How Are People With Disabilities Viewed in the United States Peer Reviewed

• Loading metrics

Open Admission

Peer-reviewed

Research Article

Bigotry and Other Barriers to Accessing Health Care: Perspectives of Patients with Balmy and Moderate Intellectual Inability and Their Carers

• Afia Ali,
• Katrina Scior,
• Victoria Ratti,
• Andre Strydom,
• Michael King,
• Angela Hassiotis

x

• Published: Baronial 12, 2013
• https://doi.org/10.1371/journal.pone.0070855

Figures

Abstract

Background

People with intellectual disability have a college prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations accept been introduced to improve wellness intendance access for this population. The aim of this qualitative written report was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing wellness services, and whether health care experiences accept improved over the last decade years.

Method and Master Findings

20 9 participants (14 patient and carer dyads, and 1 carer) took role in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants idea that the patient had been treated unfairly or had been discriminated against by wellness services. At that place were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with advice, and accessing services considering of lack of cognition of local services and service eligibility problems; lack of support and interest of carers; and language problems in participants from minority ethnic groups. Nigh participants were able to report at least one example of expert practice in health care provision. Suggestions for improving services are presented.

Conclusion

Despite some improvements to services as a result of wellness policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both straight and indirect bigotry of people with intellectual disability.

Citation: Ali A, Scior 1000, Ratti Five, Strydom A, King M, Hassiotis A (2013) Bigotry and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers. PLoS Ane 8(8): e70855. https://doi.org/ten.1371/periodical.pone.0070855

Editor: Stephen D. Ginsberg, Nathan Kline Institute and New York University Schoolhouse of Medicine, Us

Received: April 26, 2013; Accustomed: June 25, 2013; Published: Baronial 12, 2013

Copyright: © 2013 Ali et al. This is an open-access commodity distributed under the terms of the Artistic Commons Attribution License, which permits unrestricted employ, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: A Ali has received funding from the Medical Enquiry Council (U.k.) to complete this written report as part of a three year MRC clinical training fellowship. The funders had no role in study blueprint, data collection and analysis, decision to publish, or training of the manuscript.

Competing interests: The authors have declared that no competing interests be.

Introduction

People with intellectual disability have a higher prevalence of health problems [i] and the median age of death is 25 years younger than the general population [2]. They are more likely to experience inequalities in accessing health care and to die from preventable causes, possibly every bit a result of institutional discrimination within health services [three], [four], [v], [6].

A number of qualitative (and mixed design) studies have explored the experiences of individuals with intellectual disability, and their carers, in accessing mainstream wellness services for physical health issues. They have highlighted barriers to accessing health care, including: communication difficulties, resulting from individuals with intellectual disability existence excluded from consultations [vii], [8], [9], failure of General Practitioners (GPs) to carry health reviews, review medication and conduct blood tests and investigations [10], lack of health promotion and screening [10], [eleven], [12] and inadequate cognition of doctors about the health needs of people with intellectual disability [vii], [12], [13], [14], which has contributed to diagnostic overshadowing [9], [xiv], [15], [sixteen]. Diagnostic overshadowing occurs where signs and symptoms arising from concrete or mental wellness bug are misattributed to the private'due south intellectual inability, and tin can atomic number 82 to delayed diagnosis and treatment. In hospitals, concerns have been reported near the denial of basic needs such as lack of support during meal times or toileting [xvi], [17], [xviii]; problems in the assistants of medication [eighteen], and inadequate belch arrangements [15], [16]. In addition, studies have reported a lack of back up offered to carers [19], disregard for information provided by carers [fifteen], and unrealistic expectations of carers to accept on care giving responsibilities on the ward [17], [eighteen].

Several studies concluded that patients with intellectual disability received suboptimal care, and were denied appropriate handling [7], [nine], [13]. Health professionals often exhibited negative attitudes and behaviour towards individuals with intellectual disability [vii], [15], [xvi], including questioning whether the person was worthy of surgical handling, due to discriminatory judgements well-nigh the person'south quality of life [16], [19].

In England, a number of recommendations and initiatives to better access to health services, for people with intellectual inability, were introduced following an contained enquiry into health care access [5]; (Table one.) This includes the requirement of health services to make reasonable adjustments to enable individuals with intellectual disability to admission services, as stipulated by the Disability Bigotry Act (1995). The Deed requires that information about handling options, complaints procedures and appointments, are provided in an attainable format, and that whatsoever processes and procedures that may discriminate people with inability, either directly or indirectly, should be modified so that they are easier to utilize. Health services are besides obligated to take steps to promote equality for people with intellectual disability and to ensure that their needs are addressed even if that involves more favourable treatment. In add-on, since 2008, GPs in England accept been incentivised to provide almanac health checks for people with intellectual inability. Health checks have been shown to increase detection of serious unmet health needs such equally cancer, dementia and center disease. They as well increase detection of minor problems such as sensory impairments, which are often treatable and can significantly meliorate the individual's quality of life [20], [21].

In this written report, we examine the healthcare experiences of people with intellectual disability and their carers beyond a range of health care services, and hash out the extent to which implementation of legislative changes and initiatives has improved access to care, the lessons that appear to take been learnt so far, and what further progress is required to make services more than equitable. This study was one of two studies, which were part of a PhD examining the experiences of stigma and discrimination reported by people with intellectual disability. The other study was a cross sectional study investigating the human relationship between cocky reported stigma and health outcomes.

Aims and objectives

The aim of this qualitative study was to examine the extent to which adults with balmy or moderate intellectual disability (described in this written report every bit "patients") and carers believe that their needs are being accommodated by health services. The objectives were to address the following questions:

1. What are patient'due south and carer'due south experiences of health services, including both positive and negative experiences, and to what extent do they believe they are receiving unfair treatment or are beingness discriminated against by health services?
2. What barriers are in that location to accessing aid from health services?
3. How can health services continue to be improved and then that they are more attuned and responsive to the needs of people with intellectual disability and their carers?

