Commentary on “promoting positive communication environments: a service evaluation”: the communication partnership as a focus for change

Purpose: The purpose of this paper is to debate the complexities of intervening with adults with learning disabilities and support staff in the natural environment and challenges of evaluating change. Design/methodology/approach: A critical review of the relevance and amenability of communication partnerships for interventions that promote communication growth in context was carried out. Particular consideration was given to the mechanism for change and implications for research design. Findings: The communication partnership is a reasonable focus for interventions aiming to promote the communication of adults with learning disabilities. Combining instructional training with in situ coaching appears to provide the most effective approach. Bringing about change within the dynamic context of communication is challenging and may benefit from an open, investigative design. Originality/value: This paper synthesises the available evidence on intervening in the communication environment and debates the potential of realist evaluation as a context-focused research design

A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers’ experiences?

Background Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs. Methods Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved. Results Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an ‘opening up’ of communication that recognized the child’s strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention. Conclusion Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers’ experiences, although it is not possible to attribute this change to any one aspect. The potentials of the home-based intervention would benefit from further investigation on a larger scale

Lost Voices in Research: Exposing the Gaps in the Mental Capacity Act 2005

Despite laudable intentions, since its inception, the Mental Capacity Act 2005 of England and Wales (MCA) has proved to be a controversial piece of legislation. The majority of legal scholarship has concentrated on the problems created by the Act in relation to the treatment of incapacitated patients. However, there is an additional and somewhat unexplored dimension to the MCA, that of research. We argue here that the research provisions of the MCA are poorly drafted and do not provide an appropriate balance between protection and empowerment. We also assert that contrasting obligations and expectations are placed on different parties in the approval process, which creates a blurred sense of responsibility and a potential chilling effect

Inclusion under the Mental Capacity Act (2005) : a review of research policy guidance and governance structures in England and Wales

Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognised, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings

Nyílt, randomizált, kontrollált vizsgálat a nyelvi egyszerűsítésnek és a közvetítésnek az értelmileg akadályozott személyek könnyen érthető szövegek megértésére gyakorolt hatásáról

A vizsgálat célja, hogy felmérje a felhasználók körében a külső és belső tényezőknek az adaptált, könnyen érthető egészségügyi információk megértésére gyakorolt hatását. Módszer: Hatvan értelmileg akadályozott felnőtt vállalta a Könnyen Érthetőségi Vizsgálatban való részvételt, akiket véletlenszerűen osztottak a különböző olvasási képességet igénylő csoportokba (könnyen érthető nyelvezettel vagy anélkül / közvetítéssel vagy közvetítés nélkül. Eredmények: Önmagában vagy együttesen sem a szöveg nyelvi bonyolultsága, sem a közvetítés nem jelentett számottevő változást az információk megértésében. Az utólagos tesztekből kiderült, hogy az a csoport, amely egyszerűsített szöveget kapott közvetítéssel, lényegesen jobban teljesített, mint az a csoport, amelynek bonyolultabb nyelvezetű szöveg jutott a közvetítés mellett. A többi különbség nem volt szignifikáns a csoportok között. Következtetések: A könnyen érthető üzenet szerkesztői sok esetben az olvashatóságot biztosító formai szabályok betartására fókuszálnak. Ugyanakkor kiemelt figyelmet kell fordítani az üzenet tartalmának a létrehozásakor az egyén nyelvi feldolgozó képességére

Survey of rehabilitation support for children 0-15 years in a rural part of Kenya

Abstract Purpose: Information regarding the nature, availability and distribution of rehabilitation services for children with disabilities across developing countries is scarce, and data that do exist are of variable quality. If planning and development are to progress, information about service provision is vital. The aim was to establish the scope and nature of rehabilitation support available to children with disabilities (0-15 years) and their families in rural Kenya. Method: A comprehensive sample comprising service provision in the health and special education sectors was established. Non-governmental and community-based organisations were also included. A survey of rehabilitation services was conducted through examination of service-related documentation and key informant interviews with the heads of services. Results: Rehabilitation comprised hospital-based occupational therapy, physiotherapy and orthopaedic technology; and seven special education establishments plus an education assessment resource centre. There was one non-government organisation and one community-based organisation relevant to children with disabilities. Activities focused on assessment, diagnosis and raising community awareness. Provision was challenged by inadequate staffing, resources and transport. Government funding was supplemented variously by donations and self-sufficiency initiatives. Rehabilitation approaches appeared to be informed by professional background of practitioner, rather than the needs of child. Service documentation revealed use of inconsistent recording methods. Conclusions: The data highlight the challenges of rehabilitation, demanding greater investment in personnel and their training, more material resources, improved access to the community and better recording mechanisms. Implications for Rehabilitation There needs to be greater investment in rehabilitation provision in developing countries. Consideration of community-based initiatives is required to support better access for all. In order to argue the case for improved resources, better skills and mechanisms for recording, monitoring and evaluating practice are needed

