions of captive animals present numerous challenges for animal caretakers. In this study I explored abnormal behaviors in certain caged animals at the Kuala Lumpur Zoo. Findings obtained from observations of animals and interviews of the zoo staff are followed by recommendations: including the development of standards and manuals, licensing of zoos and animals, and increased budgets from governments or alternative sources. Such interventions should bring considerable improvements in animal welfare at the zoos in the region.

Matched MeSH terms: Caregivers/education*; Caregivers/psychology*
Assessing the needs of caregivers of children with disabilities in Penang, Malaysia

Tan SH

Health Soc Care Community, 2017 03;25(2):447-457.
PMID: 26833929 DOI: 10.1111/hsc.12325

Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0-12 years with disabilities registered with the Penang Department of Social Welfare. Caregivers completed a self-administered mailed questionnaire containing a 20-item Caregiver Needs Scale (CNS). Each item in the CNS was rated on a 5-point Likert scale ranging from 'help not at all needed' to 'help extremely needed'. A total of 273 surveys were available for analysis (response rate 34.0%). The CNS contained four domains. The 'Help getting Information and Services for child' domain had the highest mean score (3.61, 95% CI: 3.46, 3.77) followed by 'Help with Finances' (3.29, 95% CI: 3.13, 3.45) and 'Help Coping with child' (3.11, 95% CI: 2.97, 3.25), while the 'Help getting Childcare' domain had the lowest mean score (2.30, 95% CI: 2.13, 2.47). Multivariate regression analysis identified caregivers of younger children and with more severe disability as having more caregiver needs in all domains. Besides that, caregivers of children with learning disability needed more help getting information and help with coping. Caregivers of children with learning and multiple disabilities needed more help getting childcare compared to children with other disability. Caregivers of Indian ethnicity, who had less than a tertiary education and who themselves had medical problems needed more help with finances. The findings on caregiver needs in this study can help inform planning of family support services for children with disabilities in Penang, Malaysia.

Matched MeSH terms: Caregivers/psychology; Caregivers/statistics & numerical data*
Factors associated with high strain in caregivers of Alzheimer's disease (AD) in Malaysia

Chan EWL, Yap PS, Fazli Khalaf Z

Geriatr Nurs, 2019 02 11;40(4):380-385.
PMID: 30765175 DOI: 10.1016/j.gerinurse.2018.12.009

A cross-sectional study design involving a total of 230 participants, recruited through Alzheimer's Disease Foundation Malaysia (ADFM), was adopted to access and correlate caregiver strain index (CSI) and resilience (RES) levels of the AD caregivers with various patients' and caregivers' factors. Findings revealed that 77.7% of caregivers had a high level of stress, and there was a significant negative correlation between RES and CSI (P

Matched MeSH terms: Caregivers/psychology*; Caregivers/statistics & numerical data
Fulltext Validation of Infant and Young Child Feeding Questionnaire for the Assessment of Knowledge, Attitudes and Practices among Child Care Providers: The IYCF-CCPQ

Zakria NM, Tengku Ismail TA, Wan Mansor WNA, Sulaiman Z

Int J Environ Res Public Health, 2019 06 17;16(12).
PMID: 31213022 DOI: 10.3390/ijerph16122147

The validation of a new questionnaire is essential to improving its credibility in the assessment and collection of evidence. This study aimed to validate a newly developed infant and young child feeding questionnaire for child care providers (IYCF-CCPQ) to measure the knowledge, attitudes, and practices regarding infant and young child feeding among them. A cross-sectional study was conducted with 200 child care providers who were involved in handling children less than two years old in child care centers in the northeastern part of Peninsular Malaysia. The IYCF-CCPQ was self-administered and consists of three domains: Knowledge (104 items), attitude (90 items), and practice (42 items). The dichotomous-scale items in the knowledge domain were analyzed using a two-parameter logistic model of item response theory (2-PL IRT). The Likert-type-scale items in the attitude section were assessed using exploratory factor analysis (EFA). The items in the practice section were assessed descriptively. Internal consistency by marginal reliability was assessed in the knowledge domain, and Cronbach's alpha coefficient was used for the attitude domain. The marginal reliability values were 0.91 and 0.74 for the knowledge domains related to breastfeeding/formula feeding and complementary feeding, respectively, and the Cronbach's alpha values were 0.89 and 0.90 for the attitude domains related to breastfeeding/formula feeding and complementary feeding, respectively. The analysis showed good psychometric properties (discrimination, difficulty index, factor loading, and communalities) and good reliability. The IYCF-CCPQ is valid for use assessing the knowledge, attitudes, and practices among Malaysian child care providers regarding infant and young child feeding.