Methods

Ethics argument

Ethical blessing was obtained from the West London Research Ethics committee (3) in November 2010, which reviews research conducted on patients within the National Health Service. The committee approved the participant information sheets, consent forms and interview schedules that were used in the study. The inquiry was conducted co-ordinate to the protocol approved past the ethics committee. The participants (both individuals with intellectual inability and carers) were required to give informed written consent prior to participating in the report. Accessible information sheets and consent forms that used simple text and pictures were given to individuals with intellectual inability to aid comprehension well-nigh the report. Capacity to consent to the study was determined by whether the participants met the criteria for the Mental Capacity Human activity (2005), which applies to England and Wales. This Human action requires that participants are able to empathize the nature and procedures involved in the report, the advantages and disadvantages of taking part, including agin events, are able to weigh up the pros and cons of taking role and are able to communicate this decision. Carers assisted in the procedure of obtaining consent, but did not consent on the behalf of the participants. Participants who were unable to give consent were non included in the study. Refusal to participate in the study did not bear on access to treatment or other services.

Recruitment

Patient-carer dyads, that is, pairs of two closely associated individuals, were recruited. In this report, each dyad consisted of a person with intellectual disability and a carer who knew them well. A focus on dyads allows an understanding of the individual needs of the participants, and the interactions and dynamics that occur betwixt service users and their carers [22]. Dyads have not been previously used to examine people with intellectual disability's experiences of mainstream physical health services, although they have been used in the study of psychiatric services [23]. As office of the recruitment process, customs intellectual disability services, day centres and voluntary organisations were approached at 11 sites in the U.k. (5 in London and 6 outside London (Sussex, Surrey, Somerset, Kent, Nottinghamshire and Lincolnshire)). The recruitment of participants was facilitated through members of staff at the unlike organisations who approached patients and carers, and through invitation letters or newsletters that were sent past some of the services giving information about the written report. Some participants from difficult to reach ethnic minority groups were recruited through snow-balling techniques.

Half the sample was comprised of participants who responded to invitation letters or were approached by staff. The rest were purposively selected on the basis of cultural and ethnic backgrounds and nature of health issues, in order to obtain a more diverse sample and a wider range of perspectives.

Inclusion and exclusion criteria

Participants with mild or moderate intellectual disabilities who were aged between18 and 65 were included in the study. The level of intellectual disability was not directly assessed but was based on information from clinical notes and information provided by the referrers. Participants unable to give informed consent were excluded. Both informal carers (eastward.g. relatives, friends) and paid carers were included. All of the carers had to know the person well (for at least ii years). In club to be eligible for the study, both the carer and the patient with intellectual inability had to agree to participate in the written report.

Procedures

The study was conducted between May 2011 and September 2012. Semi-structured interviews were conducted with patients and carers separately (by AA), in order to give the patient an opportunity to vox their views and concerns. However, at that place was some flexibility in the procedures as some patients wanted their carers present at their interview, or their carers needed to be present in lodge to facilitate the interview due to complex advice needs. All the interviews were held at participants' homes apart from iv that were held at a voluntary organisation. The interviews with the patients with intellectual disability lasted betwixt 20 and 45 minutes and the interviews with carers lasted betwixt 30 and hour.

A structured data collection course was used to collect some basic socio-demographic and clinical data about the participants. Semi-structured interview schedules for patients and carers were used to prompt the researcher of questions or topics to explore. These were initially developed from the literature review simply were then modified following input from health and social care professionals and individuals with intellectual disability at two consultation groups that were held at a community intellectual inability service at one of the main participating sites. The topics addressed in the interview schedule included any experiences of health services that were particularly memorable; positive and negative experiences of unlike types of wellness services (due east.chiliad. master intendance, hospitals, dental care, community intellectual disability services); whatever experiences of unfair or discriminatory treatment; whether complaints were made; the impact of negative experiences on subsequent utilize of health services; the influence of legislative changes on healthcare experiences; and how wellness services could be improved and then that they meet the needs of carers and patients with intellectual inability.

The interviews were sound-taped and field notes of the interviews were made. Complete data saturation was achieved with no new topics or themes emerging in the concluding few interviews. The interviews were transcribed verbatim. All the participants were given a £xx gift voucher to thank them for their time.

The researcher's position

Reflections on the primary researcher'southward (AA) position and its potential influence on the conduct of the study and interpretation of the results are presented in Box 4.

Sample characteristics

The total of 29 participants were made up of 14 patient and carer dyads and one single carer (patient declined to participate on the day). 6 of the dyads were recruited from two inner London boroughs (Camden and Islington), five dyads (and one carer) were recruited from a borough in Due east London (Newham), ane from a borough in South East London (Bromley) and two dyads were recruited from outside London (Somerset and Lincolnshire). Iv of the dyads were recruited through snow-balling techniques.

The patients with intellectual inability were between 23 and 57 years of age; vii were male and seven female. 9 were of White British or White Other backgrounds, two were of Asian Indian and iii were of Asian Pakistani origin (See Table 2). Ten had a mild intellectual disability and four had a moderate intellectual inability. Three of the patients had Down syndrome, one had cerebral palsy and two had autistic spectrum disorders. The patients had a range of health bug including epilepsy (2), hydrocephalus (two), sensory harm (4), diabetes (2), hypertension (ii), asthma (2) and mental health bug (iii).

The carers were between 28 and 72 years of age. Most of the carers were mothers of the patients, apart from one who was a paid carer and three who were partners. Just ane male carer took part. He was the patient's partner and had borderline intellectual functioning. An advocate who knew the family well, and who was involved in facilitating access to health care, was present at interviews with 5 dyads. The abet besides assisted with interpreting where the carers or service users had difficulty understanding English.

Analysis

Analysis of the transcripts was performed using thematic analysis, based on the method described past Braun and Clarke [24]. For this study, an essentialist opinion was taken, which reports the participants' experiences as a reflection of reality. Initially the interview transcripts were read several times by the researcher in gild to go familiar with the data. This was followed by coding of the data, using the software package NVivo (version 10). NVivo was used to manage the data gear up merely the bodily coding was done past the researcher. All transcripts were analysed to derive initial codes, which were applied to segments of the data and closely reflected the raw data (anterior analysis). Following this, all the data extracts relating to the same code were collated together. The third stage involved group the different codes into potential themes. The fourth stage involved reviewing the codes, and their grouping into themes with another member of the research team (KS), who also independently coded four transcripts, in guild to assess the validity of the coding frame and themes. Following this, some of the codes and themes were re-named and re-organised. Once the final coding frame was identified, the reliability of the coding frame was assessed past another researcher (KS) using two transcripts. The average Cohen's kappa coefficient was 0.82, indicating a skillful level of agreement between the two raters.

