Barriers and facilitators to parent-delivered interventions for children with or infants at risk of cerebral palsy. An integrative review informed by behaviour change theory.

PURPOSE: Empowering parents to deliver evidenced-based interventions improves outcomes for children with or infants at risk of cerebral palsy (CP), by integrating repetition and contextual learning into daily routines. We aimed to identify the barriers and facilitators to parent-delivered interventions and suggest practice improvements guided by behaviour change models. METHODS: Eight electronic databases were searched to identify studies presenting parent and therapist perspectives on parent-delivered interventions in CP. Included studies were critically appraised using validated checklists. Barriers and facilitators to parent-delivered interventions were identified and categorised into subcomponents of The Capability Opportunity and Motivation Model of Behaviour (COM-B), the Theoretical Domains Framework (TDF) and the Behaviour Change Wheel to formulate appropriate practice recommendations. RESULTS: Thirty-four studies were identified which mainly used qualitative or randomised control trial designs. Barriers to parent-delivery included insufficient parental knowledge, lack of confidence and time. Facilitators included staff continuity, empowering parents, efficient resource utilisation and flexible delivery. Practice recommendations emphasise realistic goal setting, tailored parental education and enhancing the coaching skills of therapists. CONCLUSIONS: Fostering parent-delivered interventions requires addressing knowledge gaps, skill and capacity of parents and therapists. Therapists forming strong alliances with parents and setting collaborative realistic goals are key to successful parent-delivered interventions.

Enhancing parents' skills and knowledge regarding CP interventions can increase their confidence (psychological capability) in actively participating in intervention delivery.Structuring services to accommodate family schedules and providing adequate resources (physical and social opportunity) reduce the burden on families and facilitate their engagement.Providing training and resources to therapists enhances their skills and knowledge (psychological capability) in coaching and educating parents effectively.Emphasizing the value of collaborative goal setting in achieving positive outcomes for the child and acknowledging progress (reflective and automatic motivation) motivates both parents and therapists to actively engage in intervention delivery.

A systematic review of photovoice research methods with people with intellectual disabilities.

BACKGROUND: Photovoice is an arts-based participatory action research methodology that is growing in popularity. Our aim was to systematically review photovoice research with people with intellectual disabilities to describe the current 'state of the art' and identify areas for further methodological consideration. METHODS: We searched five databases using search terms relating to photovoice and intellectual disabilities. Thirty one studies met inclusion criteria. We used thematic analysis to identify common themes. FINDINGS: The themes identified-adaptations to the photovoice method, collaboration, participation and power, impact and outcomes-explored how far the 'voice' and agency of participants with intellectual disabilities taking part in photovoice research were supported and whether photovoice lived up to its promise as 'action' research. CONCLUSION: Photovoice creates opportunities for self-representation of people with intellectual disabilities through photography. Participants could be further supported to engage with researchers in critical reflection on findings and collaborate on tangible outcomes.

'I Have to Explain to him': How Companions Broker Mutual Understanding Between Patients with Intellectual Disabilities and Health Care Practitioners in Primary Care.

People with intellectual disabilities (ID) experience marked health inequalities. This is attributable, at least in part, to suboptimal healthcare communication with health care practitioners (HCPs) whereby patients with ID and HCPs struggle to understand each other. Companions who attend healthcare appointments with patients with ID can support the communicative exchange between patient and HCP, but their involvement can have unintended consequences. This article uses Conversation Analysis (CA) to analyse video-recorded data from primary care health checks involving 24 patients with ID. This method shows that companions use their linguistic and experiential resources to intervene as 'brokers' to address real or potential threats to mutual understanding between patients with ID and HCPs. Their interventions can fill in the gaps in knowledge and understanding of the other parties, but also run the risk of deskilling the others in the interaction, by relieving them of the obligation to address communication breakdown directly themselves.

Who is Asked and Who Gets to Answer the Health-Care Practitioner's Questions When Patients with Intellectual Disabilities Attend UK General Practice Health Checks with Their Companions?

