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Objective: The Assisted Decision-Making (ADM) (Capacity) Act was enacted in 2015 in Ireland and will be commenced in 2021. This paper is focused on this pre-implementation stage within the acute setting and uses a health systems responsiveness framework., Methods: We conducted face-to-face interviews using a critical incident technique. We interviewed older people including those with a diagnosis of dementia ( n = 8), family carers ( n = 5) and health and social care professionals (HSCPs) working in the acute setting ( n = 26)., Results: The interviewees reflected upon a healthcare system that is currently under significant pressures. HSCPs are doing their best, but they are often halted from delivering on the will and preference of their patients. Many older people and family carers feel that they must be very assertive to have their preferences considered. All expressed concern about the strain on the healthcare system. There are significant environmental barriers that are hindering ADM practice., Conclusions: The commencement of ADM provides an opportunity to redefine the provision, practices, and priorities of healthcare in Ireland to enable improved patient-centred care. To facilitate implementation of ADM, it is therefore critical to identify and provide adequate resources and work towards solutions to ensure a seamless commencement of the legislation.

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services. An explorative, cross-sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information-sharing with respite services changed over time across three temporal phases: 'Reaching a point', 'Trying it out' and 'Settled in'. Proactive information-sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information-sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information-sharing but traditional approaches will remain important., (© 2017 John Wiley & Sons Ltd.)

Purpose: Physical activity (PA) improves fitness, functioning, health and wellbeing after stroke. However, many survivors are inactive. This study explored survivors', carers' and physiotherapists' beliefs about PA to identify how these support or hinder PA participation., Methods: Semi-structured in-depth interviews with community dwelling stroke survivors (n = 38); two focus groups involving six carers each; two focus groups, respectively, involving seven and eight stroke rehabilitation physiotherapists from clinical and community settings. Data were audio-recorded and transcribed. Analysis was structured using the Framework Approach to identify themes and a dynamic, conceptual model., Findings: Desired outcomes and control over outcome achievement were key concepts. For survivors and carers, PA supported participation in valued activities, providing continuity with pre-stroke sense of self. Carers adopted motivating strategies for PA to support recovery and participation in shared activities. In contrast, physiotherapists prioritised physical and functional outcomes and viewed survivors' control of outcomes as limited which was reflected by the support they provided., Conclusions: Individualised interventions that account for social and environmental influences on behaviour appear vital to enabling survivors to participate in meaningful physical activities. Such interventions should facilitate development of shared perspectives among physiotherapists, carers and survivors of PA and related outcomes and provide tailored strategies to facilitate PA participation. Implications for Rehabilitation Physical activity after stroke rehabilitation is important for fitness, health, functioning and well-being. Reasons for survivors participating or not in physical activity after stroke are complex and varied. Physiotherapists and carers influence survivors' participation in physical activity but their views about how to do this do not always match, or do they always complement the views of survivors. Integrated approaches to supporting physical activity that account for survivors' preferences and recognise the carers' role should be developed and applied by physiotherapists and other health professionals.

Introduction: Supported (assisted) healthcare decision‐making (ADM) focuses attention on how people with disabilities, including cognitive impairments, can be best supported to make decisions about their health and social care on an equitable basis with others. Meaningful implementation of legal frameworks for ADM challenges long‐held presumptions about who has access to valued decision‐making resources, influence and power within a particular socio‐cultural setting. This study aims to explore the relational power dynamics around ADM with older people in acute care settings. Methods: This study adopts a critical hermeneutic approach to qualitatively explore the lived experience of ADM from the perspectives of Health and Social Care Professionals (N = 26). This is supported by an exploration of the experiences of older people (N = 4), older people with a diagnosis of dementia (N = 4) and family carers (N = 5). Results: We present three themes of data analysis that represent three spaces where the relational aspects of power in ADM are manifested. The first space, centralising decision‐making power within multidisciplinary teams identified the privileging of physicians in traditional hierarchical leadership models that may lead to the implicit exclusion of family carers and some Health and Social Care Professionals in the ADM process. Privileging cognitive and communication competence identified a tendency to attribute decision‐making autonomy to those with cognitive and communication competency. The final space, balancing the duty of care and individual autonomy, recognises acute care settings as typically risk‐averse cultures that limit autonomy for decisions that carry risk, especially for those with cognitive impairment. Conclusion: Findings indicate the need to address cultural sources of power operating through social norms premised on ageist and ableist ideologies. It is necessary to challenge institutional barriers to meaningful ADM including positional power that is associated with hierarchies of influence and protectionism. Finally, meaningful ADM requires resistance to the disempowerment created by structural, economic and social circumstances which limit choices for decision‐making. Patient or Public Contribution: A public and patient involvement panel of older people were consulted in the development of the grant application (HRB: APA‐2016‐1878). Representatives from Alzheimer's Society Ireland and Family Carers Ireland were steering committee members guiding design and strategy. [ABSTRACT FROM AUTHOR]

