Evaluating 'FREDA Challenge': a coproduced human rights board game in services for people with intellectual disabilities.

Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2014

Evaluating ‘FREDA Challenge’: A Coproduced Human Rights Board Game in Services for People With Intellectual Disabilities Miguel Montenegro*,† and Beth Greenhill*,† *Division of Clinical Psychology, The University of Liverpool, Liverpool, UK; †Rebuild CBU, Mersey Care NHS Trust, Liverpool, UK

Accepted for publication 19 June 2014

Background A serious board game called ‘FREDA Challenge’ was co-produced with people with intellectual disabilities (PWID) as a tool for human rights (HR) education and increase positive attitudes towards HR in healthcare settings. The current study evaluated ‘FREDA Challenge’ with PWID and their carers. Method Eighteen PWID and 13 carers participated in a repeated measures design whereby changes in attitudes and knowledge of HR were measured. Results Analysis revealed statistically significant differences (P = 0.02) between PWID and carers in their knowledge of HR. The same was not evident for

Introduction Human rights (HR) are central to human relations (Human Rights Act 1998; UN General Assembly 2006), acting as a basic standard for social, legal and healthcare services in preventing institutional abuse and marginalization of subcultures/minorities (Isaac et al. 2010). HR principles are particularly relevant to service delivery for people with intellectual disabilities (PWID) who have historically, and recently, experienced extreme abuse at the hands of institutions and care systems (Tarulli et al. 2004; Owen & Griffiths 2009). PWID often have difficulties accessing their HR (Degener 2003; UN General Assembly 2006; Quinn 2009; Dimopoulos 2010), remaining invisible from education and social planning (Owen et al. 2003; Correia & Martins 2007), receiving reactive and nonconsented care in detriment of their most basic HR to live, to privacy and to be treated with respect © 2014 John Wiley & Sons Ltd

attitudes towards HR. The positive attitudes and knowledge in the PWID group significantly increased after playing the game (P ≤ 0.02), but not for the carers/ professionals group. Conclusions Findings suggest that playing the board game can positively change the attitudes and knowledge of PWID towards HR. The board game seems to elicit positive interpersonal dynamics between PWID and carers/professionals. Keywords: attitudes, board game, coproduction, FREDA, human rights, intellectual disability

(Healthcare Commission 2007). As is evident from the recent Mencap (2012) report, inconsistent provision within healthcare settings (Department of Health (DoH) 2009) must be changed to ensure the rights and needs of PWID are not ‘sacrificed in favour of the needs of the institution’ (Healthcare Commission 2007, p. 8). Just like anyone else, PWID require development of knowledge and skills to fully access their rights (Healthcare Commission 2007). The extant literature shows that PWID can benefit from, and inform the development of, formal and informal HR training methods (Roberts et al. 2011, 2013) through coproduction (Boyle & Harris 2009). A board game was coproduced within a healthcare service in the north-west of England to raise awareness of HR (Roberts et al. 2013) in a pleasurable and engaging format with PWID and their carers, informed by a ‘values and awareness model’ of HR education (Tibbitts 2002; Kidd 2012). This paper explores the impact of playing the board game on 10.1111/jar.12124

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knowledge of, and attitudes to, HR for PWID and their carers.

balancing each principle with the rest (Doody 2009; Curtice & Exworthy 2010; Greenhill & Whitehead 2010).

Human rights and the ‘FREDA’ principles

Attitudes to HR

The ‘Human Rights Act’ (1998) is the major piece of relevant legislation concerning HR within the UK and was used as the legal framework for this study. At the core of the HRA are five values, known as ‘FREDA’ (DoH & The British Institute of Human Rights 2007; DoH 2008) standing for fairness, respect, equality, dignity and autonomy (Figure 1). Constructing HR in terms of the core ‘FREDA’ values is well established (Butler 2005). The UK DoH (2001) has previously advocated the ‘FREDA’ values to demystify HR and promote dignity, respect and fairness in health care. Proponents argue that HR are a code for human interactions, whose values should permeate all human interactions to inform ethical decision making (Curtice et al. 2010a), through interlinked processes

Power issues and specific support needs often conspire to make carers and supporters highly influential in the lives of PWID. An awareness of, and positive attitude to, rights by PWID alone is therefore not likely to be sufficient to prevent rights abuses and to uphold the FREDA principles within a PWID’s lived experience. A person’s attitudes, subjective norms and perceived control over situations can influence their behaviour (Ajzen & Fishbein 2005). Where attitudes are negative and reinforced by toxic organizational cultures, they may lead to malpractice, abuse and breach of HR (Tarulli et al. 2004; Mencap 2012). Evidence suggests that training can positively shift staff attitudes to HR and PWID (Rose & Holmes 1991; Kinderman 2004; Kinderman & Butler 2006; Redman et al. 2012), promote

Figure 1 Evolution of FREDA values from UK legislation. © 2014 John Wiley & Sons Ltd

Journal of Applied Research in Intellectual Disabilities

positive practice and client-centred planning (Tarulli et al. 2004; Doody 2009) and may be most effective when PWID are active coproducers (Boyle & Harris 2009), engaged in more reciprocal and equal partnerships with healthcare professionals to design and deliver services (Roberts et al. 2011).

