When and how do healthcare professionals introduce specialist palliative care to the families of children with life-threatening conditions in Taiwan? A qualitative study

2021 ◽  
Author(s):  
Shih-Chun Lin ◽  
Kai-Ling Chang ◽  
Mei-Chih Huang
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Specialist Palliative Care ◽  
Life Threatening

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 “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

scholarly journals Recognition and response to life-threatening situations among women with perinatal mental illness: a qualitative study

BMJ Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. e025872 ◽  
Author(s):  
Abigail Easter ◽  
Louise Michelle Howard ◽  
Jane Sandall
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Qualitative Study ◽  
Service Provision ◽  
Healthcare Professionals ◽  
Perinatal Period ◽  
Professional Culture ◽  
Near Miss ◽  
Prescribe Medication ◽  
Life Threatening

ObjectiveMental illness has persistently been found to be a leading cause of death during pregnancy and the year after birth (the perinatal period). This study aims to explore barriers to detection, response and escalation of mental health-related life-threatening near miss events among women with perinatal mental illness.DesignQualitative study.ParticipantsHealthcare professionals (HCP) working in psychiatry, maternity and primary care (n=15) across community and hospital maternity and perinatal services within the UK.MethodsIn-depth semistructured interviews were conducted with a range of healthcare professionals working with women during the perinatal period. An iterative process of inductive and deductive thematic analysis, informed by systems theories of healthcare and the Three Delays model, was employed to analyse the data.ResultsThree overarching themes were identified: recognition of severity, communication of risk and service provision and access to treatment. Differing perspectives of mental illness severity influenced how life-threatening situations among women with perinatal mental illness were described, recognised and communicated between teams. Under-resourced mental health service provision, particularly within emergency and specialist perinatal mental health services, unclear thresholds for escalating care and poor infrastructure for sharing information all contributed to delays in a timely response to crisis situations. Reluctance to prescribe medication or admit women to psychiatric hospital, stigma and missed appointments created further delays.ConclusionsResponse and escalation of care for life threatening near miss events among women with mental illness is strongly influenced by professional culture and understandings of mental illness embedded within different healthcare disciplines. Focusing on how differences in organisational and professional culture contribute to the recognition of severe mental illness and interdisciplinary communication may help facilitate clearer co-ordination between teams.

scholarly journals Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review

2019 ◽  
Vol 34 (3) ◽  
pp. 387-402 ◽  
Author(s):  
Sarah Mitchell ◽  
Karina Bennett ◽  
Andrew Morris ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Realist Review ◽  
Health Concern ◽  
Service Development ◽  
Children And Families ◽  
Family Outcomes ◽  
Number Of Children ◽  
Palliative Care Services ◽  
Life Threatening

Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.

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