Experiences and meaning of loneliness beyond age and group identity.

Research into loneliness has focussed on subpopulations, and in particular those defined by age, identifying specific contextual factors contributing to their experiences. We suggest that the 'essence' of loneliness cannot be fully captured by examining a unitary group and argue for broader and diverse sampling to better understand how loneliness is experienced. Informed by a symbolic interactionist approach, this study aims to elucidate experiences and meaning of loneliness among a heterogeneous group of adults. In depth interviews were conducted with a diverse sample of 37 individuals, aged 18-71 years who had experienced loneliness in the UK. Using thematic analysis, four themes were identified: Loneliness as lacking, loneliness as abandonment, lingering loneliness and the unspoken and trivialised experience of loneliness. Our analysis signals the complexity of loneliness  did not necessarily conform to one-dimensional conceptualisations of the phenomenon. Loneliness is linked to interpersonal relationships, but also associated with participants' roles and identity within society. Thus, society exacerbates and creates loneliness. Implications for the support and provision of loneliness are also discussed.

Outcomes for gastrostomy-fed children and their parents: qualitative findings from the 'Your Tube' study.

AIM: To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). METHOD: Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2-18y) represented included those on formula (n=11), blended-food (n=7), and mixed (n=2) diets. All had been tube-fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. RESULTS: Participants identified a range of children's outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube-fed. Time, sleep, and emotional health were regarded as most salient to understanding parents' gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. INTERPRETATION: Findings indicate a number of refinements to, and allow further specification of, the current 'initial' core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. What this paper adds Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well-being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.

Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review.

BACKGROUND: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM: To map research priorities identified from existing research prioritisation exercises relevant to infants, children and young people with life-limiting conditions, in order to inform future research. DESIGN: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website. DATA SOURCES: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, life-threatening or life-shortening conditions; their family, parents, carers; and/or the professional staff caring for them. RESULTS: A total of 24 research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by World Health Organization classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics. CONCLUSION: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families' perspectives.

Effectiveness and Cost-Effectiveness of Receiving a Hearing Dog on Mental Well-Being and Health in People With Hearing Loss: Protocol for a Randomized Controlled Trial.

BACKGROUND: People with hearing loss, particularly those who lose their hearing in adulthood, are at an increased risk of social isolation, mental health difficulties, unemployment, loss of independence, risk of accidents, and impaired quality of life. In the United Kingdom, a single third-sector organization provides hearing dogs, a specific type of assistance dog trained to provide sound support to people with hearing loss. These dogs may also deliver numerous psychosocial benefits to recipients. This has not previously been fully investigated. OBJECTIVE: The study aims to evaluate the impact of a hearing dog partnership on the lives of individuals with severe or profound hearing loss. METHODS: A 2-arm, randomized controlled trial will be conducted within the United Kingdom with 162 hearing dog applicants, aged 18 years and older. Participants will be randomized 1:1 using a matched-pairs design to receive a hearing dog sooner than usual (intervention arm: arm B) or to receive a hearing dog within the usual timeframe (comparator arm: arm A). In the effectiveness analysis, the primary outcome is a comparison of mental well-being 6 months after participants in arm B have received a hearing dog (arm A have not yet received a hearing dog), measured using the Short Warwick Edinburgh Mental Well-Being Scale. Secondary outcome measures include the Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, and Work and Social Adjustments Scale. An economic evaluation will assess the cost-effectiveness, including health-related quality-adjusted life years using the EuroQol 5 Dimensions and social care-related quality-adjusted life years. Participants will be followed up for up to 2 years. A nested qualitative study will investigate the impacts of having a hearing dog and how these impacts occur. RESULTS: The study is funded by the National Institute for Health Research's School for Social Care Research. Recruitment commenced in March 2017 and is now complete. A total of 165 participants were randomized. Data collection will continue until January 2020. Results will be published in peer-reviewed journals and at conferences. A summary of the findings will be made available to participants. Ethical approval was received from the University of York's Department of Social Policy and Social Work Research Ethics Committee (reference SPSW/S/17/1). CONCLUSIONS: The findings from this study will provide, for the first time, strong and reliable evidence on the impact of having a hearing dog on people's lives in terms of their quality of life, well-being, and mental health. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number Registry ISRCTN36452009; http://www.isrctn.com/ISRCTN36452009. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/15452.

