Study Protocol - Computer Assisted Enquiry for Experiences of Domestic Abuse in Health Care Setting April 2010 1. Introduction The term Gender-Based Violence (GBV) describes violence that is directed against a woman because she is a woman or violence that affects women disproportionately. It includes acts that inflict physical, mental or sexual harm or suffering, threats of such acts, coercion or other deprivation of liberty (United Nations 1992). Domestic abuse is one form of gender-based violence. The Scottish Government defines domestic abuse as “perpetrated by partners or ex-partners [which] can include physical abuse (assault and physical attack including a range of behaviour), sexual abuse (acts which degrade and humiliate women and are perpetrated against will, including rape) and mental and emotional abuse (such as threats, verbal abuse, racial abuse, withholding money and other types of controlling behaviour such as isolation from family and friends). The consequences of domestic abuse are well documented and include substantial morbidity and mortality, physical and psychological health problems (Krug et al 2002). It is a significant public health problem (WHO). In 2008 the Scottish Government introduced the National Domestic Abuse Delivery Plan for Children and Young People as part of a strategy to address this. A key component of delivery plan is the introduction of routine enquiry of domestic abuse in healthcare settings. The National Gender-based Violence and Health Programme was created to progress this work and aims to improve identification of and responses to gender-based violence across NHS Scotland. Routine enquiry will be implemented in priority healthcare settings (maternity, substance misuse, mental health, sexual health, emergency medicine and community nursing). Routine enquiry means asking every new person presenting to services specific questions about experiences of abuse. As health care workers are often the first or only professional contact that people experiencing abuse have, they can offer a lifeline to safety (DoH 2005) and have a responsibility and opportunity to act (Gunter 2007, Campbell 2003, Sharps et al 2001). Routine enquiry provides an opportunity for women to disclose experiences of abuse and access additional supports to address the consequences of abuse (Feder et al 2009, Seng 2008). Disclosure enables health care workers to incorporate the impact of abuse in making a diagnosis and creating treatment and care plans (Zink 2004). However, research has shown that even when women choose not to disclose the act of being asked can in itself be beneficial (Leibshutz 2008). Routine enquiry reduces stigma around the issue of abuse, informs service users of health consequences of abuse and the role that health care workers can play in responding to this (Stenson 2005, Chang et al 2004, Zink et al 2004). Routine enquiry may also help some women to identify the presence of abuse in their lives (Ulrich 2006, Campbell 2004). Routinely enquiry is acceptable to service users (Feder et al 2009, Gunter 2007, McDonnell 2006) and has been shown to increase their satisfaction with services (Leibshutz 2008, Rodriguez 1996). Routine enquiry commonly takes place during face to face assessment interviews. However, computer assisted routine enquiry has also been shown to be acceptable to service users and to facilitate disclosure to health care workers (Ahmad et al 2009, Feder et al 2009, Renker 2007, Trautman et al 2007, Rhodes et al 2006, Bacchus et al 2004, Gerbert et al 1999.) Computer assisted routine enquiry (CARE) provides anonymity for respondents. This could have particular significance in rural areas where service users have concerns about confidentiality following disclosures of abuse (McCarry & Williamson 2009). 1 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse As with face to face enquiry if service users choose not to share information with healthcare workers their experience of abuse and risk of further abuse cannot be incorporated into care planning, however, computer assisted routine enquiry can still fulfil the role of raising awareness, reducing stigma and promoting the role of health professionals in responding to abuse. 2. Computer Assisted Routine Enquiry The Computer Assisted Routine Enquiry (CARE) programme has been developed by Scotland’s Health on the Web (SHOW) Development Team and the National GBV & Health Team. The full programme content is available in appendix 1. There are 6 sections and the programme should take no longer than 10 minutes to complete. 1)Introduction to programme and study 2) Learning to use touch screen computer 3) General questions (e.g. age, children etc) 4) Routine enquiry for domestic abuse 5) Questions about abuse and information (This section is only for women who disclose in section 4) 6) Evaluation of CARE The programme is designed to be as user friendly and accessible as possible. It will be delivered through a touch screen tablet and will incorporate video clips and audio stream. Each response option will be highlighted in turn to help users select the most appropriate response for them. Women will also have the option to exit the programme at any time and move on past questions which they do not wish to answer. It is essential that women are left in private to complete the CARE Programme and therefore, CARE is not appropriate for use in the service user’s home. 3. Aims of this study This study compares the effectiveness of computer assisted routine enquiry of domestic abuse in identifying service users’ experience of abuse and facilitating disclosure to healthcare workers with routine in person, face to face enquiry. 4. Research questions Does computer assisted enquiry about domestic abuse overcome barriers to disclosure by providing anonymity for respondents in rural and urban areas? Does computer assisted enquiry about domestic abuse facilitate disclosure to health care workers? Is computer assisted routine enquiry of domestic abuse acceptable to service users in Scotland? What are the characteristics of women who choose to disclose following computer assisted enquiry and / or health care workers? (Age, ethnicity, severity of abuse) 5. Methods 5.1 Study Design This is an experimental multi site study. Participants will be randomly allocated to two groups: usual face to face routine enquiry (usual care group) or computer assisted routine enquiry (CARE Group). An experimental design enables comparison between rates of disclosure in usual care and CARE groups and random allocation will reduce selection bias. 2 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse 5.2 Study sites This study builds on the work undertaken within each health board area as part of the National GBV & Health Programme. Implementation of routine enquiry is incremental and each Board has identified initial sites within maternity and mental health services to implement routine enquiry with all new patients. Rural and urban study sites have been selected to identify potential differences between these settings. The following sites have been identified: Urban Ayrshire & Arran Fife Highland Lothian Orkney Tayside Rural Maternity Mental Health X X X X X X Maternity X X X Mental Health X X X X X X X 5.3 Study sample An opportunist sample will be drawn from maternity and mental health services where routine face to face enquiry of domestic abuse has already been introduced. In rural areas all new female patients will be invited to participate. Only female patients will be included in this study because at present, the evidence base does not provide clear direction on helpful responses for men who experience domestic abuse. However, the study would not preclude workers from asking male service users about domestic abuse if they thought it appropriate as in usual practice. In urban areas, researcher resources may limit the ability to invite all new female patients to participate. A random sample of service users will be selected from clinic lists and invited to participate in this instance. Sample sizes are dependant to some extent on the support and participation of study sites. Potentially data collection