Exploring the experiences and perspectives of families using a children’s hospice and professionals providing hospice care to identify future research priorities for children’s hospice care

Malcolm, Cari; Forbat, Liz; Knighting, Katherine; Kearney, Nora

doi:10.1177/0269216308098214

Cited by 21 publications

(38 citation statements)

References 23 publications

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“…Studies using telephone interviews are common (Malcolm, Forbat, Knighting, & Kearney, 2008; Ponto & Barton, 2008; Riley et al, 2009). Interview modes do not generally lead to significantly different responses (Clark, Rogers, Armstrong, Rakowski, & Kviz, 2008).…”

Section: Methodsmentioning

confidence: 99%

We Can Handle This: Parents' Use of Religion in the First Year Following Their Child's Diagnosis with Cystic Fibrosis

Grossoehme

Ragsdale

Wooldridge

et al. 2009

Journal of Health Care Chaplaincy

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The diagnosis of a child’s life-shortening disease leads many American parents to utilize religious beliefs. Models relating religious constructs to health have been proposed. Still lacking are inductive models based on parent experience. The specific aims of this study were: 1. develop a grounded theory of parental use of religion in the year after diagnosis; 2. describe whether parents understand a relationship between their religious beliefs and their follow-through with their child’s at-home treatment regimen. Fifteen parent interviews were analyzed using grounded theory method. Parents used religion to make meaning of their child’s cystic fibrosis (CF) diagnosis. Parents imagined God as active, benevolent, and interventionist; found hope in their beliefs; felt supported by God; and related religion to their motivation to adhere to their child’s treatment plan. Religious beliefs are clinically significant in working with many parents of children recently diagnosed with CF. Interventions that improve adherence to treatment may be enhanced by including religious aspects.

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Section: Methodsmentioning

confidence: 99%

We Can Handle This: Parents' Use of Religion in the First Year Following Their Child's Diagnosis with Cystic Fibrosis

Grossoehme

Ragsdale

Wooldridge

et al. 2009

Journal of Health Care Chaplaincy

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“…2001). Other Delphi studies have also utilised group discussions in their methodology to ensure breadth of responses (Malcolm et al . 2008).…”

Section: Methodsmentioning

confidence: 99%

Establishing research priorities for Australian radiation therapists: what patient care priorities need to be addressed?

Halkett¹,

Cox²,

Anderson³

et al. 2011

European Journal of Cancer Care

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Much of the research conducted in radiotherapy focuses on technology advances; however, research may also be warranted in the area of patient care. The aims of this paper are to (1) identify patient care-related research priorities in radiation therapy and (2) describe similarities and differences in radiation therapists' responses to research priorities related to patient care by subgroups revealed through cluster analysis. A Delphi process was used, examining problems in research that radiation therapists face. Three hundred and seventy-four problems were identified. These were translated into 53 research areas which were then prioritised. Participant subgroups were identified using a hierarchical cluster procedure. Agreement and disagreement between subgroups for the subscale of 'Patient Care' were analysed with ANOVA and post hoc Scheffe multiple comparisons. The three subgroups had varying degrees of research interest in patient care. The groups agreed on the importance of research in relation to patient care in reducing and managing side effects, patient education and support, and treatment techniques. However, there was disagreement about the importance of conducting research into the role of radiation therapists, radiation therapists communicating and educating patients, and psychosocial support. Further research is warranted to determine radiotherapy patients' priorities and improve evidence-based practice.

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“…These have included palliative care social workers (Kramer et al, 2005), and providers of palliative care for children (Malcolm et al, 2008;Steele et al, 2008). The priorities identified by these groups have generally taken a patient and caregiver focus.…”

Section: Communitymentioning

confidence: 99%

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

et al. 2015

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Objectives: 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, daycare, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n ¼ 10, 18, 9, for rounds 1-3, respectively) volunteers (n ¼ 10, 12, 11); and patients and family carers (n ¼ 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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Exploring the experiences and perspectives of families using a children’s hospice and professionals providing hospice care to identify future research priorities for children’s hospice care

Cited by 21 publications

References 23 publications

We Can Handle This: Parents' Use of Religion in the First Year Following Their Child's Diagnosis with Cystic Fibrosis

We Can Handle This: Parents' Use of Religion in the First Year Following Their Child's Diagnosis with Cystic Fibrosis

Establishing research priorities for Australian radiation therapists: what patient care priorities need to be addressed?

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

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