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BEFORE

Zoe’s Arthrogryposis and Person-Environment Fit

Introduction

This paper focuses at Zoe, a participant of the ‘Born to be Different’ documentary. She has a condition called arthrogryposis that restricts here movement. Zoe has undergone thirteen surgical operations so that here mobility and ability to engage in occupations could be improved. In the ‘Born to be Different’ documentary, independence is main aim pursued by Zoe (C4, 2020). Zoe is enrolled at a law course at a university but she declined any professional help. Zoe is transactionally affected by here environment behaviour. The effeteness of her performance is depend on how well her intrinsic factors align with her extrinsic factors and a particular occupation (Law et al., 1996). In the past, Zoe did not take any help from others. She mostly rejected occupational therapy interventions, which she saw as a threat to here independence. For example, Zoe refused help in developing her handwriting skills. Form the reading, I have also noticed that personal independence is very important to people with disabilities and it plays a important cognitive and psychological role in a person’s occupational performance.

 

Person: Strengths and Weakensses 

In the given case study, it is stated that the use of the assistive equipment helps Zoe to make her occupational performance better even though these instruments not being made specifically for her condition. Still, the use of this equipment increase her occupational performance and helps her to follow here routines (Muniz et al., 2016). I have also discovered from the documentary that Zoe puts on socks with a help of a device which has been traditionally used by older people with arthritis (C4, 2020). Zoe faced a mental health crisis that was caused by bereavement but she did not asked for any help from here university councillors. On the contrary, she has decided to leave her studies for a while to recover from her loss and restore her mental well-being. In the documentary, Zoe also makes it clear and the process of recovering from surgeries is a difficult process that could cause new problems and the need for new surgeries. Zoe describes this process as a “weird cycle” (C4, 2020). I think that the carers of Zoe did not manage to add to her motivation to participate in new surgeries (Law et al., 1996). Here microsystem such as seeing other children with disabilities and interacting with them motivated Zoe to seek for as much independence as possible (Bronfenbrenner, 1979).

 

Occupation: Strenghts and Weaknesses

Zoe is not totally disabled and she can perform some activities on her own. Speaking more precisely ZOE can cook, clothe herself, socialise and study independently of any carers (AOTA, 2014; C4, 2020). Zoe admits that meeting with new people and establishing social relationships with them is a difficult and challenging process. These difficulties do not stop here because she actively participates in the ‘Born to be Different’  community and she has previously established friendships with two other members of this community, namely Shelbie and Emily (C4, 2020). I think that Zoe’s friends add to here occupational performance by providing here with emotional support. In accordance with Zoe, films and TV series do not portray disabled udults as beautiful and attractive individuals, and this poses additional barriers to forming romantic relationhsips (Santrock, 2007; C4, 2020). I think that this factor certaintly deprives Zoe of a possible source of carers who could improve her life and occupational performance. But as I mentioned before, Zoe has refused interventions that involve attaining help from personal carers (C4, 2020).

 

Physical Environment Strenghts and Weaknesses

Zoe is an arthrogryposis patient and she is able to use voice recognition software or text prediction instruments in order to avoid using a keyboard or a touchscreen when using a smartphone or a computer (ArthrogryposisUK, 2020). As I noted previously in this report, Zoe actively uses equipment that was originally designed to help those individuals who belong to an older population with arthritis. Zoe uses this equipment to put on her socks (C4, 2020). The failure of doctors to detect dormant genes that could cause  arthrogryposis means that surgical interventions targeting individual limbs or joints are the most effective medical interventions available to Zoe (Dahan-Oliel et al., 2019; Hall et al., 2019). To use a washing machine, Zoe needs to use her feet in addition to her hands.

 

Psychosocial Environment Strengths and Weaknesses

What can provide positive reprsentations of arthrogryposis patients? The answer is documentaries such as ‘Born to be Different’. Such documentaries improve Zoe’s exosystem (McGrail et al., 2020). Zoe’s family memebers are supportive of her desire to be independent and help Zoe to select what surgical interventions should be done to improve her occupational performance (C4, 2020). From the case study, I must say that the exosystem of Zoe in my opinion lacks positive portrayals of arthrogryposis patients in mass media (C4, 2020). Because of this serious drawback, Zoe faces difficulties in socialising and hanging out with other children (Bronfenbrenner, 1979). Zoe faces strong   challenges to her microsystem, indluding the loss of her grandmother and Shelby, her friend from the ‘Born to be Different’ community, just to name a few (C4, 2020).

