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Information Provision (information + provision)
Selected AbstractsInformation provision to clients with stroke and their carers: Self-reported practices of occupational therapistsAUSTRALIAN OCCUPATIONAL THERAPY JOURNAL, Issue 3 2010Louise Gustafsson Background:,The literature promotes the use of a wide range of educational materials for teaching and training clients with chronic conditions such as stroke. Client education is a valuable tool used by occupational therapists to facilitate client and carer ability to manage the stroke-affected upper limb. The aim of this study was to identify what information was provided to clients and carers, how this information was delivered, when the information was delivered and the client factors that influenced the method of information provision. Methods:,Convenience and snowball sampling was used to recruit occupational therapists working in stroke. Twenty-eight participants completed the study questionnaire anonymously and their responses were summarised descriptively. Results:,There was a clinically important trend for carers to receive less information than clients. Written and/or verbal information was the favoured method for delivering information related to handling (57%), soft-tissue injury minimisation (46.4%) and oedema management (50%). Information was delivered with decreasing frequency from admission (86%) to discharge (64%). More than 90% of participants indicated that the client's cognitive ability, visual ability, level of communication, primary language and perceptual ability were considered prior to the delivery of information. Discussion:,Participants regularly conveyed information to clients and carers with respect to management of the stroke-affected upper limb. However, an increased emphasis on the development of practical self-management skills, awareness of the impact of personal factors and a timeline for information provision may prove useful. [source] Mapping the information resources available to patients with colorectal cancerEUROPEAN JOURNAL OF CANCER CARE, Issue 4 2010S.J. KING phd KING S.J., LIVINGSTON P.M., TURNER L., BYRNE K., JOHN M., SIDWELL J. & SCOTT C. (2010) European Journal of Cancer Care Mapping the information resources available to patients with colorectal cancer The objectives of this study were to identify gaps in information provision along the colorectal cancer (CRC) treatment pathway as provided by health services within the North Eastern Metropolitan Integrated Cancer Service in Victoria Australia; to evaluate the information and recommend consistent, high quality health information resources; and to recommend strategies to improve delivery of patient information. A random sample of health professionals (n= 47) from various disciplines at eight health service sites participated in semi-structured interviews regarding the types of information they provided to CRC patients. Information items were mapped against a published CRC patient management framework and evaluated. A total of 193 information items were collected with 24 items specific to CRC. Gaps in information provision were evident in the community, at diagnosis, in clinics, when treatment was determined and when completed. The quality of information delivery to CRC patients across the public health sites was variable. Resources were often unavailable, out of date and inaccessible in other languages. Results indicate a need to improve health information availability and resource delivery to all CRC patients across different health services particularly at diagnosis and after treatment. Further research is required to determine patient preferences for information about CRC. [source] A review of climate risk information for adaptation and development planningINTERNATIONAL JOURNAL OF CLIMATOLOGY, Issue 9 2009R. L. Wilby Abstract Although the use of climate scenarios for impact assessment has grown steadily since the 1990s, uptake of such information for adaptation is lagging by nearly a decade in terms of scientific output. Nonetheless, integration of climate risk information in development planning is now a priority for donor agencies because of the need to prepare for climate change impacts across different sectors and countries. This urgency stems from concerns that progress made against Millennium Development Goals (MDGs) could be threatened by anthropogenic climate change beyond 2015. Up to this time the human signal, though detectable and growing, will be a relatively small component of climate variability and change. This implies the need for a twin-track approach: on the one hand, vulnerability assessments of social and economic strategies for coping with present climate extremes and variability, and, on the other hand, development of climate forecast tools and scenarios to evaluate sector-specific, incremental changes in risk over the next few decades. This review starts by describing the climate outlook for the next couple of decades and the implications for adaptation assessments. We then review ways in which climate risk information is already being used in adaptation assessments and evaluate the strengths and weaknesses of three groups of techniques. Next we identify knowledge gaps and opportunities for improving the production and uptake of climate risk information for the 2020s. We assert that climate change scenarios can meet some, but not all, of the needs of adaptation planning. Even then, the choice of scenario technique must be matched to the intended application, taking into