Implementation and evaluation of clinical supervision for support workers in a paediatric palliative care setting

Support workers represent a large proportion of the NHS workforce and yet their supervisory needs are often overlooked. This study focused specifically on a cohort of support workers in a community paediatric palliative care setting. Peer supervision was implemented for this group, initially face to face and then virtually. The experiences of clinical supervision for this group were investigated through responses to an online survey ( n = 25) and two focus groups ( n = 7). Survey data were analysed concurrently with a thematic analysis. The following themes and sub-themes were developed from transcribed focus groups: (1) Barriers to engagement (2) Being Listened to (3) What Worked Well: Logistics. Overall, delivery of supervision was effective to a mixed degree – though support workers appreciated a space to be listened to, their distrust of colleagues and other barriers impeded the capacity of supervision to achieve more than support and catharsis for this group. Future projects should focus on introducing more preliminary interventions to promote reflection and peer support for these groups as well as continue to consider the supervisory needs of support workers.

Download Full-text

The caregiver perspective: Advancing the understanding of cancer caregiving in the palliative care setting.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.34_suppl.17 ◽

2018 ◽

Vol 36 (34_suppl) ◽

pp. 17-17 ◽

Cited By ~ 1

Author(s):

Martha Raymond ◽

Margaret-Ann Simonetta

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Focus Groups ◽

Care Setting ◽

Unmet Needs ◽

Supportive Services ◽

Caregiver Support ◽

Palliative Care Setting ◽

Cancer Caregivers

17 Background: 2018 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Throughout the care continuum, cancer caregivers provide invaluable support which greatly impacts and improves patient quality of life. In the palliative care setting caregiver support is vitally important, but many caregivers struggle to take care of their own needs and are not aware of supportive services. Our study explores the unmet needs of cancer caregivers in the palliative care setting. Methods: Over a two-year time period (2015-2017), our professional facilitator met with cancer caregivers in 32 states hosting nationwide focus groups. Primary goals were reaching caregivers in rural, urban, medically underserved, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated. 92% of caregivers did not feel comfortable defining palliative care nor did they realize the various supportive elements palliative care provides. 76% were extremely anxious during care transitions; 71% feel overwhelmed with daily caregiving tasks; 69% want to help make end of life decisions including advance directives in partnership with their loved one, but did not feel equipped to make tough decisions; 64% report lack of patient/caregiver centered communication with their healthcare team, including guidance on adverse effects and training for medical hands-on tasks. Conclusions: Caregivers in the palliative care setting need additional supportive services, effective interventions, and educational programs to meet their unmet needs. With additional support and awareness, enhanced quality of life for both caregiver and patient is possible. Our conversations with caregivers will continue as we increase palliative care awareness, collaborate with partners, develop meaningful programs, and expand our outreach to help meet the needs of caregivers in the palliative care setting.

Download Full-text

Māori Research(er) in Three Poems

The Ethnographic Edge ◽

10.15663/tee.v2i1.35 ◽

2018 ◽

Vol 2 (1) ◽

pp. 35

Author(s):

Jacquie Kidd

Keyword(s):

Palliative Care ◽

Health Literacy ◽

Cultural Identity ◽

Focus Groups ◽

Health Professionals ◽

Bell Hooks ◽

Face To Face ◽

The Third ◽

Ruth Behar ◽

Seeking Help

These three poems re-present the findings from a research project that took place in 2013 (Kidd et al. 2018, Kidd et al. 2014). The research explored what health literacy meant for Māori patients and whānau when they accessed palliative care. Through face-to-face interviews and focus groups we engaged with 81 people including patients, whānau, bereaved loved ones, support workers and health professionals. The poems are composite, written to bring some of our themes to life. The first poem is titled Aue. This is a Māori lament that aligns to English words such as ‘oh no’, or ‘arrgh’, or ‘awww’. Each stanza of the poem re-presents some of the stories we heard throughout the research. The second poem is called Tikanga. This is a Māori concept that encompasses customs, traditions and protocols. There are tikanga rituals and processes that guide all aspects of life, death, and relationships. This poem was inspired by an elderly man who explained that he would avoid seeking help from a hospice because ‘they leave tikanga at the door at those places’. His choice was to bear his pain bravely, with pride, within his cultural identity. The third poem is called ‘People Like Me’. This is an autoethnographical reflection of what I experienced as a researcher which draws on the work of scholars such as bell hooks (1984), Laurel Richardson (1997) and Ruth Behar (1996). These and many other authors encourage researchers to use frustration and anger to inform our writing; to use our tears to fuel our need to publish our research.