in rural areas could run for a period of months. Flexibility of data collection is essential at this stage to ensure as large a sample as possible. However, it is anticipated that a total sample of at least 200 service users will be achieved in the data collection period (50 rural maternity service users , 50 urban maternity service users, 50 rural mental health service users and 50 urban maternity service users.) As previous studies have compared computer assisted enquiry to selective enquiry or spontaneous disclosure it has not been possible to do power calculations for this study. Inclusion criteria: Participants must be female, aged 16 years or older and be considered clinically well to participate by workers. As the CARE Programme is being developed for this study are limitations on this version of the programme, requiring participants to be fluent in English language and physically able to use a mouse / touch screen computer. In addition participants must be able to either hear the accompanying audio stream and or read the accompanying subtitles. Studies in the USA (Renker et al) have developed computer assisted self interview specifically for women with disabilities and translation to other languages could be facilitated. This could be explored in 3 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse subsequent studies if CARE is recommended as part of usual care. Ethnicity and disability data will be recorded for service users participating in this study, as will reason for exclusion data. 5.4 Procedure The diagram in Appendix 2 describes the process for data collection in both “usual care” and CARE groups. Preparing study sites The research manager will visit each study site to introduce the study aims, processes and tools. At this session the workers will agree data collection time scales and plan the most efficient schedule for data collection (for example where possible arranging for all new patients to attend on one or two days per week in rural areas). Recruitment to study A healthcare worker will review all new patient records prior to clinic session commencing and identify any women where it is indicated that discussion of the study would not be appropriate due to health reasons to the fieldworker. The fieldworker will review the remaining new patient records to ensure that it is appropriate to discuss the study with the woman. If women meet the inclusion criteria the fieldworker will provide written information (Appendix 3) and inform them of the following: o All new female patients are being invited to participate. o The study is trying to find the best way to ask about things that affect our health. o Participation is entirely voluntary and the care that women receive will not be affected by their decision to participate or not. o To participate women will be required to either answer questions about routine care at the end of their visit by questionnaire which will take 5 minutes to complete or use a computer to answer questions which can take around 10 minutes to complete. If women agree to participate they will be allocated to one of these groups. o The computer programme has been designed for the public to use and you do not need to be good with computers to use it. o Responses are completely confidential unless the women choose to share information with healthcare workers. If they choose not to share information then no-one will know how they have responded. o Women will not be required to become involved in follow up or any other activity. o They can exit the study at any time. Data collection If consent is obtained the fieldworker will: o Advise the woman that if there is anything they wish to speak about following the assessment visit the fieldworker will be available in the clinic setting and contact details will be provided on the written information for women to contact the fieldworker at a later date if necessary (Appendix 3). Numbers for national services are also provided in the information packs. Unless contacted by the service user, the fieldworker will have no further contact with the woman during this visit. o Obtain written consent from woman (Appendix 4) o Allocate women to usual care or CARE group alternately. o Inform the healthcare worker whether usual care or CARE is required during this assessment and give the healthcare worker data collection form(s) for completion at the end of the assessment visit. 4 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse o If allocated to CARE group, set up ready for use. OR If women decline to participate or do not meet the inclusion criteria the fieldworker will: o Thank the woman for taking time to hear about the study. o Inform the healthcare worker that face to face routine enquiry is required during this visit as per “usual care” and give healthcare worker data collection form for completion at the end of assessment visit. No further action is required for women who decline to participate. Usual Care Group In the usual care group, face to face routine enquiry will take place. Health care workers will ask service users direct questions about domestic abuse during the assessment interview. Data collection in this group aims to identify if enquiry does routinely occur and if anonymity is an issue for patients and staff. At the end of the assessment the healthcare worker will again explain the study to women and give the following information. o All women attending the clinic for their first visit are being invited to participate. o Questions are about routine care in this area o Participation is entirely voluntary. o The care that women receive will not be affected by their decision to participate or not. o They are being asked to complete a questionnaire which will take no more than 5 minutes to complete. o Responses are completely confidential. o Women will not be required to become involved in follow up or any other activity. Women who wish to continue will be given the usual care service user data collection form (Appendix 5) and left in a private space to complete the questionnaire (either consultation room or a separate private area). Partners or others accompanying the woman will be asked to wait in the waiting area. Envelopes will be provided for the completed questionnaires and a box will be placed in the private areas for the collection of envelopes. If women decline to participate at this point the visit will conclude as usual. Healthcare worker – usual care When the consultation is completed, the healthcare worker will complete the data collection form (Appendix 6) whether women completed data collection forms or not. This will be placed in an envelope and left for collection in a box with other responses. Implications for workers providing usual care: o Health care workers will be advised by fieldworkers about the method of routine enquiry required. o Healthcare workers will be required to briefly describe the study to all new patients at the end of each visit. o Following each new patient assessment workers will be required to complete the worker data collection form. This should take approximately 1 minute. o Areas are required to provide a private space where women can complete the data collection forms. 