Results

Eight themes were identified relating to the three objectives and are grouped under: Barriers in health intendance access; discrimination from health services; and good practise (Table 2). These themes are discussed in detail and illustrated with interview extracts below. The annotation used in the brackets refers to the participant identification numbers shown in Table 3 (C denotes carers and P denotes patients).

Barriers to wellness care access

I. Problems with communication.

Problems with advice were discussed by 12 patients with intellectual disability and 12 carers. Some patients felt ignored by clinicians during consultations or "were talked over" if their carer was present. Staff failed to modify and adjust their communication to the needs of the patient such every bit asking too many questions, speaking also quickly, giving besides much information and non giving the person plenty time to respond. Some patients with intellectual disability complained of not understanding what was beingness said, or not being understood themselves. Several carers reported that the patient's advice difficulties or lack of confidence, affected their ability to limited their concerns. Most patients found it helpful to have their carer or an advocate present at the consultation, in social club to facilitate communication and understanding:

"I'd like to know what'south happening...I'd like to say something...I recall the doctors like talking to the parent about what's happened to the child, only I need to know. I think parents become first and daughter or son goes second about what's happening, I need to know... I don't desire to be left behind and I want the doctors to speak to me and my mum together" (P5).

Patients with intellectual disability and carers reported not being fairly informed near diagnoses, procedures and medication regimes. This included failure of doctors to inform patients of potential side effects of medication, what to do in response to side effects, and lack of information about the dosing and duration of medication. Lack of information or understanding led to patients becoming frightened or feeling pressurised to have handling.

P9: "And it was quite uncomfortable, because they put my legs in the stirrup"

Interviewer: "Did they explain this to you before the operation?"

P9: "No, No"

Interviewer: "How did y'all feel?"

P9: "Scary, and they gave me an epidural and I didn't like that because it made my legs go numb and I have bug with my legs."

Interviewer: "Did they explain that they were going to practice this earlier the procedure?"

P9: "No, no. They didn't explain nothing really"

"He does feel pressurised by them...he'southward had the performance, it hasn't worked. Now they're proverb that they want to do it again. And he never went to the terminal appointment considering he felt they were going to bully him into doing it" (C15; mother).

Data was rarely provided in an accessible format that could be understood past patients:

"No, they but said that I had to sign something... that was it, it was like a consent class. They gave me a fiddling booklet beforehand merely it wasn't like an easy read one" (P9).

Two. Issues with accessing assist.

Problems with accessing help were discussed by 8 patients with intellectual disability and 12 carers. Carers raised concerns about difficulties in accessing timely support, and of unmet health needs in the patient. Patients with intellectual inability were denied GP dwelling house visits if they refused or could not nourish the GP surgery; the GP was sometimes perceived to exist unhelpful, particularly for social bug. For some carers, getting assistance from services but occurred during a crisis and was perceived to be a constant battle.

Carers complained of the difficulty in obtaining information about what services were bachelor, and lack of clarity most referral pathways and how services were structured. Obtaining help was compounded by disputes between services near eligibility bug and who should take responsibility for the patient. In the UK, community intellectual disability services are multidisciplinary services that provide expertise in health and social intendance issues that touch on people with intellectual inability. In our study, five carers reported having no cognition of these services or but beingness referred recently, suggesting inadequate transition from kid to adult services, and their GPs failed to subsequently refer them to specialist services. Of note, in all of the five dyads, the participants were South Asians, which raises the question whether health services are coming together the needs of this grouping.

"When he left the infirmary at the age of 16, he should take had a good transition to the adult services, merely it didn't happen. It'due south not but to me merely I see this happen to lots of people. They're not getting their support plans made, they seem to be slipping through the net" (C15; mother).

"I retrieve information technology'south very confusing as to where services are and how information technology'due south structured. How you lot can access services and what is bachelor to you lot. In that location's no clear matter that says if y'all're in this situation, this is what'due south available to you and this is what you tin can practice...information technology's like an unknown globe out in that location" (C7; paid carer).

Several carers who did not speak English as their outset linguistic communication reported that language was a significant barrier to accessing assist. They were ignored at consultations, little consideration was given to their views and Information most the patient was frequently not shared with them. The language barrier also prevented some carers from accessing basic support such equally assistance completing benefit forms. Many health services failed to provide these carers with an interpreter, which perpetuated their feelings of marginalisation.

"I have been to many meetings with the doctors but because my English language isn't practiced, I couldn't say what I wanted to say. They never had a translator there at the meetings for me" (C8; wife).

III. Problems with how health professionals chronicle to carers.

Nine carers and one patient with intellectual disability reported problems in the relationship between wellness professionals and carers. Carers criticised staff for not sharing information or consulting them virtually clinical decisions. The carer's knowledge of managing the patient's health issues was often disregarded by staff. Carers who were proactive in managing the patient's health care were regarded as "pushy" or over-protective. One paid carer reported feeling like a "piggy in the middle" between infirmary staff and the relatives of the service user:

"We were sort of piggy in the middle kind of thing, going from him, speaking to his mum, and speaking to social services and trying to find out data from the infirmary. It was very difficult to find out information from the hospital... And we are request questions and they are very secretive, um, I understand the confidentiality aspects of it, only somebody needs to know what's happening" (C7; paid carer).

Carers reported not receiving copies of clinic messages and therefore had to ensure they attended appointments where important decisions were going to exist made, which was non ever practicable. Some carers felt embarrassed when their presence at appointments was questioned past staff who failed to empathise why an adult may demand to be accompanied:

"And then when you go in with your son they always look at you if to say God what sort of female parent'southward like that, going in with a man that size" (C4; mother).

4. Complexity of the health care system and lack of support for carers.

Challenges in negotiating complex health care systems were discussed past 15 carers and nine patients with intellectual disability. Carers idea that it was important to exist proactive, every bit they could not rely on wellness services taking the initiative in ensure that the patient'southward needs were met. Consultations were pressured for time. In particular, it was difficult to address concerns inside the constraints of the ten minute slot allocated with the GP, which meant that this had to be advisedly managed. Some patients with intellectual disability institute it difficult to use a phone based organisation. Mobility issues or toll of transportation fabricated it difficult for some patients to attend hospital appointments. Carers had learned to manage the health care arrangement over a number of years past acquiring cognition of how different systems worked. Beingness articulate and knowledgeable about the patient'south wellness problems was an advantage and usually led to more positive wellness experiences only carers also reported feeling intimidated considering of lack of knowledge and being unable to question clinical decisions.