People with intellectual disabilities and HR education Internationally, the ‘3Rs Project’ (Rights, Respect and Responsibility) is perhaps the most widely known HR training resource for PWID (Owen et al. 2003; Tarulli et al. 2004; Tardif-Williams et al. 2008; Owen & Griffiths 2009). In the UK, the need for HR education is implicitly recognized by the production of various educational resources for PWID (Klug 2008; Northfield 2009). However, many of these ‘easy read’ materials (Clark 2002) are unclear to PWID, few have been coproduced by PWID (Roberts et al. 2011), and their effectiveness is assumed rather than evaluated. HR educators recommend that all service-users, carers and professionals receive accessible and interactive education and training on the nature of HR (Tarulli et al. 2004; Carlson & Kittay 2010), and on identifying and addressing breaches (Owen et al. 2003). Examples of such initiatives could include game-based techniques that may be less alienating than other educational methods, in particular for groups denied learning opportunities either through restricted life experiences (Tarulli et al. 2004) or with reduced access to formal educational processes (Nussbaum 2007). Arguably, it is difficult for people to claim and have upheld rights they do not realize they have.

Board games as teaching tools Board games as pedagogical tools may present opportunities to learn about specific topics, improve perception and memory skills, and use problem-solving, reasoning, visuo-spatial skills, social engagement and interaction abilities with other players (Salmina & Tihanova 2011). It is unclear how far they help develop generalized intellectual skills beyond a specific domain (Gobet et al. 2004); however, Lee et al. (2010) demonstrated that structural changes in the brain in people regularly using board games, increasing neuroplasticity. Previous researchers (Neistadt et al. 1993; Streng 2008; Pon 2010; Collins & Griess 2011) have also suggested that board games may be useful for educational purposes, encouraging self-reflection and discovery (Caballero-Coulon et al. 2007), expressing © 2014 John Wiley & Sons Ltd

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emotions about a topic, discussing issues and concerns, facilitating understanding and disclosure, and ultimately positively changing attitudes and beliefs about sensitive topics (Van der Stege et al. 2010). Within an intellectual disability context, only Wiersma (2011) attempted to evaluate a series of interventions, including a basic four colour board game, to teach four PWID with limited communication abilities about their HR. Results suggested an increase in awareness of HR violations when applied to personal examples, but not when directed at videos or role plays. Results also suggested that by using the board game, participants learned many additional skills such as socializing, turn taking, sequencing, forced choice, free choice and counting.

Local service developments and ‘FREDA Challenge’ Serious board games have been used creatively by services to develop players’ understanding of legislation. For instance, a self-advocacy organization run by and for PWID produced ‘Decisions Decisions’ to teach PWID about the Mental Capacity Act (see http:// www.speakup.org.uk/). Internationally, serious board games have been used to teach the general population about HR (Amnesty International 2002; Flowers et al. 2009; Hamid 2011; Ogut et al. 2011; Vormen 2011). However, no serious board game on HR had previously been developed for PWID or for the UK legislative context. The current service aimed to address this by developing a HR board game called ‘FREDA Challenge’, designed to teach staff and PWID about HR in a pleasurable, engaging and interactive way. Roberts et al. (2013, p. 17) has briefly provided a background to the development of ‘FREDA Challenge’. The entire board game and current title were created through coproduction with a team of PWID, people with brain injury and professionals working in intellectual disability services. Some of the features of the game are included in Figure 2 and are described more fully within the methodology section.

Rationale for the evaluation The development of the board game followed from a national initiative to coproduce with PWID resources about HR, such as a booklet on FREDA principles (Roberts et al. 2011), training packages for professionals and care staff (Redman et al. 2012), a didactic DVD and the board game (Roberts et al. 2013). The initial board game prototype required piloting to evaluate its efficacy


Figure 2 Some features of the FREDA Challenge board game. © 2014 John Wiley & Sons Ltd


in educating people (with or without intellectual disabilities) about HR to inform and to provide improvement areas for the finalized version. Given the lack of previous evidence, the current study was exploratory and aimed to look at: • Whether there was any change in knowledge of HR for PWID and their carers after playing ‘FREDA Challenge’? • Whether there was any change in PWID’s or carers’ attitudes toward HR after playing ‘FREDA Challenge’? • What were players’ levels of satisfaction with ‘FREDA Challenge’ after playing the board game?