Background: In low- and middle-income countries, including sub-Saharan Africa little is known about the experiences with caring for people living with dementia. The purpose of this systematic review and narrative synthesis was to examine the experiences with caring for older people living with dementia at home. Results: In total, 366 abstracts were identified and following screening, 19 studies were included in the synthesis. Six themes were identified: conceptualising dementia, caregiving arrangements, the impact of caregiving, caregiver identity and role, managing caregiving, unmet caregiver needs. Conclusion: There is a dearth of research in relation to caregiving for older people living with dementia in sub-Saharan Africa. There is need for better information campaigns and support programs directed at family and professional caregivers in this context. [ABSTRACT FROM AUTHOR]

Introduction: As chronic conditions such as dementia become increasingly prevalent, the role of caregivers will become ever more critical. In the East African region, little is known about the experiences of caring for people living with dementia. This study aims to describe the views of being a caregiver, including day-to-day responsibilities and duties, determine the impact of caregiving and understand participants' experiences of supports available or required to facilitate caring for a person living with dementia in Kenya. Methods: This was a qualitative study that employed an interpretative phenomenological analysis (IPA) approach. We used convenience sampling to identify study participants in three counties in Kenya. Participants were main caregivers for the family and hence included both families and paid caregivers. We recruited 10 caregivers to participate in the study (9 females and 1 male). Data were analysed manually following the IPA approach. Results: Three main themes emerged from the analysis: the personal experience of caregiving, supports to assist with caregiving and the perceived unmet care needs. The challenges experienced varied based on the support available to the caregiver, the number of years in the caregiving role and knowledge and skills related to providing care. Conclusion: Our study shows that caring for a person living with dementia is an arduous experience, requiring significant mental and physical effort. The study highlights a general lack of knowledge and awareness of dementia among families, healthcare professionals and the general public. Training programmes for caregivers, including dementia care skills, educating healthcare practitioners and organising public awareness programmes to understand and accept dementia are urgently needed. [ABSTRACT FROM AUTHOR]

Objective: Transgender and non-binary individuals frequently engage with healthcare services to obtain gender-affirming care. Little data exist on the experiences of young people accessing gender care. This systematic review and meta-ethnography aimed to identify and synthesise data on youths' experiences accessing gender-affirming healthcare. Method: A systematic review and meta-ethnography focusing on qualitative research on the experiences of transgender and non-binary youth accessing gender care was completed between April-December 2020. The following databases were used: PsychINFO, MEDLINE, EMBASE, and CINAHL. The protocol was registered on PROSPERO, international prospective register of Systematic Reviews (CRD42020139908). Results: Ten studies were included in the final review. The sample included participants with diverse gender identities and included the perspective of parents/caregivers. Five dimensions (third-order constructs) were identified and contextualized into the following themes: 1.) Disclosure of gender identity. 2.) The pursuit of care. 3.) The cost of care. 4.) Complex family/caregiver dynamics. 5.) Patient-provider relationships. Each dimension details a complicated set of factors that can impact healthcare navigation and are explained through a new conceptual model titled "The Rainbow Brick Road". Conclusion: This synthesis expands understanding into the experience of transgender and non-binary youth accessing gender-affirming healthcare. Ryvicker's behavioural-ecological model of healthcare navigation is discussed in relation to the findings and compared to the authors' conceptual model. This detailed analysis reveals unique insights on healthcare navigation challenges and the traits, resources, and infrastructure needed to overcome these. Importantly, this paper reveals the critical need for more research with non-binary youth and research which includes the population in the design. [ABSTRACT FROM AUTHOR]