5 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Computer Assisted Routine Enquiry (CARE) Data collection in the CARE group aims to assess the effectiveness of CARE in facilitating disclosure, gathering information on characteristics of those who do disclose, measuring the frequency of face to face enquiry of abuse following CARE and gathering the views of service users and staff on anonymity and service users’ views of using CARE. Introducing Computer Assisted Routine Enquiry The fieldworker will advise healthcare worker that CARE is required and if necessary set up equipment prior to assessment commencing. The healthcare worker will introduce themselves to the woman as usual and take them to the assessment room. When routine enquiry would usually be introduced (for example during private time or during relationship / family assessment) the healthcare worker will remind women of the study. They will indicate how to start the programme, advise the woman to open the room door when the programme ends and leave them alone to complete the CARE programme. They will return to the room when women have opened the door to indicate that they have finished. o The CARE Programme – Enquiry and disclosure The programme content is detailed in Appendix 6. To ensure that all women participating in this study are asked about domestic abuse and given an opportunity to disclose the following features have been included in the programme: If women exit the programme before routine enquiry has been achieved notification of this will be printed out in the room stating “Routine enquiry please, exited programme before routine enquiry achieved.” If women do not disclose personal experience of abuse but wish to speak with healthcare worker about abuse a print out in the room will state “Please discuss domestic abuse – no disclosure.” If women do disclose and choose to share this information with healthcare workers then a print out in the room will state “Please discuss domestic abuse – disclosure.” This will also provide any additional information that women provide about the abuse. Whether women do or do not disclose during the CARE programme, if they choose not to share this information with workers no print out will be made. When the healthcare worker returns to the room they will check to see if there is a print out with instruction to discuss domestic abuse with the woman. If so, the healthcare worker will open the discussion on abuse or carry out face to face routine enquiry. If there is no print out, the healthcare worker will ask women a general question about using the computer and if there is anything they would like to discuss. Healthcare workers will also remind women that all of their responses are confidential and that no-one will know how they answered. o Assessment visit – CARE Group The assessment will then continue as usual. If indicated later in the assessment the healthcare worker may provide another opportunity for disclosure by asking direct questions about domestic abuse if they think it appropriate. 6 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse o Healthcare worker - CARE Group Once the woman has left the healthcare worker will complete the data form whether or not the woman used the CARE Programme (Appendix 7). Forms should take a maximum of 2 minutes to complete and will be collected by the fieldworker at the end of each session. o Implications for workers using CARE: Be advised by fieldworker whether face to face or computer assisted routine enquiry is required. Introduce CARE at most appropriate part of assessment. Show women how to start programme (Simply “To begin, press the screen here”). Leave women to complete CARE Respond to instructions on print out and disclosures as usual. If there is no disclosure remind women that all responses are confidential and therefore, no-one will know how she has responded. Completing healthcare worker data collection form (approximately 2 minutes) 5.5 Ethics Ethics approval will be sought from the West of Scotland Research Ethics Committee. The key issues to protect participants in this study are obtaining informed consent, ensuring confidentiality, ensuring no disadvantage to participants and, as domestic abuse is perceived as a sensitive topic, provision of support for staff and service user participants. Informed Consent Informed consent will be obtained on arrival at the clinic. Service users will be given written information on the study (Appendix 3). A fieldworker will talk through the main points as described previously and provide an opportunity for participants to ask questions. Participants will be asked to sign two copies of the consent form. One copy will be retained by the fieldworker and the other by the participant. This study is investigating methods of routine enquiry about domestic abuse. As written information is intended to be retained by service users, and may be seen by partners or others, stating this on the written information may jeopardise the safety of some women. Care has been taken to remove terms associated with domestic abuse and gender-based violence from written information from this reason (for example, removing GBV Programme from contact details). Service users can exit from the study at any point either by not completing the questionnaire in the usual care group or by exiting the CARE programme. To remove potential for women who disclose only during the computer programme to expect a response from healthcare workers, fieldworkers will highlight that health care workers not be aware of any disclosures and will not be able to offer support unless women choose to share their responses with them. In cases where women have chosen not to share responses the health care worker will remind them that they do not have access to any of the information shared by women during the computer programme. Confidentiality A number of actions will be taken to ensure confidentiality for both service user and health care workers. Consent forms will be returned to the research manager and retained by them for 3 years. 7 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Reference numbers will be assigned to participants and to study sites (detailed later in this paper.) Study site codes will be assigned by the research manager and the code list retained by them. Participant reference codes will be assigned by fieldworkers. No additional participant data will be retained. All data will be stored in locked cupboards or password protected databases. Access will be controlled by the research manger. A number of security factors are employed to ensure confidentiality of data collected using the CARE programme. Data will be protected through an encrypted SSL session and will be held in a TIA942 compliant tier-4 data centre with physical access security and controls. The results will be stored within a hardened operating system environment, secured in accordance with the Windows Server 2003 Security Guide published as part of Microsoft’s Security Compliance Management Toolkit. The database that results are stored in is secured in accordance with the Microsoft “Securing SQL Server” guide (Nov 2009). Export of results would be through a controlled encrypted SSH interface with password strength as specified in NHS Security guidelines. All connections to the system are secured through layered firewalls from 2 separate suppliers (EAL4 certified) and the application server is accessed through a reverse proxy rather than directly. To ensure confidentiality for focus groups participants, data will be anonymised at the time of transcription. All data will be stored in locked cupboards and in password protected databases. As anonymity is a key factor in computer assisted routine enquiry, it is essential to consider this in all aspects of study design. Fieldwork in rural areas will be carried out by workers who have no previous connections with the study site to address some service user concerns around confidentiality. This will also provide in person contact for those service users who wish support but do not wish to disclose to local workers. Care will be taken when reporting the study findings as the very small numbers of participants and workers in rural services may jeopardise confidentiality. Potential disadvantage Routine care in the study settings will involve asking every new female patient about domestic abuse as part of the assessment process. During the study this will continue for those allocated to the usual care group. For those allocated to the CARE group this question will be asked using a computer and will provide an opportunity for this information to be disclosed to healthcare workers either by print out or by women disclosing directly to staff following computer enquiry. Women who exit the programme before routine enquiry has been achieved will be asked by the healthcare worker in person as will women who decline to participate. Workers will continue to use their professional judgement and in situations where they feel that specific questions about domestic abuse should be asked in person following CARE they will continue to do so. This will be captured through data collection tools for workers. Therefore, the CARE group will not be disadvantaged. 