account local constraints of time, resources, human capacity and supporting infrastructure. We also show that much greater attention should be given to improving and critiquing models used for climate impact assessment, as standard practice. Finally, we highlight the over-arching need for the scientific community to provide more information and guidance on adapting to the risks of climate variability and change over nearer time horizons (i.e. the 2020s). Although the focus of the review is on information provision and uptake in developing regions, it is clear that many developed countries are facing the same challenges. Copyright © 2009 Royal Meteorological Society [source] Food allergic consumers' preferences for labelling practices: a qualitative study in a real shopping environmentINTERNATIONAL JOURNAL OF CONSUMER STUDIES, Issue 1 2009Jantine Voordouw Abstract Food allergy is a chronic disease that can only be managed through avoidance of problematic proteins in the diet. Inappropriate communication about food allergens can cause stress and insecurity, which may have a negative impact on quality of life. The aim was to investigate whether information provided through current labelling practices meets the need of food allergic consumers. A total of 40 participants (20 adult food allergy suffers and 20 parents of food allergic children) were recruited from two different European countries (Greece and The Netherlands), and interviewed while shopping in a supermarket. Participants were asked to purchase 15 potentially problematic food items as if for their own household. Their information search behaviour was observed, and participants were questioned about their preferences for food allergen information provision. Participants reported experiencing problems associated with current food allergy information provision. It was reported that inappropriate use of fonts, colours and languages, application of precautionary labelling and lack of harmonization in labelling practices across countries can cause (un)necessary dietary restrictions for food allergic consumers. Research is needed to investigate the feasibility and implementation possibilities for new information delivery strategies and amendments to existing European labelling policy. [source] Alzheimer's disease in real life , the dementia carer's surveyINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 5 2008Jean Georges Abstract Background Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services. Methods The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services. Results Each country had ,200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10,h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good. Conclusions Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour. Copyright © 2008 John Wiley & Sons, Ltd. [source] What people with multiple sclerosis perceive to be important to meeting their needsJOURNAL OF ADVANCED NURSING, Issue 1 2007Angus Forbes Abstract Title. What people with multiple sclerosis perceive to be important to meeting their needs Aim., This paper is a report of the findings of a survey in which people with multiple sclerosis identified what they believed would be helpful in meeting their current needs. Background., People with multiple sclerosis have low levels of satisfaction with the health and social care that they receive, but previous studies suggest that they have a broad range of physical, psychological and social needs. Method., A total of 714 people with different levels of disease impact who were participating in a prospective study evaluating multiple sclerosis specialist nurses were asked, ,What one thing would be most helpful in meeting your current needs?' The question was included in the postal questionnaire used for the study (mailed in 2001 and 2002). The overall response rate for usable returns (at both time points) was 42%. Descriptive statistics on the frequency of codes and categories generated by content analysis were compiled and compared in relation to demographic and disease characteristics. Findings., A total of 445 people responded to the question. Seven categories were identified: medical treatment (29%, n = 126); socio-environmental support and adaptation (19%, n = 81); enhanced care provision (18%, n = 79); information provision (9%, n = 38); rehabilitation therapies (7%, n = 29); non-professional care (6%, n = 28); and psychological support (3%, n = 15). Nine per cent of responses (n = 39) were not coded as their meanings were unclear. Socio-environmental support, rehabilitation and non-professional care were more frequently identified by those with greater disease impact. Information was identified as a stronger need for those in lower disease impact groups. Conclusion., The findings could provide the basis for developing a multiple sclerosis-specific service satisfaction tool. This could be helpful in assessing the quality of provision, given current variations in the coverage and quality of care provided. Nurses could use such a tool to assess the quality of care in a given population, thereby highlighting gaps in service provision. [source] Capacity of People with Intellectual Disabilities to Consent to Take Part in a Research StudyJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 2 2007Linda Dye Background, Within the context of current legislation relating to mental capacity in adults, the capacity of people with intellectual disabilities to consent to take part in research studies and the impact of different forms of information provision was experimentally