 

 

Legislative Environment Strenghts and Weakness

The UK government provides monetary assistance to arthrogryposis patients; the weekly payments could be as high as £151 (GOVUK, 2020). The social model of disability in the UK provides those individuals living  with disabilities and various types of impairments by giving them the legal right to request the removal of barriers to their  occupational performance (Scope, 2020). This means that Zoe can, for isntacne, request the university to provide voice assistance options to all academic courses. The Equality Act of 2010 states that employers who fail to provide equal opportunities to disabled people can still pursue the defence of protecting  public money (Moses, 2017). Zoe lacks legal protection if she faces discrimination by disability at her future places of employment. In accordance with the ONS (2018), the difference between the wage medians of disabled and non-disabled workers equals to 12.2% in favour of non-disabled employees. Moreover, occupation and qualification only account for 25% of this difference.

 

 

Recommendations

By taking the recommendations from Babik et al. (2019), it would be nice if Zoe is provided with an exoskeleton for her hands and feet. Such a technology enables antigravity use of upper limbs, help adults with arthrogryposis like Zoe to improve their occupational performance (Wagner et al., 2019). The UK, nonetheless, lacks any government-backed schemes and programmes allowing arthrogryposis patients to evaluate their condition and request the provision of exoskeletons addressing their needs. Zoe could perceive adapting to arthrogryposis as a threat to her independence. Requesting a personal carer for Zoe could elicit the feelings of shame and anxiety for needing to rely on someone else’s help (C4, 2020). To address this perceived problem, cognitive-behavioural therapy (CBT) or similar forms of interventions could be recommended for Zoe. This therapy could help in determining whether Zoe’s need for independence indeed puts any threat to her occupational performance. I think that this intervention should focus to increase Zoe’s motivation to participate in other forms of occupational therapy or request a personal carer. I must note that there is no evidence that previous occupational therapy interventions for Zoe focused on her intention and aspiration to work in the law industry (C4, 2020). The skillsets that I previously mentioned are successfully used by self-employed workers (e.g. freelance lawyers, paralegals, and legal secretaries) in the law industry (Lear, 2017).

 

As many previous researchers have recognised, voice-assisted text input tools add to the occupational performance of those individuals who live with disabilities (Koester and Arthanat, 2018). In order to assist Zoe, it would be beneficial to teach her how to use Google Docs Voice Typing, Dragon Professional Individual, Braina Pro or other voice-assisted input software suites. This task could be assigned to an occupational therapist. Yes, both Dragon Professional Individual and Braina Pro are licensed software and cost up to $300 but this cost could be covered by Zoe’s personal independence allowance (GOVUK, 2020). I think that a mental health crisis that Zoe is currently facing is caused by the deaths of her friend Shelbie and her grandmother (C4, 2020). To address this problem and help Zoe overcome the crisis, I propose to provide mental health help to Zoe via video-calls (Fletcher et al., 2018). A web camera is needed so Zoe could participate in video-therapy with a mental health professional. It would also be beneficial to renovate Zoe’s home in order to improve soundproofing via the use of mineral wool or plastering (Brugnoli et al., 2018). In my opinion, this would help to avoid noise pollution or distracting Zoe from her self-hypnosis sessions.

 

Conclusion

The findings imply that occupational therapy for arthrogryposis patients such as Zoe need to go beyond outcomes in the domain of physical health. Zoe’s case shows that these patients value their independence and could consider outside help as a threat to satisfying their psychological needs. I think that  occupational therapists need to focus on the provision of skills and equipment that improve the long-term independence of  patients. This aim is particularly significant to protect arthrogryposis patients from discrimination by disability by UK firms. Teaching skills increasing the patients’ employability such as working with voice-assisted text input tools and the ability to be self-employed are highly beneficial for arthrogryposis patients.

