scholarly journals Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams

2016 ◽  
Vol 15 (2) ◽  
pp. 181-189 ◽  
Author(s):  
Anna Klarare ◽  
Birgit H Rasmussen ◽  
Bjöörn Fossum ◽  
Carl Johan Fürst ◽  
Johan Hansson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Continuity Of Care ◽  
Service Providers ◽  
Family Members ◽  
Team Leaders ◽  
Palliative Home Care ◽  
Team Outcomes ◽  
Palliative Care Teams ◽  
The Individual

AbstractBackground:Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.Objective:Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).Method:A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.Results:Two themes were constructed through thematic analysis: (1) security (“They are always available,” “I get the help I need quickly”); and (2) continuity of care (“They know me/us, our whole situation and they really care”). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.Significance of results:Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

A Study of the Association Between Multidisciplinary Home Care and Home Death Among Thai Palliative Care Patients

2016 ◽  
Vol 34 (5) ◽  
pp. 397-403 ◽  
Author(s):  
Kittiphon Nagaviroj ◽  
Thunyarat Anothaisintawee
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
Home Care ◽  
Home Visits ◽  
Place Of Death ◽  
Home Death ◽  
Data Set ◽  
Palliative Home Care ◽  
Palliative Care Teams ◽  
At Home

Purpose: Many terminally ill patients would prefer to stay and die in their own homes, but unfortunately, some may not be able to do so. Although there are many factors associated with successful home deaths, receiving palliative home visits from the multidisciplinary care teams is one of the key factors that enable patients to die at home. Our study was aimed to find whether there was any association between our palliative home care program and home death. Methods: A retrospective study was conducted in the Department of Family Medicine at Ramathibodi Hospital between January 2012 and May 2014. All of the patients who were referred to multidisciplinary palliative care teams were included. The data set comprised of patient’s profile, disease status, functional status, patient’s symptoms, preferred place of death, frequency of home visits, types of team interventions, and patient’s actual place of death. Multiple logistic regression was applied in order to determine the association between the variables and the probability of dying at home. Results: A total of 142 patients were included into the study. At the end of the study, 50 (35.2%) patients died at home and 92 (64.8%) patients died in the hospital. The multivariate logistic regression analysis demonstrated a strong association between multidisciplinary home care and home death (odds ratio 6.57, 95% confidence interval [CI] 2.48-17.38). Conclusion: Palliative home care was a significant factor enabling patients who want to die at home. We encourage health policy makers to promote the development of community-based palliative care programs in Thailand.

scholarly journals Healthcare professionals’ experiences of inter-professional collaboration during patient’s transfers between care settings in palliative care: A focus group study

2020 ◽  
pp. 026921632096874
Author(s):  
Fien Mertens ◽  
Zoë Debrulle ◽  
Evelyn Lindskog ◽  
Luc Deliens ◽  
Myriam Deveugele ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Group ◽  
Home Care ◽  
Continuity Of Care ◽  
Healthcare Professionals ◽  
Family Members ◽  
Professional Collaboration ◽  
Group Discussions ◽  
Care Services ◽  
Palliative Care Services

Background: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved. Aim: To explore healthcare professionals’ experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members. Design: Qualitative design, including focus group discussions. Setting/participants: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital’s palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals ( n = 53) from different care settings. Results: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement. A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals. Conclusion: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.

Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care

2016 ◽  
Vol 15 (3) ◽  
pp. 305-312 ◽  
Author(s):  
Maria Norinder ◽  
Ida Goliath ◽  
Anette Alvariza
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Family Members ◽  
Psychoeducational Intervention ◽  
Interpretive Description ◽  
Palliative Home Care ◽  
Type Method ◽  
Care And Support ◽  
Positive Experiences ◽  
At Home

ABSTRACTObjective:Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.Method:Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.Results:Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.Significance of results:Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

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.

How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals

2021 ◽  
pp. 026921632110265
Author(s):  
Hannah Seipp ◽  
Jörg Haasenritter ◽  
Michaela Hach ◽  
Dorothée Becker ◽  
Lisa-R Ulrich ◽  
...  
Keyword(s):  
Home Care ◽  
Focus Groups ◽  
Health Professionals ◽  
Care Delivery ◽  
Death And Dying ◽  
Theory Approach ◽  
Palliative Home Care ◽  
Palliative Care Teams ◽  
Key Issues

Background: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. Aim: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. Design: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. Setting/participants: All specialised palliative home-care teams ( n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations ( n = 5), and interviewed patients ( n = 14), relatives ( n = 14) and health professionals working in or collaborating with specialised palliative home-care ( n = 30). We also conducted focus groups ( n = 4) with health professionals including a member check. Results: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. Conclusions: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de .

scholarly journals Quality of life of caregivers of cancer patients in home palliative care: a non-interventional study

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
E Faggian ◽  
S Favero ◽  
D Gregori ◽  
M Martinato
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patient ◽  
Home Care ◽  
Continuity Of Care ◽  
Physical Stress ◽  
Private Life ◽  
Phone Call ◽  
Average Score

Abstract Background caregivers of home-cared cancer patient during palliative phase are often under psychological and physical pressure. This can lead to a low level quality of life (QoL). This study assesses the QoL of this type of caregiver, more specifically it aims to outline which factors (age, type of palliative care, amount of time spent daily with the patient) affect positively or negatively the QoL score. Methods The AC-QoL questionnaire has been completed by 25 caregivers of oncological patients in home care in north-eastern Italy. The questionnaire is made of 40 items divided into 8 subjects: support in care, choice of care, stress, economic issues, personal growth, sense of value, care skills and personal satisfaction. It has been administered during a home visit or during a follow-up phone call. Results The average score obtained is 71/120, which means a medium level of QoL. The factors which worsen the QoL are the psychological and physical stress (average score 5/15) and restrictions on caregivers' private life (average score 6/15). No significant differences in the QoL of the caregivers are related to social and personal variables (such as age, working condition, relationship with the patient, type of palliative care, amount of time spent daily with the patient). Conclusions These caregivers play a fundamental role in the management of an appropriate continuity of care and their health and QoL are important. Stress and restrictions on private life are the factors which worsen QoL, that's why nurses should evaluate the caregivers' wellbeing during home-visits. Caregivers usually feel able to offer adequate assistance if they have been adequately trained to by healthcare professionals: nurses should provide every useful tool to aloud the caregiver to feel able of and comfortable providing assistance to his/her relative trough an “empowerment process”. Key messages Caregiver of cancer patient in charge of home palliative care is fundamental for an appropriate continuity of care and his health and quality of life (QoL) are important to provide good assistance. Psycho-physical stress and restrictions on private life worsen QoL. Caregiver’s wellbeing should be assessed and useful tools should be provided by home care nurses to ease caregivers’ job.

scholarly journals Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care

2021 ◽  
pp. 1-7
Author(s):  
Megan Weber Falk ◽  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
Keyword(s):  
Home Care ◽  
Family Relationships ◽  
Family Members ◽  
Family Coping ◽  
Open Communication ◽  
Entire Family ◽  
Palliative Home Care ◽  
Dependent Children ◽  
Palliative Care Setting ◽  
The Family

Abstract Objective The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents. Method This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden. Results Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future. Significance of results This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

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