"I've had to larn it as a whole technique of how to manage information technology, what to do about it...Then you have to learn to play the game, and that ways information, using your own experience"(C5; mother).

Several carers alleged that managing the health care needs of the patient was emotionally draining and resulted in stress, poor emotional wellbeing, and exacerbation of wellness issues in the carer. Sometimes this led to certain wellness needs in the patient remaining unmet. Some carers had little back up from family or services. Others were able to obtain valuable assistance from voluntary or advocacy groups.

"I recall it's put a ceiling on what I tin cope with so, for example, her teeth and her feet and toes. I think that's gone on longer untreated because I only can't cope with it whatsoever more. Whatever more appointments, any more than processes, any more people to chronicle to, any anything" (C5; mother).

"Information technology's been very detrimental to my wellness, the last few years, the way he'southward been because it's non easy seeing your child suffering from a life threatening status and not being supported" (C15; female parent).

Carers reported that they did not accept the time or the confidence to make complaints. One carer reported that she had instigated a complaint four years ago but it had not been resolved. Two carers reported that when they complained about poor medical care received by their loved ones, they received a pocket-sized acknowledgement that mistakes had occurred but no farther activeness was taken. Ane carer reported that she had asked a solicitor to investigate further but could not afford the legal costs to pursue the instance further. Patients were unlikely to mutter considering they did not know what the procedures for making a complaint were or, did not think that it would make a difference, or were worried that complaining could accept an adverse impact on future care.

Bigotry from health services

I. Substandard care of people with intellectual disability.

Twelve patients with intellectual disability and fourteen carers gave examples of poor health care provision, including distressing or traumatic experiences. In many of the examples that were given, it is probable that the experiences are non specific to people with intellectual inability and that other patient groups could have had similar experiences, such as the elderly or those with concrete disability. Examples included poor continuity of intendance such as inadequate follow up and being reviewed by a different doctor each time, leading to the prescription of incorrect medication and to unnecessary investigations; lack of adequate discharge arrangements from hospital such as an occupational therapy assessment of the abode; and investigations and treatments being delayed or lacking altogether. Sometimes carers had to be persistent in negotiating with the clinicians for investigations to be conducted. In one case, the carer declared that the patient's behavioural difficulties were misattributed to her intellectual disability, resulting in the doctors refusing to investigate further. This led to a serious medical diagnosis (spinal cord compression) being missed, culminating in permanent irreversible neurological impairment.

"They were ignored all of the time they were in there. It took about viii weeks for a diagnosis and in that time they were trying to get them back dwelling, sort of not looking into anything else, assuming that it was them non being compliant. But actually at that place was serious underlying trouble, in which they didn't practise a ...an MRI scan" (C7; paid carer).

Concerns were as well reported most the neglect of basic needs on hospital wards, such every bit staff not responding to requests of back up to use the toilet considering they were also busy. Sometimes this had long term consequences for the patient.

"Too busy to see to y'all right now, If you pressed the cablegram...information technology would be a couple of hours until somebody came circular...Or if they wanted to go to the toilet...it wasn't for another hour, an hour and a half until somebody came back to practise that. The event of that has been reduced continence...they were left to but soil themselves. And at present that'due south become a addiction, and now they're back in their own dwelling house, information technology's a matter nosotros've got to work on" (C7; paid carer).

Half the participants thought that the patient had been discriminated against or treated poorly because of their intellectual disability.

"My Nan sort of had diabetes also, but you could meet the mode they talked to her and the way they talked to me, it was completely unlike" (P9).

"Only I do experience, I never thought of it earlier, but would a man at 23 have had all...he wouldn't accept had the same treatment. I retrieve of my blood brother for instance, if something like that happened to him he wouldn't put upward with that" (C 4; mother).

Some participants best-selling that patients with intellectual disability were inadvertently treated poorly considering staff had misjudged, or had express awareness of the patient's abilities and needs. Few health services made reasonable adjustments to accommodate the person'south needs, such as the provision of additional support when patients were admitted to hospital.

"I can't remember which infirmary it was but they gave him the menus but he didn't know how to complete the menus...no one explained to him... then when his dinner came information technology was like a slice of toast...they just gave him the carte and left him to it. 2 minutes of someone sitting there proverb, do you want a hand mate" (C4; female parent).

"Another time when she stayed in hospital... she had quite an upsetting time...they didn't provide her with a box to put her (insulin) needles in what so always, so she left them on the table and a nurse pricked herself and she wasn't very prissy to her nigh it and that apparently upset her...She can announced very capable and very normal and they only sort of take that for granted without really knowing her and finding out her needs" (C9; mother).

In some circumstances, both carers and patients with intellectual disability did not think they were treated differently, and acknowledged that at times, everybody was treated poorly. However, the patient's lack of agreement near their care meant that they were probable to perceive their handling differently and more negatively compared to someone without the same difficulties.

"The thing is we've had some terrible things happen...um... but I don't know if y'all'd say that they've been worse considering of his difficulties... everyone would have experienced it, only for him I call back information technology was more traumatic, so to be off-white I don't think in most cases nosotros were treated differently simply because of his lack of agreement it, information technology upset him more" (C4; mother).

Many participants reported reluctance about returning to hospitals or GP surgeries because of the poor treatment that they received. Some patients were able to change their hospital to i which was perceived to be ameliorate. Some patients simply refused to attend appointments but others felt that they had no selection simply to return to the service.

"Well you stop using them...you lot think they weren't helpful last fourth dimension, what's the point in going and sometimes you lot accept to work on your thinking and say well give them another adventure. Similar you do with the GP, y'all have a barrier wall just you still take to become, only for some people the bulwark stays upwards for such a long time and they miss out and that'south wrong" (C15; mother).

II. Problems with staff attitudes, noesis and behaviour.

Five patients with intellectual disability and ix carers recalled incidents when health staff had been impolite or unfriendly towards them. Accounts included being spoken to in an abrupt or cavalier manner, staff actualization unwelcoming, using insulting linguistic communication or actualization disinterested.

