Open Access Protocol BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from Elder mistreatment in a community dwelling population: the Malaysian Elder Mistreatment Project (MAESTRO) cohort study protocol

Wan Yuen Choo,1 Noran Naqiah Hairi,1 Rajini Sooryanarayana,1 Raudah Mohd Yunus,1 Farizah Mohd Hairi,1 Norliana Ismail,1 Shathanapriya Kandiben,1 Zainudin Mohd Ali,2 Sharifah Nor Ahmad,2 Inayah Abdul Razak,2 Sajaratulnisah Othman,3 Maw Pin Tan,4 Fadzilah Hanum Mohd Mydin,3 Devi Peramalah,1 Patricia Brownell,5 Awang Bulgiba1

To cite: Choo WY, Hairi NN, ABSTRACT et al Strengths and limitations of this study Sooryanarayana R, . Introduction: Despite being now recognised as a Elder mistreatment in a global health concern, there is still an inadequate ▪ community dwelling This study is among the first few cohort studies amount of research into elder mistreatment, especially population: the Malaysian investigating into elder mistreatment in the South Elder Mistreatment Project in low and middle-income regions. The purpose of this East Asian region. (MAESTRO) cohort study paper is to report on the design and methodology of a ▪ It has a prospective study design with a long protocol. BMJ Open 2016;6: population-based cohort study on elder mistreatment period of follow-up, with emphasis not only on e011057. doi:10.1136/ among the older Malaysian population. The study aims epidemiological characteristics of elder mistreat- bmjopen-2016-011057 at gathering data and evidence to estimate the ment but also on determinants at different levels prevalence and incidence of elder mistreatment, of framework and measuring consequences of ▸ Prepublication history for identify its individual, familial and social determinants, abuse. this paper is available online. and quantify its health consequences. ▪ The study subjects are representative of the older

To view these files please Methods and analysis: This is a community-based rural Malaysian population as the sampling frame http://bmjopen.bmj.com/ visit the journal online prospective cohort study using randomly selected is derived from the national census. (http://dx.doi.org/10.1136/ households from the national census. A multistage ▪ Face-to-face interviews and active engagement of bmjopen-2016-011057). sampling method was employed to obtain a total of local community with personalised contact were 2496 older adults living in the rural Kuala Pilah district. Received 6 January 2016 employed to ensure a high response rate. ▪ Revised 13 April 2016 The study is divided into two phases: cross-sectional Exclusion of groups most at risk of elder mis- Accepted 3 May 2016 study (baseline), and a longitudinal follow-up study at treatment, in particular, older adults with demen- the third and fifth years. Elder mistreatment was tia, those with severe cognitive impairment and measured using instrument derived from the previous elders residing in long-term care institutions, literature and modified Conflict Tactic Scales. may potentially under-report the abuse on September 23, 2021 by guest. Protected copyright. Outcomes of elder mistreatment include mortality, estimates. physical function, mental health, quality of life and health utilisation. Logistic regression models are used to examine the relationship between risk factors and departments, and published in appropriate scientific abuse estimates. Cox proportional hazard journals and presented at conferences. regression will be used to estimate risk of mortality associated with abuse. Associated annual rate of hospitalisation and health visit frequency, and reporting of abuse, will be estimated using Poisson regression. INTRODUCTION Ethics and dissemination: The study has been The publication, ‘Granny Bashing’, in 1975, approved by the Medical Ethics Committee of the is generally regarded as the starting point for University of Malaya Medical Center (MEC Ref 902.2) 12 For numbered affiliations see and the Malaysian National Medical Research Register systematic research into elder abuse. More end of article. (NMRR-12-1444-11726). Written consent was recently, there has been an expanding move- obtained from all respondents prior to baseline ment to improve rights of the elderly, and Correspondence to assessment and subsequent follow-up. Findings will be their physical and emotional well-being. The Dr Wan Yuen Choo; disseminated to local stakeholders via forums with WHO has recognised elder mistreatment [email protected] community leaders, and health and social welfare (also known as elder abuse and neglect) as a

Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 1 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from growing challenge in the field of public health, and pervasiveness and lack of awareness on elder mistreat- social and criminal justice worldwide. Elder mistreat- ment in the community.17 One of the earliest attempts ment is defined as ‘a single or repeated act, or lack of to quantify the elder mistreatment issue among older appropriate action, occurring within any relationship Asian populations was conducted by Dong and collea- where there is an expectation of trust which causes gues, who performed a cross-sectional survey among harm or distress to an elder person’. This includes detri- older Chinese adults in a medical centre in Nanjing, ment to older adults by people they know or with whom China. They found about 35% of elderly screened posi- they have a relationship, such as spouse, partner or tive for elder mistreatment with neglect found to be other family member, friend or neighbour, or those on most common form of abuse, followed by financial whom they rely for services.3 Elder mistreatment is exploitation and psychological abuse.18 Epidemiological broadly categorised into physical, psychological or emo- evidence on elder mistreatment in this region remains tional, financial, sexual and neglect.4 to be found. Further research to determine the extent Research findings in economically developed regions of elder mistreatment and the universality of its risk and circumstantial evidence suggest that elder mistreat- factors across different populations is necessary. ment is a much more universal phenomenon than what Empirical data are essential to identify older adults at is generally perceived by society. Elder mistreatment risk and facilitate the development of community- prevalence estimates documented by recent studies specific and evidence-based preventive measures. varied from as low as 1.1% to as high as 44.6%,5 while Malaysia is a multiethnic and multicultural country Cooper and colleagues in an earlier review found that with a population estimate of 29 million in 2014. older population studies generated a prevalence esti- According to the World Bank classification, Malaysia is mate of between 3.2% and 27.5%. Dependent or vulner- an upper-middle-income and developing economy situ- able older people are at higher risk of abuse with nearly ated in the East Asia and Pacific region.19 Its population a quarter of them reporting psychological abuse and a consists mainly of ethnic Malays (47%), followed by fifth reporting neglect.6 Early studies of elder mistreat- Chinese (25%), Indians (7%) and indigenous tribal ment derived from Western countries indicated an asso- groups (11%). Population projections predict that the ciation between abuse and gender, socioeconomic status number of people aged 60 years and above will form – and ethnicity.7 9 For instance, older women were more nearly 11% of the national population by 2020, and this likely to experience abuse, but this differed according to figure will double by 2040.20 This substantial increase in the type of abuse.7 Older adults with cognitive and func- the older populace, along with rapid urbanisation and tional impairment, dementia, disabilities and other changing family structures, will bring about greater chal- chronic health problems are particularly at risk of abuse lenges to the provision of care for the older person. As 10–12 due to increased dependence on caregivers. in many Asian countries, most older Malaysians rely http://bmjopen.bmj.com/ Caregivers’ psychiatric disorders, previous history of vic- heavily on their children for care and financial support. timisation, poor social support, substance use, high This is especially customary among elders living in rural levels of hostility, and their dependence on the victim areas, where there is an inadequate pension and social for accommodation as well as financially, also appear to support system, and limited access to medical care, as – be associated with elder mistreatment.11 13 15 Others compared to what is enjoyed by their more affluent reported shared living arrangement, social isolation, urban counterparts. The rural–urban migration of loneliness and caregiver strain as risk factors.13 16 youths in search of better job opportunities has also ‘ ’ ’ The mapping of elder mistreatment occurrences, greatly weakened the family s perceived obligation of on September 23, 2021 by guest. Protected copyright. and understanding of their risk factors and health con- caring for their elder members. The lack of a social sequences across cultures, have been significantly safety net coupled with heavy reliance on their children limited by the narrow geographical base of current expose the rural older population to a greater likelihood research, with most being conducted in economically of abuse and exploitation. developed countries. This distinct gap in the existing lit- A number of countries have enacted statutes for erature is reflected by the paucity of robust studies on reporting elder mistreatment and protection of the elder mistreatment in low and middle-income develop- elderly. There is no specific legislation to address elder ing nations. The ‘identified’ risk factors may be less per- mistreatment in Malaysia to date. The provision of the tinent or not fully applicable to the more conservative Domestic Violence Act 1994 is relatively non-specific; it Asian cultures, considering the deeply ingrained con- covers all family members including older adults within cepts of family ties and filial piety. Wu et al (2012) found a household.21 22 Official or authenticated data on elder that many Chinese viewed elder mistreatment as non- mistreatment are also unavailable to gauge the true existent in their community owing to the traditional extent of the problem. While the Malaysian government values and cultural norms that emphasise respect of and has demonstrated commitment to protect the rights and provision of care for parents by adult children. On the welfare of the elderly through a number of initiatives, contrary, their study findings showed that at least there remains little information from well-designed one-third of the interviewed older adults reported community-based research into the multiple dimensions experiencing some forms of abuse, suggesting the of elder mistreatment. To address this need, the

2 Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from MAlaysian Elder miSTreatment pROject (MAESTRO) ecological approach, the framework guided the develop- study was designed to estimate the prevalence and inci- ment of the study design and selection of the range of dence of elder mistreatment, describe the characteristics potential determinants and outcomes of elder mistreat- of perpetrators, identify individual, familial, community ment. The central thesis of this framework is the and social determinants of elder mistreatment and emphasis on the interaction and dynamics of multiple assess its health consequences among a representative determinants at the various ecological levels on which sample of older Malaysian adults. victims and perpetrators are embedded: individual, rela- tionship, community and sociocultural. In this study, we Objective of the study and conceptual framework examined both the risk factors for and protective factors The overarching aims of the study are to estimate the against elder mistreatment, along with their outcomes. prevalence and incidence of elder mistreatment, its sub- Figure 1 illustrates the conceptual framework of this types and multiple types of abuse; to identify the extent study. to which elder mistreatment is predicted by individual, familial, community and social determinants; and to determine the consequences of elder mistreatment in METHODS AND ANALYSIS relation to injuries, physical health and function, mental Study design health, health utilisation and mortality. This is a 5-year prospective longitudinal cohort study This project employed a conceptual framework among community-dwelling older adults aged 60 years adapted and modified from the WHO. Applying the and older, and their caregivers, residing in the district of

Figure 1 Conceptual framework of this study. http://bmjopen.bmj.com/ on September 23, 2021 by guest. Protected copyright.

Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 3 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from Kuala Pilah in the state of Negeri Sembilan, Malaysia. It Table 1 Eligibility criteria for the MAESTRO cohort study started in November 2013 and is currently ongoing. The study will be executed in two phases. Phase I comprises Inclusion criteria Exclusion criteria a cross-sectional study (baseline) and phase II is a ▸ Older persons aged ▸ Elderly residing in long-term cohort follow-up study across a 5-year period. 60 years or more care institutions Participants will be followed up at the third and fifth ▸ Community dwelling ▸ Elders unable to years. elders living at home communicate with the alone or with family or interviewers, eg, Sample selection and study participants relatives for the past post-stroke, mentally 12 months disabled or severely A two-stage cluster sampling was employed to select ▸ fi Malaysian nationals cognitively impaired study subjects. In the rst stage, one representative dis- ▸ Elders able to individuals trict, Kuala Pilah, was randomly selected from seven dis- communicate with the ▸ Non-resident in the area in tricts available in the state of Negeri Sembilan. Negeri interviewers the previous 12 months or Sembilan lies in central Peninsular Malaysia, about foreign nationals 100 km away from the capital city, Kuala Lumpur. The MAESTRO, MAlaysian Elder miSTreatment pROject cohort study. state’s population stands at 1.02 million, according to the national census. Compared to other districts, Kuala Pilah has the largest population of older adults in the community via the Village Safety and Development state. In the second stage, the Malaysian Department of Committee (VSDC). The VSDC acted as mediator, assist- Statistics (DoS) provided a comprehensive sampling ing researchers in identifying selected house addresses frame based on the most recent national census con- and informing local residents about the possible visit by ducted in 2010. Of 254 enumeration blocks (EBs) within the research team. Kuala Pilah, 156 EBs were randomly chosen. Each EB contained a minimum of 15% of older individuals. A computer-generated list of households was then pro- Sample size calculation vided, from which 16–20 households were randomly Sample size calculation was estimated using the selected from each EB. Maps of the local terrain pro- OpenEpi programme for cohort study. The minimum vided by the DoS were used to locate selected house- detectable risk ratio for primary outcome and mortality among those exposed to abuse, and those reporting no holds. The Malaysian Department of Statistics performs 23 the national census every 10 years, and retains the most abuse, was estimated to be around 2.28. The propor- tion of abuse was estimated to be on average 15%, based comprehensive and up-to-date information on the popu- 524 20 on a previous study and systematic review. Power and lation demographics. This method of complex sam- http://bmjopen.bmj.com/ α pling design ensured adequate coverage of older adults a two-sided were set a priori at 80% and 0.05, respect- in all parts of the district, yielding a heterogeneous rep- ively. Design effect due to complex sampling was esti- resentative sample from the target population. mated to be 2.0. To account for loss to follow-up, the fl Respondents were interviewed at home by trained per- sample size was in ated by 30%. The calculated sample sonnel, using a structured questionnaire. One older size required was 2418. person and one caregiver per household were inter- viewed. For elder abuse screening questions, participants Assessment and operational definitions

were interviewed in private without the presence of Elder mistreatment on September 23, 2021 by guest. Protected copyright. family members, while their caregivers were interviewed The primary outcome of interest is elder mistreatment. separately. Older persons refer to those aged 60 years and more, in Table 1 presents the eligibility criteria for participant line with the definition established by the United selection in this study. Information gathered from Nations World Assembly on Ageing, Vienna, 1982, and respondents and caregivers included sociodemographic, adopted by Malaysia. The definition of elder mistreat- physical health, medical history, nutrition, psychological ment was based on the WHO framework on violence: status, daily activities, health utilisation and social any abuse and neglect of persons aged 60 years and support and network. older by a caregiver or another person in a relationship involving an expectation of trust. Five types of abuse Recruitment and follow-up interviews were measured, including physical, sexual, financial, psy- Follow-up interviews will be performed on the third and chological and neglect. In this study, we identified per- fifth years. Participants will be tracked for at least petrators as caregivers or person(s) whom the older 5 years, or until death. To reduce losses to follow-up, a adults knew, or with whom they had a relationship. brief telephone interview will be conducted a year after An extensive review of the literature was conducted,5 the follow-up interview to note any change of residence and we adapted and revised a comprehensive question- and health status in the past year. To gain rapport and naire developed by Naughton et al.25 Permission was ensure a high response rate from selected participants, sought from the national Irish prevalence study research the research team engaged actively with the local team to use the instrument. This instrument was