Matched MeSH terms: Caregivers/psychology*; Caregivers/statistics & numerical data*
Fulltext Effective implementation of a structured psychoeducation programme among caregivers of patients with schizophrenia in the community

Paranthaman V, Satnam K, Lim JL, Amar-Singh HS, Sararaks S, Nafiza MN, et al.

Asian J Psychiatr, 2010 Dec;3(4):206-12.
PMID: 23050889 DOI: 10.1016/j.ajp.2010.07.002

Background: Psychoeducation has shown promising benefits in managing patients with schizophrenia. In Malaysia, the use of psychoeducation is rather limited and its impact indeterminate.
Aims: To assess the effectiveness of a structured psychoeducation programme for the community in improving caregiver knowledge, decreasing caregivers’ burden, reducing patients’ readmission and defaulter follow up rates.
Method: In a controlled interventional study, 109 caregivers were included, 54 and 55 in the intervention and control groups respectively. Caregivers were assessed at baseline, 3 and 6 months post-intervention for knowledge and burden. Patients were monitored for relapse and defaulting follow up in the clinic.
Results: Caregivers in the intervention group showed significant improvement in knowledge, reduction in burden in assistance in daily living (severity) and a reduced defaulter rate was seen in the patients’ follow up.
Conclusion: The findings shows that structured psychoeducation programme among caregivers has the potential to improve outcome of care for patients with schizophrenia.
Keywords: Schizophrenia; Psychoeducation; Community; Caregiver Questionnaire: Family Burden Interview Schedule–Short Form (FBIS/SF)

Matched MeSH terms: Caregivers
Fulltext Current Issues Facing The Introduction Of Human Papillomavirus Vaccine In Malaysia

Wong LP, Sam IC

Malays Fam Physician, 2007;2(2):47-53.
PMID: 25606080 MyJurnal

Certain human papillomavirus (HPV) types are strongly associated with cervical cancer. Recently-described effective vaccines against these HPV types represent a great medical breakthrough in preventing cervical cancer. In Malaysia, the vaccine has just received regulatory approval. We are likely to face similar barriers to implementing HPV vaccination as reported by countries where vaccination has been introduced. Most women have poor understanding of HPV and its link to cervical cancer. Physicians who will be recommending HPV vaccines may not have extensive knowledge or experience with HPV-related disease. Furthermore, a vaccine against a sexually-transmitted infection may elicit negative reactions from potential recipients or their carers, particularly in a conservative society. Given the high cost of the vaccine, reaching the most vulnerable women is a concern. To foster broad acceptance of HPV vaccine, education must be provided to health care providers, parents and young women about the risks of HPV infection and the benefits of vaccination.

Matched MeSH terms: Caregivers
The Internal Reliability of Family Crisis Oriented Personal Evaluation Scale (F-COPES) in Malay version among caregivers of individual with learning disabilities

Alwi N, Harun D, Omar B, Ahmad M, Zagan M, Leonard JH

Clin Ter, 2015 Nov-Dec;166(6):e361-4.
PMID: 26794817 DOI: 10.7417/T.2015.1901

Caregivers face challenges to adapt while handling individual with learning disabilities (LD). The Family Crisis Oriented Personal Evaluation Scale (F-COPES) is a widely used instrument to measure coping strategies among caregivers. The current study performed cross cultural translation of F-COPES in Malay language. This study aims to examine the reliability by testing internal consistency of Malay version of F-COPES which is developed through back to back translation method from original English version.

Matched MeSH terms: Caregivers
Fulltext Extensive rectus sheath hematoma secondary to erroneous technique of anticoagulant injection

Hassan, S., Sutton, P.A., Smith, D.C., Kosai, N.R., Reynu, R., Shuhaili, M.A.