"It's like, (they) come into your room for just a 2d and they talk to you lot sometimes like yous're a five year old" (P7).

"It's like y'all're not actually there and sometimes they don't fifty-fifty await at you and acknowledge you properly. It'south similar everything else is much more than of import than anything else you have to say… I felt like they sort of look down on y'all a fleck, it was like we know what we're doing, you don't need to know" (C7; paid carer).

Several carers remarked that they were surprised and astounded at the lack of knowledge that some members of staff had virtually weather associated with intellectual inability such as epilepsy:

"Well it'southward a seizure, and he stood there, actually solid, like that, and in that location was a nursing assistant walking past, and I said he's seizing, and she said, no he's not…Their only knowledge of a seizure is the sort when you lot roll around on the floor, so I idea they're very ignorant about it...I didn't think that nurses wouldn't know what seizures looked like. It but never dawned on me" (C4; mother).

"He probably doesn't know or isn't interested near learning difficulties, he'south a medical practitioner...I don't know if as a doctor, if he'south heard about autism and Asperger's syndrome, perchance they're difficult, but you kind of retrieve I wonder if they had considering they're certainly not helping him out in anyway" (C1; female parent).

Good practice

I. Examples of good exercise and improvements in services.

Twelve patients with intellectual disability and 13 carers discussed examples of proficient practice from health services. Higher levels of satisfaction were associated with staff who had gone "beyond the call of duty" to accommodate the needs of patients.

"She actually went for an overnight stay and she got very distressed considering she went at that place and she had forgotten her injection...she was so distressed about information technology so I said get to the ward and explicate to them, and when they did, they were so dainty... And manifestly they could see her needs, they took the time to show her around where she would be staying, and they fabricated another engagement, and y'all know, she was a different person and so because she knew they understood" (C9; mother).

Other examples included skilful communication skills, friendly and helpful staff and situations where both the patient and carer felt respected. There were besides a few examples of the wellness care organisation existence flexible and accommodating towards the needs of people with intellectual disability, such every bit offer longer appointments.

"It was the commencement fourth dimension that a medico had ever spoken straight to her and although they've e'er been really overnice and helpful, he really just addressed her simply and and then only looked at me for support, y'all know, if she was struggling for an answer. And I simply thought he was absolutely amazing, he was so respectful to her and that was really good" (C2; mother).

At that place were examples of good care being provided, including GP health checks (completed for half the patients participating), with GP surgeries taking the initiative to arrange these, and the provision of health promotion strategies past customs services. There were also examples of good transition of care from children to adult services, skillful continuity of intendance, examples where help was obtained rapidly and services providing back up to carers and patients with intellectual disability. A few carers also commented that there were aspects of wellness intendance that were improving, although there was still some mode to get:

"I think that'due south (inpatient intendance) got ameliorate considering they requite you a intendance plan and you answer loads of questions and I call back that's got better, saying that we had the menu thing and then that ways no 1 actually looks at the care program" (C4; mother).

When participants were asked whether they thought that health care had improved in recent years, some responded that either their experience had remained unchanged or had become worse. A few thought that legislative changes in the Uk such as the Disability Bigotry Act and the Mental Capacity Human activity were confusing and did little to improve or clarify things.

Ii. Suggestions for improving care.

Eight patients with intellectual disability and ix carers provided suggestions for improvement. Several participants commented that wellness services could be improved if they provided data in an accessible and piece of cake to read format, or if patients were provided with a health passport or a communication book that enabled clinicians and carers to communicate changes in the treatment plan. Several of the carers commented that services needed to make reasonable adjustments to arrange the needs of people with intellectual inability. This included people with intellectual disability being invited to see a ward prior to a surgical procedure, and being prioritised in some instances, to avoid having to wait as well long before appointments. Other carers suggested reckoner records should highlight that the person has an intellectual disability in order to alarm staff.

"I think aye, one of the things would be, when you go into a physician's surgery, equally far as I know if a person'due south diabetic, information technology comes up, why non take the aforementioned sort of thing, this person has got a learning disability... why not flag it upwardly and maybe there's somewhere they tin sit, or to think, perhaps it doesn't matter if you let them go in earlier someone else, if the state of affairs is stressful" (C1; mother).

Several participants suggested that staff needed to have better cognition and training in communication skills and atmospheric condition that are relevant for people with intellectual inability. Several participants thought it was important that staff had better awareness of individual needs, including more than person centred care.

"I call up it's all down to understanding people really, you know because anybody's so private and their needs are so individual and unless people are enlightened of their needs. You know it's easy to marking someone with special needs simply do they know their special needs, the nigh important affair is awareness" (C9; mother).

A few people suggested that this preparation would be best delivered by involving patients or carers. Suggestions were as well made nearly having access to a hospital liaison or link nurse with expertise in intellectual disability, who could give communication to clinicians, or patients with intellectual disability should exist provided with an abet.

"Possibly go on courses to acquire how to treat people with disabilities properly. Maybe have training sessions with a person with inability actually involved and then they know how to treat them...I think it would be practiced because the manner I've been treated, I don't desire other people treated the same. I don't think it's right" (P9).

"There should be somebody in every infirmary, where some developed or a child with a learning disability is admitted, someone who is an expert could get and appraise the situation and may be stay with the person if they oasis't got someone and exist their abet, and someone who actually knows what autism is similar and what dyspraxia'due south similar so they tin" (C4; female parent).

Comparing themes betwixt patients and carers

Between group comparisons.

The themes that were most reported by patients with intellectual disability were bug with communication and examples of good practice, followed by the substandard intendance of people with intellectual inability, and problems with the complexities of the health intendance system (Table 4). For carers, the most prevalent themes were complexities of the health care system and lack of back up for carers, and the substandard intendance of people with intellectual inability. The least reported themes for both patients with intellectual disability and carers were problems with staff attitudes, knowledge and behaviour and problems with how health professionals relate to carers.

Comparing the agreement in the themes within individual dyads.

