Abstract:Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent.
“…In one of the studies, potential participants judged not able to consent were not even approached [ 83 ]. Of the remaining 6 studies, one made provision for consultee advice but did not use this as all participants were able to give informed consent [ 84 ], while the participants in the remaining five studies were able to give informed consent [ 64 , 65 , 71 , 73 , 85 ]. In addition, three studies excluded potential participants based on cognitive-communicative competence for data collection methods [ 73 , 83 , 84 ], and severe visual and cognitive difficulties [ 78 ].…”
Background
The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019.
Methods and findings
We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA. Clinical trials of medicines were excluded. We searched seven databases: Academic Search Complete, ASSIA, MEDLINE, CINAHL, PsycArticles, PsycINFO and Science Direct. We used narrative synthesis to report our results. Our review follows Preferred Reporting Items for Systematic Reviews and is registered on PROSPERO, CRD42020195652.
28 studies of various research designs met our eligibility criteria: 14 (50.0%) were quantitative, 12 (42.9%) qualitative and 2 (7.1%) mixed methods. Included participants were adults with intellectual disabilities (n = 12), dementia (n = 9), mental health disorders (n = 2), autism (n = 3) and aphasia after stroke (n = 2). We found no studies involving adults with acquired brain injury. Diverse strategies were used in the recruitment of adults with capacity and communication difficulties with seven studies excluding individuals deemed to lack capacity.
Conclusions
We found relatively few studies including adults with capacity and communication difficulties with existing regulations interpreted variably. Limited use of consultees and exclusions on the basis of capacity and communication difficulties indicate that this group continue to be under-represented in research. If health and social interventions are to be effective for this population, they need to be included in primary research. The use of strategic adaptations and accommodations during the recruitment process, may serve to support their inclusion.
“…In one of the studies, potential participants judged not able to consent were not even approached [ 83 ]. Of the remaining 6 studies, one made provision for consultee advice but did not use this as all participants were able to give informed consent [ 84 ], while the participants in the remaining five studies were able to give informed consent [ 64 , 65 , 71 , 73 , 85 ]. In addition, three studies excluded potential participants based on cognitive-communicative competence for data collection methods [ 73 , 83 , 84 ], and severe visual and cognitive difficulties [ 78 ].…”
Background
The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019.
Methods and findings
We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA. Clinical trials of medicines were excluded. We searched seven databases: Academic Search Complete, ASSIA, MEDLINE, CINAHL, PsycArticles, PsycINFO and Science Direct. We used narrative synthesis to report our results. Our review follows Preferred Reporting Items for Systematic Reviews and is registered on PROSPERO, CRD42020195652.
28 studies of various research designs met our eligibility criteria: 14 (50.0%) were quantitative, 12 (42.9%) qualitative and 2 (7.1%) mixed methods. Included participants were adults with intellectual disabilities (n = 12), dementia (n = 9), mental health disorders (n = 2), autism (n = 3) and aphasia after stroke (n = 2). We found no studies involving adults with acquired brain injury. Diverse strategies were used in the recruitment of adults with capacity and communication difficulties with seven studies excluding individuals deemed to lack capacity.
Conclusions
We found relatively few studies including adults with capacity and communication difficulties with existing regulations interpreted variably. Limited use of consultees and exclusions on the basis of capacity and communication difficulties indicate that this group continue to be under-represented in research. If health and social interventions are to be effective for this population, they need to be included in primary research. The use of strategic adaptations and accommodations during the recruitment process, may serve to support their inclusion.
“…Some participants expressed the view that “back home” there is widespread lack of knowledge about intellectual disability (see also Durling, Chinn, & Scior, 2018). However, ironically, the increased awareness of intellectual disability in UK communities did not necessarily lead to more acceptance:I would say back home in mum and dad's country in Pakistan, where we're originally from, people don't know what learning disability is, so they are included.…”
Section: Resultsmentioning
confidence: 99%
“…They knew of cases where this had happened within their communities, sometimes within their own extended families, and concerns about this practice were expressed by all. Participants emphasized that because such marriages were not genuine, the person with intellectual disabilities would most likely be abandoned as soon the spouse had the legal right to remain in the UK (see also Durling et al., 2018). Before the marriage, they agree with everything, once they get married, then the problem starts…if you are bringing someone from India, Pakistan, Bangladesh, they are happy to get married and come here, then once they get their rights, it all changes, they just run away (G2)…”
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
“…Thematic analysis is ‘a method for identifying, analyzing and reporting patterns (themes) within data’ (Braun and Clarke, 2006:79) which is often utilized in qualitative studies in the field of intellectual disabilities (e.g. Durling et al, 2018; Whittington and Burns, 2005). While there are different, but overlapping, suggested methods in how thematic analysis can be conducted (e.g.…”
Section: Methodsmentioning
confidence: 99%
“…This article was one of the most extensively cited work in the field of thematic analysis and was frequently referenced in qualitative studies concerning PWID (e.g. Caton and Chapman, 2016; Durling et al, 2018; Jenaro et al, 2013; Spanos et al, 2013; Young et al, 2012). The current analysis closely follows the methods laid down by Braun and Clarke (2006).…”
This article introduces ‘Ding Ding Lok’ (DDL), a group game especially designed for persons affected by mild-to-moderate intellectual disability and explores its utility in rehabilitation service settings in Hong Kong. Reports from service staff who participated in the pilot project were analysed using thematic analysis. Two key questions were explored: (1) staff members’ perceived benefits of the game for service users and (2) source of enjoyment for staff members in the game process. Results of the thematic analysis generated four themes, including ‘Social Repertoire Expansion’, ‘Exercising Cognitive Abilities’, ‘Leisure & Recreation’ and ‘Personal growth’ for the first question on perceived benefits and five themes including ‘Positive interactions’, ‘Users’ positive feelings’, ‘Increased understanding’, ‘Game design’ and ‘Users’ improvement’ for the second question on source of enjoyment for staff members. On the whole, DDL was perceived to be highly beneficial for the service users and were regarded as very enjoyable to the participating service staff.
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