4 Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from originally adapted from the revised Conflict Tactic Scale, the elderly, on item content, readability, clarity, item which was widely used.5 In our study, however, some interpretation and acceptability of survey procedures. items in the questionnaire were modified in order to There was general consensus that the proposed abuse contextualise elder mistreatment within our cultural questions measured the concepts being assessed. Lack of setting. These items were behaviour-specific, referring to additional items considered basic necessities for an the types of incidents that respondents may perceive as older adult, such as access to food, clean clothing, medi- abusive. Behaviour-specific questions help cue respon- cation or treatment and shelter, was included in the dents to think of relevant incidents and respond accord- final instrument. The instrument was subsequently pre- ingly, thereby increasing the reliability and consistency tested with 350 elder respondents living in a government of the reported incidents. The elderly were asked if they subsidised residential area. The results of the reliability had ever experienced at least one incident of abuse, (1) analysis suggest all abuse measures show fair to good since turning 60 years old; or (2) in the past 12 months, internal consistency. The overall Cronbach’s α for finan- by a caregiver or somebody with whom they had a rela- cial abuse, psychological abuse, physical abuse, sexual tionship of trust. To further ensure cultural appropriate- abuse and neglect were 0.728, 0.730, 0.685, 0.642 and ness, applicability and usefulness of the adapted abuse 0.709, respectively. All abuse domains were significantly measures to the targeted population, the research instru- correlated with coefficients reported ranging from 0.10 ment was pretested and reviewed by a panel of experts, to 0.86. and used in face-to-face interviews with the elderly. The The list of acts is presented in table 2. Physical, sexual measures were first translated from English to Malay lan- and financial abuse are operationalised as any episode guage, using the forward-backward translation tech- of elder mistreatment reported by older individuals nique, a standard procedure for questionnaire during the reference period and perpetrated by a care- translation.26 The instrument underwent a review by a giver or a person in a position of trust. Subsequent ques- group of local experts in public health, social work and tions gathered additional information on the frequency services, as well as by physicians and geriatricians. of events, perpetrators’ characteristics, perceived serious- Feedback was also sought from in-depth interviews with ness, injuries sustained, respondents’ disclosure (or lack

Table 2 Operational definitions for elder mistreatment Type of mistreatment Definition Physical ▸ Slapped, pushed, grabbed or shoved ▸ Kicked, bitten or hit with a fist or object http://bmjopen.bmj.com/ ▸ Inappropriately restrained in any way, eg, locked in room/house, tied to a chair, tied to a bed, chained ▸ Given too much medicine/drugs to control behaviour ▸ Burned or scalded ▸ Threatened or assaulted with a knife, gun or other weapon Financial ▸ Stole elderly’s money, possessions, property or documents ▸ Purposely prevented elderly from accessing their money, possessions, property, land or important documents ▸ Manipulated or forced elderly into giving money or handing over property, land, possessions or important on September 23, 2021 by guest. Protected copyright. documents ▸ Forced or manipulated elderly into altering their will or any other financial document ▸ Deliberately forged or signed cheques or other financial instruments without elderly’s permission ▸ Misused the power of attorney given by the elderly or forced or manipulated the elderly into giving him/her power of attorney Sexual ▸ Sexually harassed or talked in a way that made the elderly uncomfortable ▸ Touched or tried to touch in a sexual way against the elderly’s will ▸ Forced or attempted to force sexual intercourse against the elderly’s will Psychological ▸ Cursed, shouted or insulted ▸ Humiliated, belittled or embarrassed ▸ Repeatedly ignored ▸ Threatened verbally ▸ Prohibited family members, friends or doctor/nurse from visiting or vice versa Neglect ▸ No access to medical treatment ▸ Not enough nutritional food ▸ No clean clothing ▸ No adequate shelter, clean and safe living conditions ▸ Failure to provide the elderly with support for basic activities of daily living such as feeding and help with walking, climbing stairs, going to the toilet, dressing and bathing

Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 5 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from of), the person to whom disclosure was made and Respondents will be asked whether they have experi- ensuing action following disclosure. enced the symptoms described during the past week, Similar to the work by Naughton et al, and supported using the yes/no format. A score of >6 suggests by literature elsewhere,7 psychological abuse is defined symptoms of depression. The GDS-15 has been as 10 or more incidents of abuse. When the frequency is validated among the Malay elderly population and <10, the abuse is considered to have happened if the found to be reliable, with Cronbach’s α=0.84, test–retest episode(s) is perceived by the respondent as having a reliability=0.84 and concurrent validity with the serious impact. There is no universal or standard defin- Montgomery–Asberg Depression Rating Scale ition of neglect. It varies considerably across countries (Spearman’s r 0.68).39 and cultures. When adopting the definition of neglect, Sleep disturbance is measured by the Pittsburgh Sleep we took into consideration the Malaysian context and Quality Index (PSQI), a validated 19-item questionnaire cultural ethos, in line with the National Policy on that is used to study the quality and pattern of sleep Elderly, which emphasise older adults’ rights to protec- among older adults. Seven domains of sleep are cap- tion, welfare and dignity. In this study, neglect is defined tured by this instrument: subjective sleep quality, sleep as a caregiver’s failure to meet an elder’s basic needs latency, sleep duration, habitual sleep efficiency, sleep such as access to medical treatment, adequate nutri- disturbances, use of sleeping medications and daytime tional food, clean clothing, proper shelter and clean dysfunction over the past month. Respondents are asked and safe living conditions, or the failure of a caregiver to to rate each of these seven component on a scale of 0–3, provide assistance to an elder for basic and instrumental with three reflecting the negative extreme on the Likert activities of daily living. These include feeding, walking, Scale. A score of 5 or more indicates ‘poor sleep’ or using the toilet, dressing and bathing, preparing food, sleep disturbance. The PSQI has a Cronbach’s α of 0.83 taking medication and so on. for all its seven components, and has been said to show high validity and reliability when used among older Risk and protective determinants of elder mistreatment adult populations across countries.40 Data will be collected from various sources including self-reports by respondents and their caregivers, and Mortality physical and clinical assessment. Table 3 shows the risk Data on mortality are obtained by regular contact with and protective determinants of elder mistreatment mea- respondents’ family members and caregivers. Reported sured at different levels of the framework. deaths will be crosschecked with the National Registration Department database, which provides add- Health consequences of elder abuse and neglect itional information such as the date and cause of death.