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written format, people who had never seen or played the board game previously and carers/professionals working with PWID in either paid or voluntary capacity. The main exclusion criteria were people without any verbal and reading skills and under 18 years of age.

Ethical approval This project was reviewed and approved by the Institutional Research Board, service managers, and the organizations’ managers where data collection took place.

Methodology

Design

The current study occurred within a community intellectual disability team within a NHS Mental Health Trust in the north-west of England providing specialist healthcare services for PWID and their families/carers. Participants were drawn from of this lead organization.

The study used a within/between-groups design, allowing measurement of changes in attitudes and knowledge after the intervention.

Participants Participants were 18 PWID and 13 carers/professionals from four-third sector and statutory sector partners providing voluntary support for PWID, from both NHS and third sector organizations. Services provided individual and group support for PWID with a variety of complex needs, either living in community or inpatient residential settings. Full details about participants’ level of intellectual disabilities and cognitive abilities were not available due to limited accessibility to personal records and anonymity. Neither were these details collected due to the format of the study and limited access to the PWID. Nonetheless, it is worth mentioning that all participants with intellectual disabilities were in receipt of specific services for PWID. As such, there was an assumption within the current study that all PWID had been previously screened for intellectual disability needs, as per UK professional guidelines (British Psychological Society 2000; Webb & Whitaker 2012), and therefore met the inclusion criteria for the current study as having an intellectual disability requiring specialist services. Carers were directly connected with PWID, either as paid professionals or voluntary family members who were attending services at the time data were collected. The main inclusion criteria for this study were PWID attending the above services, people able to provide informed consent either verbally or in © 2014 John Wiley & Sons Ltd

Measures An ‘Attitudes to Human Rights questionnaire’ was originally developed within current services, due to an identified lack of relevant attitude measures (Redman et al. 2012). Redman’s study evaluating a HR training initiative for healthcare staff working within intellectual disability services reported internal consistency alpha values of 0.84 and 0.77, pre- and post-training, respectively. The original questionnaire was adapted for the current study to make it more accessible to people taking part in the evaluation following easy-read guidelines (Clark 2002), but this adaptation was not coproduced due to time and resource constraints. As such, a total of ten items reflected attitudinal affect towards HR, on which participants could rate their agreement levels on a five-point Likert-type scale ranging from ‘agree very much’ to ‘disagree very much’. Examples of items include: ‘We should protect people’s HR, whoever they are’, ‘I only feel like I have to respect HR when other people tell me to’, ‘It is important to treat everyone with fairness, respect, equality, dignity and autonomy’ and ‘Human rights are important for everyone’. Four of these items were reverse scored (items 4, 5, 6 and 8). The attitude score was obtained through the sum of each individual item scores (minimum 10, maximum 50). Higher scores represented more favourable attitudes toward HR. Participants completed the same questionnaire before and after playing the board game. The alpha coefficient for the current study was 0.70 and 0.79, pre- and post-board


game, respectively, which are ideal values for this type of scale (DeVellis 2003). A HR quiz was also developed within the current services and used in the Redman et al. (2012) study. Redman did not report alpha values, but mentioned the likelihood of some ceiling effect based on high results pre-training. The original quiz was adapted for the current study for accessibility to PWID; however, this change was not co-produced due to time and resource constraints. The adapted version contained only nine multiple-choice questions, such as: • Fair treatment is a right for: ○ everyone who is employed and pays tax; ○ everyone who is a legal citizen; ○ everyone, no matter who they are. People who are disabled: • have less rights than other people; ○ have more rights than other people; ○ have the same rights as everyone else. ○ Which of these is not a human right? • The right to freedom of expression. ○ The right to no punishment without Law. ○ The right to have more rights than everybody ○ else. Participants were given one point for every correct answer and the final score was the sum of correct answers (minimum zero, maximum nine). High scores indicated higher levels of HR knowledge. Participants completed the same quiz before and after playing the board game. For this study, alpha coefficient values were 0.89 and 0.94, pre-and post-board game, respectively. A satisfaction questionnaire, consisting of five questions, was presented to all participants at the end of the session. The first question asked participants to rate their experience of playing the game on a continuum scale from 1 to 10 in terms of ‘complexity’, ‘enjoyment’ and ‘stimulation’. The other four questions were openended, asking participants: ‘What did you like the most about the Board Game?’, ‘What would you change about the Board Game?’, ‘Would you recommend this Board Game to a friend? Why?’ and ‘What lasting benefits did you get from attending the game session?’ Answers to these questions were analysed for emerging themes (Braun & Clark 2006). For participants who were unable or did not wish to individually complete this questionnaire, their satisfaction was evaluated verbally as part of group discussion following a person-centred thinking approach to evaluate a particular experience (Sanderson & Goodwin 2007; Neill et al. 2009; Hall & Duperouzel 2011).