The number of themes that were referred to by both the carer and patient in each dyad was compared (Table 4). Reference was made to at least six themes by both the carer and patient in four dyads (dyads iii, 4, 7 and 9). Agreement within the dyads in the themes did not necessarily mean understanding in the accounts given by the patient or the carer. For case, in dyad ane, both the carer and patient commented that the GP'due south advice skills were inadequate. However, the patient reported that accessing back up had been uncomplicated, whereas his carer reported that eligibility issues had fabricated it difficult to admission services. Further examples are given in Tabular array 2. Eight dyads showed understanding in accounts, three showed disagreement in accounts and three were mixed (both agreements and disagreements).

Word

Summary of findings

In this study nosotros investigated the experiences of health treat physical needs from the perspective of patients with intellectual disability and their carers. A number of patients felt that they were discriminated against, or treated differently because of their intellectual disability. Some of these experiences were due to direct bigotry resulting from negative staff attitudes towards patients and carers and failure to treat patients with respect and nobility. Other experiences were due to indirect discrimination arising from lack of staff awareness of patients' needs, and wellness services failing to accommodate the needs of people with intellectual inability.

Barriers in accessing wellness services included communication difficulties experienced by patients due to staff failing to speak directly to them or declining to modify their advice skills; issues accessing services due to lack of information nearly the availability of local services; poor transition of patients from child to developed services; failure of GPs to refer patients to specialist services; and failure to provide interpreters to non-English speakers. Other barriers included lack of support and involvement of carers in health care decisions.

Many of the participants reported examples of proficient intendance and improving practice, such as existence invited for wellness checks, suggesting that some of the initiatives to ameliorate health intendance admission have been successful, although further progress was required. A number of suggestions were fabricated about improving intendance, including the provision of more training for staff in communication and sensation of the needs of patients with intellectual inability; services making reasonable adjustments to back up people with intellectual inability such equally the provision of attainable information, employ of a health passport or communication book; and measures to improve staff attitudes towards people with intellectual disability.

Areas where further progress is required

Many of the findings from this study are in line with enquiry cited in the introduction, in suggesting that individuals with intellectual inability and their carers continue to experience barriers in accessing health care, in spite of initiatives to amend access. Areas that specially need addressing are summarised in Table 5 and include:

I. Support for carers.

Several carers in our study reported health issues, including depression. One study reported that carers of people with intellectual inability had a 40 per cent higher prevalence of health bug, and were 4 times as likely to be suffering from depression, compared to the full general population [25]. Some of the family carers in our study admitted that this meant less urgent wellness needs in the patient were ignored and therefore remained unmet. Some carers reported that they had no access to emotional and financial back up, and that carer assessments past social services had been delayed or not offered. Social services demand to be more proactive in conducting assessments of carers' needs, and in alleviating the burden placed on carers. General Practitioners also need to identify and treat wellness problems in carers.

II. Back up for ethnic minorities and non English speakers.

This study found that South Asians were particularly likely to experience inequalities in accessing health intendance. Such families are often deprived, isolated, and experience racism, language barriers and high levels of stress, and are less likely to be knowledgeable about intellectual disability and services [26]. Families from minority ethnic communities may meet double discrimination as a outcome of having a member with intellectual inability, and having to endure racial bigotry and culturally inappropriate forms of intendance [27], [28]. The stigma of having a child with intellectual disability may lead to carers feeling marginalised by their community, and even being blamed for the child's disability by their own families [29].

There are besides misconceptions amidst service providers that South Asian carers are more likely to be supported past members of the extended family [30], which may be a reason why support is not ever offered. In fact, studies testify that these carers receive niggling support from their families, and that other types of informal support, such equally that provided by back up groups, temples or mosques play only a minor supporting role [31], [32], [33]. In addition, health professionals may hold negative or discriminatory attitudes towards this group. Southward Asians are more likely to receive a delayed diagnosis for medical issues because their concerns are disregarded. Views about consanguineous marriages causing genetic bug, and even intellectual disability, may result in health professionals actualization unsympathetic. This may alienate families and make them reluctant to approach health services for assistance [26] [34], [35]. Wellness services need to ensure that they provide culturally sensitive forms of care and provide interpreters in order to reduce the inequalities caused by the language bulwark.

Iii. Improve referral pathways to specialist services.

In our report we found that five patients (tertiary of the sample) had not been referred (or experienced delays in referral) to specialist services for people with intellectual disability, and that carers had little knowledge of such services. More effective transition arrangements between child and developed services are required, and more than resources need to exist bachelor to carers, including information translated into other languages, about what local services are available.

Iv. Improve uptake of wellness checks.

About one-half the participants in this study reported that they had health checks by their GP. This is similar to UK national statistics of 49 per cent of people with intellectual disabilities receiving a health check between 2010 and 2011 [36]. Although more than GPs are offer health checks, more than needs to be washed to increase the awareness and benefits of health checks among people with intellectual disabilities, in gild to amend uptake [15].

Five. Health services need to brand more reasonable adjustments.

Although there were some examples of services making reasonable adjustments, such as providing a longer date slot, and inviting patients to see the ward before surgery, more progress needs to be made by health services to ensure that reasonable adjustments are made in gild to reduce both indirect and direct bigotry of people with intellectual disability. Adjustments that could exist incorporated by mainstream services include easy read (attainable) clinic messages, and information on medication and procedures; the use of a communication or health passport to communicate health needs and treatment changes; allocation of longer date slots or offering the first appointment and making engagement booking systems easier to use.

Six. More training needs to exist provided to doctors and health care staff on issues relevant to people with intellectual disabilities.

There were examples of poor treatment, diagnostic overshadowing and negative staff attitudes towards individuals with intellectual inability, suggesting that more than needs to be done in ensuring that wellness professionals receive adequate preparation. One positive example of training is the online module in intellectual disability produced by the General Medical Council in the UK, which is aimed at providing doctors with the knowledge and skills required to effectively communicate and treat people with intellectual disabilities [37]. This resource is freely available and could exist used more than widely as a pedagogy aid for wellness professionals across a range of disciplines.

Strengths and limitations of report

The use of dyads has provided a rich and detailed motion-picture show of health experiences from different perspectives, including similarities and differences in perspectives. Although efforts were made to comport separate interviews with patients with intellectual disability and carers, the carer was present in half of the interviews with patients, which may accept influenced the nature of the bug that were discussed. In joint interviews, carers were brash to allow patients to voice their opinions and not to interrupt where possible. Another disadvantage of joint interviews is that personal or sensitive information may be divulged by one participant, which could put the other participant at unease. However, in separate interviews in that location is also the possibility that confidentiality may be compromised, for example if the patient is informed almost discussions that took place with their carer [22], [38]. To prevent the breach of confidentiality, neither the carer nor the patient was given information about the other person's interview.

