Palliative care professional’s perceptions of barriers and challenges to accessing children’s hospice and palliative care services in South East London: A preliminary study

References

• Bekelman, J. E., Halpern, S. D., Blankart, C. R., Bynum, J. P., Cohen, J., Fowler, R., … Oosterveld-Vlug, M. (2016). Comparison of site of death, health care utilization, and hospital expenditures for patients dying with cancer in 7 developed countries. JAMA, 315(3), 272–283.
   PubMed Web of Science ®Google Scholar
• Bray, Y., & Goodyear-Smith, F. (2013). Patient and family perceptions of hospice services: ‘I knew they weren’t like hospitals’. Journal of Primary Health Care, 5(3), 206–213.
   PubMedGoogle Scholar
• Bridges, J., Nicholson, C., Maben, J., Pope, C., Flatley, M., Wilkinson, C., … Tziggili, M. (2013). Capacity for care: Meta‐ethnography of acute care nurses’ experiences of the nurse‐patient relationship. Journal of Advanced Nursing, 69(4), 760–772.
   PubMed Web of Science ®Google Scholar
• Connor, S. (Ed.). (2018). Hospice and palliative care: The essential guide (3rd ed.). New York, NY: Routledge.
   Google Scholar
• Dixon, J., King, D., Matosevic, T., Clark, M., & Knapp, M. (2015). Equity in the provision of palliative care in the UK: Review of evidence. Retrieved from www.pssru.ac.uk/publication-details.php?id=4962
   Google Scholar
• Downe-Wamboldt, B. (1992). Content analysis: Method, application and issues. Health Care for Women International, 13, 313–321.
   PubMedGoogle Scholar
• Eaton, N. (2008). ‘I don’t know how we coped before’: A study of respite care for child in the home and hospice. Journal of Clinical Nursing, 17(23), 3196–31204.
   PubMed Web of Science ®Google Scholar
• Friedman, S. L., Helm, D., & Woodman, A. C. (2012). Unique and universal barriers: Hospice care for aging adults with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 117(6), 509–532.
   PubMedGoogle Scholar
• Goldman, A., Hain, R., & Liben, S. (Eds.). (2012). Oxford Textbook of Palliative Care for Children (2nd ed.). New York, NY: Oxford University Press.
   Google Scholar
• Grinyer, A., Payne, S., & Barbarachild, Z. (2010). Issues of power, control and choice in children’s hospice respite care services: A qualitative study. International Journal of Palliative Nursing, 16(10), 505–510.
   PubMedGoogle Scholar
• Hain, R., Heckford, E., & McCulloch, R. (2012). Paediatric palliative medicine in the UK: Past, present, future. Archives of Disease in Childhood, 97, 381–384.
   PubMed Web of Science ®Google Scholar
• Heller, K. S., & Solomon, M. Z. (2005). Initiative for Pediatric Palliative Care (IPPC) Investigator Team. Continuity of care and caring: What matters to parents of children with life-threatening conditions. Journal of Pediatric Nursing, 20, 335–346.
   PubMedGoogle Scholar
• Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.
   PubMed Web of Science ®Google Scholar
• Knapp, C., & Thompson, L. (2012). Factors associated with perceived barriers to pediatric palliative care: A survey of pediatricians in Florida and California. Palliative Medicine, 26, 268–274.
   PubMed Web of Science ®Google Scholar
• Knapp, C., Madden, V., & Fowler-Kerry, S. (Eds). (2012). Pediatric palliatve care: Global perspectives. Dordrecht, Netherlands: Springer
   Google Scholar
• Malcolm, C., Forbat, L., Knighting, K., & Kearney, N. (2008). 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. Palliative Medicine, 22, 921–928.
   PubMed Web of Science ®Google Scholar
• Nahapetyan, L., Orpinas, P., Glass, A., & Song, X. (2017). Planning ahead: Using the theory of planned behavior to predict older adults’ intentions to use hospice if faced with terminal illness. Journal of Applied Gerontology, doi:10.1177/0733464817690678
   PubMedGoogle Scholar
• National Institute for Health and Care Excellence [NICE]. (2016). End of life care for infants, children and young people with life-limiting conditions: Planning and management. NICE guideline (NG61). Retrieved from: https://www.nice.org.uk/guidance/ng61
   Google Scholar
• ONS [Office for National Statistics]. (2011a). Neighbourhood statistics: New cross (ward). https://www.neighbourhood.statistics.gov.uk/dissemination/LeadAreaSearch.do?a=7&i=1001&m=0&s=1453132908766&enc=1&areaSearchText=new+cross&areaSearchType=14&extendedList=false&searchAreas (Accessed 24 June 2016).
   Google Scholar
• ONS [Office for National Statistics]. (2011b). Neighbourhood statistics: Peckham (ward). https://www.neighbourhood.statistics.gov.uk/dissemination/LeadSByASelectScotNI.do?a=7&c=peckham&d=14&i=1001×1002&m=0&r=1&s=1453135394453&enc=1&areaId=13689053&OAAreaId=6336933 (Accessed 29 June 2016).
   Google Scholar
• Pearson, C., Verne, J., Wells, C., Polato, G. M., Higginson, I. J., & Gao, W. (2017). Measuring geographical accessibility to palliative and end of life (PEoLC) related facilities: A comparative study in an area with well-developed specialist palliative care (SPC) provision. BMC Palliative Care, 16(1), 14.
   PubMedGoogle Scholar
• QSR International Pty Ltd (2015). NVivo qualitative data analysis software, Version 11.
   Google Scholar
• Rosenwax, L., Spilsbury, K., McNamara, B. A., & Semmens, J. B. (2016). A retrospective population based cohort study of access to specialist palliative care in the last year of life: Who is still missing out a decade on? BMC Palliative Care, 15(1), 46.
   PubMedGoogle Scholar
• Siden, H., Miller, M., Straatman, L., Omesi, L., Tucker, T., & Collins, J. J. (2008). A report on location of death in paediatric palliative care between home, hospice and hospital. Palliative Medicine, 22, 831–834.
   PubMed Web of Science ®Google Scholar
• Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., & Mor, V. (2004). Family perspectives on end-of-life care at the last place of care. JAMA, 291(1), 88–93.
   PubMed Web of Science ®Google Scholar
• Trust for London. (2015a). London’s poverty profile: Lewisham. http://www.londonspovertyprofile.org.uk/indicators/boroughs/lewisham/ (Accessed 28 June 2016).
   Google Scholar
• Trust for London. (2015b). London’s poverty profile: Southwark. http://www.londonspovertyprofile.org.uk/indicators/boroughs/southwark/ (Accessed 28 June 2016).
   Google Scholar
• Twamley, K., Craig, F., Kelly, P., Hollowell, D. R., Mendoza, P., & Bluebond-Langner, M. (2014). Underlying barriers to referral to paediatric palliative care services: Knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom. Journal of Child Health Care, 18, 19–30.
   PubMed Web of Science ®Google Scholar
• Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences, 15(3), 398–405.
   PubMed Web of Science ®Google Scholar
• Wentlandt, K., Krzyzanowska, M. K., Swami, N., Rodin, G. M., Le, L. W., & Zimmermann, C. (2012). Referral practices of oncologists to specialized palliative care. Journal of clinical Oncology, 30(35), 4380–4386.
   PubMed Web of Science ®Google Scholar
• Yantzi, N. M., Rosenberg, M. W., & NcKeever, P. (2007). Getting out of the house: Challenges mothers face when their children have long-term special needs. Health and Social Care in the Community, 15, 45–55.
   PubMed Web of Science ®Google Scholar