Intervention and stimulus material ‘FREDA Challenge’ was the intervention and stimulus material. It follows a circular approach (similar to Monopoly), whereby players move around the board collecting ‘FREDA’ cards, facing rewards and consequences for falling into particular squares on the board. The game takes a race approach, where chance and competition are also important features. Players aim to collect a set of ‘F’, ‘R’, ‘E’, ‘D’ and ‘A’ cards by seeking the advice of ‘FREDA’, a human female character, who personifies HR values in response to rights-based dilemmas contained in short stories/vignettes. Each FREDA card contains a specific vignette or story relating to the core principles of fairness, respect, equality, dignity and autonomy. Players are encouraged to discuss these vignettes in the group and give alternative views for each story. A typical FREDA vignette would be ‘Jo lives with another lady but did not choose to live with her. Jo wanted to live on her own. FREDA says she should have been given a choice’. There are also ‘Bright Idea’ cards with factual statements about HR. Players are asked to discuss these ‘bright ideas’ and learn more about HR, for example, ‘No one can assume that you cannot make a decision for yourself just because you have a learning disability’. Once a person has collected at least one card for each FREDA principle, they can try reaching the middle of the board to win the game.

Procedure Data were collected on different days from different intellectual disability voluntary organizations around the north-west of England. Each group had a combination of PWID, carers and/or professionals. Participants were informed about the board game evaluation 1 week in advance and consented to being approached. On the day of data collection, participants were briefed and informed consent was collected. Participants were first provided with measures to complete and then introduced to the game format and rules. Participants were asked to play the game in mixed groups of two to five players each (as per board game guidelines). People could play in pairs if they so wished. Participants decided when to start and stop the game. After playing the game, participants were provided with the outcome measures. The entire session lasted about two hours each time, with a refreshment break in between. Whenever necessary, support was provided to PWID in completing the measures, by reading each statement and explaining its meaning. © 2014 John Wiley & Sons Ltd


Data analysis Data were analysed with the statistical package for social sciences (SPSS v.19) for descriptive and inferential statistics. Due to low sample size and heterogeneity of the sample, parametric assumptions could not be satisfied in terms of normal distribution of the data. Non-parametric data analysis was performed by using Mann–Witney U-test to compare data from carers and PWID and Wilcoxon signed-rank test to compare data pre- to post-board game. Data emerging from open questions within the satisfaction questionnaire were thematically clustered (Braun & Clark 2006) to identify areas of the game that were most effective to participants and those areas that needed changing.

Results Demographics Thirty-one people agreed to take part in this study, representing a 94% response rate. Eighteen people selfclassified as ‘service-users’ (PWID), whilst the remaining 13 were ‘carers’ and/or ‘professionals’. Carers were either paid or unpaid, but this difference was not made explicit within this evaluation. Some carers also selfidentified as professionals. Due to low numbers in noncarer ‘professionals’ (n = 2), this category was collapsed with the carer’s category for purposes of analysis. Not all participants completed all outcome measures, so each measure is described below with the number of people that agreed to complete them. Participants that did not complete the measures provided feedback as part of group discussion. Table 1 presents additional demographical details.

Attitudes towards HR Eighteen participants (61% response) completed the ‘Attitudes to HR questionnaire’ at both time points. Results suggest that PWID and carers alike had an overall positive attitude towards HR both before and after playing the game. A Mann–Whitney U-test revealed no significant difference in attitude scores between groups (see Table 2). When analysing the data for within-group significance (pre- to post-results), a Wilcoxon signed-rank test revealed a statistically significant increase in the attitude score in PWID after playing the board game (z = 3.18, P = 0.001) with a large effect size (r = 0.88). The median score on the attitudes questionnaire increased pre- (Md = 38) to © 2014 John Wiley & Sons Ltd

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Table 1 Demographics of all participants

Gender Male Female Total Age Mean age Age range Standard deviation Ethnicity White British White other Mixed ethnicity Black/African/Caribbean English main language Yes No Health needs1 Intellectual disability Learning difficulty Mental health needs Physical disability Physical health needs Other 1

Overall

Carers and/or professionals

PWID

20 11 31

6 7 13

14 4 18

41.5 21–77 15.25

41 21–62 15

42 21–77 15.83

27 2 1 1

12 – – 1

15 2 1 –

30 1

13 –

17 1

13 14 4 1 2 1

– 1 – – 1 –

13 13 4 1 1 1

More than one category may apply to each participant.