Introduction: Family carers provide a wide range and significant amount of assistance to relatives, friends and neighbours who are ill or disabled. Statistical data from the Organisation for Economic Co-operation and Development (OECD) indicates that at least 1 in 10 adults is involved in informal, and most often unpaid care. About half of the proportion of those who participate in a caring role combine this with paid employment and balancing both roles can be a challenge. Consequently, there is increased demand for the introduction of measures to reconcile paid work and careprovision. Unfortunately, much remains unknown about the lives of family carers who balance work with care. Aim: The present work endeavours to illuminate this topic by scoping the extent, range and nature of available evidence on 'family carers who are in paid employment'. Methods: Steps followed when carrying out the scoping review included: i) Clarifying the research purpose and question; ii) Identifying relevant research studies from various electronic databases, reference lists of identified studies, and grey or unpublished literature; iii) Selection of studies by two independent reviewers; iv) Collating data using an excel data sheet; and v) Analysing and summarising data using qualitative thematic analysis. Results: Two-hundred-and-sixty-three publications were incorporated, and these comprised a variety of research study designs, which were based in different countries. Six themes were emergent from the scoping review findings. The first was the compound carer's experience who is a working family carer; subthemes relevant to this group were coping, health outcomes and employment outcomes. A subsequent theme was health outcomes for working family carers; health outcomes were subdivided into mental health, physical health, and health behaviour outcomes. The theme on the profile of characteristics for working family carers comprised of subthemes indicative that caring was largely a gendered activity, with age as another important variant -- caring increasing at older ages. The economic impact of caring on working family carers was an eminent theme with a clear personal economic impact and national economic impact. A significant finding was the theme on conflicting priorities among working family carers; subthemes related to this were either work-to-family conflict or family-to-work conflict. The most important theme in the present work was that on employment outcomes among working family carers with subthemes characterised by employment participation, employment-related disadvantages, work-place provisions in place for this group and positive employment impacts. Finally, it was clear that there were support services for working family carers and thus this was an apparent theme; subthemes related to this were the formal services and social support services. Conclusions: Evidence on working family cares is vast and covers a wide range of topics such as compound caring, health, demographic profile, conflicting priorities, finances, employment, and support services. Working family carers face the difficult task of balancing work with care which could lead to negative outcomes related to employment, finances, and health. Implications for applicability: The pressures associated with the dual responsibility can be alleviated via the introduction of support services and policies to support working carers. [ABSTRACT FROM AUTHOR]

Health promotion and preventive action in the context of public health interventions for highly prevalent, long-term conditions such as cancer are rarely geared toward the family as a whole. Yet familymembers, as cancer cosurvivors, must manage their own substantial stress and multiple caregiving responsibilities and often constitute a critical nexus between individual patients and clinicians. We drew on 2 examples of cancer cosurvivorship from 2 different health service contexts, the United States and Finland. A systemic approach in public health is needed to support family members who not only have to confront the meaning of long-term conditions such as cancer but also may have to manage concurrent social life challenges and stressors such as economic hardship. [ABSTRACT FROM AUTHOR]

Introduction: Supporting the decision-making of those with capacity challenges is a relatively new area of health and social care policy and research. The Assisted Decision-Making (Capacity) Act 2015 has yet to be commenced in Ireland, however codes of practice and educational strategies are in development to support healthcare professionals to practice in accordance with the Act. The overall aim of this research is to develop an educational discussion game (PlayDecide TM) which will encourage healthcare professionals, older people (with and without a diagnosis of dementia) and family caregivers to discuss assisted decision-making (ADM). It is envisaged that this discussion game will support the implementation of the emergent codes of practice. This paper describes a pre-implementation formative evaluation informed by the perspectives of relevant stakeholders in ADM practice. This provides a diagnostic analysis of contextual issues, barriers and enablers influencing the adoption of ADM practice in acute care settings. Methods: The pre-intervention diagnostic activity involved site visits and key informant interviews from within two acute care settings and two day-hospital settings. Data were collected using qualitative interviews and follow-up validation discussion groups. In total, 18 interviews and three validation groups were conducted with family carers and older people with and without a diagnosis of dementia. A further 32 interviews and four validation groups were conducted with healthcare professionals located across the four sites (social workers n=8, SLT/PT/OTs n=8, nurses n=8 and physicians n=8). Reflections were elicited on the following: current practice in relation to decisionmaking; contextual determinants of current practice; and potential barriers/facilitators to enable behavioural change. Results: The qualitative data yielded nuanced descriptions of the following themes: common and accepted ways of engaging in decision-making; favoured modes of communication; areas of tension and cohesion within teams; ideas of how ADM might work; desired behaviour change; ideas on how to implement behaviour change among staff and patients and potential areas of resistance. Discussions: Identification of implementation factors related to organisational culture, interpersonal relationships and governing norms will lead to more targeted and site-specific implementation strategies. This will enhance the likelihood of successful implementation of behaviour change. Conclusions: The findings from the diagnostic analysis will provide real world context-driven narratives and participant issues that will be incorporated into the serious discussion game through a co-design process with key stakeholders, including patients and healthcare professionals. The discussions prompted by the serious game will allow the players to generate ideas about the contextual and cultural adaptations required for successful implementation of ADM policy. Lessons learned: It is essential to identify barriers as well as facilitators prior to implementing any behaviour change interventions. The developmental stage of formative evaluation is the bedrock of successful implementation of change into practice. Limitations: Ethnographic observations of staff/patient interactions were inhibited by local access barriers. Diagnostic activity relied therefore, on first person narrative accounts of decision-making processes rather than direct observations. Suggestions for future research: The findings from the formative evaluation will prompt the development and evaluation of targeted, site- specific behaviour change interventions supporting the adoption of ADM. [ABSTRACT FROM AUTHOR]