Shared decision-making with people with intellectual disabilities in the last phase of life : a scoping review

Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life

Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities : dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process

Item does not contain fulltextBACKGROUND: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. METHODS: This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. RESULTS: The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. CONCLUSION: The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making

Psychosocial support for families of children with neurodisability who have or are considering a gastrostomy: the G-PATH mixed-methods study

Background Evidence reviews recommend consistent and structured support for children with neurodisability and their caregivers in care pathways in which professionals recommend a gastrostomy feeding tube. To date, and to our knowledge, no research has shown how these recommendations have been implemented. Objectives The objectives were to describe different exemplar models of psychosocial support and provide an estimate of their resources and costs. Design This was a mixed-methods study involving (1) a web-based survey, (2) a qualitative, collective case study of psychosocial support provision in four services and (3) an estimate of costs and preference through a willingness-to-pay study. Setting Four service configurations in different locations in England and Scotland. Participants Participants were staff who responded to a survey (n = 67) and interviewees (staff, n = 58; parents/children, n = 29). Findings Psychosocial support was rarely formalised or documented; it was delivered by different members of the multidisciplinary team, rather than by designated staff, and it was often integrated into appointments dominated by clinical care. Parents expressed different needs for support but reported little opportunity to discuss emotional aspects. Psychologists were not routinely involved and, in general, families were underserved by psychosocial services. Professionals constructed families’ need for psychosocial support in terms of their own roles and the management of risk. Mechanisms for integrating and delivering support were identified, including models of care that linked community and tertiary health services and integrated health and education through pooled budgets. Although generally valued by both staff and parents, peer-to-peer parent support was not consistently offered. Barriers included concerns about confidentiality and appropriately matching parents. Parents participated as members of a feeding committee at one site. Three analytical constructs described the provision of psychosocial support: ‘hidden work’, expressing emotional vulnerability and negotiations around risks and values. The cost-of-support study found that there was a mean of 2.25 appointments (n = 8 parents or carers) over the previous 12 months. The cost of health-care professionals’ time spent on providing psychosocial support ranged from £0.00 to £317.37 per child per year, with an average cost of £76.42, at 2017 prices. In the willingness-to-pay study the median rank of enhanced support, involving the opportunity to see a psychologist and parental peers, was significantly higher than that of usual care (n = 96 respondents, both carers and professionals, who completed rating of the service; p < 0.001). Limitations It proved difficult to disseminate a national survey, which resulted in a small number of returns, and to cost the provision of psychosocial support, which we designated as ‘hidden work’, owing to the lack of recording in clinical systems. Moreover, estimates were based on small numbers. Conclusions Parent interviews and the willingness-to-pay study demonstrated a preference for enhanced psychosocial support. The study suggests that there is a need for services to formally assess families’ needs for psychosocial support to ensure that provision is planned, costed and made explicit in care pathways. Personalised interventions may assist with the targeting of resources and ensuring that there is an appropriate balance in focus on both clinical care and psychosocial support needs in relation to and following treatment. Future work More work is needed to develop tools to assess families’ needs for psychosocial support and the effectiveness of training packages to strengthen team competency in providing support. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 38. See the NIHR Journals Library website for further project information

Analysis of the question–answer service of the Emma Children’s Hospital information centre

The information centre of the Emma Children’s Hospital AMC (EKZ AMC) is a specialised information centre where paediatric patients and persons involved with the patient can ask questions about all aspects of disease and its social implications. The aim of the study was to evaluate the question–answer service of this information centre in order to determine the role of a specialised information centre in an academic children’s hospital, identify the appropriate resources for the service and potential positive effects. For this purpose, a case management system was developed in MS ACCESS. The characteristics of the requester and the question, the time it took to answer questions, the information sources used and the extent to which we were able to answer the questions were registered. The costs of the service were determined. We analysed all questions that were asked in the year 2007. Fourteen hundred thirty-four questions were asked. Most questions were asked by parents (23.3%), healthcare workers (other than nurses; 16.5%) and nurses (15.3%). The scope of the most frequently asked questions include disease (20.2%) and treatment (13.0%). Information on paper was the main information source used. Most questions could be solved within 15 min. Twelve percent to 28% of total working hours are used for the question–answer service. Total costs including staff salary are rather large. In conclusions, taking over the task of providing additional medical information and by providing readily available, good quality information that healthcare professionals can use to inform their patients will lead to less time investment of these more expensive staff members. A specialised information service can anticipate on the information need of parents and persons involved with the paediatric patient. It improves information by providing with relatively simple resources that has the potential to improve patient and parent satisfaction, coping and medical results. A specialised information centre is therefore a valuable and affordable asset to an academic children’s hospital

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

BACKGROUND: Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. METHODS: A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. RESULTS: A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. CONCLUSIONS: The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding

Learning disability nurse provision in children's hospitals : hospital staff perceptions of whether it makes a difference

BACKGROUND: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children's hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. METHODS: Semi-structured interviews were conducted with senior staff across 15 children's hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. RESULTS: Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. CONCLUSION: Further consideration must be given to how learning disability nurse roles within children's hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently

Individualised and complex experiences of integrative cancer support care: combining qualitative and quantitative data

Objectives: The widespread use of complementary therapies alongside biomedical treatment by people with cancer is not supported by evidence from clinical trials. We aimed to use combined qualitative and quantitative data to describe and measure individualised experiences and outcomes. Materials and methods In three integrative cancer support centres (two breast cancer only) in the UK, consecutive patients completed the individualised outcome questionnaire Measure Yourself Concerns and Wellbeing (MYCaW) before and after treatment. MYCaW collects quantitative data (seven-point scales) and written qualitative data and the qualitative data were analysed using published categories. Results: Seven hundred eighty-two participants, 92% female, mean age 51 years, nominated a wide range of concerns. Psychological and emotional concerns predominated. At follow-up, the mean change (improvement) in scores (n = 588) were: concern 1, 2.06 (95% CI 1.92–2.20); concern 2, 1.74 (95% CI 1.60–1.90); and well-being, 0.64 (95% CI 0.52–0.75). The most common responses to ‘what has been the most important aspect for you?’ were ‘receiving complementary therapies on an individual or group basis’ (26.2%); ‘support and understanding received from therapists’ (17.1%) and ‘time spent with other patients at the centres’ (16.1%). Positive (61.5%) and negative (38.5%) descriptions of ‘other things affecting your health’ correlated with larger and smaller improvement in concerns and well-being, respectively. Conclusions: In a multicentre evaluation, the MYCaW questionnaire provides rich data about patient experience, changes over time and perceptions of what was important to each individual with cancer within that experience. It is unlikely that meaningful evaluations of this complex intervention could be carried out by quantitative methods alone

Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: Qualitative study of parents' accounts

Background: Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results: Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions: Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions. © 2014 Carolan et al.; licensee BioMed Central Ltd