Table 2 Between-groups statistical results of ‘attitude’ scores n Before game PWID 13 Carers 5 After game PWID 13 Carers 5

Mean

Median

Significance level

38.2 42.2

38 41

U = 18, z = 1.39, P = 0.17, r = 0.3

43.2 46

44 47

U = 17, z = 1.54, P = 0.12, r = 0.4

post-game (Md = 44). No statistically significant difference was found for carers between pre- and post-game responses (z = 1.83, P = 0.07, r = 0.81).

Knowledge about HR Thirteen participants (42% response) completed the ‘HR quiz’ at both time points. A Mann–Whitney U-test revealed that level of knowledge on HR of the ‘carers group’ was significantly higher than the ‘PWID group’ both before and after playing the game (see Table 3).


Table 3 Between-groups statistical results of ‘quiz’ scores

Before game PWID Carers After game PWID Carers

n

Mean

Median

Significance level

8 5

3.5 7.4

4 7

U = 8.5, z = 2.41, P = 0.02, r = 0.57

8 5

4.6 8.2

7 8

U = 10.5, z = 2.25, P = 0.02, r = 0.5

When analysing the data for within-group significance, a Wilcoxon signed-rank test revealed a statistically significant increase in the HR knowledge score in PWID after playing the board game (z = 2.39, P = 0.02) with a large effect size (r = 0.66). The median score increased from pre- (Md = 4) to post-game (Md = 7). No statistically significant difference was revealed for carers from pre- to post-game responses (z = 1.63, P = 0.10, r = 0.73).

Satisfaction with the board game Nineteen participants (11 PWID and 8 carers, 61% response) completed the ‘Satisfaction questionnaire’ after playing the board game. All participants appeared highly satisfied with taking part in the evaluation and playing the board game (Figure 3). No statistically significant difference was found between groups on any of the three responses. Moreover, 68% of participants stated they would recommend the

game to other people to learn about HR. PWID scored lower in the ‘simplicity’ question and some participants found the game ‘too busy’ and ‘complicated’. Responses to the four open questions from the satisfaction survey and group discussion resulted in four themes relating to their subjective experiences (Table 4).

Discussion The overall aim of this study was to evaluate a HR board game as an educational tool for PWID, carers and professionals in relation to attitudes and knowledge about HR, and satisfaction with the experience of playing the game. Results suggest high levels of knowledge about and attitudes towards HR in the carers/professionals group and an increase in positive attitudes and knowledge of HR in the PWID group only after playing the game. Results also suggest that, on average, participants felt the game was simple and stimulating and enjoyed the experience. Findings may be applicable with other populations whose HR are also neglected or who require accessible information to understand their rights. Previous research (Neistadt et al. 1993; Streng 2008; Pon 2010; Collins & Griess 2011) has used board games to elicit learning, emotional regulation and attitude change, but not in an intellectual disability or HR context. As such, the results are unique in the HR research arena. Findings from this evaluation seem promising and appear consistent with those of Rose & Holmes (1991) and Roberts et al. (2011), whereby a group environment and open discussion about HR

Figure 3 Mean satisfaction scores from each participant group. © 2014 John Wiley & Sons Ltd


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Table 4 Emerging themes Aspects or dimensions of game Appearance and accessibility

What’s working

What needs to change

• • •

• • •

• • Functionality

Social and emotional

Memorable game name Pleasant and attractive colours Start of game is fair, ‘whoever strikes the highest number starts the game’ Dice is simple and has numbers instead of dots Some cards are consistent with symbols on the board

• • • • •

Easy to understand, similar to other board games Good to read cards aloud, includes everyone in. Rules are simple and easier to understand People remembering their turns People can play in teams

• • • • •

Chance and competition motivates people to play Game encourages people to interact People learn from each other PWID can relate to the stories in the FREDA cards Meeting new people in similar circumstances

• • • • • • • • • • •

Educational and intellectual

• • • • •

Reading the cards allows a sense of purpose and responsibility in the game – increased confidence Opportunity to get introduced to new concepts, such as FREDA Carers increased awareness about HR in PWID Helps people think about human rights more actively Carers actively ‘discovering new facets’ in PWID

provide a platform to increase knowledge and improve positive attitudes to HR.

