The lived experience of patients suffering from stroke and their perception of palliative care needs: a literature review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Marwa Halabi ◽  
Inaam Khalaf ◽  
Salam Bani Hani
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Lived Experience ◽  
Care Service ◽  
Health Care Service ◽  
Stroke Recovery ◽  
Care Needs ◽  
Middle Income ◽  
Content Type ◽  
Palliative Care Needs

Purpose This study aims to review the lived experience of patients suffering from stroke and describe their perception of palliative care needs. Design/methodology/approach A literature review search was conducted. Web of Sciences, SAGE, CINAHL, PubMed and Jordanian Database for Nursing Research databases were used to search the literature. Findings The findings of 37 articles were address palliative care approaches for patients with stroke, lived experiences of patients suffering from stroke and the experience, barriers and facilitators related to health-care service for stroke survivors. Originality/value This review indicated the importance of recognizing palliative care needs among patients suffering from stroke to improve post-stroke recovery. This study recommends further research, especially in low- and middle-income countries, to understand patients’ experiences and recognize the main palliative care needs that can be incorporated into interventions designed to improve the quality of life among them.

scholarly journals Needs of patient with advanced stages of cancer in a Thai community

2018 ◽  
Vol 32 (5) ◽  
pp. 342-351
Author(s):  
Panita Krongyuth ◽  
Pimpan Silpasuwan ◽  
Chukiat Viwatwongkasem ◽  
Cathy Campbell
Keyword(s):  
Palliative Care ◽  
Content Analysis ◽  
Pain Management ◽  
Care Providers ◽  
Care Needs ◽  
Open Communication ◽  
Content Type ◽  
Advanced Stages ◽  
Palliative Care Needs ◽  
At Home

Purpose The purpose of this paper is to explore the needs of people with cancer in advanced stages and to analyze factors that influence them. Design/methodology/approach A concurrent mixed-method design was used. Descriptive design was conducted in Ubon Ratchathani Province, Thailand. Data were collected from a convenience sample of patients with advanced cancer of any tissue or organ. Questionnaires were completed by 110 patients aged 60 years and above (response rate 110/130=84.6 percent). In-depth interviews were conducted with a total of eight patients. Content analysis of semi-structured interviews of a sub-sample was subsequently performed to better understand the real needs of patients with advanced stages of cancer at home setting. Findings The majority (77.5 percent) reported a preference to spend their final days at home. The four most common palliative care needs were more information about disease and medical treatment (98.2 percent), more treatment for pain (97.3 percent), health education for family caregivers (95.5 percent) and health volunteers visit at home (95.5 percent). Content analysis of the qualitative data suggested that patient needs health care providers to deliver open communication, pain management and provide psychosocial supports. Originality/value The result showed that patients-related variables are associated with the palliative care needs in patients with advanced stages of cancer. Communication skills and pain management are the key components to support the need for palliative care at home and to benefit the quality of life in terminally ill patients.

Health care service quality: a journey so far

2020 ◽  
Vol 27 (6) ◽  
pp. 1893-1927
Author(s):  
Raghav Upadhyai ◽  
Neha Upadhyai ◽  
Arvind Kumar Jain ◽  
Hiranmoy Roy ◽  
Vimal Pant
Keyword(s):  
Health Care ◽  
Literature Review ◽  
Service Quality ◽  
Design Methodology ◽  
Care Service ◽  
Health Care Service ◽  
Professional Service ◽  
Content Type ◽  
Academic Literature ◽  
Measurement Strategies

PurposeHealth care service is a widely researched area. Several established models and instruments measuring health care service quality (HCSQ) are available in the published academic literature. The objective of this article is to summarize this vast pool of available knowledge under the themes of HCSQ, its determinants and measurement strategies.Design/methodology/approachSixty-three available published studies in peer reviewed journal combed in EBSCO and Google Scholar database have been examined and presented in exemplary literature review.FindingsThe findings have been segregated under the themes of HCSQ, its dimensions and determinants. It can be deduced from the findings that in spite of health care being a professional service, the user defined service quality takes center stage.Originality/valueRather than the seeker of care, the authors call for further research by taking a dyadic view of professional exchanges and including providers' perspectives of care in service quality evaluations as well.

scholarly journals IDentification of patients in need of general and specialised PALLiative care (ID-PALL©): item generation, content and face validity of a new interprofessional screening instrument.

2020 ◽  
Author(s):  
Fabienne Teike Lüthi ◽  
Mathieu Bernard ◽  
Michel Beauverd ◽  
Claudia Gamondi ◽  
Anne-Sylvie Ramelet ◽  
...  
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Criterion Validity ◽  
Delphi Process ◽  
Face Validity ◽  
Health Concern ◽  
Care Needs ◽  
Item List ◽  
Nurses And Physicians ◽  
Palliative Care Needs