investigated. Materials and methods, A questionnaire measure of ability to consent to take part in this research study was administered individually to participants. A total of 102 participants with intellectual disabilities were recruited from three day services for adults with intellectual disabilities. Consent information appertaining to taking part in an actual research project was presented to participants and their capacity assessed using a questionnaire. Three experimental conditions were used: ,,Control (n = 34) , consent information was presented followed by the questionnaire. ,,Section (n = 34) , consent information was broken into sections and the appropriate questions were asked following each section. ,,Photograph (n = 34) , consent information was accompanied by six colour photographs, followed by the questionnaire. Participants also completed measures of memory ability, verbal ability and non-verbal problem-solving ability. Results, Seventeen participants withdrew from the study at some point. Of the remaining 85 participants, no significant differences in ability to consent scores were found between the experimental conditions. Using this measure, only five participants (5.9%) were deemed able to consent, i.e. scored the minimum required on each aspect of consent. Conclusions, The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent. [source] Effective Management of ICD Patient Psychosocial Issues and Patient Critical EventsJOURNAL OF CARDIOVASCULAR ELECTROPHYSIOLOGY, Issue 11 2009SAMUEL F. SEARS Ph.D. The clinical management of implantable cardioverter-defibrillator (ICD) patients involves successful medical and psychosocial care to reduce mortality and morbidity. Desirable quality of life (QoL) and psychosocial outcomes for ICD patients are achievable for a majority of ICD patients. Patient critical events, such as ICD shocks or ICD recalls, may occur that can dramatically alter the course of patient adjustment if not properly managed. Continuing care strategies that attend to patient critical events as they emerge may improve the psychosocial adjustment and improve the return to optimal daily functioning for ICD patients. This paper reviews QoL and psychosocial outcomes for ICD patients, patient critical events, and clinical implications for patient care. Patient critical events discussed in this paper include perioperative education, ICD shock events, device recalls, and end of life. The clinical management strategies for each of these patient critical events are suggested including patient education, psychosocial information provision, activity prescriptions, recall planning, and shock planning. [source] Preoperative information needs of children undergoing tonsillectomyJOURNAL OF CLINICAL NURSING, Issue 19-20 2010Aoife Buckley Aims and objectives., To identify the information needs of children undergoing tonsillectomy with reference to content of information, method of delivery, information providers and timing of information provision. Background., Tonsillectomy can be anxiety provoking for children and preoperative preparation programmes are long recognised to reduce anxiety. However, few have been designed from the perspectives of children and to date little is known about how best to prepare children in terms of what to tell them, how to convey information to them, who can best provide information and what is the best timing for information provision. Design., A qualitative descriptive study. Method., Data were collected from nine children (aged 6,9) using interviews supported by a write and draw technique. Data were coded and categorised into themes reflecting content, method, providers and timing of information. Results., Children openly communicated their information needs especially on what to tell them to expect when facing a tonsillectomy. Their principal concerns were about operation procedures, experiencing ,soreness' and discomfort postoperatively and parental presence. Mothers were viewed as best situated to provide them with information. Children were uncertain about what method of information and timing would be most helpful to them. Conclusion., Preoperative educational interventions need to take account of children's information needs so that they are prepared for surgery in ways that are meaningful and relevant to them. Future research is needed in this area. Relevance to clinical practice., Practical steps towards informing children about having a tonsillectomy include asking them what they need to know and addressing their queries accordingly. Child-centred information leaflets using a question and answer format could also be helpful to children. [source] Americans' Nanotechnology Risk Perception:JOURNAL OF INDUSTRIAL ECOLOGY, Issue 3 2008Assessing Opinion Change Summary Although proposed nanotechnology applications hold great promise, little is known about the potential associated risks. This lack of clarity on the level of risk associated with nanotechnology has forced people to make decisions about consumption with incomplete information. A national random digit dialing telephone survey (N= 1014) was conducted in the United States to assess knowledge of nanotechnology and perception of risk in August 2006. This investigation looks critically at individuals' responses to questions about the balance of risks and benefits of nanotechnology, both at the outset of the survey and after respondents were given a brief introduction to the potential benefits and risks of the technology. Models were created to characterzise respondents who