An Insight Into the Experiences of Malaysian Patients With Advanced Cancer and Their Preferences in End-of-Life Care: A Qualitative Study.

BACKGROUND: Preferences of patients with advanced cancer are well studied in Western countries but less so in Asian communities where end-of-life discussions can be seen as taboo. This may lead to patients receiving care that is incongruent with their wishes as their disease progress. It is important for healthcare providers to have a better understanding of patients' experiences and preferences especially in a multicultural country like Malaysia with its diverse beliefs and values to facilitate better planning for future medical care. OBJECTIVES: To explore the experiences and preferences of Malaysian patients with advanced cancer. DESIGN: Qualitative study of semi-structured interviews with thematic analysis. SETTING/SUBJECTS: Purposive sampling of 19 patients with Stage 4 cancer recruited from inpatient and outpatient settings in National Cancer Institute Malaysia. RESULTS: Three major themes emerged in the exploration of patients' experiences and care preferences in facing advanced cancer namely: 1) Dealing with poor prognosis 2) Spirituality as a source of strength and 3) Enablers of advance care planning. CONCLUSION: This study highlighted the preference for healthcare providers to be culturally sensitive during end-of-life care discussion and the need for improved spiritual care for Malaysian patients with advanced cancer. Further studies exploring the role of spiritual and cultural factors in advance care planning among Malaysians would be helpful in guiding these efforts.

Perceived unmet needs of an age-friendly environment: A qualitative exploration of older adults' perspectives in a Malaysian city.

This exploratory qualitative study investigates older adults' unmet needs in the age-friendly city of Ipoh, Malaysia. Seventeen participants were interviewed, including ten older adults residing in Ipoh City for at least six months, four carers, and three professional key informants. Interviews were conducted using semi-structured questions based on the WHO Age-Friendly Cities Framework. A 5P framework for active ageing based on the ecological ageing model was adapted for data analysis. The 5P framework consists of domains of person (micro), process (meso), place (macro), policymaking (macro), and prime, which allows for the dissection of older adults' unmet needs in planning for multilevel approaches, which were employed for analysis. Person: the personal needs requiring improvement included digital divide disparity, inadequate family support, and restricted sports activities attributed to physical limitations. Process: There were fewer social activities and a lack of low-cost and easily accessible venues for seniors. Economic challenges include expensive private healthcare services, variation in the quality of care in older residential care facilities, and limited savings for retirement. Place issues include unequal distribution of exercise equipment, public open spaces, the need for more conducive parking for seniors, and a place for social activities. Difficulties assessing public transportation, digitalized services, and unaffordable e-hailing services are common among seniors. Housing issues for seniors include a lack of barrier-free housing design and unaffordable housing. Policymaking: Insufficient private sector commitment to improving services to older adults, lack of policy governance on the quality of nursing homes, and insufficient multidisciplinary governance collaboration. Prime: Health promotion for preventing age-related illness is required to preserve health in old age, and full-time family caregivers' psychological well-being is often overlooked.

The challenges in managing the growth of indigenous children in Perak State, Malaysia: A qualitative study.

Indigenous peoples in Peninsular Malaysia, known as Orang Asli, have been associated with the problem of malnutrition. Approximately 40% of their children are underweight. Indigenous peoples' distinct social, cultural, and economic traits, which differ from those of the dominant communities in which they live, may pose significant challenges for health care providers (HCPs) in addressing the malnutrition issue. This study explores challenges encountered by HCPs, with at least six months of experience in monitoring the growth parameters of Orang Asli children residing in Perak State in Peninsular Malaysia. A cross-sectional study was conducted between December 2020 and June 2021, involving three focus group discussions and three in-depth interviews. Thematic analysis was used. A total of 19 participants (6 nurses, 5 nursing managers, 4 medical officers, 2 nutritionists, a family medicine specialist, and a paediatrician) took part in this study. The challenges were summarized into four themes: (I) accessibility to nutrition, (II) accessibility to healthcare services, (II) skills of HCPs, and (IV) challenges of implementing nutrition programs. The inability of the Orang Asli children to access nutritious food was due to poverty, different perceptions of life priorities, and the practice of food taboos among the communities. Inadequate infrastructure and transportation discourage parents from bringing their children to healthcare facilities. The belief in and preference for traditional healing, the practice of semi-nomadic lifestyles, and fear of HCPs and their timid nature were factors that prevented Orang Asli children from accessing healthcare services. HCPs need to equip themselves with cross-cultural communication and interaction skills and adapt their skills to environmental challenges to overcome unexpected encounters in mobile clinics. The non-exposed food items, the risk of food basket sharing with other family members, and community feeding programs' coordination were the challenges to be addressed when implementing nutrition programmes for Orang Asli children. The challenges of HCPs are multifactorial and require a multifaceted approach. There is a need for joint efforts of stakeholders, from communities and non-governmental organisations (NGOs) to the health authorities, to address the challenges of HCPs.

