Psychosocial care in diverse communities and encouraging communities to support each other

2018 ◽  
Author(s):  
Linda McEnhill
Keyword(s):  
Palliative Care ◽  
Psychosocial Care ◽  
Models Of Care ◽  
Specialist Palliative Care ◽  
Policy Documents ◽  
It Impacts ◽  
Diverse Communities ◽  
The Face ◽  
Social Circumstance

This chapter reviews issues of psychosocial care in diverse communities. In the face of ongoing inequity, despite the Equality Act (2010), it analyses the concept of access as it impacts differentially on people from diverse communities. Suggesting that patient leadership, co-production, and compassionate community models of care are all vehicles by which to improve psychosocial care in the face of diminished resources and increased demand as a result of rising numbers of people dying and the need to respond to all who are dying based on need not on diagnosis or social circumstance. Despite a plethora of policy documents and legislation there are still significant numbers of people who are unable to access palliative care in general and specialist palliative care in particular.

scholarly journals Establishing key criteria to define and compare models of specialist palliative care: A mixed-methods study using qualitative interviews and Delphi survey

2019 ◽  
Vol 33 (8) ◽  
pp. 1114-1124 ◽  
Author(s):  
Alice M Firth ◽  
Suzanne M O’Brien ◽  
Ping Guo ◽  
Jane Seymour ◽  
Heather Richardson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Delphi Study ◽  
Qualitative Interviews ◽  
Models Of Care ◽  
Mixed Methods Study ◽  
Specialist Palliative Care ◽  
Structured Interviews ◽  
Care Services ◽  
Palliative Care Services

Background: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care. Aim: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom. Design: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria. Setting/participants: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings. Results: (1)  Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria. (2)  Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, ‘out-of-hours’ components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision. (3)  Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge). Conclusion: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care – a major paradigm shift to enable accurate reporting and comparison in practice and research.

scholarly journals Common care practices among effective community-based specialist palliative care teams: a qualitative study

2017 ◽  
Vol 10 (1) ◽  
pp. e3-e3 ◽  
Author(s):  
Hsien Seow ◽  
Daryl Bainbridge ◽  
Melissa Brouwers ◽  
Deanna Bryant ◽  
Sue Tan Toyofuku ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Team Building ◽  
Physical Symptom ◽  
Models Of Care ◽  
Specialist Palliative Care ◽  
Community Based ◽  
Care Community ◽  
Palliative Care Teams ◽  
Care Practices

ObjectiveEvidence has shown that, despite wide variation in models of care, community-based specialist palliative care teams can improve outcomes and reduce acute care use at end of life. The goal of this study was to explore similarities in care practices among effective and diverse specialist teams to inform the development of other community-based teams.MethodsInterviews with 78 providers and administrators from 11 distinct community-based specialist palliative care teams from Ontario, Canada were conducted. Interviews were audio-recorded, transcribed and analysed using an inductive approach to identify common themes.Results3 key themes across all teams emerged. First, the distinct models of care were generally summarised into 3 models: primary care and specialist providers either collaborated by transferring, sharing or consulting in care. Second, teams explicitly or implicitly followed 7 common care practices related to: specialised expertise 24/7; intrateam communication; timeliness; physical symptom and psychosocial–spiritual management; education; peace and fulfilment; and advocacy for patient preferences. Third, all teams emphasised the importance of team building, even more than using clinical tools and processes.ConclusionsDespite wide variation in models of care among community-based specialist palliative care teams, this large qualitative study identified several common themes in care practices that can guide the development of other teams.

Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews

2021 ◽  
pp. 026921632199820
Author(s):  
Baby Foo ◽  
Michele Wiese ◽  
Bernadette Curryer ◽  
Roger J Stancliffe ◽  
Nathan J Wilson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
Thematic Analysis ◽  
Structured Interview ◽  
Care Staff ◽  
Specialist Palliative Care ◽  
Palliative Care Teams ◽  
The Face ◽  
Communication Challenges ◽  
D Values

Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

scholarly journals What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Psychological Needs ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Complex Needs ◽  
Sequential Explanatory ◽  
Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

scholarly journals 2 Tunnelled peritoneal catheters for recurrent ascites in a specialist palliative care unit

2021 ◽  
Author(s):  
Kirsty Thorpe ◽  
Jamie McKnight ◽  
Hildegard Kolb ◽  
Claire McCullough ◽  
Tim Morgan
Keyword(s):  
Palliative Care ◽  
Palliative Care Unit ◽  
Specialist Palliative Care

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.

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