Attitudes towards HR Results demonstrated that overall ‘attitudes to HR’ scores in both carers and PWID were equally high before and after playing the game. There was no statistically significant difference between groups on these scores, although carers’ mean scores were descriptively higher than those of PWID. When comparing data before and after playing the game, scores of PWID significantly increased, whilst scores from carers increased but not significantly. Carers’ scores were already high prior playing the game, with an average score of 42.2 out of a maximum of 50, and © 2014 John Wiley & Sons Ltd

• • • •

Bigger board with larger writing Simplify board and cards Add playing pieces, such as other objects, colour discs or geometrical shapes Mats need to be bigger to place each FREDA card in its place Larger dice and pieces Name can be confusing Add magnetic board and playing pieces A rotating base to allow each player to face their piece as they play A dice shaker to help people throw the dice, rather than putting it down on a specific number. Need more FREDA cards to prevent ‘running out’ People get bored after a whilst when reading the same FREDA cards all over Competition – ‘don’t like the idea of winners and losers in the game’ FREDA cards should ask people to discuss a bit more each example People could swap teams as part of the game structure FREDA mats could have a brief explanation of what each FREDA letter stands for, and what it means, for people to remember as they play Comprehension of cards limited, especially when cards have too much information FREDA needs more explaining before people play the game FREDA concepts hard to grasp, especially when people have not heard of them before

this increased to an average score of 46, thus suggesting a positive increase in attitudes towards HR. These are curious findings, in particular, since attitudes tend to be stable constructs that require time to change and are not usually affected by a single intervention (Peris et al. 2008; Redman et al. 2012). One explanation could be drawn from attitudinal research, in particular on the difference between explicit and implicit attitudes (Nosek & Smyth 2007; Nosek & Banaji 2009). Explicit attitudes are more easily changeable than implicit (Greenwald & Banaji 1995; Nosek et al. 2007a; Peris et al. 2008), because they are part of our conscious domain and self-reported. On the other hand, implicit attitudes are unconscious and more automatic. The measure used herein only captured self-reported levels of attitudes, which are more susceptible to social


desirability, increases in awareness, introspection and intentionality (Ranganath & Nosek 2007). It is possible that PWID’s higher knowledge of HR before the game may have influenced their post-game attitude scores, which was facilitated through the interaction with other participants. In addition, attitudes can also change through ‘heuristic processing’ (Chaiken 1980) and emotive experiences (Breckler & Wiggins 1992), as people retrieve information from memories and life experiences, thus only requiring limited cognitive effort to process information and connect with the vignettes given within the FREDA cards whilst playing the game in a group setting. Such cues in people’s social and physical environment can elicit attitude change (Carlson & Kittay 2010), which can be supported by peer validation (Vaughan 2005), social evidence or involving figures of authority (Chaiken 1980), just like FREDA.

Knowledge of HR Scores achieved by PWID demonstrated an increase in knowledge after playing the board game, despite the tool appearing complicated for some participants, due to font size and the multiple-choice layout. That such knowledge increased may be a product of the dynamic and interactive process of playing the board game, as people discussed the case vignettes in the FREDA cards, potentially internalizing concepts and relating the stories to their own life experiences (Roberts et al. 2011). The scores demonstrate that learning about HR can result from a socially based intervention as well as from a dynamic and interpersonal process (Merriam & Caffarella 1991; Rogers 2003; Merriam et al. 2007). Redman et al.’s (2012) findings indicate that it is possible to significantly increase knowledge about HR after a single training session, but this had yet to be achieved with PWID. This knowledge dynamic was observed from the onset of this evaluation, whereby people would start playing the game apprehensively, appearing more relaxed as the game progressed after realizing that knowledge of HR was already present through their personal experiences and facilitated by the process of playing the board game. Such epiphanic moments recall Kinderman’s (2007) observations that HR are ‘emergent from our collective relationships and obligations’ (p. 226) and only exist in the context of interpersonal relationships (Nussbaum 2007). As such, ‘knowing’ about HR as an abstract concept is less meaningful than ‘knowing’ about HR from a personal and experiential perspective. The present authors believe that in this respect, the board game takes HR from abstract realms

into real and experiential discussion points and appears to provide participants with social validation and empowerment to speak up about fair/unfair treatment, by giving them a vocabulary they can use to identify HR violations (Carlson & Kittay 2010).