This report found that in over half the dyads, carers and patients with intellectual disability agreed with each other in the themes and accounts that were given. The comparability of findings between two or more groups may be considered as a form of triangulation, which is an assessment of whether the findings are valid. However, some researchers regard triangulation as an approach to ensuring that data collection and analysis is comprehensive and reflexive, rather than as a examination of validity [39]. There were some disagreements in the accounts given by carers and patients. One explanation is that the differences in stance reflect the different roles and experiences of patients with intellectual disability and carers. The patient's level of cognitive development will as well influence the extent to which he or she is able to process and internalise their health care experiences and differentiate between good and inadequate healthcare.

A further forcefulness of the study is the relatively large sample size, as previous qualitative studies investigating health experiences have included fewer participants. Nosotros included patients from a range of different backgrounds with both balmy or moderate intellectual disability, and varying physical and mental health needs, which provided a various sample and a range of different perspectives. In that location was a relatively big sample of participants from the South Asian customs, and the study provides further insight into the experiences of this group. Participants were also recruited from a number of different settings and locations.

One of the limitations of this study is that l almost all of the carers were female and were largely breezy carers (parents and partners). The wellness experiences of male carers and paid carers may be very different. In that location were no participants from Black (e.g. African or Caribbean) or other Asian backgrounds (east.g. Chinese), and the views of individuals with severe and profound intellectual disability were not considered in this written report. The issues raised in this study were also influenced by the interview schedule, which may take limited the exploration of other issues. In addition, the participants who agreed to take role in the interviews may have had more health problems and more negative experiences of health care. Some caution also needs to exist given to interpreting that incidents of poor care were due to the patient's intellectual inability. In the absence of experimental research, we can but conclude that these were perceptions rather than conclusive show.

It should also be noted that the principal researcher'due south (AA) professional person and personal background volition have shaped the analysis and interpretation of the data (meet Table 6).

Implications of the study

Inequity in accessing healthcare for people with disability is a global issue. Recently the World Health Organisation published its "World Study on Disability" [forty]. The report makes several recommendations on improving access to health care. Many of these recommendations have already been implemented in the United kingdom of great britain and northern ireland in relation to people with intellectual disability, and this study suggests that they accept had some impact on improving access to health care for this population. Information technology is important to share this experience with other countries that may exist in the process of implementing similar changes, but also to implement these changes more widely so that they are considered for other populations that experience significant barriers to equitable health care, either due to cognitive or communication impairments, or complex wellness needs. However, one of the lessons learnt so far is that long term delivery is required from both authorities and health organisations, alongside measures to enforce and evaluate the successful implementation of strategies.

Directions for futurity inquiry

Longitudinal qualitative studies where participants are interviewed several times over several months or years may provide more insight into current practice and whether access to health services is improving for patients and their carers. Large scale cross sectional studies on healthcare access would provide more representative data on the prevalence of discrimination and other barriers preventing healthcare access, and could be used to plan local health services.

Acknowledgments

Thank you to the following people and organisations for their support and assistance in conducting this project. Sherifa Patel (advancement support worker for carers), Hannah Kelly (Clinical Studies Officer; Oxleas NHS Foundation Trust), Hannah Antoniades (Clinical Research Lead; Somerset Partnership NHS Foundation Trust), Kelly Hayman (Clinical Studies Officer, Somerset Partnership NHS Foundation Trust), Richard Lohan (accessible information worker), admin back up staff at the Camden and Islington NHS Foundation Trust, and the Mental Health Research Network.

Writer Contributions

Conceived and designed the experiments: AA KS VR AS MK AH. Performed the experiments: AA KS. Analyzed the data: AA KS. Contributed reagents/materials/analysis tools: AA KS VR. Wrote the newspaper: AA VR KS AS MK AK.

