scholarly journals Implementing person-centred outcome measures in palliative care: An exploratory qualitative study using Normalisation Process Theory to understand processes and context

2020 ◽  
pp. 026921632097204
Author(s):  
Andy Bradshaw ◽  
Martina Santarelli ◽  
Malene Mulderrig ◽  
Assem Khamis ◽  
Kathryn Sartain ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Outcome Measures ◽  
Process Theory ◽  
Normalisation Process Theory ◽  
Routine Practice ◽  
Successful Implementation ◽  
Causal Mechanisms ◽  
Care Services ◽  
Palliative Care Services

Background: Despite evidence demonstrating the utility of using Person-Centred Outcome Measures within palliative care settings, implementing them into routine practice is challenging. Most research has described barriers to, without explaining the causal mechanisms underpinning, implementation. Implementation theories explain how, why, and in which contexts specific relationships between barriers/enablers might improve implementation effectiveness but have rarely been used in palliative care outcomes research. Aim: To use Normalisation Process Theory to understand and explain the causal mechanisms that underpin successful implementation of Person-Centred Outcome Measures within palliative care. Design: Exploratory qualitative study. Data collected through semi-structured interviews and analysed using a Framework approach. Setting/participants: 63 healthcare professionals, across 11 specialist palliative care services, were purposefully sampled by role, experience, seniority, and settings (inpatient, outpatient/day therapy, home-based/community). Results: Seven main themes were developed, representing the causal mechanisms and relationships underpinning successful implementation of outcome measures into routine practice. Themes were: Subjectivity of measures; Frequency and version of Integrated Palliative care Outcome Scale; Training, education, and peer support; Building and sustaining community engagement; Electronic system readiness; The art of communication; Reinforcing use through demonstrating value. Conclusions: Relationships influencing implementation resided at individual and organisational levels. Addressing these factors is key to driving the implementation of outcome measures into routine practice so that those using palliative care services can benefit from the systematic identification, management, and measurement of their symptoms and concerns. We provide key questions that are essential for those implementing and using outcome measures to consider in order to facilitate the integration of outcome measures into routine palliative care practice.

Clinicians’ perceptions of opioid error–contributing factors in inpatient palliative care services: A qualitative study

2019 ◽  
Vol 33 (4) ◽  
pp. 430-444 ◽  
Author(s):  
Nicole Heneka ◽  
Priyanka Bhattarai ◽  
Tim Shaw ◽  
Debra Rowett ◽  
Samuel Lapkin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
System Level ◽  
Quality And Safety ◽  
Specialist Palliative Care ◽  
Structured Interviews ◽  
Contributing Factors ◽  
Care Services ◽  
Palliative Care Services

Background: Opioid errors are a leading cause of patient harm and adversely impact palliative care inpatients’ pain and symptom management. Yet, the factors contributing to opioid errors in palliative care are poorly understood. Identifying and better understanding the individual and system factors contributing to these errors is required to inform targeted strategies. Objectives: To explore palliative care clinicians’ perceptions of the factors contributing to opioid errors in Australian inpatient palliative care services. Design: A qualitative study using focus groups or semi-structured interviews. Settings: Three specialist palliative care inpatient services in New South Wales, Australia. Participants: Inpatient palliative care clinicians who are involved with, and/or have oversight of, the services’ opioid delivery or quality and safety processes. Methods: Deductive thematic content analysis of the qualitative data. The Yorkshire Contributory Factors Framework was applied to identify error-contributing factors. Findings: A total of 58 clinicians participated in eight focus groups and 20 semi-structured interviews. Nine key error contributory factor domains were identified, including: active failures; task characteristics of opioid preparation; clinician inexperience; sub-optimal skill mix; gaps in support from central functions; the drug preparation environment; and sub-optimal clinical communication. Conclusion: This study identified multiple system-level factors contributing to opioid errors in inpatient palliative care services. Any quality and safety initiatives targeting safe opioid delivery in specialist palliative care services needs to consider the full range of contributing factors, from individual to systems/latent factors, which promote error-causing conditions.

Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

2011 ◽  
Vol 26 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Bridget Whitehead ◽  
Mary R O’Brien ◽  
Barbara A Jack ◽  
Douglas Mitchell
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Health Professionals ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Planning ◽  
Family Carers ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

‘The horse has bolted I suspect’: A qualitative study of clinicians’ attitudes and perceptions regarding palliative rehabilitation

2016 ◽  
Vol 31 (7) ◽  
pp. 642-650 ◽  
Author(s):  
Fiona Runacres ◽  
Heidi Gregory ◽  
Anna Ugalde
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Palliative Medicine ◽  
Evidence Base ◽  
Structured Interviews ◽  
Care Services ◽  
Attitudes And Perceptions ◽  
Palliative Care Services ◽  
Palliative Care Units ◽  
Rehabilitation Needs

Background: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. Aim: To explore palliative medicine physicians’ attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. Design: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. Participants: Australian palliative medicine physicians working in inpatient palliative care units. Results: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years’ experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians’ attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. Conclusion: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Experiences of Volunteers and Patient Satisfaction in Home Based Palliative Care, Puducherry, South India—A Descriptive Qualitative Study