8 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Support for staff and service users Study sites will have implemented routine enquiry of domestic abuse as part of usual care through the National Gender-Based Violence & Health Programme. Prior to this introduction practitioners and managers will have received training and identified supports for workers and service users. However, as this study is presenting an alternative method to that routinely used and recognises providing anonymity as a key factor in enabling disclosure, it is possible that some service users may wish further support and may not feel able to approach local staff. Each fieldworker will be equipped to respond to immediate support needs of service users (risk assess and safety plan, be aware of national and local supports, facilitate referrals, be skilled at dealing with distressed people.) If requested the fieldworker will maintain contact with women, until appropriate alternative supports are in place. The fieldworker will also be available to workers in the area who wish to discuss the study, supports for service users or their own experiences. 5.6 Data Quantitative data o Tools for routine enquiry - CARE A number of screening tools have been validated for gathering data on domestic abuse. In a systematic review, Feder et al (2009) state that the Women Experience of Battering (WEB) tool was one of the highest ranked enquiry tools. The WEB tool has been incorporated into computer based intimate partner violence screening tools in maternity, primary care and emergency medicine (Renker & Tokin 2007; Rhodes et al 2006 & 2002; McNutt et al 2005). In this study computer assisted routine enquiry questions are drawn from the tool used by Rhodes et al 2006 which incorporates physical, emotional and sexual abuse. When women do disclose abuse further questions about the abuse are taken from Dr Campbell’s Danger Assessment (2004) and the SPECSS assessment (http://www.met.police.uk/csu/pdfs/AppendixIII.pdf). o Questionnaires Service users Questionnaires are a cost effective and efficient method to gather data and can offer anonymity to participants (Robson 2002). Views of participants in usual care group will be collected using self completion questionnaires. Completed questionnaires will be placed by the participant in a sealed envelope and returned to the research manager for collation and analysis using SPSS software. Service user views on CARE will be collected as part of the CARE programme (Appendix 1) using questions adapted from Oschwald et al (2009). All responses will be based on multiple choice or Likert scales to ease both data entry by participants and analysis. Healthcare workers Data will be gathered from healthcare workers using post visit questionnaires. As routine enquiry is part of usual care health care workers in study sites will routinely be recording the frequency of routine enquiry, disclosures of abuse and equalities monitoring data. In addition, workers providing usual care will be asked about anonymity (Appendix 6) and if using CARE will be asked if they asked specific questions about abuse following CARE (Appendix 7) 9 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse o Identification Codes The following codes will be applied to enable analysis: Study Site This code will enable researchers to identify the: NHS Board Setting (Maternity or Mental Health) Rurality of service location Service User - Rurality Some women will live in rural areas and travel to more urban settings to receive care. This will not be captured in the study site code. A service user rurality code will be obtained by the fieldworker using the woman’s postcode and the Scottish government Rurality Index. Only the index rating will be entered, the woman’s postcode will not be retained. Record Number A record number will be applied to enable pairing of worker and service user data. This number will incorporate the study code and two additional digits assigned by the fieldworker. o Analysis of quantitative data Data will be entered into Microsoft access database for analysis. Data will be analysed according to setting (mental health or maternity services); rurality (rurality index rating) and method of enquiry (face to face or CARE). Disclosure, acceptability and importance of anonymity will be compared across groups. In addition, service user and worker reports on frequency of routine enquiry and importance of anonymity will be compared. Qualitative data In order to gather information about the practical application of CARE, workers will be invited to participate in a focus group following the completion of quantitative data collection in their area (Appendix 8). Focus groups are an efficient method of obtaining qualitative data and can generate dialogue within the group to explore issues (Polit & Hungler 1997). Focus groups will be recorded with consent and will be transcribed by the group facilitator or by the administrator for the National Programme Team. Data will be anonymised at the time of transcription. Transcripts will be read repeatedly by the Research Manager and coded to identify emergent themes. A second researcher will read a subset of transcripts to ensure that an appropriate coding structure has been developed and that all potential themes have been identified. Fieldworkers will keep diaries detailing supports required by service users and / or workers in relation to the use of technology and to experiences of domestic abuse. In addition, reasons for exclusion from study and numbers of women declining to participate will also be recorded. Fieldworkers will be invited to participate in interview or focus group to further explore their experiences of implementing CARE following the quantitative data collection period. 10 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse 6. Timetable Consultation on proposal Confirm study sites Ethics approval Preparation of study sites Identify fieldworkers Data Collection in Health Boards Collation & Analysis of Data Reporting March 2010 April 2010 May / June 2010 From May 2010 June / July 2010 August 2010 to February 2011 March / April 2011 May 2011 7. Dissemination of Findings Findings will be reported and disseminated by the National GBV & Health Programme Team. Full and summary reports will be available in hard copy and through the Programme website from May 2011. In addition, a series of presentations will be delivered to boards and interested groups. 8. Resources A Study Steering Group and Advisory Group will be established to guide the research. The Steering Group will have representation from each of the participating health boards. A series of regular meetings will be established to oversee the implementation of the study. The Advisory Group will have membership of researchers with experience of working in the healthcare setting and / or in the issue of GBV. Group members will come from Scottish Government, Health Boards and Academic Institutions and will advise on technical aspects of the research. The Research Manager, National GBV & Health Programme will co-ordinate study sites, participate in data collection, collate, analyse and report on findings. It is anticipated that some health board areas will be able to support this work by providing a worker to support fieldwork. In addition, funds have been identified to commission fieldworkers. The Research Manager will provide support to prepare fieldworkers for data collection, responding to disclosures and providing information to survivors of abuse. Fieldworkers will attend site preparation sessions with the Research Manager. Additional resources will be required to fund travel and accommodation for fieldworkers when visiting rural areas. Where possible, planning of new patients assessments will be co-ordinated to allow most efficient use of researcher time and financial resources. An internet enabled computer assisted routine enquiry (CARE) programme will be developed by Scotland’s Health on the Web (SHOW) Development Team. They will provide ongoing support throughout the data collection period. There are no costs associated with the development of the software. Whilst most clinical areas will already have some IT equipment the purchase of specific equipment for this study is required. Equipment would be portable, have audio and headphone facilities, internet access and if possible have touch screen facilities to make CARE as accessible as possible. The purchase of two laptop / tablet computers would allow data collection in more than one area at any time (either two separate rural sites or two service users at any time in urban sites.) A third would provide a backup which is essential in rural areas where there are fewer opportunities to collect data. The SHOW team have advised on most appropriate IT equipment and the total cost is estimated at £2514.00. This 11 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse equipment will be of use in future research and service development. Costs will be met through the National GBV & Health Programme. 