References

1. i. Emerson Eastward, Baines S (2010) Health inequalities and people with learning disability in the Britain: 2010. Durham: Improving Wellness and Lives: Learning Disability Observatory. Available: http://www.improvinghealthandlives.org.u.k./publications/934/Health_Inequalities_and_People_with_Learning_Disabilities_in_the_UK:_2010. Accessed 2013 July.
2. 2. Glover M, Ayub Grand (2010) How People with Learning Disabilities Die. Durham: Improving Health and Lives: Learning Disabilities Observatory. Available: http://www.improvinghealthandlives.org.united kingdom/gsf.php5?f=8586. Accessed 2013 July.
3. three. Disability Rights Commission (2006) Equal handling: Closing the gap. A formal investigation into the physical health inequalities experienced past people with learning disabilities and/or mental health bug. London: Disability Rights Committee.
4. 4. MENCAP (2007) Death by indifference. London: MENCAP.
5. v. Michael J (2008) Healthcare for all: report of the independent inquiry into access to healthcare for people with intellectual disabilities. London: Department of Health. Bachelor: http://webarchive.nationalarchives.gov.uk/20130107105354/http://world wide web.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_099255. Accessed 2013 July.
6. 6. Ali A, Hassiotis A (2008) Illness in people with intellectual disabilities. BMJ 336: 570–571.
   • View Article
   • Google Scholar
7. 7. Ward RL, Nichols Advertizing, Freedman RI (2010) Uncovering health Intendance inequalities among adults with intellectual and developmental disabilities, Wellness Soc Work. 35: 280–290.
   • View Commodity
   • Google Scholar
8. 8. Wullink Yard, Veldhuijzen West, Lantman- de Valk HMJ, Metsemakers JFM, Dinant Chiliad-J (2009) Doctor-patient communication with people with intellectual disability- a qualitative study. BMC Fam Prac 10: 82.
   • View Article
   • Google Scholar
9. 9. Ziviani J (2004) Meeting in the middle: improving advice in master health care consultations with people with intellectual inability. J Intellect Dev Disabil 29: 211–225.
   • View Commodity
   • Google Scholar
10. ten. Langan J, Whitfield M, Russell O (1994) Paid and unpaid carers: their role in and satisfaction with primary health care for people with learning disabilities. Health Soc Care Customs ii: 357–365.
    • View Article
    • Google Scholar
11. 11. Broughton S, Thomson Grand (2000) Women with learning disabilities: risk behaviours and experiences of the cervical smear test. J Adv Nurs 32: 905–912.
    • View Article
    • Google Scholar
12. 12. Thornton C (1999) Effective health intendance for people with intellectual disabilities: A formal carers' perspective. J of Psychiatr Mental Wellness Nurs 6: 383–390.
    • View Commodity
    • Google Scholar
13. 13. Fisher K, Haagen B, Orkin K (2005) Acquiring medical services for individuals with mental retardation in community-based housing facilities. Appl Nurs Res eighteen: 155–159.
    • View Commodity
    • Google Scholar
14. xiv. Minnes P, Steiner K (2009) Parent views on enhancing the quality of health care for their children with delicate X syndrome, autism or Down's syndrome. Child Intendance Health Dev 35: 250–256.
    • View Article
    • Google Scholar
15. 15. Dinsmore AP (2012) A small-calibration investigation of infirmary experiences among people with a learning inability on Merseyside: speaking with patients and their carers. British Periodical of Learning Disabilities xl: 201–212.
    • View Article
    • Google Scholar
16. 16. Webber R, Bowers B, Bigby C (2010) Hospital experiences of older people with intellectual inability: Responses of group home staff and family members. J Intellect Dev Disabil 35: 155–164.
    • View Commodity
    • Google Scholar
17. 17. Fox D, Wilson D (1999) Parents' experiences of general infirmary access for adults with learning disabilities. Journal of Clinical Nursing, eight, 610–614.
18. 18. Iacono T, Davis R (2003) The experiences of people with developmental inability in emergency departments and hospital wards. Res Dev Disabil, 24, 247–264.
19. 19. Gibbs SM, Brown MJ, Muir WJ (2008) The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study. J intellect disabil Res, 2008 52: 1061–1077.
    • View Article
    • Google Scholar
20. 20. Hoghton M, Martin G, Chauhan U (2012) Annual health checks for people with intellectual disabilities. BMJ 345: e7589.
    • View Article
    • Google Scholar
21. 21. Robertson J, Roberts H, Emerson E (2010) Health Checks for People with Learning Disabilities: Systematic Review of Impact. Durham: Improving Health & Lives: Learning Disability Observatory.
22. 22. Kendall M, Murray SA, Carduff Due east, Worth A, Harris F, et al. (2009) Use of multiperspective qualitative interviews to understand patients' and carers' beliefs, experiences and needs. BMJ 339: b4122.
    • View Article
    • Google Scholar
23. 23. Donner B, Complain R, Scior K (2010) Mainstream in-patient mental health care for people with intellectual disabilities: Service user, carer and provider experiences. J Appl Res Intellect Disabil 23: 214–225.
    • View Article
    • Google Scholar
24. 24. Braun 5, Clarke Five (2006) Using thematic analysis in psychology. Qual Res Psychology 3: 77–101.
    • View Commodity
    • Google Scholar
25. 25. McGrother C, Hauck A, Bhaumick S, Thorp C, Taub N (1996) Community care for adults with learning disability and their carers. Needs and outcomes from the Leicestershire register. J Intellect Disabil Res twoscore: 183–190.
    • View Article
    • Google Scholar
26. 26. Mir G, Nocon A, Ahmad Westward, Jones L (2001). Learning Difficulties and Ethnicity. London: Department of Health.
27. 27. Azmi South, Hatton C, Emerson East, Caine A (1997) Listening to adolescents and adults with intellectual disability from South Asian communities. J Appl Res Intellect Disabil 10: 250–263.
    • View Article
    • Google Scholar
28. 28. O'Hare J (2003) Learning disability and ethnicity: achieving cultural competence. Advances in Psychiatric Treatment 9: 166–176.
    • View Article
    • Google Scholar
29. 29. Fazil Q, Bywaters P, Ali Z, Wallace Fifty, Singh One thousand (2002) Disadvantage and bigotry compounded: The experience of Pakistani and Bangladeshi parents of disabled children in the UK. Disabil Soc 17: 237–253.
    • View Article
    • Google Scholar
30. 30. Ahmad Westward, Atkin One thousand (1996) 'Race' and Community Care. Buckingham: Open up University Press.
31. 31. Hatton C, Azmi S, Caine A, Emerson E (1998) Informal carers of adolescents and adults with learning difficulties from the S Asian communities: family circumstances, service support and carer stress. Br J Soc Work 28: 821–837.
    • View Article
    • Google Scholar
32. 32. Hatton C, Azmi S, Emerson E, Caine A (1997) Researching the needs of South Asian people with learning difficulties and their families. Ment Health Care ane: 91–94.
    • View Article
    • Google Scholar
33. 33. Emerson E, Robertson J (2002) Future demand for services for young adults with learning disability from South Asian and blackness communities in Birmingham. Lancaster: Institute for Wellness Enquiry, Lancaster University, 2002.
34. 34. Butt J, Mirza M (1996) Social Care and Black Communities. London: HMSO.
35. 35. Baxter C (1998). Learning difficulties, in Due south. Rawaf and Five. Bahl (Eds.), Assessing Health Needs of People from Minority Indigenous Groups (231–242). London: Regal College of Physicians/Faculty of Public Health Medicine.
36. 36. Emerson Due east, Hatton C, Robertson J, Roberts H, Baines S, et al.. (2011). People with Learning Disabilities in England 2011: Services and Supports. Durham: Improving Health and Lives: Learning Disability Observatory. Available: http://world wide web.arcuk.org.great britain/membersarea/wp-content/uploads/2012/05/IHAL-PWLD-England-2011.pdf. Accessed 2013 July.
37. 37. Full general Medical council website. Bachelor: www.gmc-britain.org/learningdisabilities. Accessed 2013 July.
38. 38. Eisikovits Z, Koren C (2010) Approaches to and outcomes of dyadic interview assay. Qual Wellness Res 20: 1642–1655.
    • View Article
    • Google Scholar
39. 39. Mays N, Pope C (2000) Qualitative research in healthcare: assessing quality in qualitative inquiry. BMJ 320, 50–52.
40. twoscore. World Health Organisation (2012). The Earth Study on Disability. http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf.

hamnersheeptiou.blogspot.com

Source: https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0070855

Share this post