Having a Child Diagnosed With Cancer: An Assessment of Values From the Mother's Viewpoint
PedPal Lit
The purpose of this qualitative study was to explore the mother's experience of having a child diagnosed with cancer. Semistructured interview questions, focused specifically on values, provided the foundation for the study. Each of the 9 participants was a mother of a child diagnosed with cancer 30 days prior to participation. Subsequent data were collected from each participant 6 months after the original interview. Using a phenomenological approach for data collection and analyses, themes were uncovered from each interview data set. The initial interviews identified 3 themes: (1) problems accessing the health care system, (2) challenges of family dynamics, and (3) support structures. Each theme persisted in the second interview, with an additional theme, (4) future plans, uncovered. Data from this study may provide guidance for health care professionals who provide care to these children and their families. The importance of maintaining communication and keeping promises cannot be overstated.
2005
Ward-Smith P; Kirk S; Hetherington M; Hubble CL
Journal Of Pediatric Oncology Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1043454205281682" target="_blank" rel="noreferrer">10.1177/1043454205281682</a>
Parent or nurse? The experience of being the parent of a technology-dependent child
PedPal Lit
2005
Kirk S; Glendinning C; Callery P
Journal Of Advanced Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2648.2005.03522.x" target="_blank" rel="noreferrer">10.1111/j.1365-2648.2005.03522.x</a>
What we know (and do not know) about raising children with complex continuing care needs
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
2008-03
Carnevale FA; Rehm RS; Kirk S; McKeever P
Journal Of Child Health Care
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</a>
Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: A qualitative study
Background:Transition to adult services and adulthood is now a prospect for young people with life-limiting conditions requiring palliative care. Little is known about their transition experiences or how children's hospices can support a young adult population during/following transition.Aims:(1) To examine how young people with life-limiting conditions and their parents experience transition. (2) To identify families' and hospice staff's perceptions of family support needs during transition. (3) To identify the implications for children's hospices.Design:Qualitative study using in-depth, semi-structured interviews. Analysis used a grounded theory approach.Setting/participants:A total of 39 participants recruited from one children's hospice in the United Kingdom.Results:Transition planning was absent or poorly coordinated; for most families, there were no equivalent adult health/social services. Consequently, it was a time of uncertainty and anxiety for families. Moving to a young adult unit was a positive experience for young people as the building/support model recognised their adult status. However, they had unmet needs for emotional support and accessing information/services to realise their aspirations. Parents had unmet emotional needs and were unclear of support available once their children reached adulthood. Staff identified training needs in relation to working with adults, providing emotional support and acting as an advocate/key worker.Conclusions:Providing an appropriate building is only one aspect of developing support for young adults. A different model of support is needed, one which promotes young people's independence and provides emotional support while continuing to support parents and siblings. Hospices could play a role in transition support and coordination.
2013-10
Kirk S; Fraser C
Palliative Medicine
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216313507626" target="_blank" rel="noreferrer">10.1177/0269216313507626</a>