scholarly journals Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers

2015 ◽  
Vol 14 (1) ◽  
Author(s):  
Maja Holm ◽  
Ida Carlander ◽  
Carl-Johan Fürst ◽  
Yvonne Wengström ◽  
Kristofer Årestedt ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Home Care ◽  
Family Caregivers ◽  
Educational Intervention ◽  
Health Professionals ◽  
Palliative Home Care

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 Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Palliative Home Care ◽  
Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

Care without sufficient knowledge of people with home enteral tube feeding: a qualitative study

2021 ◽  
Vol 19 (10) ◽  
pp. 26-34
Author(s):  
Mehri Doosti-Irani ◽  
Farangis Heidari Goojani ◽  
Leila Rafiee Vardanjani ◽  
Kobra Noorian
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Health Professionals ◽  
Tube Feeding ◽  
Interview Data ◽  
Negative Consequences ◽  
Correct Position ◽  
Face To Face ◽  
Enteral Tube Feeding ◽  
The Family

Aim: This study aimed to explore family caregivers' experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-to-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: ‘abandoned training’ and ‘lack of knowledge of nutrition’. Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care.

Leadership in specialist palliative home care teams: A qualitative study

2019 ◽  
Vol 28 (1) ◽  
pp. 102-111
Author(s):  
Anna Klarare ◽  
Susanne Lind ◽  
Johan Hansson ◽  
Bjöörn Fossum ◽  
Carl Johan Fürst ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Home Care ◽  
Palliative Home Care

Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care

2019 ◽  
Vol 22 (12) ◽  
pp. 1530-1535 ◽  
Author(s):  
Maja Holm ◽  
Kristofer Årestedt ◽  
Anette Alvariza
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Palliative Home Care

scholarly journals Corporeidade de adoecidos oncológicos em cuidados paliativos domiciliares: a vivência de familiares cuidadores / Corporeality of oncological patients in palliative home care: the experience of family caregivers

2018 ◽  
Vol 10 (2) ◽  
pp. 423
Author(s):  
Raisa Silva Martins ◽  
Antonio Jorge Silva Correa Júnior ◽  
Mary Elizabeth de Santana ◽  
Lucialba Maria Silva dos Santos
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Palliative Home Care ◽  
Oncological Patients

Objetivo: Descrever a vivência de cuidadores no que concerne aos cuidados às dimensões do corpo de adoecidos em cuidados paliativos domiciliares. Método: Estudo do tipo descritivo com abordagem qualitativa por intermédio da Análise de Conteúdo de Bardin, realizado com cuidadores domiciliares com familiares cadastrados pelo Serviço de Atendimento Domiciliar de um Centro de Assistência de Alta Complexidade em Oncologia. Resultados e Discussão: A população estudada compreendeu 10 cuidadoras que recebiam visitas domiciliares. A partir da análise dos códigos e conteúdos das mensagens, foram categorizadas unidades dos discursos em dois eixos. São eles: “Corporeidade: Cuidados vivenciados que atendem as Necessidades Orgânicas” e “Corporeidade: Cuidados Vivenciados que atendem as necessidades Psicoemocionais, Psicoespirituais e Ambientais”. Conclusão: o cuidado está compartimentalizado para os familiares que contrapõem os préstimos ao corpo social e préstimos ao corpo físico, recordando primeiramente do último.

scholarly journals Early palliative home care: Evaluation of an interprofessional educational intervention for district nurses and general practitioners about nutritional care

2017 ◽  
Vol 5 ◽  
pp. 205031211772646 ◽  
Author(s):  
Erika Berggren ◽  
Ann Ödlund Olin ◽  
Ylva Orrevall ◽  
Peter Strang ◽  
Sven-Erik Johansson ◽  
...  
Keyword(s):  
Home Care ◽  
General Practitioners ◽  
Educational Intervention ◽  
Palliative Home Care ◽  
Nutritional Care ◽  
District Nurses ◽  
Care Evaluation

scholarly journals Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maria Norinder ◽  
Kristofer Årestedt ◽  
Susanne Lind ◽  
Lena Axelsson ◽  
Gunn Grande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Family Caregivers ◽  
Emotional Health ◽  
Support Needs ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Life Threatening Illness ◽  
Life Threatening

Abstract Background Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

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