The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study

Background Internationally, non-malignant respiratory disease is on the increase. However, although palliative care is recommended as an appropriate healthcare option for this client group, evidence suggests that these patients and their carers do not receive the same standards of palliative care as patients with a malignant lung condition. Aim The aim of this review was to provide a critical overview of the current evidence base in relation to the palliative service provision for people with non-malignant respiratory disease and their carers. Methods A review of the literature was conducted in July 2015 and updated in October 2017 and focused on the palliative care service provision for patients with interstitial lung disease, chronic obstructive pulmonary disease and bronchiectasis. Results In total, 71 empirical studies were included in the review and grouped into two main themes: patient and carer’s bio-psychosocial symptom needs and management, and palliative care service provision for patients with non-malignant respiratory disease and their carers. Conclusion The majority of palliative research focuses on patients with a diagnosis of chronic obstructive pulmonary disease. A deeper insight is required into the palliative service provision experienced by those with other forms of non-malignant respiratory disease such as bronchiectasis and interstitial lung disease.

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A protocol for determining differences in consistency and depth of palliative care service provision across community sites

Health & Social Care in the Community ◽

10.1111/j.1365-2524.2010.00933.x ◽

2010 ◽

Vol 18 (5) ◽

pp. 537-548 ◽

Cited By ~ 12

Author(s):

Nadine Schuurman ◽

Valorie A. Crooks ◽

Ofer Amram

Keyword(s):

Palliative Care ◽

Service Provision ◽

Care Service ◽

Palliative Care Service

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An examination of the research priorities for a hospice service in New Zealand: A Delphi study

Palliative & Supportive Care ◽

10.1017/s1478951515000838 ◽

2015 ◽

Vol 14 (3) ◽

pp. 232-240 ◽

Cited By ~ 3

Author(s):

Kay de Vries ◽

Jo Walton ◽

Katherine Nelson ◽

Rhondda Knox

Keyword(s):

Decision Making ◽

Palliative Care ◽

New Zealand ◽

Symptom Management ◽

Care Service ◽

Research Priorities ◽

Palliative Care Service ◽

Family Carers ◽

Research Topics ◽

Research Themes

AbstractObjectives:Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed “vulnerable” and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.Methods:A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1–3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.Results:At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.Significance of results:The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

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Family carer support in home and hospital: a cross-sectional survey of specialised palliative care

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-001795 ◽

2019 ◽

Vol 10 (4) ◽

pp. e33-e33

Author(s):

Maarten Vermorgen ◽

Aline De Vleminck ◽

Kathleen Leemans ◽

Lieve Van den Block ◽

Chantal Van Audenhove ◽

...

Keyword(s):

Palliative Care ◽

Care Service ◽

Palliative Care Service ◽

Palliative Care Unit ◽

Information Support ◽

Family Carers ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Care Services ◽

Palliative Care Services

ObjectivesTo evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.MethodsA cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.ResultsOf all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.ConclusionsFamily carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

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