Can the impact of public involvement on research be evaluated? A mixed methods study

Background Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. Objective To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Methods Mixed methods including a two‐round Delphi study with pre‐specified 80% consensus criterion, with follow‐up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self‐selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Results Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. Conclusions This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed.     

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

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

Loss,uncertainty, or acceptance: subjective experience of changes to fertility after breast cancer

This qualitative study examines the subjective experience of infertility in a large sample of Australian women with breast cancer. Participants were 1830 women, average age 54, who responded to an email invitation to complete an online survey on sexual well‐being and fertility concerns after breast cancer. 24.6% (n = 452) reported that cancer had affected their fertility; 21.3% (n = 391) did not know their fertility status. In thematic analysis of open‐ended responses provided by 381 women about changes to fertility status, reactions to infertility, and experiences of information and interventions to assist fertility, five themes were identified: ‘Negative responses to infertility and early menopause’; ‘Sexual changes associated with menopause and infertility’; ‘Uncertainty and anxiety about fertility status’; ‘Information and fertility preservation’; ‘Acceptance of the end of fertility’. These findings confirm previous reports that infertility and premature menopause are a significant cause of anxiety for many women with breast cancer. However, some women closer to natural menopause, or who had completed their families, reported acceptance of changed fertility status. Accounts of deficits in information provision and fertility counselling suggest an urgent need for accessible and comprehensive information about fertility and cancer to be developed and evaluated, as well as education and training of health professionals in addressing fertility concerns following cancer.     

Self-Forgiveness,Shame, and Guilt in Recovery from Drug and Alcohol Problems

ABSTRACT

Background: People with drug and/or alcohol problems often experience feelings of shame and guilt, which have been associated with poorer recovery. Self-forgiveness has the potential to reduce these negative experiences. Methods: The current study tested theorized mediators (acceptance, conciliatory behavior, empathy) of the relationships between shame and guilt with self-forgiveness. A cross-sectional sample of 133 individuals (74.4% male) receiving residential treatment for substance abuse completed self-report measures of shame, guilt, self-forgiveness, and the mediators. Results: Consistent with previous research, guilt had a positive association with self-forgiveness, whereas shame was negatively associated with self-forgiveness. Acceptance mediated the guilt and self-forgiveness relationship and had an indirect effect on the shame and self-forgiveness relationship. Conclusions: These findings emphasize the importance of targeting acceptance when trying to reduce the effects of shame and guilt on self-forgiveness.     

The role of advocacy and interpretation services in the delivery of quality healthcare to diverse minority communities in London, United Kingdom

Inequalities in access to appropriate and acceptable healthcare contributes to a pattern of poorer health status, reduced life expectancy and greater dissatisfaction with healthcare amongst people from Black and minority ethnic communities (BME). Language acts as a further barrier to access. The development of bilingual advocacy fuses two key functions – interpretation and advocacy – to ensure that people from BME communities are able to have their healthcare needs met appropriately. This paper explores the development of bilingual advocacy in East London, which has a highly diverse population speaking over 100 different languages. It considers the development of the bilingual advocacy services by an NHS University Hospital Trust, the local experience of these services and the factors that have influenced their development. We employed the Delphi method amongst the four authors to examine the advocate-, service- or client-related challenges that face advocacy services; and the threats of these challenges to Trust-based advocacy and their implications to the service, client and advocate. Advocate -related challenges included status, esteem and remuneration of bilingual advocates in relation to other health professionals, as well as skills development, career progression, gender, capacity building and potential research contributions. Service -related challenges included work load, case mix, administration, commissioning processes/arrangements; entrepreneurial aspects of advocacy services; and mechanisms/potentials for cost recovery. Client -related challenges included continuity of advocacy; language requirements and advocacy needs of clients; and ways in which mobile populations influence planning and delivery of advocacy services for inner city hospitals. The paper concludes with identifying the implications for future development of bilingual advocacy services and the implications for their workforce.