Social responsibility perspective in public response to the COVID-19 pandemic: a grounded theory approach.

BACKGROUND: Combating viral outbreaks extends beyond biomedical and clinical approaches; thus, public health prevention measures are equally important. Public engagement in preventive efforts can be viewed as the social responsibility of individuals in controlling an infectious disease and are subjected to change due to human behaviour. Understanding individuals' perception of social responsibility is crucial and is not yet explored extensively in the academic literature. We adopted the grounded theory method to develop an explanatory substantive theory to illustrate the process of how individual responded to the outbreak from a social responsibility perspective. METHODS: In-depth interviews were conducted among 23 Malaysians either through telephone or face-to-face depending on the participant's preference. Both purposive and theoretical sampling were used. Participants were invited to share their understanding, perceptions and activities during the COVID-19 pandemic. They were further probed about their perceptions on complying with the public health interventions imposed by the authorities. The interviews were audio-recorded and transcribed verbatim. Data was analysed via open coding, focus coding and theoretical coding, facilitated by memoing, sketching and modelling. RESULTS: Study findings showed that, social responsibility is perceived within its role, the perceived societal role responsibility. In a particular context, an individual assumed only one of the many expected social roles with their perceived circle of responsibility. Individuals negotiated their actions from this perspective, after considering the perceived risk during the outbreak. The four types of behaviour depicted in the matrix diagram facilitate the understanding of the abstract concept of negotiation in the human decision-making process, and provide the spectrum of different behaviour in relation to public response to the COVID-19 pandemic. CONCLUSIONS: Our study adopted the grounded theory approach to develop a theoretical model that illustrates how individual response to COVID-19 preventive measures is determined by the negotiation between perceived societal role responsibility and perceived infection risk. This substantive theoretical model is abstract, thus has relevance for adoption within similar context of an outbreak.

Appointment structure in Malaysian healthcare system during the COVID-19 pandemic: The public perspective.

INTRODUCTION: Evidence shows physical distancing of one metre or more is important to reduce person-to-person SARS-CoV-2 transmission. This puts the Malaysian public healthcare system to a test when overcrowding has always been an issue. A new clinical appointment structure was proposed in the Malaysian public healthcare system amidst the pandemic to reduce the transmission risk. We aim to explore the general public's view on the proposed clinic appointment structure. METHODS: A cross-sectional anonymous web-based survey was conducted between 10th September 2020 and 30th November 2020. The survey was open to Malaysian aged 18 years and older via various social media platforms. The questionnaire consists of sociodemographic, experience of utilising healthcare facilities, and views on clinic appointment structure. RESULTS: A total of 1,144 complete responses were received. The mean age was 41.4 ± 12.4 years and more than half of the respondents had a preference for public healthcare. Among them, 77.1% reported to have a clinical appointment scheduled in the past. Less than a quarter experienced off-office hour appointments, mostly given by private healthcare. 70.2% answered they would arrive earlier if they were given a specific appointment slot at a public healthcare facility, as parking availability was the utmost concern. Majority hold positive views for after office hour clinical appointments, with 68.9% and 63.2% agreed for weekend and weekday evening appointment, respectively. The top reason of agreement was working commitment during office hours, while family commitment and personal resting time were the main reasons for disagreeing with off-office hour appointments. CONCLUSION: We found that majority of our respondents chose to come early instead of arriving on time which disrupts the staggered appointment system and causes over crowdedness. Our findings also show that the majority of our respondents accept off-office hour appointments. This positive response suggests that off-office hour appointments may have a high uptake amongst the public and thus be a possible solution to distribute the patient load. Therefore, this information may help policy makers to initiate future plans to resolve congestions within public health care facilities which in turn eases physical distancing during the pandemic.