AFTER

Zoe’s Arthrogryposis, Person-Environment Fit and Recommendations for Future Interventions

  1. Introduction

The present analysis focuses on the case of Zoe, a participant of the ‘Born to be Different’ documentary. Zoe’s arthrogryposis means that her movements are severely restricted; Zoe has required 13 surgical interventions to improve her mobility and her ability to engage in occupations (e.g., putting on clothes) (C4, 2020; Kiefer and Hall, 2019). According to the ‘Born to be Different’ documentary, independence is the key aim pursued by Zoe (C4, 2020). Despite being enrolled at a law course in a university, Zoe has declined any help from professional carers. While the documentary focuses on Zoe’s physical and psychological environments such as Zoe’s grief for her friend Shelby, this material fails to reference legislation affecting Zoe or socio-economic factors relevant to this case.

 

  1. Case Background

Early (before a patient is 4 months old) surgical intervention is the most significant method for improving outcomes for arthrogryposis patients (TAG, 2020). While such interventions improve independence among patients and reduce the need for carers, early surgical intervention could fail to ensure high occupational performance. To address this, occupational therapists are recommended to provide individual treatment options for children and teenagers with arthrogryposis including voice recognition software suites or text predictions algorithms (ArthrogryposisUK, 2020; Cachecho et al., 2019). However, occupational therapists in the UK have so far not articulated what equipment could be used by young adults with arthrogryposis in the absence of professional carers as well as what adjustments should be made by universities or places of employment to address the needs of patients with arthrogryposis (ArthrogryposisUK, 2020; Elfassy et al., 2020).

Although long-term outcomes among arthrogryposis patients are typically positive and involve “severe involvement of the upper limbs” (Dubousset and Guillaumat, 2015, p.449), there is no up-to-date empirical evidence on how the above interventions in the UK contribute to the occupational performance of arthrogryposis patients, particularly young adults. To address this gap, the assignment refers not only to the physical and psychological environments but also to legal and socio-economic factors.

 

  1. Assessment

The study uses the PEO model to analyse Zoe’s case.

Figure 1: The Person-Environment-Occupation Model

Source: Adapted from Law et al. (1996, p.9)

According to the PEO theory, Zoe’s behaviour is transactionally influenced by her contexts; Zoe’s occupational performance depends on the fit between her intrinsic factors, extrinsic factors and a particular occupation (Law et al., 1996). However, this approach fails to consider cases in which personal independence is the most significant psychological and cognitive factor determining one’s occupational performance (van Vianen, 2018; C4, 2020). In the past, Zoe has refused help from carers. Zoe could reject occupational therapy interventions that threaten her independence such as a carer helping Zoe to develop her handwriting.

In contrast to PEO, Bronfenbrenner’s model of micro- and macro-systems links personal development to external predictors that shape one’s psychological and cognitive factors.

Figure 2: Bronfenbrenner's Model of Personal Development

Source: Scott et al. (2016, p.1)

While PEO does not rank intrinsic and extrinsic factors, Bronfenbrenner’s framework suggests that immediate families, households and kinships produce the strongest impacts on personal development (Scott et al., 2016; Eriksson et al., 2018a). This theory, nevertheless, fails to consider that the relationships between macro- and micro-systems are not always linear (Bronfenbrenner, 1979; Walker et al., 2019). In Zoe’s case, social norms and attitudes (a lack of disabled role models in romantic fiction) are a strong barrier to forming social relationships despite the positive reinforcement provided by her friends and family (C4, 2020). To address the above gaps, the study uses both the PEO theory and Bronfenbrenner’s model to analyse Zoe’s case.

 

  1. Case Formulation

4.1. Person

Strengths

  • Inventiveness (psychological and cognitive factors).

Zoe can use assistive equipment to increase her occupational performance despite such tools not being made specifically for arthrogryposis patients (Muniz et al., 2016). The documentary demonstrates that Zoe puts on socks with a help of a device traditionally used by older people with arthritis (C4, 2020).

  • Perseverance and independence (psychological factor).

Despite encountering low occupational performance for some tasks (e.g., putting on a coat), Zoe has so far declined to rely on a personal carer. When faced with a mental health crisis caused by bereavement, Zoe has not requested any help from councillors at the university and, instead, has decided to take a break from her studies (Gutierrez and Mullen, 2016; C4, 2020).

Barriers

  • Possible lack of motivation to participate in surgical intervention (cognitive and psychological factors).

In the documentary, Zoe indicates that recovering from surgeries is a difficult process that could lead to new problems and the need for new surgeries; this process is described as a “weird cycle” (C4, 2020). Zoe’s carers have so far failed to improve her motivation to participate in new surgeries (Law et al., 1996).