Download Full-text

Meeting the social, emotional and psychological needs of patients in a cancer palliative care setting: Student Nurses� experiences from Karachi, Pakistan

i-manager’s Journal on Nursing ◽

10.26634/jnur.1.1.1364 ◽

2011 ◽

Vol 1 (1) ◽

pp. 38-43

Author(s):

Nasreen Sulaiman Lalani ◽

◽

Shabana D. Lakhani ◽

Muslim Shah ◽

◽

...

Keyword(s):

Palliative Care ◽

Care Setting ◽

Student Nurses ◽

Psychological Needs ◽

Social Emotional ◽

The Social ◽

Palliative Care Setting

Download Full-text

Validation of the Phase II Feasibility Study in a Palliative Care Setting

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909112471422 ◽

2012 ◽

Vol 30 (8) ◽

pp. 752-758 ◽

Cited By ~ 9

Author(s):

Cindy Lee ◽

Ryash Vather ◽

Anne O’Callaghan ◽

Jackie Robinson ◽

Briar McLeod ◽

...

Keyword(s):

Palliative Care ◽

Feasibility Study ◽

Phase Ii ◽

Care Setting ◽

Palliative Care Setting

Download Full-text

Outcome measures for holistic, complex interventions within the palliative care setting

Complementary Therapies in Clinical Practice ◽

10.1016/j.ctcp.2007.10.001 ◽

2008 ◽

Vol 14 (1) ◽

pp. 25-32 ◽

Cited By ~ 12

Author(s):

Elizabeth Anita Thompson ◽

Tina Quinn ◽

Charlotte Paterson ◽

Helen Cooke ◽

Deidre McQuigan ◽

...

Keyword(s):

Palliative Care ◽

Outcome Measures ◽

Care Setting ◽

Complex Interventions ◽

Palliative Care Setting

Download Full-text

Bereaved spouses' adjustment after the patients' death in palliative care

Palliative & Supportive Care ◽

10.1017/s1478951507000594 ◽

2007 ◽

Vol 5 (4) ◽

pp. 397-404 ◽

Cited By ~ 24

Author(s):

Maria E. Carlsson ◽

Ingrid M. Nilsson

Keyword(s):

Palliative Care ◽

Sleep Disturbance ◽

Care Setting ◽

Significant Decline ◽

First Year ◽

Inclusion Criteria ◽

Life Situation ◽

Palliative Care Setting ◽

Advanced Home Care ◽

Grief Reactions

ABSTRACTObjectives:To improve the support to bereaved spouses during the year after the patient's death, a project was started consisting of three visits by a nurse (after 1, 3, and 13 months) with conversations about the patient's death and the spouse's life situation. The aim of this study was to describe the bereaved spouse's situation and adaptation during the first year after the loss.Methods:Spouses of patients cared for by The Advanced Home Care Team (APHCT) in Uppsala, Sweden, were invited to participate in the project. Each participant was encouraged to talk freely about his or her situation, but enough direction was given to ensure that all items listed on a standardized questionnaire were covered.Results:Fifty-one spouses met the inclusion criteria and were invited to participate and 45 accepted. The subjects felt quite healthy but were tired and suffered from sleep disturbance. The grief reactions had initially been high but showed a significant decline from 1 to 13 months (p < .01). Forty-nine percent had experienced postbereavement hallucinations.Significance of results:This study showed that the bereaved spouses felt quite healthy and adjusted quite well to their new life situation, after the patient's death in a palliative care setting. The grief reactions had initially been high but showed a significant decline during the year.

Download Full-text