said they did not know how nanotechnology's risks and benefits balanced in the "preinformation" condition but who, in the postinformation condition, had a different opinion. Respondents who were highly educated, members of the Republican Party, or male were more likely to switch from "don't know" in the preinformation condition to "benefits outweigh risks" in the postinformation condition, whereas respondents who were less educated, members of the Democratic Party, or female were more likely to switch from "don't know" in the preinformation condition to "risks outweigh benefits" in the postinformation condition. This is the first study to our knowledge to develop a significant model of nanotechnology risk perception change, specifically with regard to gender differences. The power of information provision to sway opinions is also supported, highlighting the importance of developing educational efforts targeting vulnerable populations. [source] Proactive consumer consultation: the effect of information provision on response to transgenic animalsJOURNAL OF PUBLIC AFFAIRS, Issue 3-4 2005David Castle A national study is reported which proactively engaged 1365 Canadian consumers and solicited their opinions concerning new transgenic salmon and pork products which have not yet entered the marketplace. Respondents were methodically requested to provide initial free-association responses, and then scaled responses to product concepts about which progressively more information was revealed. This combined qualitative and quantitative method was pursued in order to determine initial knowledge levels and subsequent responses with a minimal amount of cueing via question probes. The results indicate that disclosure concerning benefits and risks of these new technologies did not harm judgements about them or estimates of purchase intent. A significant determinant of opinions was the gender of the respondent. Females were more negatively predisposed overall to the concepts and more sensitive to specific information regarding product benefits and risks. The research offers a methodological template for public consultation and communication pre-testing for new biotechnological products. Implications for regulatory policy and information dissemination for new food biotechnology products are discussed. Copyright © 2005 John Wiley & Sons, Ltd. [source] Older peoples' satisfaction with home-based dialysisNEPHROLOGY, Issue 4 2010SARAH DERRETT ABSTRACT: Background: The proportion of older people receiving dialysis is rapidly increasing. The typical choice for older patients is between home-based peritoneal dialysis (PD) and clinic-based haemodialysis (HD). Some centres have been successful in encouraging all patients , including older patients , to have home-based self-administered PD or HD. Aim: To (i) describe the overall satisfaction with renal services among older patients dialysing, or in training, with HD or PD at home; and (ii) examine the relationship between residential distance from the nephrology unit and satisfaction with home-based dialysis. Methods: Participants were aged 60 years or more; and were either dialysing at home or training for dialysis at home. Two methods of cross-sectional data collection were used: (i) structured quantitative interviews with all participants; and (ii) qualitative interviews with a selected subgroup. Results: Participants comprised 45 patients on dialysis (94% of 48 eligible). Their average age was 68 years. Duration of dialysis averaged 28 months (range 3,150 months). Ratings of ,very good or excellent' were reported for dialysis treatment by 40 (89%) patients. Patients on dialysis, despite experiencing frustration with dialysis itself, expressed satisfaction across four categories: staff, information provision, involvement in decision-making and confidence in managing dialysis. Dissatisfaction was infrequent. Conclusion: This pilot study suggests that older patients trained to dialyse at home using PD or HD are highly satisfied with the nephrology service , even when living remote from the nephrology unit. Home-based dialysis is possible in older patients with levels of comorbidity and disease severity as serious as elsewhere. [source] Maternal experiences of peanut avoidance during pregnancy/lactation: An in-depth qualitative studyPEDIATRIC ALLERGY AND IMMUNOLOGY, Issue 6 2005Joanna Turke In 1998 the Department of Health Committee on Toxicity of Chemicals in Food, Consumer Products and the Environment issued a report to British general practitioners, which advised that pregnant mothers with a family history of atopy may wish to avoid peanuts during pregnancy/lactation. To explore the lived-in experience of mothers who avoided/did not avoid peanuts during pregnancy/lactation in the light of the information issued. A qualitative approach, using unstructured in-depth interviews to explore what it was like for mothers to have a particular experience. A purposive sample frame was designed to ensure a maximum variation of participants. Forty-two interviews were conducted: 25 participants avoided peanuts; 15 with a family history of atopy and 10 with no such history. Seventeen participants did not avoid peanuts; 10 with a family history of atopy and seven with no such history. Emergent themes included: variations in information provision, a lack of clarity in relation to information and advice about peanut avoidance, the risks entailed and the introduction of peanuts to the developing child's diet; the importance of atopy in influencing participants' decisions to avoid