  • Excessive reliance on oneself (cognitive and psychological factors).

Zoe’s microsystem (e.g., seeing other children with disabilities) motivated Zoe to pursue as much independence as possible (Bronfenbrenner, 1979). However, the lack of a carer means that Zoe’s occupational performance as a student is impaired.

  • Pain in muscles and joints (physiological factor).

For arthrogryposis patients, pain in muscles and joints can lower their occupational performance by threatening their ability to participate in everyday activities (Steen et al., 2018).

 

4.2. Occupation

Strengths

  • Ability to independently participate in different occupations (physiological and psychological factors).

Zoe can cook, clothe herself, socialise and study independently of any carers (AOTA, 2014; C4, 2020).

  • Ability to help and empathise with other disabled young adults (psychological factor).

While Zoe admits that meeting new people and establishing social relationships is difficult, Zoe is an active participant in the ‘Born to be Different’ community and has previously established friendships with Shelbie and Emily (C4, 2020). Zoe’s friends improve her occupational performance by providing emotional support.

Barriers

  • Difficulty forming romantic relationships (psychological factor).

Zoe admits that the failure of her exosystems such as films and TV series to portray disabled adults as attractive and beautiful is a barrier to forming romantic relationships (Santrock, 2007; C4, 2020). This deprives Zoe of a possible source of carers or helpers that could improve her occupational performance.

  • A lack of a personal carer (psychological and physiological factors).

Zoe has refused interventions that involve attaining help from personal carers (C4, 2020). While Zoe can substitute a carer by using specialised tools and equipment, this decision threatens her occupational performance. As an example, Zoe needs to use her feet to handle clothes after using a washing machine.

 

4.3. Environments
4.3.1. Physical Environment

Strengths

  • Ability to use new technologies.

As an arthrogryposis patient, Zoe can use voice recognition software or text prediction tools to avoid using a keyboard or a touchscreen when operating a smartphone or a computer (ArthrogryposisUK, 2020).

 

  • Adapting technologies used by other disabled patients or by the elderly.

To put on her socks, Zoe is currently using equipment originally designed to help elderly patients with arthritis (C4, 2020).

 

Barriers

  • A lack of effective treatment options apart from surgical interventions.

The failure of doctors to detect dormant genes that could cause arthrogryposis means that surgical interventions targeting individual limbs or joints are the most effective medical interventions available to Zoe (Dahan-Oliel et al., 2019; Hall et al., 2019).

 

  • A shortage of household appliances adapted to arthrogryposis.

Zoe’s current living accommodations lack any household appliances that are easy-to-use for arthrogryposis patients (C4, 2020). To use a washing machine, Zoe needs to use her feet in addition to her hands.

 

4.3.2. Psychosocial Environment

Strengths

  • Positive representation of arthrogryposis patients.

Documentaries such as ‘Born to be Different’ improve Zoe’s exosystem by providing the public with positive representations of arthrogryposis patients (McGrail et al., 2020).

  • A high level of familial support.

Zoe’s family is supportive of her desire to be independent and allows Zoe to choose what surgical interventions should be done to improve her occupational performance (C4, 2020).

Barriers

  • A lack of arthrogryposis role models.

Zoe’s exosystem lacks positive portrayals of arthrogryposis patients in mass media (C4, 2020). Because of this, Zoe faces difficulties in socialising (Bronfenbrenner, 1979).

  • Zoe’s mental health crisis.

Zoe faces strong challenges to her microsystem, namely the loss of her grandmother and Shelby, her friend from the ‘Born to be Different’ community (C4, 2020). As such, Zoe’s motivation to participate in occupations (e.g., being a student) is low.

 

4.3.3. Legislative Environment

Strengths

  • Provision of funds to arthrogryposis patients in the UK.

The UK government provides monetary assistance to arthrogryposis patients; the weekly payments could be as high as £151 (GOVUK, 2020).

  • The UK following the social model of disability.

The social model of disability in the UK means that disabled people have the legal right to request the removal of barriers to their occupational performance (Scope, 2020). For example, Zoe can request the university to provide voice assistance options to all academic courses.

Barriers

  • The Equality Act of 2010 fails to protect disabled people.