Addressing Gaps for Health Systems Strengthening: A Public Perspective on Health Systems' Response towards COVID-19.

Strengthening the health systems through gaps identification is necessary to ensure sustainable improvements especially in facing a debilitating outbreak such as COVID-19. This study aims to explore public perspective on health systems' response towards COVID-19, and to identify gaps for health systems strengthening by leveraging on WHO health systems' building blocks. A qualitative study was conducted using open-ended questions survey among public followed by in-depth interviews with key informants. Opinions on Malaysia's health systems response towards COVID-19 were gathered. Data were exported to NVIVO version 12 and analysed using content analysis approach. The study identified various issues on health systems' response towards COVID-19, which were then mapped into health systems' building blocks. The study showed the gaps were embedded among complex interactions between the health systems building blocks. The leadership and governance building block had cross-cutting effects, and all building blocks influenced service deliveries. Understanding the complexities in fostering whole-systems strengthening through a holistic measure in facing an outbreak was paramount. Applying systems thinking in addressing gaps could help addressing the complexity at a macro level, including consideration of how an action implicates other building blocks and approaching the governance effort in a more adaptive manner to develop resilient systems.

Perception of the Movement Control Order during the COVID-19 Pandemic: A Qualitative Study in Malaysia.

Malaysia implemented its first Movement Control Order (MCO) during the early phase of the COVID-19 pandemic to slow the transmission of the virus. This study aimed to explore the public perception of the MCO implementation and people's experiences during this period. The study employed qualitative explorative in-depth interviews conducted with 23 Malaysian adults from various demographic backgrounds. Thematic analysis was performed using NVivo 12. Three main themes were identified: a period of information surge, heterogeneous emotional response, and attempts to adapt. During the MCO, the participants obtained information from multiple platforms. They suggested the need for clear and repeated instructions to avoid confusion and misinformation. They also acknowledged the importance of the MCO in breaking the chain of transmission and safeguarding high-risk groups; however, they also expressed that stricter enforcement from the authorities was warranted. The changes in the participants' work-life routines, lack of physical interaction, and uncertainty about their health and the economy due to the MCO negatively impacted their psychological states. Despite these challenges, the participants attempted to adapt to life under the MCO in different ways. The findings imply that during a crisis, the public tends to seek clear and reliable information, experience emotional turmoil, and adapt to changes. The MCO implementation can be improved through an effective communication strategy and efforts to battle misinformation.

Process evaluation of enhancing primary health care for non-communicable disease management in Malaysia: Uncovering the fidelity & feasibility elements.

BACKGROUND: In combating the increasing trend of non-communicable diseases (NCDs) over the last two decades in the country, the Ministry of Health Malaysia developed the Enhanced Primary Health Care (EnPHC) initiative to improve care management across different levels of the public service delivery network. An evaluation research component was embedded to explore the implementation issues in terms of fidelity, feasibility, adaptation and benefit of the initiative's components which were triage, care coordination, screening, risk management and referral system. METHODS: A mixed methods study was conducted at 20 participating EnPHC clinics in Johor and Selangor, two months after the intervention was initiated. Data collected from self-reported forms and a structured observation checklist were descriptively analysed. In-depth interviews were also conducted with 20 participants across the clinics selected to clarify any information gaps observed in each clinic, and data were thematically analysed. RESULTS: Evaluation showed that all components of EnPHC intervention had been successfully implemented except for the primary triage counter and visit checklist. The challenges were mainly discovered in terms of human resource and physical structure. Although human resource was a common implementation challenge across all interventions, clinic-specific issues could still be identified. Among the adaptive measures taken were task sharing among staff and workflow modification to match the clinic's capacity. Despite the challenges, early benefits of implementation were highlighted especially in terms of service outcomes. CONCLUSIONS: The evaluation study disclosed issues of human resource and physical infrastructure when a supplementary intervention is implemented. To successfully achieve a scaled-up PHC service delivery model based on comprehensive management of NCDs patient-centred care, the adaptive measures in local clinic context highlight the importance of collaboration between good organisational process and good clinical practice and process.

Assessing receptiveness to change among primary healthcare providers by adopting the consolidated framework for implementation research (CFIR).

