Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope)

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

Jurnal Keperawatan Padjadjaran ◽

10.24198/jkp.v5i1.347 ◽

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.

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Patients Benefit from Using the Integrated Palliative Care Outcome Scale During Specialized Palliative Home Care

10.26226/morressier.5c76c8bbe2ea5a7237612610 ◽

2019 ◽

Author(s):

Ingela Beck

Keyword(s):

Palliative Care ◽

Home Care ◽

Palliative Home Care ◽

Palliative Care Outcome Scale ◽

Care Outcome

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Quality Assurance in Specialized Palliative Home Care (QUAPS) - A Questionnaire's Feasibility

10.26226/morressier.5c76c8bbe2ea5a72376125f5 ◽

2019 ◽

Author(s):

David Berghaus

Keyword(s):

Quality Assurance ◽

Home Care ◽

Palliative Home Care

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Faculty Opinions recommendation of Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.725776450.793509570 ◽

2015 ◽

Author(s):

Jeffrey Braithwaite ◽

Anne Hogden

Keyword(s):

Home Care ◽

Mixed Method ◽

Palliative Home Care ◽

Provider Perspectives ◽

Mixed Method Design

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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

Palliative Medicine ◽

10.1177/02692163211026516 ◽

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 .

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