According to the Equality Act of 2010, employers who fail to provide equal opportunities to disabled people can still pursue the defence of protecting public money (Moses, 2017). Zoe lacks legal protection if she faces discrimination by disability at her future places of employment.

  • A lack of legislation addressing the wage gap between disabled and non-disabled workers in the UK.

According to the ONS (2018), the difference between the wage medians of disabled and non-disabled workers equals 12.2% in favour of non-disabled employees. Occupation and qualification only account for 25% of this difference. There exists an unjustified wage difference between disabled and non-disabled people; the UK lacks any legislation or policies that could address this problem (ONS, 2018).

 

  1. Recommendations for Interventions

5.1. Person and Occupation

Following the recommendations of Babik et al. (2019), Zoe could be provided with an exoskeleton for her hands and feet. While Babik et al. (2019) failed to consider how such a technology could help adults with arthrogryposis, Wagner et al. (2019) implied that exoskeletons enabled antigravity use of upper limbs. The UK, nonetheless, lacks any government-backed schemes and programmes allowing arthrogryposis patients to evaluate their condition and request the provision of exoskeletons addressing their needs. The current personal independence payments received by Zoe could fail to cover such an expense.

Zoe could perceive adapting to arthrogryposis as a threat to her independence. For Zoe, requesting a personal carer could elicit the feelings of shame and anxiety for needing to rely on someone else’s help (C4, 2020). To address this, cognitive-behavioural therapy (CBT) or similar forms of interventions are recommended for Zoe. While other scholars (Altiok et al., 2019; Eriksson et al., 2018b) in the field of arthrogryposis failed to cover this issue, CBT could determine whether Zoe’s need for independence threatens her occupational performance. This intervention should aim to increase Zoe’s motivation to participate in other forms of occupational therapy or request a personal carer.

There is no evidence that previous occupational therapy interventions for Zoe focused on her aspiration to work in the law sector (C4, 2020). Both of the above skillsets are successfully used by self-employed workers in the law industry including freelance lawyers, paralegals, and legal secretaries (Lear, 2017).

 

5.2. Environment
5.2.1. Suggestions for the University

According to Kumah-Crystal et al. (2018), and Koester and Arthanat (2018), voice-assisted text input tools improve the occupational performance of disabled adults. To assist Zoe, an occupational therapist could teach her how to use Google Docs Voice Typing, Dragon Professional Individual, Braina Pro or other voice-assisted input software suites. While both Dragon Professional Individual and Braina Pro are licensed software and cost up to $300, this cost could be covered by Zoe’s personal independence allowance (GOVUK, 2020).

 

5.2.2. Suggestions for Home

Zoe currently faces a mental health crisis caused by the deaths of her friend Shelbie and her grandmother (C4, 2020). Despite this, the documentary fails to mention any occupational therapy interventions designed specifically to address this barrier to occupational performance. To address this, the study proposes the following interventions.

  • Providing mental health help to Zoe via video-calls (Fletcher et al., 2018).
  • Designing a self-hypnosis strategy for Zoe to overcome her anxiety and poor motivation to study (Brugnoli et al., 2018).

A web camera is required for Zoe to participate in video-therapy with a mental health professional. To improve the outcomes of self-hypnosis, Zoe’s home could be renovated to improve soundproofing via the use of mineral wool or plastering (Brugnoli et al., 2018). This is necessary to avoid noise pollution or distracting Zoe from her self-hypnosis sessions. While Zoe’s personal independence payments could pay for a web camera, Zoe’s family would need at least £300-£500 for the proposed home renovations.

 

  1. Conclusions and Implications

This study proposed interventions including self-hypnosis exercises, the provision of exoskeletons for Zoe’s upper limbs and teaching skills required to be self-employed as a paralegal or a legal secretary (Lear, 2017). The findings imply that occupational therapy for arthrogryposis patients needs to go beyond outcomes in the domain of physical health. Zoe’s case shows that arthrogryposis patients value their independence and could consider outside help as a threat to satisfying their psychological needs. Instead, occupational therapists need to focus on the provision of skills and equipment that improve the long-term independence of patients. This aim is particularly significant to protect arthrogryposis patients from discrimination by disability by UK enterprises. Teaching skills increasing the patients’ employability (e.g., working with voice-assisted text input tools) and the ability to be self-employed are highly beneficial for arthrogryposis patients.

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