Patients’ experiences of using the Integrated Palliative care Outcome Scale for a person‐centered care: A qualitative study in the specialized palliative home‐care context

2019 ◽  
Vol 26 (4) ◽  
Author(s):  
Cecilia Högberg ◽  
Anette Alvariza ◽  
Ingela Beck
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Home Care ◽  
Palliative Home Care ◽  
Person Centered Care ◽  
Palliative Care Outcome Scale ◽  
Centered Care ◽  
Care Outcome

scholarly journals Monitoring of Palliative Care Symptoms and Concerns in Specialized Palliative Home Care Using an Electronic Version of the Integrated Palliative care Outcome Scale (Palli-MONITOR): protocol for a mixed-methods study

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e042266
Author(s):  
Anna Bolzani ◽  
Christina Ramsenthaler ◽  
Farina Hodiamont ◽  
Isabel Sophie Burner-Fritsch ◽  
Claudia Bausewein
Keyword(s):  
Experimental Study ◽  
Palliative Care ◽  
Quantitative Analysis ◽  
Phase 1 ◽  
Electronic Version ◽  
Phase 2 ◽  
Palliative Home Care ◽  
Palliative Care Outcome Scale ◽  
Quasi Experimental ◽  
Care Outcome

IntroductionOver the last decades, patient-reported outcome (PRO) measures have been developed to better understand the patient’s perspective and enable patient-centred care. In palliative care, the Integrated Palliative care Outcome Scale (IPOS) is recommended as a PRO tool. Its implementation in specialised palliative home care (SPHC) would benefit from an electronic version validated for the setting.Following the Medical Research Council (MRC) guidance, the study Palli-MONITOR is developing (phase 1) and testing the feasibility (phase 2) of implementing the electronic version of IPOS (eIPOS) in the SPHC setting to inform a cluster-randomised phase 3 trial.Methods and analysisPalli-MONITOR is a multicentre, sequential mixed-methods, two-phase development and feasibility study. The study consists of four substudies. In phase 1 (MRC development phase), qualitative patient interviews and focus groups with SPHC professionals are used to identify barriers and facilitators of eIPOS (substudy I). Substudy II tests the equivalence of eIPOS and IPOS in a crossover randomised controlled trial. Phase 2 (MRC feasibility/piloting phase) includes a quasi-experimental study with two control groups (substudy III), and qualitative interviews as well as focus groups to explore the feasibility and acceptability of the developed intervention (substudy IV).Qualitative data will be analysed with thematic analysis following the framework approach. Quantitative analysis uses a two-way intraclass correlation coefficients model for the equivalence testing. Quantitative analysis of the quasi-experimental study will focus on the primary outcomes, recruitment rates and completeness of eIPOS. Secondary outcomes will include intraindividual change in palliative symptoms and concerns, quality of life and symptom burden.Ethics and disseminationApproval of the ethics committee of the Ludwig Maximilian University Munich was received for all study parts. Results and experiences will be presented at congresses and in written form. Additionally, participating SPHC teams will receive summarised results.Trial registration numberNCT03879668.

Helping Them Live Until They Die: Volunteer Practices in Palliative Home Care

2009 ◽  
Vol 39 (4) ◽  
pp. 734-752 ◽  
Author(s):  
Andrée Sévigny ◽  
Serge Dumont ◽  
S. Robin Cohen ◽  
Annie Frappier
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Home Care ◽  
Patient Care ◽  
Conceptual Framework ◽  
Essential Role ◽  
Palliative Home Care ◽  
Care System ◽  
Descriptive Qualitative

Volunteers traditionally play an essential role in palliative care. Without them, many community and institutional programs would not survive. Despite the significant number of volunteers involved in palliative care, the nature and scope of their actions remain ambiguous. The blurred boundaries of their contribution create tensions between professionals, families, and volunteers with regards to patient care and sharing of responsibilities. This article reports on a comprehensive and descriptive qualitative study aimed at understanding volunteer practices in home palliative care in Canada through analysis of volunteers’ discourse. The conceptual framework not only allows for a description of volunteer practices but also for an understanding of those practices in terms of the meaning volunteers ascribe to their actions and interactions. The information gathered provides a better understanding of the place of volunteers within the palliative care system, thereby allowing communities to optimize their contribution to the palliative care mission.

Tinjauan sistematis: Efektifitas Palliative Home Care untuk Pasien dengan HIV/AIDS

1970 ◽  
Vol 5 (1) ◽  
Author(s):  
Linlin Lindayani ◽  
Nenden Nur Asriyani Maryam
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Palliative Medicine ◽  
Cochrane Library ◽  
Palliative Home Care ◽  
Hiv Aids

Asuhan palitif untuk pasien dengan HIV/AIDS merupakan elemen inti dari asuhan pasien dengan HIV/AIDS. Asuhan paliatif yang berbasis home care saat ini menjadi elemen penting yang digunakan di berbagainegara. Akan tetapi, tidak ada studi atau tinjauan sebelumnya yang menganalisis efektifitas dari asuhanpaliatif yang berbasis home care pada pasien dengan HIV/AIDS. Tujuan dari tinjauan sistematik ini adalahuntuk mengevaluasi efektivitas Palliative Home Care untuk pasien dengan HIV/AIDS terhadap nyeri,pengendalian gejala, meningkatkan kualitas hidup, meningkatkan kepuasan asuhan, dan efektivitas biaya.Pencarian awal terbatas dilakukan di MEDLINE dan CINAHL. Kedua database tersebut dipilih denganpertimbangan bahwa keduanya merupakan database terbesar di bidang kesehatan dan kedokteran. Kemudiastrategi pencarian lainnya dilakukan pada database lain meliputi: Cochrane Library, UpToDate, Ovid, AIDSCare, Journal of Palliative Care, dan Journal of Palliative Medicine. Studi yang diterbitkan dalam Bahasa Inggrisdan tahun 2000-2016 dipertimbangkan untuk dimasukkan dalam tinjauan ini. Data diekstrak oleh penulis dandiringkas menggunakan alat ekstraksi data dari JBI (Joanna Briggs Institute). Kami menemukan 4 studi yangmasuk kedalam kriteria tinjauan kami, satu studi randomizes control trial dan tiga studi prospectively control.Hasil dari tinjauan ini menunjukkan bahwa Palliative Home Care terbukti efektif dalam mengontol nyeridan gejala-gelaja lain, mempertahankan dan meningkatkan kualitas hidup pasien, tingginya kepuasan daripasien dan kelurga terhadap asuhan Palliative Home Care berkisar 93% - 96% dan lebih cost-effectivenessdibandingkan dengan Hospital-Based Palliative Care. Dengan demikian, penting untuk mengembangkanPalliative Home Care untuk pasien dengan HIV/AIDS terutama untuk negara dengan sumber daya yang terbatas.

scholarly journals Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  
Keyword(s):  
Decision Making ◽  
Home Care ◽  
Shared Decision Making ◽  
Care Service ◽  
Home Care Services ◽  
Shared Decision ◽  
Care Services ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Abstract Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Dementia ◽  
2021 ◽  
pp. 147130122110126
Author(s):  
Alexandra E Harper ◽  
Lauren Terhorst ◽  
Marybeth Moscirella ◽  
Rose L Turner ◽  
Catherine V Piersol ◽  
...  
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
Home Care ◽  
Scoping Review ◽  
Informal Caregivers ◽  
Nursing Home Care ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Background Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia. Methods In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com , CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes. Results We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances. Conclusion Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.

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