9. Appendices 1. 2. 3. 4. 5. 6. 7. 8. Care Programme Process diagram Written information – service users Consent form Data collection form – usual care service users Data collection form – usual care workers Data collection form – CARE workers Focus group guide – workers 12 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse 9. 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Lippincott London Renker PR (2008) “Breaking the Barriers: The promise of Computer- Assisted Screening for Intimate Partner Violence.” Journal of Midwifery & Women’s Health. 53 (6) p 496-503 Renker PR & Tonkin P (2007) “Post Partum Women’s Evaluation of an Audio / Video Computer Assisted Perinatal Violence Screen.” Computers, Informatics, Nursing 25 (3) p139-147 Rhodes KV, Drum M, Anliker E, Frankel RM, Howes DS, Levinson W (2006) “Lowering the threshold for discussions of domestic abuse.” Archives of Internal Medicine 166 (May 22) p1107-1114 Robson C (2002) “Real World Research” Blackwell London Rodriguez MA, Bauer HM, Flores-Ortiz Y & Quiroga SS (1996) “Breaking the Silence: Battered women’s perspectives on medical care.” Archives of Family medicine. 5 pg 153-158 Scottish Government (2008) National Domestic Abuse Delivery Plan for Children and Young People Seng JS et al (2008) “Mental Health, Demographic and Risk Behaviour Profiles of Survivors of Childhood and Adult Abuse” Journal of Midwifery & Women’s Health 53 (6) p512-521 Sharps P et al (2001) “Health Care Providers’ Missed Opportunities for Preventing Femicide.” Preventative Medicine 33 p373-380 Stenson K, Sidenvall B & Heimer G (2005) “Midwives experiences of routine ante natal questioning relating to men’s violence against women.” Midwifery 21 (4) p311-21 Trautman DE, McCarthy ML, Miller N, Campbell JC, Kelen GD (2007) “Intimate Partner Violence and Emergency Department Screening: Computerized screening versus usual care.” Annals of Emergency Medicine. 49 (4) p526534 Ulrich et al (2006) “Postpartum Mothers’ Disclosure of Abuse, Role and Conflict” Health Care for Women International 27 (4) 324-43 United Nations (1992) General Recommendation No19. 11th Session, Committee on the Elimination of Discrimination Against Women. www.un.org/womenwatch/daw/cedaw/recommendations/recomm.htm#recom19 WHO http://www.who.int/gender/violence/en/ site accessed 17/3/10 Zink T et al (2004) “Medical Management of Intimate Partner Violence Considering Stages of Change. Precontemplation and Contemplation.” Family Medicine 2 (3) p231-239 14 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 1 Computer Assisted Routine Enquiry (CARE) Programme - Draft 4 (29/04/10) 1) Introduction A short subtitled video clip lasting 1 minute will welcome participants to the CARE programme. The clip will show a researcher talking to camera. This will be subtitled. “Thank you for taking part today. We are trying to find the best way to ask women about things that affect their health. This should take about 10 minutes to complete. This programme is in 3 parts. The first shows you how to use the computer, the next asks questions about things that affect your health. The last section asks how you felt about using this computer. During everyone’s first visit they are asked questions about themselves and their health. We want to know about these things because we may be able to help in the way that we provide care to you, by giving information, support or by putting you in touch with other workers. Today this computer will ask some of these questions. To make sure that the researchers working on this study do not know who has taken part in the study none of your personal details are stored on this computer. This means that the workers in the clinic will not know how you have answered. We hope that you will share your answers with your worker today and during the programme you will be asked if you are happy to do this. If you answer yes some information will be printed out in this room. If you answer no, the workers here will not know how you have answered. Let’s get started. The next section shows you how to use the computer.” Video clip ends 15 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse 2) Using the computer This section will take 45 – 60 seconds to complete. Using touch screen Throughout the programme text will appear on the screen and the woman will hear the words through an audio stream. In addition, each response option will be highlighted as the words appear and are heard. The following questions familiarise women with the touch screen computer. “We are going to ask some questions to get you used to the computer. To answer, please touch the answer on the screen that suits you best. Here are some shapes. CIRCLE SQUARE STAR Please select the CIRCLE” If woman selects the circle the audio stream will play the words “Thank you” and the programme will continue to advise on using the programme. If the woman does not select the circle then the following words will appear on the screen and be read by the audio stream: “Let’s try another one. Look at the squares below. BLACK GREY WHITE Please select the BLACK square” 16 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse If the woman selects the correct response she will hear the words “Thank you” by audio stream and the programme will continue to advise on using the programme. If the woman selects the incorrect symbol on the second attempt the following words will appear on screen and be heard by the woman through the audio stream. “Thank you for taking part. Please open the door to this room to let your worker know you have finished” The programme will then print off a paper for workers stating “Please ask about domestic abuse. Programme exited before routine enquiry achieved.” Other instructions Each of the following instructions will appear on the screen in words with a picture to illustrate the action. The woman will hear the words through the audio stream. If, for any reason you want to finish the programme early you can touch the EXIT button at any time. EXIT To go back to your last answer touch the BACK button. < BACK To move on to the next question touch the NEXT button. NEXT > These options will remain on the screen throughout the programme. If women do choose to exit at any point the screen will clear and they will receive the message Thank you. Please open the door to this room to let the midwife (or healthcare worker) know that you have finished. 3) General questions This section introduces general questions. Again, words will appear on screen, women will hear the words by audio stream and multiple choice answers will be given and highlighted as women hear each option. 17 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse “This is the second section of the programme. Please select the answer that suits best by touching the screen.” How old are you? 16 to 19 years 20 to 39 years 40 to 59 years 60 years or older How many children do you have? 0 1 2 3 4 or more These questions could be followed by questions requested by the participating health boards about health behaviours or health services. Where health board specific questions are included staff will be aware of the inclusion and prepared to respond to questions or support requests from service users. In addition, written information on the topics will also be provided. This section will take between 30 seconds and 2 minutes to complete depending on the number of additional questions included by boards. 