BACKGROUND: Amid the current burden of non-communicable (NCD) diseases in Malaysia, there is a growing demand for more efficient service delivery of primary healthcare. A complex intervention is proposed to improve NCD management in Malaysia. This exploratory study aimed to assess primary healthcare providers' receptiveness towards change prior to implementation of the proposed complex intervention. METHOD: This study was conducted using an exploratory qualitative approach on purposely selected healthcare providers at primary healthcare clinics. Twenty focus group discussions and three in-depth interviews were conducted using a semi-structured interview guide. Consent was obtained prior to interviews and for audio-recordings. Interviews were transcribed verbatim and thematically analysed, guided by the Consolidated Framework for Implementation Research (CFIR), a framework comprised of five major domains promoting implementation theory development and verification across multiple contexts. RESULTS: The study revealed via CFIR that most primary healthcare providers were receptive towards any proposed changes or intervention for the betterment of NCD care management. However, many challenges were outlined across four CFIR domains-intervention characteristics, outer setting, inner setting, and individual characteristics-that included perceived barriers to implementation. Perception of issues that triggered proposed changes reflected the current situation, including existing facilitating aspects that can support the implementation of any future intervention. The importance of strengthening the primary healthcare delivery system was also expressed. CONCLUSION: Understanding existing situations faced at the primary healthcare setting is imperative prior to implementation of any intervention. Healthcare providers' receptiveness to change was explored, and using CFIR framework, challenges or perceived barriers among healthcare providers were identified. CFIR was able to outline the clinics' setting, individual behaviour and external agency factors that have direct impact to the organisation. These are important indicators in ensuring feasibility, effectiveness and sustainability of any intervention, as well as future scalability considerations.

Research funding impact and priority setting - advancing universal access and quality healthcare research in Malaysia.

BACKGROUND: Health Research Priority Setting (HRPS) in the Ministry of Health (MOH) Malaysia was initiated more than a decade ago to drive effort toward research for informed decision and policy-making. This study assessed the impact of funded prioritised research and identified research gaps to inform future priority setting initiatives for universal access and quality healthcare in Malaysia. METHODS: Research impact of universal access and quality healthcare projects funded by the National Institutes of Health Malaysia were assessed based on the modified Payback Framework, addressing categories of informing policy, knowledge production, and benefits to health and health sector. For the HRPS process, the Child Health and Nutrition Research Initiative methodology was adapted and adopted, with the incorporation of stakeholder values using weights and monetary allocation survey. Workshop discussions and interviews with stakeholders and research groups were conducted to identify research gaps, with the use of conceptual frameworks to guide the search. RESULTS: Seventeen ongoing and 50 completed projects were identified for research funding impact analysis. Overall, research fund allocation differed from stakeholders' expectation. For research impact, 48 out of 50 completed projects (96.0%) contributed to some form of policy-making efforts. Almost all completed projects resulted in outputs that contributed to knowledge production and were expected to lead to health and health sector benefits. The HRPS process led to the identification of research priority areas that stemmed from ongoing and new issues identified for universal access and quality healthcare. CONCLUSION: The concerted efforts of evaluation of research funding impact, prioritisation, dissemination and policy-maker involvement were valuable for optimal health research resource utilisation in a resource constrained developing country. Embedding impact evaluation into a priority setting process and funding research based on national needs could facilitate health research investment to reach its potential.

Selection of Treatment Strategies among Patients with Type 2 Diabetes Mellitus in Malaysia: A Grounded Theory Approach.

BACKGROUND: Diabetes Mellitus is a multifaceted chronic illness and its life-long treatment process requires patients to continuously engage with the healthcare system. The understanding of how patients manoeuvre through the healthcare system for treatment is crucial in assisting them to optimise their disease management. This study aims to explore issues determining patients' treatment strategies and the process of patients manoeuvring through the current healthcare system in selecting their choice of treatment for T2DM. METHODS: The Grounded Theory methodology was used. Twelve patients with Type 2 Diabetes Mellitus, nine family members and five healthcare providers from the primary care clinics were interviewed using a semi-structured interview guide. Three focus group discussions were conducted among thirteen healthcare providers from public primary care clinics. Both purposive and theoretical samplings were used for data collection. The interviews were audio-taped and transcribed verbatim, followed by line-by-line coding and constant comparison to identify the categories and core category. RESULTS: The concept of "experimentation" was observed in patients' help-seeking behaviour. The "experimentation" process required triggers, followed by information seeking related to treatment characteristics from trusted family members, friends and healthcare providers to enable decisions to be made on the choice of treatment modalities. The whole process was dynamic and iterative through interaction with the healthcare system. The decision-making process in choosing the types of treatment was complex with an element of trial-and-error. The anchor of this process was the desire to fulfil the patient's expected outcome. CONCLUSION: Patients with Type 2 Diabetes Mellitus continuously used "experimentation" in their treatment strategies and help-seeking process. The "experimentation" process was experiential, with continuous evaluation, information seeking and decision-making tinged with the element of trial-and-error. The theoretical model generated from this study is abstract, is believed to have a broad applicability to other diseases, may be applied at varying stages of disease development and is non-context specific.