When patients with intellectual disabilities (ID) attend a General Practice annual health check, current guidance directs health-care practitioners (HCPs) to involve them as much as possible as informants on their health. However, previous research based on interviews with participants suggests that during health consultations their communicative contributions of patients with ID may be sidelined in favor of information provided by caregivers perhaps because of HCPs' uncertainties about how to address the communication needs of these patients. The aim of this study was to establish, within naturally occurring health consultations, who HCPs select to answer their questions during health checks - patients with ID or their companions - and who actually answers. A nonconsecutive case series of primary care annual health checks involving patients with ID and their companions (n = 24) was conducted. Health checks were video-recorded and analyzed using tools of Conversation Analysis. We found that HCPs consistently selected patients with ID to answer their questions and patients then responded without significant gaps or dyfluencies in the immediate next turn at talk 70.1% of the instances. Companions were selected to respond in 9.3% of the total question-answer sequences recorded. Family members were more likely to be chosen as the addressee of HCP questions, compared to staff companions. They were also more likely to intervene to answer questions that had been directed at the patient. We conclude that health communication with patients with ID need not necessarily pose insurmountable challenges for HCPs, though the structure of the health check, with many questions requiring only a yes/no response may have reduced the communicative demand on patients. More research is needed to investigate how HCP involve patients with ID in more extensive health information exchange or health decision-making.

An empirical examination of the use of Easy Read health information in health consultations involving patients with intellectual disabilities.

BACKGROUND: Easy Read health information (ERHI) has the potential to promote engagement in health care for people with intellectual disabilities. This study examined how ERHI was actually employed by clinicians and received by patients. METHOD: Video recordings were made of 32 patients with intellectual disabilities attending a health check with primary care clinicians who had been given access to a range of ERHI, and 9 attending a health appointment with a specialist intellectual disability nurse. The recordings were analysed using conversation analysis. RESULTS: Easy Read health information was visible in only 7 (22%) of the primary care health checks (though not always shared with the patients). Easy Read health information was used in sequences where clinicians offered unsolicited health advice and met with degrees of resistance from patients, though its potential for shared decision making was also evident. CONCLUSIONS: Easy Read health information can aid patient understanding and decision making, but attention should be paid to the interactional practices accompanying their use.

To initiate repair or not? Coping with difficulties in the talk of adults with intellectual disabilities.

How do health and social care professionals deal with undecipherable talk produced by adults with intellectual disabilities (ID)? Some of their practices are familiar from the other-initiated repair canon. But some practices seem designed for, or at least responsive to, the needs of the institutional task at hand, rather than those of difficult-to-understand conversational partners. One such practice is to reduce the likelihood of the person with ID issuing any but the least repair-likely utterances, or indeed having to speak at all. If they do produce a repairable turn, then, as foreshadowed by earlier work on conversations with people with aphasia, their interlocutors may overlook its deficiencies, respond only minimally, simply pass up taking a turn, or deal with it discreetly with an embedded repair. When the interlocutor does call for a repair, they will tend to offer candidate understandings built from comparatively flimsy evidence in the ID speaker's utterance. Open-class repair initiators are reserved for utterances with the least evidence to go on, and the greatest projection of a response from the interlocutor. We reflect on what this tells us about the dilemma facing those who support people with intellectual disabilities.

Companions' dilemma of intervention when they mediate between patients with intellectual disabilities and health staff.

OBJECTIVE: We analyse, for the first time, how companions intervene in the answers that an adult patient with intellectual disabilities gives to their medical practitioner in primary care. METHODS: Video records of 25 health-check consultations in a large multi-ethnic city in the UK were analysed with the qualitative methods of Conversation Analysis. RESULTS: We found that companions' interventions in patients' answers fell along a gradient of low to high entitlement, from mere hinting to outright direct take-over. CONCLUSION: Companions have to manage the dilemma of displaying information which is the proper domain of the patient: encroachment on the patient's epistemic rights versus the needs of the medical practitioner. PRACTICE IMPLICATIONS: Practitioners may need to check the patients themselves when their companions intervene at the most assertive end of the gradient of help.

Family and community in the lives of UK Bangladeshi parents with intellectual disabilities.