4) Introduction to routine enquiry A subtitled video clip lasting 15 seconds and showing the researcher talking to camera will introduce the routine enquiry questions. Different words will be used in maternity and mental health settings: In maternity setting: “About a quarter of women in Scotland are affected by domestic abuse at some point in their lives. Women who experience abuse often have health problems as a result of this. Domestic abuse can start or increase in pregnancy. Midwives can provide support to women who experience abuse and so we ask every woman who comes to maternity services if this is a problem for them.” In mental health services: “About a quarter of all women in Scotland are affected by domestic abuse at some point in their lives. Women who experience abuse often have physical and mental health problems as a result such as depression and anxiety. We ask every woman who comes to this mental health team if this is a problem for them.” Video ends. The following questions will appear one at a time on the screen: “Is your current (or most recent) partner” MAN WOMAN The following questions will appear one at a time with a yes or no response option: 18 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse “Does your partner try to control your life? Does your partner try to keep you away from family and friends? Does your partner insult you or put you down? Are you afraid to disagree with your partner? Has your partner ever physically hurt you? Have you ever been hurt physically by a partner (if current or in past year)? Have you ever had sex when you didn’t want to? (If yes) Was this with a current partner? Do you feel threatened by a current or former partner?” No Disclosure If the woman answers No to all questions above the following text will appear on the screen with audio stream: “Health care workers can help if you would like to talk about domestic abuse at any time, for yourself or for someone you know. There are also specialist services that can help whether women choose to stay or leave their partners like the National Domestic Abuse Helpline and Women’s Aid. You will find contact details for these groups in the information pack you get today.” “Would you like to talk to a worker today about domestic abuse?” Women will be given Yes or No answer options. If women select “Yes” a document will be printed off in the room for the worker stating “Please discuss domestic abuse, no disclosure.” The programme will then move on the Evaluation questions (Section 6). Disclosure of Abuse If women answer “Yes” to any of the questions about domestic abuse the programme will move on to section 5. This section will take approximately 1 minute and 20 seconds to complete. 5) Women’s experience of abuse. This section asks women who have disclosed more questions about their abuse. Again words will appear on the screen and the audio stream will play. Each of these questions will appear separately on the screen with a yes or no answer option. “Have you ever told a friend or relative about this? Have you ever told a health care worker about this?” 19 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse The following questions will be used to identify characteristics of abuse experienced by women who disclose to workers and those who do not. Questions will appear on the screen one at a time and will have a yes or no answer option. “Is the abuse happening more often? Is the abuse becoming worse? Has your partner ever used a knife or other weapons? Has your partner said or done sexual things that made you feel uncomfortable or that hurt you? Do you have a child from a previous relationship? Has your partner ever been arrested for domestic violence? Does your partner have problems with drugs or alcohol? Does your partner have mental health problems? Has your partner ever threatened to kill themselves or someone else?” Questions about children will only appear where women have stated that they have children in the initial questions. A subtitled video clip of the researcher will play the following: “Thank you for telling us about your experiences. You could be at risk of further harm from your partner and we would encourage you to speak to people who may be able to help you. These include the nurse or midwife that you see today, any other healthcare workers you see on future visits, health visitors or your own GP. Groups are also available who may be able to help you such as Women’s Aid or the National Domestic Abuse Helpline. They can help you to consider all the options that are available to you. Contact details are given to all women in the information pack you will get today. No one deserves to live with abuse and help is available. Whether you decide to stay with your partner or not there are some things that you can do to protect yourself. The following advice from Women’s Aid (Barron 2009) will appear on screen: “If you can tell someone you trust about the abuse. Keep emergency numbers such as the police, women’s aid and the National Domestic Abuse Helpline numbers with you. Rehearse an escape plan so you can get out quickly if you have to. Pack an emergency bag and keep it somewhere safe such as a friend’s house. If you can try to keep a small amount of money on you at all times.” Video ends and the following words will appear on screen with audio stream: “We ask every woman who presents to this service about domestic abuse because it can affect your health and because we may be able to offer some support and information about the options available to you. Would you like to speak to a midwife (or healthcare worker) today about domestic abuse?” A yes or no answer option will be given. If women select yes she will hear on audio stream “We will let your midwife know that you wish to talk with her.” A document will be printed in the room for the worker stating “Please discuss domestic abuse – disclosure”. This document will also detail yes responses to questions about abuse. 20 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse If the woman selects no the following words and audio stream will run: “The midwife / nurse that you see today will not know how you have answered these questions. You can talk a nurse or midwife at any time and they may be able to help you. “ This section will take around 3 minutes to complete. The programme will move on the section 6 6) Evaluation This section will take approximately 2 minutes to complete. The following words will appear on screen with audio stream: “This is the final section and we’d like to ask you some questions about using this computer today.” The following questions will appear one at a time on screen. The response options are listed below the questions: “How did you find using this computer programme? Very easy Easy Difficult Very difficult This programme asked about domestic abuse. Do you think you would have preferred to be asked by a nurse or midwife directly rather than by a computer? Yes No No Difference Do you know anyone who is working in the clinic today as a friend, relative or neighbour? Yes No If you had known someone do you think this would have made talking about domestic abuse: A lot easier Easier It wouldn’t have made a difference Difficult Very difficult You have chosen whether or not to share your answers with workers here today. Do you think you would have answered differently if the information was automatically shared with workers? Yes No Did this programme give you any new information about domestic abuse? Yes No 21 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Do you think this programme would be helpful for women who are experiencing domestic abuse? Yes No” 7) End Programme “Thank you for taking part today. Please open the door to indicate that you have finished the programme.” 