Satisfaction with the board game Satisfaction and self-identification with an activity are important factors for engagement, motivation and learning (Deci & Ryan 1985). PWID and carers equally presented positive feedback about the experience as stimulating and enjoyable. These aspects of the learning experience were observed to be fundamental for participants’ interaction in the activity, in particular as different people were playing the game together, independently of their level of ability and cognitive skills (Ogut et al. 2011). In combination with the results suggested by the ‘attitudes’ and ‘knowledge’ measures, data may point in the direction of the idea that ‘Integrated Regulation’ (Deci & Ryan 1985) occurred in most participants, whereby the learning from the game is fully assimilated with people’s beliefs and selfevaluations on HR, thus making it an implicit awareness that can be easily translated into real life experiences. The experience could have been potentially under-stimulating for carers or a very difficult task for PWID, but this dilemma was conquered with the interaction achieved and the ‘fun’ component of playing a competitive board game in a group setting. Furthermore, carers reported the opportunity to ‘discover new facets’ in PWID, and they were unaware of up to that point (Table 4). Some carers were surprised by the fast adaptation of PWID to a new game and with the concept of FREDA, as initially they were ‘expecting’ PWID to quickly lose interest and motivation in the game. As previously found by Finlay et al. (2008), such carers’ revelations are quite common when people underestimate the abilities of PWID. They found that when carers have opportunities to use games with PWID, there is an increase in competence and participation in the client and an improvement in carerclient relationship. However, the results also suggest that some participants may have found the game ‘too busy’ and ‘complicated’ and 68% would recommend the game to other people. These results create scope to improve the game, to make it more accessible to other people with more severe cognitive impairments or with limited verbal and reading skills. In particular, attention is needed to eliminate the possibility that the game may be used to further segregate people ‘who can play’ from © 2014 John Wiley & Sons Ltd


those ‘who cannot’, thus being only a privilege to those with ‘sufficient intellectual powers’ (Rawls 1980, p. 546).

Study limitations Donald (2012) suggests that there has been a lack of coherent processes, and accepted measures, to evaluate HR-related knowledge and attitude shifts. A seeming resistance within the HR community using quantitative processes is partly because HR initiatives have a strong moral imperative and ‘tap into areas of taboo’. The scant available methodologies around attitudes and approaches towards HR are mostly based in a nonintellectual disability context or may even be unsuitable for adaptation for PWID. Thus, the main methodological issue was the lack of suitable measures of attitudes and knowledge about HR, and adaptation of existing ‘nonvalidated’ measures was necessary. The heterogeneity of the sample required measures of attitude that were neither too simple nor very complicated that would not produce ceiling or floor effects, respectively. However, high scores achieved by participants in this study, potentially suggest that the measure used was too simple thus leading to a ceiling effect (similar to findings from Redman et al. 2012). Despite these measure adaptations, many PWID encountered a degree of difficulty when reading and utilizing the scales without having some type of reading support from their carers or other duty staff. These limitations were a potential hindrance to people agreeing to complete the questionnaires, why may explain the lower response rate in the questionnaires completion stages. However, participants declining the completion of the questionnaires had the opportunity to provide verbal feedback following a person-centred thinking approach of evaluating a particular experience (Sanderson & Goodwin 2007; Neill et al. 2009; Hall & Duperouzel 2011). Implications of the findings are also limited by the small sample size, response rate to individual measures, the pilot nature of the study and the lack of long-term follow-up to establish whether increased HR knowledge and positive attitudes to HR were sustained over time. Additionally, the present authors did not collect PWID cognitive/reading abilities, level of intellectual disability, and did not control for the type/quantity of support PWID received from their carers, so the present authors are unsure of the extent to which answers given by PWID may have been influenced by those of their carers. The present authors considered the board game to be a complicated construct, thus requiring people to spend valuable time on learning about the process of playing it © 2014 John Wiley & Sons Ltd

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(i.e. rules, direction, using FREDA cards) potentially compromising their learning about HR (similar to findings in Wiersma 2011). Not all of those playing the game agreed to participate in completing the evaluation measures, which may have introduced some selection bias, as to which some people refused such a task. However, based on other observational evidence gathered on the day, and detailed in the satisfaction questionnaire, it appeared that most participants did gain further awareness and insight into the concepts of FREDA and HR. In particular, participants overtly personified FREDA to discuss and reflect on FREDA HR vignettes that were part of the board game structure (as in Roberts et al. 2011). Unfortunately, the present authors did not capture such rich dialogues, whilst people were playing the game and discussing their knowledge, attitudes and beliefs about HR infringements.

