scholarly journals Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: Qualitative insights from triangulated interviews and focus groups

Author(s):  
Susan Swan ◽  
Richard Meade ◽  
Debbie Cavers ◽  
Barbara Kimbell ◽  
Anna Lloyd ◽  
...  
2018 ◽  
Vol 8 (3) ◽  
pp. 363.2-363
Author(s):  
Susan Swan ◽  
Richard Meade ◽  
Emma Carduff

IntroductionThe Carers (Scotland) Act (2016) places a duty on local authorities to prepare an Adult Carer Support Plan (ACSP) and Young Carer Statement for any carer who requests one or is identified as such. From 2019 this will be assisted by a fast track process for carers of people in their last six months of life. Timely identification of unpaid carers assessment and support can; reduce the overwhelming pressure of caregiving increase competence confidence satisfaction and the quality of the care given.AimTo provide evidence on the supportive needs of carers to inform recommendations regarding the timescale for the creation of fast tracked ACSPs under the Carers (Scotland) Act (2016).MethodsThe study triangulated data from a literature review qualitative secondary analysis (n=19 interviews; 3 focus groups) and two primary focus groups with bereaved carers (n=11).ResultsThemes included; barriers to and triggers for identification and needs including physical support psychological support respite information communication co-ordination and competing demands. Additional themes were speed of decline and end of life care.ConclusionHealth and social care professionals need to take a radical reactive move to presume that every patient has a carer and ensure they understand their entitlements. Carer identification is everyone’s responsibility and it should be the ambition of the Carer (Scotland) Act (2016) that this happens early in the illness trajectory. In so doing rapid assessment and support can be initiated to help carers navigate and cope with an uncertain often rapidly deteriorating illness trajectory.Reference. Scottish Government. (2016). 1 Carers (Scotland) Act. Scottish Government. Available at http://www.legislation.gov.uk/asp/2016/9/pdfs/asp_20160009_en.pdf (Accessed: 10 February 2018)


2017 ◽  
Vol 9 (1) ◽  
pp. e4-e4 ◽  
Author(s):  
Glenys Caswell ◽  
Beth Hardy ◽  
Gail Ewing ◽  
Sheila Kennedy ◽  
Jane Seymour

BackgroundFamily carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.ObjectivesTo produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.Process of developmentParticipatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.Final training programmeThe outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator’s notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.ConclusionThe programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.


2013 ◽  
Vol 10 (1) ◽  
pp. 29-34 ◽  
Author(s):  
Stasi Lubansky ◽  
Corrine Y. Jurgens ◽  
Carla Boutin-Foster

Introduction: Physicians in training must be able to counsel their patients on smoking cessation, however, little is known about the barriers that they face to counselling their patients.Aims: The study sought to identify barriers to smoking cessation counselling specific to physicians in training.Methods: Qualitative interviews in the form of focus groups were conducted with 30 medical residents. Focus groups were audio taped, transcribed verbatim and coded by two independent reviewers. Similar codes were grouped to form categories and then aggregated to form themes.Results: Seven themes emerged describing resident barriers to provision of smoking cessation counselling : (1) Lack of self-efficacy for providing counselling; (2) their perception that patients are not willing to change; (3) a lack of available resources/information for providers and patients; (4) differences in supervising physician's recommendations; (5) perceived lack of time; (6) a perception of lack of continuous care; and (7) a lack of practical skills in counselling.Conclusions: This study highlighted residents’ perceived barriers to providing smoking cessation counselling. These barriers are similar to those encountered by other providers. Additional barriers specific to residency exist and more training is necessary.Practice Implications: The barriers that physicians encounter to smoking cessation counselling must be addressed early on in residency training.


2021 ◽  
Vol 37 (S1) ◽  
pp. 17-17
Author(s):  
Amanda Lovato ◽  
Nisha Almeida

IntroductionAn important reason for receiving non-beneficial treatment at end-of life is the lack of timely discussions on goals of care and end-of-life preferences. A recent randomized clinical trial demonstrated that patients primed with a questionnaire on their end-of-life preferences were more likely to initiate such conversations with their doctors. Our objective is to integrate the questionnaire into a smartphone application to facilitate early goals of care discussions. To achieve this goal, we first plan to undertake a feasibility study to understand stakeholder preferences.MethodsAs part of a quality improvement initiative at our Canadian quaternary-care hospital, we conducted focus groups with oncology and palliative care physicians and patients to understand barriers to early conversations on end-of-life preferences, and to assess feasibility of using smartphone technology in facilitating these conversations. The app would integrate a questionnaire to patients and send prompts to physicians on patient readiness and timing of conversations.ResultsWe conducted separate focus groups with lung cancer patients (n = 6) and clinicians in oncology (n = 6) and palliative care (n = 6). Clinical teams expressed enthusiasm about early conversations but raised several barriers including system (lack of electronic documentation and access to data; multiple physicians), clinician (lack of time) and patient (stigma associated with end-of-life) barriers. Clinicians agreed that an app could overcome some of these barriers such as access to patient and electronic data by making patients the repository of all their data and empowering them to initiate discussions. However, they raised concerns about universal accessibility of such technology, especially among the elderly. Patient focus groups will take place in March 2021 and inform us on feasibility in this population.ConclusionsThere is a consensus among physicians at our hospital that early end-of-life conversations have the potential to mitigate adverse events and that use of a smart phone app could facilitate such conversations.


2021 ◽  
pp. 1-19
Author(s):  
Rita Mascio ◽  
Megan Best ◽  
Sandra Lynch ◽  
Jane Phillips ◽  
Kate Jones

Abstract Objectives The aim was to identify determinants of nurse spiritual/existential care practices toward end-of-life patients. Nurses can play a significant role in providing spiritual/existential care, but they actually provide this care less frequently than desired by patients. Methods A systematic search was performed for peer-reviewed articles that reported factors that influenced nurses’ spiritual/existential care practices toward adult end-of-life patients. Results The review identified 42 studies and included the views of 4,712 nurses across a range of hospital and community settings. The most frequently reported factors/domains that influenced nurse practice were patient-related social influence, skills, social/professional role and identity, intentions and goals, and environmental context and resources. Significance of results A range of personal, organizational, and patient-related factors influence nurse provision of spiritual/existential care to end-of-life patients. This complete list of factors can be used to gauge a unit's conduciveness to nurse provision of spiritual/existential care and can be used as inputs to nurse competency frameworks.


Animals ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. 134 ◽  
Author(s):  
Deborah Butler ◽  
Mathilde Valenchon ◽  
Rachel Annan ◽  
Helen Whay ◽  
Siobhan Mullan

The purpose of the study was to explore the perceptions held by British racing industry stakeholders of factors influencing racehorse welfare. Ten focus groups were held across the UK with a total of 42 stakeholders from a range of roles within racehorse care including trainers, stable staff and veterinarians. Participants took part in three exercises. Firstly, to describe the scenarios of a ‘best life’ and the minimum welfare standards a horse in training could be living under. Secondly, to identify the main challenges for racehorse welfare and thirdly, to recall any innovative or uncommon practices to improve welfare they had witnessed. Using thematic analysis, eight themes emerged from the first exercise. Two strands, factors that contribute to maintaining health and the horse-human relationship ran through all eight themes. Across all themes horses living the ‘best life’ were perceived as being treated as individuals rather than being part of a ‘one size fits all’ life when kept under minimum welfare standards. Health was both perceived as the main challenge to welfare as well as one open to innovative practices such as improved veterinary treatments. Data obtained, informed by the knowledge and expertise of experienced stakeholders, combined with practical animal welfare science will be used to develop the first British racehorse welfare assessment protocol.


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