Identifying the attributes of threshold and higher level nursing practice for children's cancer and palliative care nurses: the views of children, their parents and other stakeholders

Hale, Claire; Long, Tony; Sanderson, Linda; Carr, Kristina

doi:10.1177/1744987107086099

Cited by 7 publications

(4 citation statements)

References 9 publications

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“…While nurses traditionally consider technical tasks and procedures as their primary professional obligation ( Milton, 2002 ), the adolescents indicated a need for stronger individual focus. This is in keeping with the conclusion of Hale et al that both children and parents found that the “strongest and most effective nursing” was exercised by nurses who “introduced themselves not only as professionals, but also as real people” ( Hale, Long, Sanderson, & Carr, 2008 ). Their study indicates that the adolescents' foremost expectation of the nurse concerns their personal or attitudinal characteristics, such as honesty, empathy, patience, friendliness, and humor, combined with supporting, attentive, and communicating behavior.…”

Section: Discussionsupporting

confidence: 86%

“…Their study indicates that the adolescents' foremost expectation of the nurse concerns their personal or attitudinal characteristics, such as honesty, empathy, patience, friendliness, and humor, combined with supporting, attentive, and communicating behavior. The findings of Hale et al (2008) are thus corroborated by our informants' remarks about the “nice” or “fantastic” nurses who exhibited understanding, empathy, and presence without apparently being restricted by time.…”

Section: Discussionsupporting

confidence: 71%

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Adolescents' Lived Experiences While Hospitalized After Surgery for Ulcerative Colitis

Olsen

Jensen

Larsen

et al. 2016

Gastroenterology Nursing

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Adolescents are in a transitional phase of life characterized by major physical, emotional, and psychological challenges. Living with ulcerative colitis is experienced as a reduction of their life quality. Initial treatment of ulcerative colitis is medical, but surgery may be necessary when medical treatment ceases to have an effect. No research-based studies of adolescents' experience of the hospital period after surgery for ulcerative colitis exist. The objective of the study was to identify and describe adolescents' lived experiences while hospitalized after surgery for ulcerative colitis. This qualitative study was based on interviews with eight adolescents. Analysis and interpretation were based on a hermeneutic interpretation of meaning. Three themes were identified: Body: Out of order; Seen and understood; and Where are all the others? The adolescents experience a postoperative period characterized by physical and mental impairment. Being mentally unprepared for such challenges, they shun communication and interaction. The findings demonstrate the importance of individualized nursing care on the basis of the adolescent's age, maturity, and individual needs. Further study of adolescent patients' hospital stay, focusing on the implications of being young and ill at the same time, is needed.

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Section: Discussionsupporting

confidence: 86%

Section: Discussionsupporting

confidence: 71%

Adolescents' Lived Experiences While Hospitalized After Surgery for Ulcerative Colitis

Olsen

Jensen

Larsen

et al. 2016

Gastroenterology Nursing

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“…The presence of any given structure or type of follow-up care did not result in a greater likelihood of any other structure or follow-up being present. However, findings from the initial study phases, as well as recent findings [ 29 , 33 – 38 ] from others, indicated a need for greater attention to these structures of care and to bereavement follow-up when assessing quality of end-of-life care for children. Items comprising the Structures of Care and Provide Bereavement Follow-up domains were retained as stand-alone items with good content and face validity.…”

Section: Resultsmentioning

confidence: 99%

Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care

et al. 2015

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BackgroundThe field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care.MethodsThe study purpose was to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children’s hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted.ResultsFollowing review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument.ConclusionsThere is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children’s end-of-life care.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-684X-14-1) contains supplementary material, which is available to authorized users.

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“…29,30 Parents preferred to interact with health professionals who had good communication and interpersonal skills, 27,29,31-36 including compassion, 23,24,36,37 gentle concern, 4,38 care and sensitivity particularly when breaking bad news, 24,29,35,36,[38][39][40][41] and a sense of humor. 30,38,42 Simple acts of smiling, making eye contact, showing emotion, and initiating physical contact were appreciated by parents and fostered connections with the health professional. 27,40,43,44 Parents appreciated when health professionals took the time to get to know all family members, including siblings, and their situation apart from that related to the ill child.…”

Section: Connectingmentioning

confidence: 99%

Exploring the Supportive Care Model as a Framework for Pediatric Palliative Care

Widger

Steele

Oberle

et al. 2009

Journal of Hospice & Palliative Nursing

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v The fit between the Supportive Care Model and existing research on parent perspectives about pediatric palliative care was explored following a review of the literature. An electronic search of Medline and CINAHL from 2004 to January 2009 resulted in 49 articles on 38 studies that sought parent perspectives on care provided by health professionals during palliation, end of life, and/or bereavement. Results were synthesized according to the dimensions of the Supportive Care Model. The model fit well with the research, indicating that the highest quality pediatric palliative care occurred when there was a fundamental valuing of the child and family, when individual human connections were made and continued throughout and following illness and death, when families felt empowered, when some aspects of care were performed for families, when families were supported in their search for meaning in their situation, and when the integrity of each individual and the family as a whole was preserved. The research also suggests that careful assessment of individual family preferences within each dimension is crucial. The model is proposed as a helpful guide for clinical practice with dying children and their families. K E Y W O R D S children end of life palliative care parents Supportive Care Model

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Identifying the attributes of threshold and higher level nursing practice for children's cancer and palliative care nurses: the views of children, their parents and other stakeholders

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Cited by 7 publications

References 9 publications

Adolescents' Lived Experiences While Hospitalized After Surgery for Ulcerative Colitis

Adolescents' Lived Experiences While Hospitalized After Surgery for Ulcerative Colitis

Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care

Exploring the Supportive Care Model as a Framework for Pediatric Palliative Care

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