Medicine & Health, 2018;13(1):291-295.
MyJurnal

Rectus sheath hematoma (RSH) is a rare clinical entity that has been associated with the use of injectable anticoagulant therapy. Although low molecular weight heparin (LMWH) was proven to have a better safety profile than its predecessor, it is not without its own risk of bleeding. The increase in use of self-injectable LMWH in both in-patient as well as out-patient basis warrants greater awareness among health care providers, patients and caregivers regarding the potential risks and identification of possible complications. We present a fatal case of rectus sheath hematoma in an elderly man that occurred following erroneous technique of Dalteparin injection.

Matched MeSH terms: Caregivers
Fulltext Caring for moderate to severe dementia patients - Malaysian family caregivers experience

Zuria Idura A.M., Noorlaili M.T., Rosdinom R., Azlin B.., Tuti Iryani M.D.

International Medical Journal Malaysia, 2018;17(1):93-102.
MyJurnal

Introduction: Caring for those with dementia affects the quality of life for both the caregivers and the patients themselves, particularly in the informal care system here in Malaysia. To date, only a few studies have explored from the family caregivers’ perspectives in the communities of different cultural background. The purpose of this study is to describe the Malaysian family caregivers’ perspectives of their experiences in providing care to for their family members suffering from moderate to severe dementia in Kuala Lumpur, Malaysia. Methods: This qualitative study involved in-depth individual interviews with twelve caregivers to patients with moderate to severe dementia. Participants were recruited via purposive sampling from the outpatient psycho-geriatric clinic at UKM Medical Centre, Kuala Lumpur. All interviews were audio-recorded and transcribed verbatim. Transcribed data was later analysed using a thematic approach. Results: Four themes identified in this study were; i) the feeling that ‘it is like caring for a baby’, ii) the caregivers’ perception of inadequate knowledge and skills, iii) the need for caregivers’ support system and iv) the importance of spirituality in enhancing care giving experiences. Conclusions: The framework of care shared by the caregivers in this study demonstrated strong cultural and spirituality influences in addition to the common issues of the challenges in managing the behavioural and psychological symptoms in people with dementia. Hence, culture and spirituality aspects should be addressed in the development of appropriate intervention to manage the needs of informal caregivers in this community.

Matched MeSH terms: Caregivers
Fulltext Vaccine knowledge, awareness, and hesitancy among Malaysian parents attending health clinics in Sandakan, Sabah

James Yau Hon Voo, Baharudin Ibrahim, Mohamed Azmi Hassali, Foong Ming Moy

Malaysian Journal of Medicine and Health Sciences, 2019;15(106):21-21.
MyJurnal

Introduction: There has been a resurgence of vaccine-preventable diseases in Malaysia over the recent years. In overcoming this issue, parents as the main caregiver of their children play a major role, which is to protect their children against diseases via vaccinations. This study aimed to examine the parents’ vaccine knowledge, aware-ness, and hesitancy in relation to their children’s immunisation status and to determine the association between the parents’ vaccine knowledge, awareness, and hesitancy. Methods: A cross-sectional study with a sample size of 405 parents was conducted in the Sandakan health clinics from February 2018 to April 2018 by employing validated questionnaires adapted from two studies. Results: The median ± IQR of the total vaccine knowledge and awareness scores (ranging from 0-10) were 7.00±3.00 and 8.00±4.00, respectively. Meanwhile, the median ± IQR of the total vaccine hesitancy scores (ranging from 0-100) was 16.67±20.00, with only 27 (6.8%) parents being vaccine-hesitant (scores >50). Most of the children (n=376, 92.8%) were immunised in the study. It observed a significant association between the children’s immunisation status and the parents’ vaccine knowledge scores (p = 0.005). Nevertheless, the children’s immunisation status was not significantly associated with the parents’ vaccine awareness and hesitancy scores. The positive Spearman correlation value (r = 0.551) signified that the parents’ vaccine knowledge was posi-tively associated with their vaccine awareness. On the other hand, both the vaccine knowledge and awareness were negatively correlated to the vaccine hesitancy as indicated by the negative Spearman correlation value (r = -0.397 and r = -0.351 respectively). Conclusion: The study established that the parents with a better understanding about vaccinations were more likely to keep their children’s immunisation up-to-date. It was also revealed that improving the parents’ knowledge and raising their awareness about the importance of vaccination are vital in reducing their vaccine hesitancy.