Clinical implications The use of board games as teaching tools has long been established (Caballero-Coulon et al. 2007; Van der Stege et al. 2010; Salmina & Tihanova 2011). Despite the study limitation of the current study, the results very tentatively suggest that there is utility in using the board game to elicit learning about HR in PWID, carers and other healthcare professionals. The study provides an opportunity for services to revisit assumptions about PWID and HR education, in particular as learning about HR is not bound to ‘disability, but rather from a lack of the kinds of experience that are necessary in order to learn about them’ (Sobsey 1994, p. 196). This brings an assumption that active learning stimulates retention in knowledge, whereby social environment, peer support and access to a person with expertise can validate motivation to learn (Vygotsky 1978; Langone et al. 2003; Whitehead et al. 2011). People seem to learn (know) better through interpersonal contact, by using senses and intuition rather than rational analysis or objectivity (Vaughan 2005), where moral/ethical knowledge about HR is more relevant to PWID than procedural/technological knowledge (Tarulli et al. 2004). The dilemma-based learning of the board game may bypass the need for people to understand the individual technological narrative of HR yet develop an interpersonal and moral perception of how HR work (Doody 2009).

Presentation of findings Results from this evaluation were presented to the service and participants, as part of the HR coproduction


initiatives that have driven the development of the board game. The results are relevant for further adaptations to the game, to make it more accessible and attractive to all people, independently of their ability levels.1 As part of the coproduction process and to honour the FREDA standards within this evaluation, an ‘easy read’ report was provided to all participants. With this, the present authors aimed at demonstrating to participants that their contribution was central to the design of the final version of the game. The present authors also aimed to raise further interest in the game and elicit more research interest in the area.

Reflections on future research and recommendations Further research is needed in this area, in particular, to develop a robust paradigm and measures for detecting change around HR knowledge and attitudes in PWID and their carers. In particular, there is a need to measure more effectively how the game interacts with different levels of intellectual disabilities, by expanding the sample size and comparing the game with other methods of HR education. Although our preliminary findings suggest that the game requires further simplification and adaptation, the present authors do not know how these would affect people with severe intellectual disabilities, or people with very limited verbal communication and low reading skills. So, the present authors suggest that any changes to the game (or even the creation of a simplified version) are coproduced and copiloted by PWID. Future research may also want to explore whether any additional social skills are gained, including turn taking, interpersonal communication and other cognitive skills including sequencing (Wiersma 2011). This could include video recording or observing people whilst they play the game, to capture subtle changes in narratives around social capabilities and cognitive skills.

the board game appeared to increase positive attitudes and provide awareness of HR in PWID, but is also elicited social interaction and discussion between carers/professionals and PWID about HR. Participation on this evaluation remained a positive experience to all participants involved. In particular, the response rate demonstrates a positive view that HR is an important topic to people, and there is a need to consider the board game as an alternative method of HR education that goes beyond traditional pedagogical approaches. The board game itself remained an appealing process to all participants, where ‘fun and play’ remained a central feature of the learning process, and people with moderate levels of intellectual disabilities were still able to maintain the required concentration and motivation for the allocated time. Participants suggested some improvements to the game for social inclusion and accessibility of people with more severed intellectual disabilities, and these suggestions have been passed on to the services that developed the game.

Acknowledgments The present authors would like to thank the following people who in no particular order were involved in this project in some way or another from the onset: Dr Richard Whitehead, Lindsey Dyer, Ellie Keen, Anna Sharp, Gill Goodwin, Dr Sam Townsend, Vivien Mansfield, and Beth Larham and most importantly, to the service users involved in developing the game: Keith, Tina and Martin, and finally all the people at ‘Mencap’, ‘Options’ and ‘FREDA Fighters Group’ who took part in this study. Finally, and equally importantly, the present authors would like to thank the various reviewers of this paper for their invaluable guidance and support throughout the conception, implementation and write-up of this project. Without the support and participation of all of these people, this study would not have been possible.

Conclusion A HR board game was evaluated in a group of PWID and carers/professionals by measuring changes in attitudes and knowledge of HR after playing the game. Overall, despite significant methodological limitations, 1

As feedback from this study was passed on to the services that developed the board game, a more simplified version of the game was created. Also, a ‘giant version’ of the game was developed to allow people to play the game as part of a room or garden activity where individuals are the playing pieces of the game. At present, this newer version is under evaluation.

Conflict of interest No conflict of interests have been identified.

Source of funding Not applicable for this study.

Correspondence Any correspondence should be directed to Miguel Montenegro, Clinical Psychologist, Mersey Care NHS © 2014 John Wiley & Sons Ltd


Trust, Rebuild Clinical Business Unit, Olive Mount, Old Mill Lane, Liverpool, L15 8LW, UK (e-mail: miguel. [email protected]).

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A systematic review and synthesis of outcome domains for use within forensic services for people with intellectual disabilities.

Human rights of children with intellectual disabilities: comparing self-ratings and proxy ratings.

Predicting disabilities in daily functioning in older people with intellectual disabilities using a frailty index.

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Increases in knowledge following a course of sex education for people with intellectual disabilities.

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