Social Influences of Help-Seeking Behaviour Among Patients With Type 2 Diabetes Mellitus in Malaysia.

This qualitative study aimed to explore the influence of social networks such as family members, friends, peers, and health care providers toward the help-seeking behaviour (HSB) of patients with type 2 diabetes mellitus in the public and private primary care settings. In-depth interviews of 12 patients, 9 family members, and 5 health care providers, as well as 3 focus groups among 13 health care providers were conducted. All interviews were audio-taped and transcribed verbatim for qualitative analysis. Social influences play a significant role in the help-seeking process; once diagnosed, patients source information from people around them to make decisions. This significant influence depends on the relationship between patients and social networks or the level of trust, support, and comforting feeling. Thus, the impacts on patients' help-seeking behavior are varied. However, the help-seeking process is not solely an individual's concern but a dynamic process interacting with the social networks within the health care system.

Mixed feelings about the diagnosis of type 2 diabetes mellitus: a consequence of adjusting to health related quality of life.

This study aims to explore patients' reactions to the diagnosis of type 2 diabetes mellitus (T2DM) and their health related quality of life. We adopted a qualitative exploratory study design using a thematic analysis. Twelve patients with T2DM for more than a 2-year duration were interviewed using a semi-structured interview guide. Both purposive and theoretical samplings were used for data collection. The in-depth interviews were audio-taped and transcribed verbatim, followed by line-by-line coding and constant comparison to identify the themes. Data management was facilitated using Nvivo 10. Patients shared their mixed feelings about the diagnosis of T2DM. Six domains of quality of life emerged from these interviews, namely physical and social functioning, work function and social obligations, dietary freedom and conforming to treatment standard. Diabetes management needs to take these themes and patients' feelings associated with their quality of life into consideration.

Desperately seeking dissonance: identifying the disconfirming case in qualitative evidence synthesis.

Actively seeking the disconfirming or deviant case is properly regarded as a hallmark of trustworthiness in primary qualitative research. The need to subject emergent theory to such testing is no less important within qualitative systematic reviews. There is, as yet, little available guidance on how to implement such strategies. Few researchers have described the practicalities of seeking the disconfirming case. We survey the methodological literature to gain a better understanding of how systematic reviews of qualitative research handle the disconfirming case. We reflect on our own experience from three recent qualitative evidence syntheses. We describe how reviewers might actively manufacture opportunities to identify discrepant or refutational findings. We conclude by outlining possible methods by which a team might integrate active seeking of a disconfirming case within the overall review process.

Extent and determinants of patients' unvoiced needs.

Patients with issues or health problems usually plan to discuss their concerns with their health care providers. If these concerns were not presented or voiced during the health care provider-patient encounter, the patients are considered to have unvoiced needs. This article examines the extent and possible determinants of patients' unvoiced needs in an outpatient setting. A cross-sectional study was conducted in 5 Ministry of Health Malaysia primary health facilities throughout the country. Of 1829 who participated, 5 did not respond to the question on planned issues. Of the 1824 respondents, 57.9% (95% confidence interval = 47.1-68.7) claimed to have issues/problems they planned to share, of whom 15.1% to 26.7% had unvoiced needs. Extent of unvoiced needs differed by employment status, perceived category of health care provider, and study center. Perceived category of health care provider, method of questionnaire administration, and study center were the only significant determinants of unvoiced needs. Unvoiced needs do exist in Malaysia and there is a need for health care providers to be aware and take steps to counter this.