'Your Tube': the role of different diets in children who are gastrostomy fed: protocol for a mixed methods exploratory sequential study.

INTRODUCTION: Increasing numbers of children require having all, or part, of their nutritional intake via gastrostomy. More parents are using home-blended meals to feed their children, with many reporting beneficial effects such as improved gastro-oesophageal reflux, less constipation and less distress in their child.This study aims to identify the important outcomes of tube feeding in this population, compare the safety, outcomes and resource use of those on a home-blended diet compared with a formula diet and assess feasibility of long-term follow-up of children recruited to this study. METHODS AND ANALYSES: This is a mixed methods study of children (aged 6 months to 18 years) who are gastrostomy feed dependent recruited via general, community and specialist paediatric and dietetic services. Workstream1 (WS1): a qualitative study involving semistructured interviews with parents (n~20) and young people (n~5-10), and focus groups with health professionals (n~25), will provide evidence of appropriate outcome measures and the feasibility/acceptability of proposed data collection methods for WS2. It will gather data on: desired outcomes of gastrostomy feeding, variability in diets and reasons; use of oral feeding; perceived benefits of the alternative diets, resources associated with gastrostomy feeding and safety issues. Data will be analysed using thematic analysis. WS2: a cohort study of 300 children who are gastrostomy fed. Data will be collected at months 0, 9 and 18 from parents, children (if appropriate) and clinicians using standardised measures and questionnaires developed specifically for the study. Data collected will include gastrointestinal symptoms, health and other outcomes (child, parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. Outcomes in the home-blended and formula groups will be compared using appropriate multiple regression analyses. ETHICS AND DISSEMINATION: The study has been approved by a research ethics committee (REC reference: 19/YH/0028). Results will be disseminated through publications and presentations for professionals and families. STUDY REGISTRATION NUMBER: ISRCTN13977361.

Progress and problems in developing outcomes-focused social care services for older people in England.

Social care services for adults are increasingly required to focus on achieving the outcomes that users aspire to, rather than on service inputs or provider concerns. This paper reports a study aimed at assessing progress in developing outcomes-focused services for older people and the factors that help and hinder this. It describes the current policy context and discusses the social care service outcomes desired by older people. It then reports on a postal survey that identified over 70 outcomes-focused social care initiatives across England and Wales, and case studies of progress in developing outcomes-focused social care services in six localities. The study found progress in developing outcomes-focused services was relatively recent and somewhat fragmented. Developments in intermediate care and re-ablement services, focusing on change outcomes, were marked; however, there appeared to be a disjunction between these and the capacity of home care services to address desired maintenance outcomes. Process outcomes were addressed across a range of re-ablement, day care and residential services. The paper concludes by discussing some of the challenges in developing outcomes-focused social care services.

Therapy interventions for children with neurodisabilities: a qualitative scoping study.