Abstract Background Early identification of patients requiring palliative care is a major public health concern. A growing number of instruments exist to help professionals to identify these patients, however, thus far, none have been thoroughly assessed for criterion validity. In addition, no currently available instruments differentiate between patients in need of general vs. specialised palliative care, and most are primarily intended for use by physicians. This study aims to develop and rigorously validate a new interprofessional instrument allowing identification of patients in need of general vs specialised palliative care. Methods The instrument development involved four steps: i) literature review to determine the concept to measure; ii) generation of a set of items; iii) review of the initial set of items by experts to establish the content validity; iv) administration of the items to a sample of the target population to establish face validity. We conducted a Delphi process with experts in palliative care to accomplish step 3 and sent a questionnaire to nurses and physicians non-specialised in palliative care to achieve step 4. The study was conducted in the French and Italian-speaking regions of Switzerland. An interdisciplinary committee of clinical experts supervised all steps. Results The literature review confirmed the necessity of distinguishing between general and specialised palliative care needs and of adapting clinical recommendations to these different needs. Thirty-six nurses and physicians participated in the Delphi process and 28 were involved in the face validity assessment. The Delphi process resulted in two lists: a 7-item list to identify patients in need of general PC and an 8-item list for specialised PC needs. The content and face validity were deemed to be acceptable by both the expert and the target populations. Conclusion This instrument makes a significant contribution to the identification of patients with palliative care needs as it has been designed to differentiate between general and specialised palliative care needs. Moreover, diagnostic data is not fundamental to the use of the instrument, thus facilitating its use by healthcare professionals other than physicians, in particular nurses. Internal and criterion validity assessments are ongoing and essential before wider dissemination of the instrument.

scholarly journals Cervical Cancer-Associated Suffering: Estimating the Palliative Care Needs of a Highly Vulnerable Population

2021 ◽  
pp. 862-872
Author(s):  
Eric L. Krakauer ◽  
Xiaoxiao Kwete ◽  
Khadidjatou Kane ◽  
Gauhar Afshan ◽  
Lisa Bazzett-Matabele ◽  
...  
Keyword(s):  
Cervical Cancer ◽  
Palliative Care ◽  
Family Caregivers ◽  
Financial Distress ◽  
Care Needs ◽  
Middle Income ◽  
Modified Delphi ◽  
High Prevalence ◽  
Clinically Significant ◽  
Palliative Care Needs

PURPOSE To enable design of optimum palliative care for women with cervical cancer, we studied the most common types of suffering and their severity, prevalence, and duration. METHODS We first reviewed the literature on the major types, severity, prevalence, and duration of suffering associated with cervical cancer. We then conducted a modified Delphi process with experts in cervical cancer care to supplement the literature. For each type of suffering, we distinguished between decedents (those who die from cervical cancer in a given year) and nondecedents (those who have cervical cancer in a given year but do not die). By applying the suffering prevalence and duration estimates to the number of decedents, nondecedents, and family caregivers in 2017, we were able to estimate their palliative care needs and the intensity of palliative care needed to respond adequately to this suffering. RESULTS There is a high prevalence among decedents of moderate or severe pain (84%), vaginal discharge (66%), vaginal bleeding (61%), and loss of faith (31%). Among both decedents and nondecedents, there is a high prevalence of clinically significant anxiety (63% and 50%, respectively), depressed mood (52% and 38%, respectively), and sexual dysfunction (87% and 83%, respectively). Moderate or severe financial distress is prevalent among decedents, nondecedents, and family caregivers (84%, 74%, and 66%, respectively). More than 40% of decedents and nondecedents are abandoned by their intimate partners. Most patients experience some combination of moderate or severe physical, psychological, social, and spiritual suffering. In total, 258,649 decedents and 2,558,857 nondecedents needed palliative care in 2017, approximately 85% of whom were in low- and middle-income countries where palliative care is rarely accessible. CONCLUSION Among women with advanced cervical cancer, suffering is highly prevalent and often severe and multifaceted.

scholarly journals IDentification of patients in need of general and specialised PALLiative care (ID-PALL©): item generation, content and face validity of a new interprofessional screening instrument.

2020 ◽  
Author(s):  
Fabienne Teike Lüthi ◽  
Mathieu Bernard ◽  
Michel Beauverd ◽  
Claudia Gamondi ◽  
Anne-Sylvie Ramelet ◽  
...  
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Criterion Validity ◽  
Delphi Process ◽  
Face Validity ◽  
Health Concern ◽  
Care Needs ◽  
Item List ◽  
Nurses And Physicians ◽  
Palliative Care Needs

Abstract Background Early identification of patients requiring palliative care is a major public health concern. A growing number of instruments exist to help professionals to identify these patients, however, thus far, none have been thoroughly assessed for criterion validity. In addition, no currently available instruments differentiate between patients in need of general vs. specialised palliative care, and most are primarily intended for use by physicians. This study aims to develop and rigorously validate a new interprofessional instrument allowing identification of patients in need of general vs specialised palliative care. Methods The instrument development involved four steps: i) literature review to determine the concept to measure; ii) generation of a set of items; iii) review of the initial set of items by experts to establish the content validity; iv) administration of the items to a sample of the target population to establish face validity. We conducted a Delphi process with experts in palliative care to accomplish step 3 and sent a questionnaire to nurses and physicians non-specialised in palliative care to achieve step 4. The study was conducted in the French and Italian-speaking regions of Switzerland. An interdisciplinary committee of clinical experts supervised all steps. Results The literature review confirmed the necessity of distinguishing between general and specialised palliative care needs and of adapting clinical recommendations to these different needs. Thirty-six nurses and physicians participated in the Delphi process and 28 were involved in the face validity assessment. The Delphi process resulted in two lists: a 7-item list to identify patients in need of general PC and an 8-item list for specialised PC needs. The content and face validity were deemed to be acceptable by both the expert and the target populations. Conclusion This instrument makes a significant contribution to the identification of patients with palliative care needs as it has been designed to differentiate between general and specialised palliative care needs. Moreover, diagnostic data is not fundamental to the use of the instrument, thus facilitating its use by healthcare professionals other than physicians, in particular nurses. Internal and criterion validity assessments are ongoing and essential before wider dissemination of the instrument.

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