Matched MeSH terms: Caregivers
Fulltext The needs of traumatic brain injury survivors' caregivers and the implication required during the COVID-19 pandemic: Public health issues

Othman H, Ludin SM, Saidi S, Awang MS

J Public Health Res, 2021 Apr 14;10(2).
PMID: 33855403 DOI: 10.4081/jphr.2021.2205

BACKGROUND: Traumatic brain injury (TBI) survivors require attention and dependence from their primary caregiver. This is because TBI is a defect that affects both the psychological and physical functions of the victim. Caregivers play an essential role in providing the adequate care victims need to adjust to the new problems they may experience due to their condition, as family members alone may not be able to provide for their needs. In particular, TBI caregivers may face specific challenges when assisting their patients in handling unexpected changes to their daily routines. Therefore, this quantitative study aims to explore the needs of caregivers, their coping mechanisms towards stressful and traumatic circumstances, and how they provide care to their loved ones during the COVID-19 pandemic.
DESIGN AND METHODS: It was conducted with ten caregivers of individuals suffering from traumatic brain injury, that were selected using a theoretical sampling method. Data were obtained using a semi-structured interview guide, which helped the caregivers provide their responses. Meanwhile, data analysis was performed using the NVIVO analysis software.
RESULTS: The results showed that there were, three significant themes namely, (a) Support needed, (b) the information need for care, and (c) developing self-resilience. The results also showed that caregivers really need support from the various parties, and the participants lack information on specific care techniques for the severe traumatic brain injury (TBI) survivors.
CONCLUSION: In conclusion, caregivers require approval and seek more useful information to provide excellent care to their loved ones. Being aware of the caregiver's needs would enable them to offer improved customized care.

Matched MeSH terms: Caregivers
Fulltext Behind the Scenes of Parents Nurturing a Child with Autism: A Qualitative Study in Malaysia

Yaacob WNW, Yaacob LH, Muhamad R, Zulkifli MM

Int J Environ Res Public Health, 2021 08 12;18(16).
PMID: 34444280 DOI: 10.3390/ijerph18168532

Many parents have experienced difficulties in parenting children with autism. We, therefore, consider a more in-depth understanding that is necessary to explore the challenges facing parents and families to provide a better outcome for both. We interviewed 21 parents of 24 children with autism spectrum disorder (ASD) to qualitatively explore the challenges they experienced through a phenomenological framework. Four main aspects emerged as challenges to the parents: inadequate knowledge, psychological distress and stigma, lack of support, and barriers to services. These four themes reflect a lack of balance between the needs of caregivers and the services and resources or support available in the community to meet those needs. Our study contributes to an understanding of how parents perceive challenges, making it easier to take necessary action to meet their needs and ease their burden of stress. A concerted effort is needed to coordinate services across all disciplines to address these challenges.

Matched MeSH terms: Caregivers
Fulltext When males become victims – a case report

Ek Zakuan Kalil, Tan, Susan M.K., Loh, Sit Fong, Norazlin Kamal Nor, Suzaily Wahab

ASEAN Journal of Psychiatry, 2010;11(2):216-219.
MyJurnal

Objective: This case report highlights males as victims of sexual abuse, ascertain the factors that are associated with male sexual abuse and outline problems in management of sexual abuse with the presence of co morbidities. Methods: We report a case of sexual abuse in a 14 year old boy who has borderline mental retardation and ADHD. Results: The victim was
traumatized due to the abuse. The perpetrator was not charged due to lack of evidence of the abuse and stigma. Conclusion: Sexual abuse that occurs in males can be influenced by multiple factors such as the presence of comorbidities. Strong awareness must be present in caregivers to prevent abuse in this population and to take appropriate and early action to effect the necessary intervention.