BACKGROUND: Therapy interventions emerged four times in the top 10 research priorities in a James Lind Alliance research prioritisation exercise for children with neurodisabilities (Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, et al. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open 2015;5:e006233). The National Institute for Health Research (NIHR) commissioned this study as part of an information-gathering exercise in response to this. OBJECTIVES: The objectives were to (1) describe the current practice, approaches and schools of thought in relation to physiotherapy, occupational therapy and speech and language therapy for children with neurodisability; (2) explore clinical decision-making; (3) investigate views on outcomes and their measurement, particularly participation as an outcome, that is, the child's ability to have the opportunity to be involved in life situations and activities (e.g. communication, mobility, interpersonal interactions, self-care, learning and applying knowledge); (4) seek views on the aspects of therapy interventions that have an impact on outcomes; and (5) elicit stakeholder views on research needs and priorities. DESIGN, SETTING AND PARTICIPANTS: More than 70 professionals (therapists, service leads, paediatricians and education staff) and 25 parents participated in a qualitative interview (either individually or as part of a focus group). RESULTS: Professional thinking and models of service delivery are in a state of flux and development. There is a move towards goals-focused, family-centred approaches. Work tends to be highly individualised, with few protocols. Parents are certain of the value of therapies, although they may experience difficulties with provision and may seek (additional) private provision. Therapy interventions are conceived as three components: the therapist, the procedures/equipment, etc., and the wider therapeutic environment. They are believed to be highly complex and poorly understood. Although participation is widely endorsed as a core intervention objective of therapy interventions, its suitability, or appropriateness, as an outcome measure was questioned. Other child and/or parent outcomes were identified as more or equally important. Notions of intermediate outcomes - in terms of body structure/function, and the achievement of activities - were regarded as important and not counter to participation-focused approaches. Among therapists, research on intervention effectiveness was (cautiously) welcomed. A number of methodological challenges were identified. A portfolio of study designs - quantitative and qualitative, experimental and observational - was called for, and which included economic evaluation and clear pathways to impact. LIMITATIONS: The study was not successful in recruiting children and young people. Further work is required to elucidate the views of this key stakeholder group. CONCLUSIONS: Therapy interventions are poorly understood. There was strong support, tempered a little by concerns among some about the feasibility of demonstrating impact, for investment in research. FUTURE WORK: The identification of research priorities was a core study objective, and a wide-ranging research agenda was identified. It included 'foundational' research into neurodisability, the active components of therapy interventions and the concept of participation. Three areas of evaluation were identified: overall approaches to therapy, service organisation and delivery issues, and the evaluation of specific techniques. Parents regarded evaluations of approaches to therapy (e.g. goals-focused; supporting family-self management) as priorities, along with evaluations of models of service provision. Professionals' views were broadly similar, with an additional emphasis on methodological research. In terms of specific techniques, there was no shared agreement regarding priorities, with views informed by personal interests and experiences. FUNDING: The NIHR Health Technology Assessment programme.

The development of satisfaction with service-related choices for disabled young people with degenerative conditions: evidence from parents' accounts.

Satisfaction with service-related choices has not received much research attention, especially beyond medical/health-related decisions. This paper reports findings from an analysis of parents' accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition. It focuses particularly on factors and processes, which contribute to parents' satisfaction. This is particularly interesting given that sub-optimal outcomes or negative consequences are often experienced following a service-related choice being implemented. The data reported here were collected as part of a larger, longitudinal study (the Choice and Change project) of service users' experiences of choice-making, including the outcomes and consequences of those choices. Parents of disabled young people with degenerative conditions formed part of this sample. The accounts of 14 of these parents, collected over three interviews during a two and a half-year period, all of whom expressed satisfaction with the medium- to long-term outcomes of a service-related choice, were selected for specific analyses to understand what underlies satisfaction with service-related choices. Clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to 'trade off' the negative consequences of a choice. These included the considerable demands placed on parents' personal, financial and practical resources to operationalise a choice, and the emotional impact incurred by significant changes such as the loss of the carer role. The passage of time was important in allowing evidence of positive outcomes to emerge, psychological or emotional adjustments to be made, and for parents to develop trust in new service providers. The findings suggest that practitioners can have an important role in both practical and emotional support for parents' choice-making for, or with, their disabled son/daughter.

Decision-making around moving on from full-time education: the roles and experiences of parents of disabled young people with degenerative conditions.

Little is known about the decision-making processes that take place within families when a disabled young person is moving on from full-time education and, particularly, parents' roles and experiences. This paper reports the analysis of data collected from a subsample of parents (representing seventeen families) participating in the Choice and Change Project who had discussed choices associated with their child leaving full-time education. (The Choice and Change Project is a longitudinal, qualitative study of choice-making by four different groups of service users including disabled young people with degenerative conditions and their parents.) The data were collected from parents during up to three semi-structured interviews conducted over a thirty-month period. Descriptive theories of decision-making informed the analysis. Parents differed in the extent to which they were actively involved in making choices about the 'destination' of their child after leaving full-time education. To some extent, the ability of the young person to make choices themselves influenced this. Parents who were assuming responsibility for making choices stressed the importance of having relevant information and felt professionals had a key role to play in supporting access to information. Parents used a number of criteria to guide their choice-making, including distance from home, perceived quality of the environment and staff and the young person's responses to the setting. Much of the information needed to make a choice required a visit to all the possible options. Ensuring such visits were positive and useful experiences for themselves and their child could be very difficult; support to achieve these visits was highly valued but not routinely provided. The study also highlights the lack of recognition given to the significant amount of work that many parents undertake to ensure that a choice is realised, and also to the emotional journey parents take when making or assisting in such decisions.