22 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse 23 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 2 – Data collection process Fieldworker identifies women who meet inclusion criteria and meet with them in arrival at clinic to describe study and obtain informed consent. If the woman consents the fieldworker allocated identifies if woman allocated to usual or CARE group, informs healthcare worker which is required in this visit, sets up equipment if necessary and gives worker appropriate data collection form. Usual care group Assessment visit carried out as usual. At the end of the visit the healthcare worker will briefly remind the woman about the study and give the woman a questionnaire and private space to complete it. If the woman declines to participate the fieldworker notifies the healthcare worker and usual care is provided. CARE group The healthcare worker meets the woman and begins assessment. At the most appropriate point in the assessment (e.g. private time) the worker will leave the woman alone to complete the CARE Programme. When the worker returns to the room they will check if any instruction has been printed out. If instruction has been printed out the healthcare worker will respond accordingly: routine enquiry, discuss domestic abuse or to begin discussion with women who have disclosed. If no instruction, the healthcare worker will ask the woman if there is anything they would like to discuss. If so, respond as usual. If not, continue visit as usual care. Once the woman has left, the healthcare worker completes post visit pro forma and places it in a sealed envelope for collection. All envelopes will REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse be collected by the fieldworker at end of session. 24 25 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 3 Methods of Enquiry Research Study - Information for Participants Everyone visiting the clinic for the first time will be asked questions about their health. This helps the healthcare worker that you see today to get a better understanding of the kind of care you may be interested in. We are doing this study to find out the best way to ask some of these questions and are asking every woman who comes to this service for the first time today to take part. By participating you will be helping us to make services available to as wide a range of people as possible. Participation is for today only and you will not be asked to take part in this study in the future. If you agree to participate you will be asked to do one of the following: At the end of your visit complete a short questionnaire telling us what you think about some of the questions that the healthcare worker asked you. There are 7 questions with a choice of answers and it should take about 2 minutes to complete. OR Use a computer to answer some of the questions during your visit today and then tell us what you think about this. The programme has been designed for the general public to use so you do not need to know about computers to take part. It takes about 10 minutes to complete. You can choose to end the programme at any time. To make sure that your responses are confidential your personal information is not used in this study. For people using the computer programme this means that unless you choose to share the answers you give, healthcare workers will not know how you have responded. You will be asked during the programme if you are happy to share your answers with workers and we hope you will. The decision to participate is entirely up to you. If you decide not to take part the service you receive will not be affected. This research is part of a Scottish Government programme working across all Health Boards in Scotland. A report will be produced in May 2011 which will describe the study results. If you would like to know any more about this study please contact me, Clare McFeely, Research Manager, Scottish Government, 4th Floor The Beacon, 176 St Vincent Street, Glasgow, G2 5SG, call 0141 249 6586 or email clare.mcfeely@nhs.net The researcher working here today is called (fieldworker name) and can be contacted in the clinic today or by telephone on (fieldworker mobile). If you have any complaints about this study please contact Alastair Pringle, Head of Patient Focus & Equalities, Directorate of Healthcare Policy & Strategy, 4th Floor Beacon Building, 176 St Vincent Street, Glasgow, G2 5SG. Thank you Clare McFeely, Research Manager. 26 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 4 Consent Form - Participants copy Please tick the appropriate boxes and the sign the form below. I have read and understood the information about this study I have been given the opportunity to ask questions Procedures for confidentiality and anonymity of data have been explained to me (Ensuring that my personal details are not linked with my responses or shared with anyone.) I voluntarily agree to participate I understand that I can withdraw from the study at any time Participant Signature: Date: Researcher Signature: Date: Thank you for taking part in this study. 27 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Consent Form - Researcher copy Please tick the appropriate boxes and the sign the form below. I have read and understood the information about this study I have been given the opportunity to ask questions Procedures for confidentiality and anonymity of data have been explained to me (Ensuring that my personal details are not linked with my responses or shared with anyone.) I voluntarily agree to participate I understand that I can withdraw from the study at any time Participant Signature: Date: Researcher Signature: Date: Thank you for taking part in this study. 28 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 5 Service User Data Collection Form. Usual Care Study Site Code: Entered by fieldworker Record code: Entered by fieldworker Please tick: Were you seen alone by a midwife (or mental health worker) today? Yes No Were you asked about domestic abuse today? Yes No Have you ever experienced domestic abuse? Yes, now Yes, in the past No, never If yes please circle the people below that you have told about this. The health worker you met today / Other health service workers / Women’s support services / The Police / Social workers / Priests, ministers or other religious leaders / Friends or family Do you know anyone working here as a friend or neighbour or relative? Yes No Do you think knowing someone who works would make talking about domestic abuse: A lot easier A bit easier It wouldn’t make a difference A bit more difficult Very difficult Thank you very much for helping us with this study. Please put this form in an envelope and place it in the box in this room. 29 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 6 - Data Collection for Healthcare Workers – Usual Care To be completed by workers following completion of visit for Usual Care group. Study Site Code: Entered by fieldworker Record code: Entered by fieldworker Please tick the appropriate boxes. Did you have any information prior to the assessment that this woman had experienced of domestic abuse (e.g. on referral information)? Yes No If yes, where did this information come from? _____________________________________________________________________________________ _____________________________________________________________________________________ Did you see the woman alone during this visit? Yes No Did routine enquiry for domestic abuse take place? Yes No If routine enquiry did not take place, why not? ___________________________________ _______________________________________________________________________ Did the woman disclose? (Please tick all that apply) Current domestic abuse Past domestic abuse Other experiences of abuse? No disclosure Did you know this woman as a friend / relative / neighbour? Yes No If yes, did this make a difference to asking about abuse? It made it easier to ask It did not make a difference It made it more difficult to ask Did the woman complete a questionnaire? Yes No Please complete the monitoring questions over the page. 30 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Please tick the boxes most appropriate to the woman: Ethnicity White Irish Scottish Any other white British Mixed Any mixed background Asian, Asian Scottish or Asian Indian British Pakistani Bangladeshi Any other Asian background Chinese Black, Black Scottish or Black Caribbean British African Any other black Other Other Ethic background Not known Ethnicity not disclosed Disabled Yes No Age 16-19 20-29 30-39 40-49 50-59 60 – 65 65+ Thanks you. Please place the completed form in an envelope for collection by …………. 