Matched MeSH terms: Caregivers
Fulltext Circle of Care Project: a tool for growth in Psychosocial Interventions in Malaysia

Malaysian Journal of Psychiatry, 2010;19(2):1-5.
MyJurnal

This short report aims to describe the Circle of Care (COC) Project in Malaysia. This is an example of smart partnership between the Malaysian Psychiatric Association (MPA) and Johnson and Johnson which began in 2003. By means of philanthropic funds from an industrial company, many people have benefited in many different aspects through the project. It consists of three main psychosocial activities: education and support programme for carers and families of people with mental illness; psychosocial rehabilitation for patients with mental illness; and mass education for the people in promoting mental health and prevention of mental health problems and illness. To date, the project has either fully or partially funded hundreds of activities along the line of these three objectives. While there has been growth of psychosocial interventions in the country contributed by the project, it is faced with a few challenges which are becoming the next focus of actions of MPA.

Matched MeSH terms: Caregivers
Fulltext Should parental decision override best interest of a handicapped child? A case illustration in a Malaysian child with Down Syndrome

Fashiham Taib, Nur Arzuar Abdul Rahim, Mohd Rizal Mohd Zain, Mohamad Ikram Ilias, Nik Mohd Rizal Mohd Fakri, Zabidi Azhar Hussin

Education in Medicine Journal, 2015;7(1):67-71.
MyJurnal

The paper discusses on the complexity of the issues surrounding a patient with subluxation of cervical spine in a Down syndrome child. Several relevant issues are discussed including consent in a minor, conflicting decision making between parents and doctors, end-of-life issues, supporting handicapped child with minimal co-morbidities, community ethics, neglect of care by the caregiver and decision making after allowing zonal of parental discretion. Despite the difficulties surrounding parental actions, there are still ethical priorities which have to be considered individually to alleviate the suffering of the patients and the family members. Dealing with patients with chronic illnesses is a challenge for any medical doctors. The case warrants sensitive approach to allow appropriate respect for parental decision despite in disagreement with the clinical team. The term ‘zone of parental discretion’ refers to a controversial area of decision making; and has still many potential conflicts on day to day clinical cases, especially among the conservative society in the East Coast of Peninsular Malaysia.

Matched MeSH terms: Caregivers
A cross-sectional study of childhood injuries in Kedah, Malaysia

Mohd Riji, H., Sopian, M.J., Pataki-Schweizer, K.J.

Malaysian Journal of Paediatrics and Child Health, 2000;12(1):60-67.
MyJurnal

A community-based study of childhood injuries in Kedah was undertaken in January-March 1996. The aims were to determine the types and frequencies of injuries reported; to assess the association between injury and selected variables (age, sex, place, number of children in the family, presence of care-givers and treatment); and to recommend further research and policy for childhood injury prevention. A total of 448 injuries were recorded from 1089 children in 451 randomly selected households. The incidence was 411.4/1000. There appeared to be a decrease in risk of injury as the number of children per household increased. The effect of lower age on injury was significant (p>0.05). Male children were 1.5 times more likely to injure themselves than female children when data were controlled for number of children in the household. Falls accounted for 53.3% of all injuries sustained, and occurred more frequently when the child was with non-family members. Different injury categories were associated with different caregiver categories. It is concluded that child injury prevention programmes require more data on injury situations and collaborative efforts between clinical, health and and behavioural professionals.

Matched MeSH terms: Caregivers
Fulltext Multicompartmental congenital intracranial immature teratoma

Ganesan, Dharmendra, Sheau, Fung Sia, Narayann, Vairavan, Kumar, Gnana, Lum, Lucy, Chan,Lucy, et al.

Neurology Asia, 2013;18(1):117-121.
MyJurnal

Congenital intracranial tumors are rare and account for 0.5 to 1.5% of all childhood tumours. We report a case of a 3 week old baby presenting with multi compartmental congenital intracranial immature teratoma, first of its kind in the literature. The child had gross total excision in two stages with aid of neuronavigation. The short term outcome was good. The four years of follow-up with serial imaging showed no tumour recurrence with a stable hydrocephalus after shunting. However, there is global developmental delay with full time dependence of care giver.

Matched MeSH terms: Caregivers

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