2021 ◽  
pp. 082585972110264
Author(s):  
Sadhana Subramanian ◽  
Sonali Sarkar ◽  
Mathavaswami Vijayageetha ◽  
S Adhinarayanan
Keyword(s):  
Palliative Care ◽  
Patient Satisfaction ◽  
Qualitative Study ◽  
Ageing Population ◽  
Care Programme ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services ◽  
Palliative Care Programme ◽  
Descriptive Qualitative

Context: Increasing burden of non-communicable diseases and ageing population has parallely increased the need for Palliative care. Unavailable, inaccessible, and inadequate palliative care services in our setting increased the need for volunteers. In Puducherry, palliative care programme was implemented through trained volunteers in 2015. Aims: To explore the experiences of volunteers who provide palliative care and also to get feedback on volunteering from the patients who received care. Settings and Design: A descriptive qualitative study was carried out at two Non-Governmental Organizations (NGO) working for palliative care in and around Puducherry. Methods and Material: Participants were selected purposively to include seven volunteers and eight patients to attain information saturation. The time period of this study was between September and October 2018. Analysis Used: Manual thematic analysis was done to identify codes, which were grouped to form categories and themes. Results: Factors that facilitated participants to take up the role of volunteers were witnessing the death of family members with unmet palliative care when required and experiences in organizations working for elderly and disabled children. Improvement in patients’ condition and patient satisfaction motivated them to continue, despite lack of resources and social support. Their perception was of having become bolder and empathetic by working as palliative care volunteers. Patients reported satisfaction with the provision of drugs and other materialistic support like clothes and sweets during festivals; however, their basic and financial needs remained unmet. Conclusion: The palliative care programme or the National programme for elderly should focus on components that would improve the quality of palliative care by reducing patients’ dissatisfaction. Support in terms of provision of drugs, financial help and nutrition is necessary to improve both the patients’ and volunteers’ satisfaction in palliative care services.

scholarly journals Patient, Caregiver, and Physician Barriers to Home-Based Palliative Care: Findings From a Terminated Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Susan Enguidanos ◽  
Stephanie Wladkowski
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Insurance Company ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

scholarly journals Comparing the Perspectives of Professionals and Relatives Toward the Quality of Palliative Care: A Qualitative Study

2020 ◽  
Vol 5 (4) ◽  
Author(s):  
Emily Reeves ◽  
Brigitte Liebig ◽  
Eveline Degen Jermann ◽  
◽  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
Qualitative Study ◽  
Family Members ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services ◽  
Specialized Palliative Care ◽  
Palliative Patients

High-quality care is an important aim of palliative care services. However, the quality of care is a complex phenomenon and is subjectively perceived by those who are closest to the services and are often evaluated poorly. Prior research has highlighted the difficulties in evaluating the quality of care because of different perspectives, and still, only a little is understood about the perception of the quality of care in palliative care services. Investigating the perspectives of key individuals involved in palliative care, such as palliative professionals and relatives of palliative patients, can provide invaluable insight to understand the quality of care. To identify the perceptions of palliative professionals and relatives of the patients toward the quality of palliative care along with identifying the similarities and divergences in the perceptions, as well as highlighting the complexity of quality in palliative care settings while indicating their areas of improvement. This was a qualitative study that involved semi-structured interviews for the evaluation of palliative care guided by the proposed system approach model [1]. The interviews were conducted with a total number of 38 professionals working in palliative care along with 26 relatives of palliative patients across four Swiss cantons (Ticino, Basel, Vaud, and Lucerne). These professionals worked in primary palliative care (PPC) and specialized palliative care (SPC), where 11 general practitioners (GP’s) and 12 nurses were from primary palliative care services. Additionally, 15 interviews were conducted with 9 specialized medical doctors (e.g., oncologists) and 6 specialized palliative care nurses from different hospitals, hospices, mobile palliative care teams (MPCT’s), and specialist private practice. The results revealed considerable differences between the perspectives of professionals and relatives regarding the following aspects of care: 1) the availability, 2) client-centeredness (including respect for patient’s wishes and relative’s involvement in care, 3) satisfaction (including physical and psychosocial), and 4) communication and information transfer. Mainly, the family members felt that care was not being always readily available and coordinated poorly, the patient’s needs were overlooked because of the lack of time. Also, some professionals were perceived to be incompetent with a lack of communication and negligence toward the psychosocial needs of the patient. On the other hand, professionals indicated that relatives may be too involved in the patient care and might have expressed concern due to the high risk of burn out caused by extreme stress and emotionally taxing circumstances of palliative care. The different perspectives uncovered both the similarities and discrepancies, representing a demand for addressing the shortcomings of palliative care services. Specifically, findings indicated that professionals may overestimate the quality of palliative care. Also, future initiatives were needed to ensure that the family members of palliative patients were adequately supported, both psycho-socially and financially, justifying the investment. These findings would help in informing the health policy about the aspects of care that require specific attention to improve the overall quality of care and urge future research to explore the best ways to support these aspects of care.

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