BACKGROUND: Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. METHOD: Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. RESULTS: Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. CONCLUSIONS: 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.

The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness for people with ID, when delivered within IAPT, is unclear. METHOD: Ten high-intensity therapists took part in semi-structured interviews, analysed using thematic analysis, regarding their experiences of delivering CBT to people with ID in IAPT. RESULTS: The rigidity of the IAPT model appears to offer a poor fit with the needs of people with ID. Therapists appeared uncertain about how to modify CBT and highlighted training and service development needs. CONCLUSIONS: Findings suggest barriers to accessing IAPT largely remain unaddressed where people with ID are concerned. Services may need to reconsider what constitutes appropriate reasonable adjustments to ensure equitable access.

'I Wanted to Come Here Because of My Child': Stories of Migration Told by Turkish-Speaking Families Who Have a Son or Daughter with Intellectual Disabilities.

BACKGROUND: Despite growing interest in the experiences and social barriers experienced by people with intellectual disabilities from ethnic minorities, the specific challenges associated with migration from abroad faced by these individuals and their families have been overlooked. This research focuses on narratives told by Turkish-speaking families about migrating to the UK with a family member with intellectual disabilities. METHOD: Semi-structured interviews were carried out with five Turkish-speaking families who have a son or daughter with an intellectual disability and had migrated to the UK. Interviews were analysed using narrative analysis. RESULTS: Seeking help for the person with intellectual disabilities in a new country was a central part of migration narratives. The family member with intellectual disabilities was described as being caught up in wider geo-political conflicts. Families continued to face challenges within their own communities and with accessing local services. CONCLUSIONS: Eliciting narratives about families' migration to their new homes can provide professionals with important information about family experiences of trauma and clarify hopes and expectations regarding service provision.

Review of Interventions to Enhance the Health Communication of People With Intellectual Disabilities: A Communicative Health Literacy Perspective.

BACKGROUND: Communicative health literacy is a term relating to the range of competencies and capabilities patients bring to the task of seeking information about their health and sharing it with others. This exchange can be problematic for people with intellectual disabilities. The aim of this review was to synthesize findings from interventions designed to improve health communication for people with intellectual disabilities. MATERIALS AND METHOD: Available evidence was systematically reviewed, and findings from 14 articles were synthesized in a narrative review. RESULTS AND CONCLUSIONS: Interventions addressed communicative aspects of health consultations, taking into account emotional factors and social context. Questions remain about how such interventions might impact on real-life health consultations and how issues of power might be resolved.

Equity in social care for people with intellectual disabilities? A cross-sectional study examining the distribution of social care funding across local authorities in England.

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting 'child welfare inequalities'. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013-2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.

Easy read and accessible information for people with intellectual disabilities: Is it worth it? A meta-narrative literature review.

BACKGROUND: The proliferation of "accessible information" for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. OBJECTIVE: To review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach. SEARCH STRATEGY: Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. INCLUSION CRITERIA: Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. DATA EXTRACTION AND SYNTHESIS: We organized the papers into five groups according to similarity in authors' writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organizational identities. MAIN RESULTS: The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy as decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation. CONCLUSIONS: Individually tailored information is more likely to meet personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups.

Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review.