As delineated by our conceptual framework, consequences http://bmjopen.bmj.com/ of elder mistreatment are categorised into quality of life, Physical health/function mental health, physical health/function and mortality. Gait speed will be quantified as an indicator of physical This study will therefore explore four scopes of outcomes: function. In gait speed assessment, respondents are quality of life, mortality, morbidity and health utilisation. asked to walk for 4 m with or without walking aids, and For morbidity, physical function (gait speed) and mental the time taken is recorded. Each participant undergoes health (depression and sleep disturbance) will be mea- the walking test two times, and the best score (time) is sured, whereas health utilisation is represented by hospital- taken. Walking speed has been reported to be a good

isation rate and frequency of health visits. predictor of adverse outcomes in community-dwelling on September 23, 2021 by guest. Protected copyright. older people41 and was associated with survival of older Quality of life individuals.42 The Short Form Health Survey SF-12 is utilised to measure health-related quality of life in this study. The Hospitalisation and health visit SF-12 has both physical and mental component Hospitalisation is defined as being admitted at any hos- summary scales, which comprise eight concepts: physical pital (public or private) for at least 24 hours in the past functioning, role limitations due to physical health pro- 12 months. blems, bodily pain, general health, vitality (energy/ Hospitalisation and frequency of health visits are deter- fatigue), social functioning, and role limitations due to mined by two questions: emotional problems and mental health. Each item has a 1. ‘In the past 12 months, did you ever visit any of the rating scale of 0–4. The Malay version of Short Form following health facilities?’ Health Survey (SF-12) has been validated38 and will be 2. ‘How many times did you visit?’ used in this study. The answer options include ‘private clinic’, ‘govern- ment clinic’, ‘social service officer’, ‘outpatient depart- Mental health ment at a hospital’, ‘emergency department’ and Two variables will be measured in this sphere: depres- ‘admitted for at least 24 hours’. Frequency options are sion and sleep disturbance. Depression will be assessed given as ‘never’, ‘once’, ‘2-3 times’, ‘4 times or more’, using the 15-item Geriatric Depression Scale (GDS-15). ‘1-2 times/week’ and ‘every day’.

6 Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from

Table 3 Matrix of determinants and its measurement Determinants Measurement Individual (elderly) Age The age will be estimated based on the date of birth as recorded in the Malaysian National Registration Identification Card (NRIC). Where necessary, verification with other documents such as driving license, pension book or other government documents is performed Sex Male or female as recorded in the NRIC Ethnicity Ethnic status will be collected as recorded in the NRIC, mainly classified as Bumiputra Malay, Bumiputra non-Malay, Chinese, Indian or other Marital status Based on current marital status as reported by the elderly, which will be categorised into married, single, divorced or widowed Living arrangement Living arrangement to be classified as own home, or other, which includes children’s home or relatives’ or other persons’ home Education Elderly’s level of formal schooling; categorised as none, primary, secondary or higher Income Elderly financial status will be measured by asking the amount of funding received every month in Ringgit Malaysia. Various sources of support are recorded, such as current monthly income if working, monthly pension if pensionable, financial aid received through government, NGOs or official sources or estimated amount, if any, received from family members Current employment status Elderly will be asked if they are currently employed in any capacity Comorbidities (chronic diseases Elderly will be asked if they have been diagnosed by a physician for any chronic illness, which includes high-blood pressure, heart problems or blood circulation problems, stroke, joint pains or arthritis, Parkinson’s disease, diabetes, breathing problems (asthma, lung infections) and cancer Physical disability The Katz Index of Independence in Activities of Daily Living (Katz ADL), and Lawton Instrumental Activities of Daily Living Scale (Lawton IADL), are used to assess an older adult’s ability to independently perform self-care and maintenance. Katz activity of daily living has six items scored on a 3-point response scale (independent, some assistance or dependent). Higher score indicates elderly’s independence.27 Lawton IADL has eight items that assess independent living skills that are considered more complex than basic ADL. A summary score ranges from 0 (dependent) to eight (independent)28 Physical function Two aspects of physical function of the elderly will be measured. http://bmjopen.bmj.com/ 1. Walking speed—average of two readings for 2. 4m walking test in seconds 2. Muscle strength—average of two readings per hand for grip strength measured by dynamometer in kPa Cognitive impairment The Elderly Cognitive Assessment Questionnaire is a quantitative assessment of cognitive impairment among elderly people. A score lower than 6 is categorised as being cognitively impaired29 Individual (caregiver) Caregiver demographic Caregiver’s age, sex, education, employment and household income level will be on September 23, 2021 by guest. Protected copyright. collected. Education, employment and income will be used as indicators to determine the socioeconomic status of the caregiver Caregiver’s substance abuse Two items to measure caregivers’ substance use including of alcohol and drugs will be included Caregiver’s mental illness or The elderly will be asked if their caregiver has any form of mental illness or presents aggressive behaviour aggressive behaviour Caregiver caregiving and coping Caregiver reactive assessment with 24 items designed to assess specific aspects of skills the caregiving situation, including both negative and positive dimensions of caregiving reactions, will be conducted30 Caregiver’s prior history of abuse Caregivers will be asked if they had, while growing up, experienced any form of child abuse or domestic violence Relationship Caregiver–elderly relationship The quality of the caregiver–care recipient relationship will be assessed through measurements of the quality of the current relationship in relation to general closeness, communication, similarity of views about life and degree of getting along It has four items on a 4-point Likert scale response31 Living arrangement Current living arrangement will be categorised as own home, or other, which includes children’s home, relative’s or other person’s home Continued

Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 7 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from

Table 3 Continued Determinants Measurement Caregiver depression Depression Anxiety Stress scale is 21 item self-report scale designed to measure the negative emotional states of depression, anxiety and stress experienced by the caregiver32 Caregiver burden Brief COPE is a brief measure with 28 items assessing caregiver’s burden and coping mechanism. Higher scores indicate ineffective coping mechanism33 Dependency of elderly or caregiver Two items that measure elderly’s fear of abandonment, loneliness and tolerance towards aggressive behaviour Religious commitment A salience in religious commitment scale is used to measure the extent to which elderly and their caregiver consider their religious beliefs to be important both in general and in decision-making. The scale has only three items on a 4-point Likert-type scale. Total scores range from 3 to 1134 Community and societal Social support The Duke Social Support Index has 11 items that measure social support received by the elderly. The higher the score, the greater the support perceived by the elderly35 Social isolation The Lubben Social Network Scale (LSNS-6) is used to screen for social isolation among community-dwelling elders. A score of 11 or less on the LSNS-6 indicates social isolation36 Social cohesion The social cohesion and trust domain from the Collective Efficacy Scale is utilised. It is a 5-item Likert-type scale asking how strongly participants agreed with the statements regarding people around their neighbourhood37

Statistical analysis plan analysis and comparison between those abused and not Data entry and management will be conducted using the abused. The relationship between elder abuse, and SPSS V.21.0 software program. The double entry method annual rate of hospitalisation and health visit frequency will be performed using standardised coding and label- will be calculated using Poisson regression models. ling. After the fieldwork, all questionnaires will be checked Complex sampling regression analysis will be performed by a second person to minimise missing data. Any missing taking the sample design into account. This procedure data will be investigated and, where possible, the respond- will estimate variances by taking into account the design

ent will be contacted via telephone. Information collected used to select the sample, which, in this case, is a http://bmjopen.bmj.com/ will be kept in a locked space to which only designated per- probability disproportional sample without replacement. sonnel have access. Secondary data (mortality) will be col- A p value of <0.05 will be considered statistically signifi- lected from the national registry. cant and 95% CI will be reported where appropriate. Data will be presented as mean±SDs, percentages, ORs At subsequent follow-ups, respondents and non- (for cross-sectional analysis) or relative risks (for longitu- respondents will be compared with respect to character- dinal analysis). The prevalence (or incidence) of elder istics such as sex, age, educational level and health abuse, its subtypes and related factors will be estimated status, to detect any systematic differences between these

according to age and gender. two groups. on September 23, 2021 by guest. Protected copyright. Outcomes will include mortality, quality of life, mortal- ity, physical function (walking speed), mental health (depression and sleep disturbance) and health utilisa- ETHICAL ASPECTS tion (hospitalisation rate and frequency of health visit). Written permission from the relevant authorities at the Normality of the data sets will be tested for parametric community level was also obtained. Respondents’ tests. Student’s t test or analysis of variance will be used written, informed consent was undertaken prior to the to compare variables among the different groups, for baseline interview. The participation of both, older continuous data. For comparison of proportions, χ2 ana- adults and their caregivers was voluntary. Any informa- lysis will be performed. To investigate the associations tion provided by the respondents to the interviewers between outcomes and studied parameters, multivariate remains confidential and anonymous. The purpose, risk analysis will be employed. Possible confounding factors and benefits were explained making clear to the respon- found in univariate analysis will be adjusted in multivari- dents that they can opt out or withdraw at any time ate analysis. The relationship between various risk factors without affecting their rights to access to medical care or and abuse estimates are subjected to logistic regression social welfare services provided in the public facilities. models. Cox proportional hazard regression models will be performed to predict the effect of abuse on time to Safety protocol each outcome, for example, risk of mortality. A survival Participating in research involving sensitive topics may curve will be constructed to enable ‘time-to-event’ have an impact on older adults’ and the interviewers’

