The networks of care surrounding cancer palliative care patients

Jarrett, Nikki; Porter, Katerina; Davis, Carol; Addington‐Hall, Julia; Duke, Sue; Corner, Jessica; Lathlean, Judith

doi:10.1136/bmjspcare-2014-000782

Cited by 7 publications

(7 citation statements)

References 16 publications

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“…In the Managing Medicines study, we wanted to explore the range of services and people involved in supporting patient care, particularly in relation to how the tasks of medicines management were distributed throughout the patient's informal and professional networks. 17,138 Reflective accounts of bereaved family caregivers (BFCGs) provided insights into the entire trajectory of end-of-life care and the nature and impact of the experience of informal care provision. We also wanted to understand the experience of care of patients from disadvantaged and underserved groups, and how professional services identify and respond to the difficulties and concerns arising in medicines management for patients in these groups.…”

Section: Network Of Care In a Complex Systemmentioning

confidence: 99%

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Pollock

Wilson

Caswell

et al. 2021

Health Serv Deliv Res

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Background More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services. Objective To investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting. Design A qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops. Setting This took place in Nottinghamshire and Leicestershire, UK. Results As patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care. Limitations The study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned. Conclusions The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life. Future work Priorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 14. See the NIHR Journals Library website for further project information.

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Section: Network Of Care In a Complex Systemmentioning

confidence: 99%

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Pollock

Wilson

Caswell

et al. 2021

Health Serv Deliv Res

View full text Add to dashboard Cite

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“…This study shows that patients may have different understandings of the organisation of their care (network) than HCPs. Therefore, it can be challenging for patients to have insight into who is involved in their care network, 16 what are the specific roles of HCPs, for example, palliative care specialists 27 and who is the main responsible HCP for their care. HCPs involved in integrated palliative care initiatives should be aware of potential needs of patients to clarify roles of specific key workers and to support them in navigating the health system.…”

Section: Discussionmentioning

confidence: 99%

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries

et al. 2018

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Background:Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals’ perspectives.Aim:(1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction.Design:Cross-sectional explorative design.Setting/participants:We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands.Results:About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians (p < 0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient’s care networks varied across countries. Perceived integration was significantly associated with overall satisfaction.Conclusion:Palliative care professionals are not always present or recognised as such in patients’ care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

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“…9,10 Mapping care networks in the field of palliative care has been discussed as a way to analyze possible overlaps and gaps in existing support. 11 Among parents of pediatric cancer patients, satisfaction with support and size of the support network were positively correlated. 12 This study investigates whether parent-generated network maps can be a helpful instrument for family caregivers and healthcare professionals caring for children with life-limiting diseases.…”

Section: Introductionmentioning

confidence: 98%

Visualizing social support in home pediatric palliative care using network maps

et al. 2019

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Background: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. Aim: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. Design: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. Setting/participants: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. Results: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. Conclusion: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers’ support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

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The networks of care surrounding cancer palliative care patients

Cited by 7 publications

References 16 publications

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries

Visualizing social support in home pediatric palliative care using network maps

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