BACKGROUND: changing attitudes, alongside integration, more independent living and recognition of rights to family life have meant a steady rise in women with intellectual disabilities becoming pregnant. However, existing evidence shows that women with intellectual disabilities are less likely to seek or attend for regular antenatal care. This population experiences poorer maternal wellbeing and worse pregnancy outcomes compared to the general population, including preterm and low-birthweight babies. PURPOSE: to identify and review the existing evidence on the provision of antenatal care among women with intellectual disabilities. METHODS: a systematic search strategy was formulated using key Medical Sub-Headings terms and related text words for pregnancy, antenatal care and intellectual disability. Comprehensive searches dating back to 1980 using pre-determined criteria followed by a hand search of reference lists and citations were undertaken. Data were extracted using a data extraction form and methodological quality assessed using the framework developed by Caldwell et al. (2011). A three stage textual narrative synthesis was used to integrate the findings from the included studies. RESULTS: searches identified 16 papers that met the inclusion criteria. A majority of the papers focused on women's experience of pregnancy and antenatal care with a paucity of papers identified on midwives knowledge and experience. The four broad themes of the analysis and synthesis performed included: In the Family Way ('I've a baby inside. I've got a life inside of me.׳); Knowledge and advocacy ('...everyone was looking at one another and no one was talking to me...'); Midwives educational needs ('...helpful to have guidance...') and Midwives Attitudes ('...women with [intellectual disabilities]...should not be pregnant'). KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: significant gaps in the evidence base were apparent, however evidence was identified which showed that intellectually disabled pregnant women struggle to understand antenatal information communicated during pregnancy which was often text based. Maternity care providers need to make adjustments to their services so that antenatal communication, information and care is appropriate for this group of women. Midwives identified that they lacked knowledge in this area and wanted antenatal guidance on how to meet the care and communication needs of women with intellectual disabilities.

All Aspects of Health Literacy Scale (AAHLS): developing a tool to measure functional, communicative and critical health literacy in primary healthcare settings.

OBJECTIVE: Our aim was to develop and pilot a tool to measure health literacy in primary health care settings, encompassing functional, communicative and critical health literacy. METHODS: Following consultation with providers and users of primary health care we developed a fourteen-item self-report scale, which was piloted on 146 participants. The reliability, content and construct validity of the scale was investigated as well as relationships between scores on the scales and participant characteristics. RESULTS: The overall scale had adequate reliability (Cronbach's alpha=0.74), though reliability of the subscales was less consistent. Principal component analysis indicated that scale items loaded on four factors, corresponding to skills in using written health information; communicating with health care providers; health information management and appraisal assertion of individual autonomy with regards to health. Overall scores and different subscale scores were associated with ethnic minority status, educational level, and self-rated health status, though the picture was complex. CONCLUSION: Health literacy is a complex and evolving construct. Nevertheless, we succeeded in developing a brief measure relating to different health literacy competencies, beyond functional literacy skills. PRACTICE IMPLICATIONS: Assessment using the AAHLS can provide important information for health care practitioners about the health literacy needs and capabilities of service users.

Changes and sticking points in adult safeguarding: a discussion.

The care and treatment of vulnerable adults was the subject of regular public and media concern in 2011. This article discusses the potential impact of these concerns on community nursing practice and reflects on the ways in which such concerns may be discussed in professional development activities. It alerts nurses to the importance of considering the effects on patients and carers of exposure to negative findings from inquiries and inspections. It identifies ways in which professional development opportunities can be used to update general skills in safeguarding practice. These are likely to be of growing importance to the work of community nurses in the context of an ageing society and occasional potential conflicts between patients and carers. Keeping abreast of legal frameworks will be required of nurses if they are to advise and to advocate for their patients.

Critical health literacy: a review and critical analysis.

Though there has been a considerable expansion of interest in the health literacy concept worldwide, there has also been criticism that this concept has been poorly defined, that it stretches the idea of "literacy" to an indefensible extent and more specifically, that it adds little to the existing concerns and intervention approaches of the better established discipline of health promotion. This paper takes as a starting point the expanded model of health literacy advanced by Nutbeam (2000) and addresses these concerns by interrogating the concept of "critical health literacy" in order to draw conclusions about its utility for advancing the health of individuals and communities. The constituent domains of critical health literacy are identified; namely information appraisal, understanding the social determinants of health, and collective action, and as far as possible each are clearly delineated, with links to related concepts made explicit. The paper concludes that an appreciation of work undertaken in a range of different disciplines, such as media studies, medical sociology, and evidence-based medicine can enhance our understanding of the critical health literacy construct and help us understand its usefulness as a social asset which helps individuals towards a critical engagement with health information. There is some evidence that aspects of critical health literacy have indeed been found to be a resource for better health outcomes, but more research is needed in this area, both to develop quantitative and qualitative approaches to evaluating health literacy skills, and to offer convincing evidence that investment in programmes designed to enhance critical health literacy are worthwhile.