31 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 7 – Data collection form workers - CARE group. Study Site Code: Entered by Fieldworker Record code: Entered by Fieldworker Did the woman complete the CARE programme? Yes - Please complete Section 1 only No – Please complete Section 2 only Section 1 –When service users complete CARE programme When you returned to the room which of the following had happened? Print out containing disclosure Go to question 1 Print out - no disclosure Go to question 2 No print out Go to question 3 Question 1 a) Did you raise the disclosure with the woman? Yes No If yes, what was the outcome? (e.g. referral to services, arranged follow up appointment, service user declined further supports, service user declined to discuss further?) ______________________________________________________________________________ ______________________________________________________________________________ If not, why not? ________________________________________________________________ ______________________________________________________________________________ Please go to question 4 Question 2 a) If the print out did not contain a disclosure, did you ask if there was anything they wanted to discuss with you? Yes No b) Did the woman go on to disclose any of the following to you? Tick here Current domestic abuse Please go to question 4 Past domestic abuse Please go to question 4 Other experiences of abuse? Please go to question 4 No disclosure Please go to question 5 Stated that someone known to her was Please go to question 5 experiencing abuse 32 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Question 3 a) If the woman did not choose to print out responses did you ask if there was anything they wished to discuss? Yes No b) If not, why not? ________________________________________________________________ ______________________________________________________________________________ c) During this visit did the woman go on to disclose any of the following to you? Current domestic abuse Please go to question 4 Past domestic abuse Please go to question 4 Other experiences of abuse? Please go to question 4 No disclosure Please go to question 5 Question 4 a) If the woman did disclose, did you document this? Yes Where? __________________________________________________________________ No Why not? __________________________________________________________________ b) What was the outcome of this disclosure? (e.g. referral to services, arranged follow up appointment, service user declined further supports, service user declined further discussion) _____________________________________________________________________________ _____________________________________________________________________________ Please go to question 5 Question 5 During the course of this visit did you ask specifically if the woman had or was currently experiencing domestic abuse? Yes No Please go to question 6 Question 6 Did you have any information prior to the assessment that this woman had experienced of domestic abuse (e.g. on referral information)? Yes No If yes, where did this information come from? _____________________________________________________________________________________ _____________________________________________________________________________________ Please complete the monitoring data on the back page. 33 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Section 2 – For completion when service user declined to participate or exited the programme before routine enquiry was achieved. 1) Please tick appropriate box Woman declined to participate in study Woman exited programme before routine enquiry was achieved Programme not completed due to technical difficulties 2) Did you have any information prior to the assessment that this woman had experienced of domestic abuse (e.g. on referral information)? Yes No If yes, where did this information come from? _____________________________________________________________________________________ _____________________________________________________________________________________ 3) Did you see the woman alone during this visit? Yes No 4) Did routine enquiry for domestic abuse take place? Yes No If routine enquiry did not take place, why not? ___________________________________ _______________________________________________________________________ 5) Did the woman disclose? (Please tick all that apply) Current domestic abuse Past domestic abuse Other experiences of abuse? No disclosure 6) If the woman did disclose what was the outcome of this? (e.g. referral to services, arranged follow up appointment, service user declined further supports, service user declined to discuss further?) _____________________________________________________________________________________ ______________________ ________________________________________________ 7) If the woman disclosed did you record this? Yes If yes where? ___________________________________________________________________ No If no, why not? __________________________________________________________________ Please complete the monitoring data on the next page. 34 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Please tick the boxes most appropriate to the woman: Ethnicity White Irish Scottish Any other white British Mixed Any mixed background Asian, Asian Scottish or Asian Indian British Pakistani Bangladeshi Any other Asian background Chinese Black, Black Scottish or Black Caribbean British African Any other black Other Other Ethic background Not known Ethnicity not disclosed Disabled Yes No Age 16-19 20-29 30-39 40-49 50-59 60 – 65 65+ Thank you. Please place this form in one of the envelopes provided and leave at the collection point at ........... 35 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse Appendix 8 Focus Group Guide – Workers in Study Sites Introduction Welcome and thanks for coming today. The purpose of this focus group is to gather your views on using computer assisted routine enquiry. Explain confidentiality in focus groups. General questions How have you found using CARE? How do you feel about using CARE with service users? How does it compare to asking in person? Did you still do face to face routine enquiry, even when woman had completed CARE? How do you think patients found using the CARE programme? Can you give examples of feedback? Disclosure Did many women choose to print off their responses? When responses were printed did they contain disclosures of abuse? If yes, how did you approach this? Did you ask if there was anything the women wished to discuss when you returned to the room? Did this lead to disclosure? Do you think disclosures increased during the CARE study period? Are you aware of domestic abuse through other sources e.g. referral letters? If so, how does this affect your practice? Anonymity Anonymity can be a barrier to disclosure of experiences of abuse. Do you know the service users presenting here outwith the professional / service user relationship? (E.g neighbours, friends, families.) How do you feel about asking women you know about domestic abuse? (Has it / would it stop you from asking?) Do you think this could stop women disclosing? Do you think that CARE addresses anonymity? What (else) do you think could be done to address this? In studies in the USA, workers are automatically informed of service user responses. What do you think about that? Does CARE address any other barriers to routine enquiry? Practicalities Were there any technical difficulties using care? How does CARE fit into routine assessments? Did CARE make a difference to time taken to complete assessments? Other Is there anything that we haven’t covered today that you would like to talk about? Thank you for taking part. 36 REC Ref 10/S0709/30 Methods of Routine Enquiry – Domestic Abuse