peanuts and the importance of individual's choice in the decision making process. There was a significant difference in family size with respect to avoidance behaviour with ,avoider' families being smaller (p = 0.007). Avoidance was more likely in single child families (71% vs. 53%) although this difference was not significant. Improvements to the experience of avoidance and/or non-avoidance were primarily focused around provision of information and advice. In particular, a need for clear, consistent factual information and advice about the real risks associated with peanut consumption during pregnancy/lactation, and to whom these risks apply. [source] Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patientsPSYCHO-ONCOLOGY, Issue 1 2006Jeff Dunn Abstract Colorectal cancer is one of the most common invasive cancers, and is responsible for considerable physical and psychosocial morbidity. Understanding the quality of life experienced by colorectal cancer patients is essential for evaluating the full impact of the disease on individuals, their families and their communities. Patient perspective is essential in establishing a proper understanding of the quality of life of colorectal cancer patients. Despite this, few studies have employed a qualitative methodology to explore quality of life issues for colorectal cancer patients. A review of the literature identified only seven qualitative studies pertaining to quality of life issues for colorectal cancer patients, a surprising finding given the prevalence of this cancer. Accordingly, this study sought to build on the findings of previous qualitative research by providing descriptive data on the quality of life and psychosocial variables most salient to colorectal cancer patients. Six core themes emerged from interview and focus group data: Satisfaction with diagnosis and treatment; support (including information provision); quality of life; benefits of diagnosis; making sense of the cancer experience; and coping strategies. The information derived from this study will help inform the development of supportive care services to address the needs of the increasing number of people diagnosed with colorectal cancer. Copyright © 2005 John Wiley & Sons, Ltd. [source] Do women have equitable access to quality breast prosthesis services?AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, Issue 4 2000P LIVINGSTON Although up to 90% of women who have had a mastectomy use breast prostheses, significant gaps exist around current breast prosthesis services for Australian women. These gaps include the timeliness and quality of information provision, the disparity in financial assistance, and the lack of knowledge regarding the determinants of what constitutes a "quality" breast prosthesis. Revised policy initiatives are central to addressing these gaps to ensure equitable access to quality breast prosthesis services. [source] Regional Matters: An Inter-agency Approach to Understanding Regional IssuesAUSTRALIAN JOURNAL OF PUBLIC ADMINISTRATION, Issue 2 2003Fiona McKenzie Whole-of-government approaches to policy development are increasingly seen as critical in developing comprehensive understanding of issues and development of policies. This article argues that cooperative approaches to using and understanding information are as important as cooperative approaches to policy development and implementation. In August 2002 the Victorian government released Regional Matters: An Atlas of Regional Victoria which was the result of whole-of-government collaboration. The publication provided a review of regional issues across a wide range of topics. This article highlights both the opportunities and challenges of a whole-of-government approach using the experience of this Regional Atlas project. This article also puts forward some lessons that may be used to enhance whole-of-government approaches to research and information provision. [source] Family caregivers' perceptions of hospital-based allied health services post-stroke: Use of the Measure of Processes of Care to investigate processes of careAUSTRALIAN OCCUPATIONAL THERAPY JOURNAL, Issue 3 2010Annette Lovat Aim:,To investigate family caregiver perceptions of allied health professional processes of care and support in hospital following stroke, and to test an adapted version of the Measure of Processes of Care (MPOC) for its suitability of use in the stroke care setting. Methods:,The first stage involved the adaptation and refinement of the MPOC, designed to measure caregiver perceptions of processes of professional care and support across five care dimensions. The second stage involved mailing out of questionnaires to primary caregivers of stroke survivors. A total of 107 completed questionnaires were included in the analysis. The reliability of the adapted questionnaire was assessed and summary statistics were computed. Results:,The reliability of the adapted MPOC was found to be high, with good internal consistency of items within each subscale. Mean scores indicated that caregivers were most likely to report negative perceptions of the way allied health professionals engaged with and supported them, particularly in the area of information provision. Conclusion:,The number of families being affected by stroke is predicted to rise substantially in the near future. Allied health professionals have a significant role to play in supporting family caregivers. Results highlight caregiver-identified areas of weakness in current clinical practice. [source] Information provision to clients with stroke and their