How are adults with capacity-affecting conditions and associated communication difficulties included in ethically-sound research? A documentary-based survey of ethical review and recruitment processes under the research provisions of the Mental Capacity Act (2005) for England and Wales

Objectives: This study aimed to determine the characteristics of ethical review and recruitment processes, concerning the inclusion of adults with capacity-affecting conditions and associated communication difficulties in ethically-sound research, under the provisions of the Mental Capacity Act (MCA, 2005) for England and Wales. Design: A documentary-based survey was conducted focusing on adults with capacity-affecting conditions and associated communication difficulties. The survey investigated: (i) retrospective studies during the implementation period of the MCA (2007-2017); (ii) prospective applications to MCA-approved Research Ethics Committees (RECs) during a 12-month period (2018-19); (iii) presentational and linguistic content of participant information sheets used with this population. Setting: Studies conducted and approved in England and Wales. Sample: Studies focused on adults with the following capacity-affecting conditions: acquired brain injury; aphasia after stroke; autism; dementia; intellectual disabilities; mental health conditions. The sample comprised: (i) 1,605 studies; (ii) 83 studies; (iii) 25 participant information sheets. Primary and secondary outcome measures: The primary outcome was the inclusion/exclusion of adults with capacity-affecting conditions from studies. The secondary outcome was the provisions deployed to support their inclusion. Results: The retrospective survey showed an incremental rise in research applications post-MCA implementation from 2 (2012) to 402 (2017). The prospective survey revealed exclusions of people on the bases of: ‘lack of capacity’ (n=21; 25%); ‘communication difficulties’ (n=5; 6%); ‘lack of consultee’ (n=11; 13%); and ‘limited English’ (n=17; 20%). REC recommendations focused mainly on participant-facing documentation. The participant information sheets were characterised by inconsistent use of images, typography and layout, volume of words and sentences; some simplified language content, but variable readability scores. Conclusions: People with capacity-affecting conditions and associated communication difficulties continue to be excluded from research, with recruitment efforts largely concentrated around participant-facing documentation. There is a need for a more nuanced approach if such individuals are to be included in ethically-sound research

A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales: Recruitment of adults with capacity and communication difficulties

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

The perception of disability by community groups: Stories of local understanding, beliefs and challenges in a rural part of Kenya

Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect–reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism

Caregiver perceptions of children who have complex communication needs following a home-based intervention using augmentative and alternative communication in rural Kenya: an intervention note:Home-based intervention using AAC in rural Kenya

A high level of unmet communication need exists amongst children with developmental disabilities in sub-Saharan Africa. This study investigated preliminary evidence of the impact associated with a home-based, caregiver-implemented intervention employing AAC methods, with nine children in rural Kenya who have complex communication needs. The intervention used mainly locally-sourced low-tech materials, and was designed to make use of the child's strengths and the caregiver's natural expertise. A pretest-posttest design was used in the study. Data were gathered using an adapted version of the Communication Profile, which was based on the International Classification of Functioning, Disability, and Health (ICF) framework. The non-parametric Wilcoxon signed-rank test was applied to data from the first two sections of the Communication Profile-Adapted. Qualitative analysis was conducted on the final section. The data provided evidence of statistically significant positive changes in caregiver perceptions of communication at the levels of Body Structure and Function, and Activities for Communication. Also, analysis of the Participation for Communication section revealed some expansion to the children's social activities. The potential impact of the home-based intervention would benefit from investigation on a larger scale. Limitations of the study are discussed