8 Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from safety and well-being. Disclosure of abuse or identifica- difficulties faced during fieldwork, and to identify cases tion of abuse victims may worsen the existing problem requiring referrals to the district health or social welfare through either retaliation by the perpetrator or further offices. During the data collection period, debriefing ses- isolation of the victims. Other ethical dilemmas include sions allowing peer sharing and exchanging of experi- the obligation of the researcher to take the right action ences were conducted for the interviewers every week by on identifying abuse victims, and regarding the manner two counsellors in the research team. in which questions on abuse are being asked, due to the sensitive nature of this subject. To minimise possible threats and risks, one older person and one caregiver DISCUSSION per household were interviewed, and the interviews were The MAESTRO cohort study aims at estimating the conducted on separate occasions. Interviews were held prevalence and incidence of elder mistreatment, identi- in private and without the presence of family members, fying its risk factors and characteristics of perpetrators, caregivers or a third person. Appointments were made and assessing mortality and its health consequences with selected respondents via telephone prior to the among community-dwelling older Malaysians. This study interviews, to ensure privacy and to prevent imposters is a pioneering prospective cohort study that explores from gaining access to older persons’ residences. The the issue of elder mistreatment, particularly among interviewers were assigned in pairs to visit each selected South East Asian countries. household, a strategy undertaken to ensure the safety of There are several strengths in this study. First, the pro- team members. The research team informed the local spective study design with a long follow-up period is police stations and local residential committees about appropriate to determine causality between predicted the data collection. The potential respondents were able outcomes and exposure (abuse and neglect). We focus to verify the authenticity of the survey with the police, not only on epidemiological characteristics of elder mis- residential committees or health district office. treatment, but also on the relationship between determi- All respondents were provided with various hotline nants at different levels and elder mistreatment. This numbers to report abuse including hotlines dedicated to study thus is able to evaluate the impact of social envir- calls on domestic violence and child abuse, such as onment and elucidate other risk factors of abuse. Talian Nur 15999 and Teledera toll-free hotline 1-- Second, we are able to follow-up a group of respondents 800-88-3040, and given the contact numbers of social who report having experienced abuse, and assess a workers and counsellors available in the district. In the range of outcomes including mortality, morbidity and event of disclosure of abuse during the interview, health utilisation. Active recruitment and face-to-face respondents would be advised to discuss strategies to interviews ensured highly personalised contact with

deal with this problem with family members or a trusted respondents and increased the response rate. Of the http://bmjopen.bmj.com/ person. They would also be referred to the social worker 2496 elderly respondents listed in the sampling frame or health officer of the district if circumstances were used for the survey, our preliminary analysis estimated judged to be life-threatening, or if direct requests were that 2118 older adults participated and were interviewed made. Respondents’ rights and autonomy were observed for the baseline study, giving a high response rate of during the entire research process. 84.9%. Approximately 378 older adults did not partici- Prior to the conduct of the study, a 2-day training pate in the study. Reasons for non-participation were: session was held for all interviewers, to familiarise them refusal (33%), living elsewhere/not at home at the time

with the study objectives, methodology and research of study (31%), ineligibility (11%), death (9%) and on September 23, 2021 by guest. Protected copyright. safety protocol. The topics covered included general others (16%). Face-to face interviews were useful to issues on the elderly and the ageing process, types of obtain more accurate information as older respondents abuse and neglect, interviewing techniques, ethics of who had difficulty understanding could directly ask the conducting interviews on sensitive topics, communica- interviewers for explanation. This is a practical approach tion skills and stress management. The session also particularly in settings where large proportions of the included role play, mock interviews, group discussions older population are still illiterate or have minimal edu- and learning the appropriate responses when handling cation. Using the census provided by the Malaysian difficult situations such as an elder respondent turning Department of Statistics as our sampling frame, the hostile, getting upset or crying during the interview. MAESTRO study subjects can be considered representa- A medical doctor and two counsellors who were part of tive of the older Malaysian rural population. the research team provided emotional support when One major limitation of this study is the locality in necessary. which data were collected. As the focus is on rural For interviewers, it is important to be able to talk with community-dwelling older adults in the district of Kuala other team members about the feelings evoked from the Pilah, generalisability of our study findings to the urban interview process. The process can be emotionally elderly populace could be an issue. Results from this demanding. At the end of each survey day, regular meet- study, however, will provide robust evidence and ings were held between the interviewers and researcher reinforce the need for programmes to raise awareness, to check for questionnaire completeness, to discuss any and interventions at the appropriate level to address

Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 9 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from elder abuse and neglect in Malaysia. Another limitation role playing, depicted the various real-life scenarios of our study is the absence of measurement for demen- encountered during their fieldwork. The counsellors dis- tia status as a risk factor or covariate. Also, older adults cussed the groups’ collective experiences for everyone’s living in care homes, post stroke or with severe cognitive benefit, drawing on constructivist debriefing methods impairment, who are most at risk of elder mistreatment, used in counselling.43 These sessions were helpful to were excluded in this study, which is likely to underesti- reduce burden, stress and anxiety accumulated during mate the magnitude of elder mistreatment. This is a the interview process, and also improved team dynamics double-edged sword situation, balancing between the and productivity in our study. need for respondents to fully understand and respond To increase respondents’ privacy and protection, we to questions accurately, or exclusion of high-risk groups asked them whether they were in a place where they that might add to underestimation of the elder mistreat- could talk alone or in private. It was important to ment problem. We included measures of cognitive func- conduct the interviews in a safe and comfortable envir- tioning such as ECAQ to gauge the respondents’ onment or when the respondents were ready to be inter- cognitive capacity to consent to participation and ability viewed. The strategy to assign two interviewers per to provide information as accurately as possible. household was effective, with one person interviewing On completing the baseline assessment, we gathered a the elder, the other could engage with family members number of lessons that would be useful to other if present, so as to allow more privacy between the inter- researchers conducting similar studies. Active engage- viewer and the elderly respondent. While asking ques- ment of the local community is extremely important. In tions on abuse/neglect, the respondent was interviewed rural areas where the social fabric is largely intact and alone without the presence of any family members or dynamics of social structure are different from those of caregivers. There were no adverse events and no com- the urban community, getting the local leaders or influ- plaints reported during the conduct of the baseline ential figures of the locality into the picture will facilitate assessment study, hence concern that the victims’ poten- rapport-building with residents and smoothen data col- tial risk of subsequent abuse due to their participation lection. It is crucial that the research team members was minimal. Although the interviews themselves might listen to the local people’s needs and suggestions, under- have added temporary suffering to the respondents stand their cultural norms and expectations, and always while recounting their experiences, it was also an oppor- attempt to create a win-win situation, throughout the tunity for them to deal with their painful experiences research process. Employing local people as part of and facilitate the healing and recovery process. the research team can be an effective strategy to win the Adequate information on the local resources, health- trust of the local community, as the presence of familiar care and social support system is crucial to identify the ‘ ’ faces will make the elderly feel at home rather than channels through which abuse victims can receive help. http://bmjopen.bmj.com/ viewing the researchers as outsiders who should be We collaborated with the local health district office, and treated with suspicion. In our case, we got several engaged local health personnel and social workers, in authoritative bodies involved: the local leaders, local order to facilitate referral of abuse victims for further police force, local health workers, district office, Ministry assessment and assistance. The research team referred of Health and Ministry of Rural and Regional 28 cases to the State Social Welfare Department or Development. Engagement of multiple and cross- Health Department for further assessment and follow-up sectoral partners not only ensures researchers’ safety but on the interviewees’ consent. However, being a relatively

increases accountability and transparency of the research new issue in the healthcare system, limitations were inev- on September 23, 2021 by guest. Protected copyright. process. itable: we were uncertain of how fast the referral process With regard to sensitive subjects such as abuse and worked, and whether follow-up was conducted accord- neglect, an ethical dilemma might arise as to what the ingly. Lack of expertise was another overwhelming issue. subsequent action by the interviewer on identifying Health workers comprised mainly medical officers with abuse victims should be. Indifference or lack of response no official training in geriatrics or gerontology. by the researcher may create misunderstanding among Consequently, the research team in collaboration with the local elderly, apart from going against the principles the State Health Department provided a series of classes of ethics in research. Researchers and interviewers on detection and management of elder mistreatment, involved in researching sensitive topics should be aware for all the district medical officers and nurses working in of their own behaviour and the effects of the study on public health facilities. the participants. The research process itself might affect Incentives are without doubt an effective strategy to the researchers’ values, emotions and standpoints. encourage participation in a cohort study. We provided Researchers may need support or supervision for them- both pecuniary and non-pecuniary inducements at differ- selves while listening to heart wrenching experiences of ent phases of baseline assessment. Our observation was older adults or dealing with sensitive issues concerning that, despite a pecuniary incentive being more attractive, family life. The interviewers shared their thoughts and it has a number of drawbacks. Collecting data in a rural feelings on the project, and their inner personal reflec- setting forced our team members to carry huge amounts tions on their behaviours and attitudes, and, through of cash from one place to the other, which was highly

10 Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-011057 on 25 May 2016. Downloaded from risky and unfeasible. There were attempts by some Provenance and peer review Not commissioned; externally peer reviewed. respondents to profit from what was offered, thereby cre- Open Access This is an Open Access article distributed in accordance with ating ill feeling and resentment. Non-monetary incentives the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, in the form of small gifts and souvenirs were found to be which permits others to distribute, remix, adapt, build upon this work non- more reasonable and practical. commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. 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12 Choo WY, et al. BMJ Open 2016;6:e011057. doi:10.1136/bmjopen-2016-011057