carers: Self-reported practices of occupational therapistsAUSTRALIAN OCCUPATIONAL THERAPY JOURNAL, Issue 3 2010Louise Gustafsson Background:,The literature promotes the use of a wide range of educational materials for teaching and training clients with chronic conditions such as stroke. Client education is a valuable tool used by occupational therapists to facilitate client and carer ability to manage the stroke-affected upper limb. The aim of this study was to identify what information was provided to clients and carers, how this information was delivered, when the information was delivered and the client factors that influenced the method of information provision. Methods:,Convenience and snowball sampling was used to recruit occupational therapists working in stroke. Twenty-eight participants completed the study questionnaire anonymously and their responses were summarised descriptively. Results:,There was a clinically important trend for carers to receive less information than clients. Written and/or verbal information was the favoured method for delivering information related to handling (57%), soft-tissue injury minimisation (46.4%) and oedema management (50%). Information was delivered with decreasing frequency from admission (86%) to discharge (64%). More than 90% of participants indicated that the client's cognitive ability, visual ability, level of communication, primary language and perceptual ability were considered prior to the delivery of information. Discussion:,Participants regularly conveyed information to clients and carers with respect to management of the stroke-affected upper limb. However, an increased emphasis on the development of practical self-management skills, awareness of the impact of personal factors and a timeline for information provision may prove useful. [source] Women's perceptions of decision-making about hysterectomyBJOG : AN INTERNATIONAL JOURNAL OF OBSTETRICS & GYNAECOLOGY, Issue 2 2004Z. Skea Objective To explore women's views of decision-making relating to hysterectomy. Design Structured questionnaire and in-depth interview surveys. Setting A teaching hospital and a district general hospital in northeast Scotland. Sample Women scheduled for hysterectomy for benign menstrual problems. Methods Pre-operative questionnaires were sent to a consecutive sample of women booked for hysterectomy. A purposive sample was interviewed post-operatively. Main outcome measures Women's experiences of, and satisfaction with, information provision, communication and decision-making processes; the relationship between views of decision-making processes and decisions made. Results One hundred and four women (66%) returned questionnaires. Most responded positively to structured questions about the process by which the decision to have a hysterectomy was reached. Almost all (97%) reported satisfaction with the decision made. Twenty women were interviewed post-operatively. A number, including some who had responded positively on the questionnaire, described aspects of the decision-making process that were suboptimal. Women's perceptions of the decision-making process, including the way their doctors communicated with them, did impinge on their views of the course of action selected. Some women had residual doubts about the appropriateness of hysterectomy. Conclusions In a significant minority of women, there are important shortcomings in current patterns of information provision and communication relating to decision-making. These are unlikely to be picked up by conventional structured patient feedback surveys. Further efforts are required to ensure that women are adequately informed and involved in decisions about gynaecological treatments. [source] 2241: Principles of genetic counsellingACTA OPHTHALMOLOGICA, Issue 2010G HALL Purpose To present the genetic counselling needs of families with inherited eye disease. Methods A presentation on the counselling challenges and ethical dilemmas in genetic services for inherited eye disease using case illustrations and review of research and current literature. Results Genetic counselling for families with inherited eye disease is rapidly advancing with improvements in molecular testing leading to accurate diagnosis and information for families. With increasing patient demand and expectation, families request genetic counselling to understand the inheritance pattern and the risks to themselves and their children. However, the heterogeneity, variable penetrance and overlapping phenotypes make this particularly challenging in genetic eye disease. Genetic counselling is a communication process to provide information about the genetic condition, its inheritance and to facilitate decision-making around genetic testing and reproduction. Genetic counsellors have experience in helping individuals decide and come to terms with results from genetic testing such as pre-symptomatic testing, childhood testing and pre-natal diagnosis. In addition, families are often coping with the psychological burden of progressive blindness and the impact of vision loss and risk to other family members. Recent publications highlight the disparity in specialist service provision for families with inherited eye disease and calls for research and improvements in evidenced-based practice. Conclusion Families with inherited eye disease have complex genetic counselling needs requiring multidisciplinary co-ordination of services for accurate diagnosis, information provision, genetic testing and decision-making, and support and follow-up. [source] | ||||||||||||||||