Challenging symptoms in children with rare life-limiting conditions: Findings from a prospective diary and interview study with families

Journal article

Malcolm, Cari, Hain, Richard, Gibson, Faith, Adams, Sally, Anderson, G. and Forbat, L.. (2012). Challenging symptoms in children with rare life-limiting conditions: Findings from a prospective diary and interview study with families. Acta Paediatrica. 101(9), pp. 985 - 992. https://doi.org/10.1111/j.1651-2227.2012.02680.x
AuthorsMalcolm, Cari, Hain, Richard, Gibson, Faith, Adams, Sally, Anderson, G. and Forbat, L.
Abstract

Aim:  The aim was to describe the nature, frequency, severity and management challenges of symptoms in children with two rare life-limiting conditions [Mucopolysaccharide ( MPS ) and Batten disease].

Year2012
JournalActa Paediatrica
Journal citation101 (9), pp. 985 - 992
PublisherWiley Blackwell Publishing
ISSN0803-5253
Digital Object Identifier (DOI)https://doi.org/10.1111/j.1651-2227.2012.02680.x
Scopus EID2-s2.0-84864702485
Page range985 - 992
Research GroupSchool of Nursing, Midwifery and Paramedicine
Publisher's version
File Access Level
Controlled
Place of publicationUnited Kingdom
Permalink -

https://acuresearchbank.acu.edu.au/item/8q1v2/challenging-symptoms-in-children-with-rare-life-limiting-conditions-findings-from-a-prospective-diary-and-interview-study-with-families

Log in to edit

Restricted files

Publisher's version

  • 129
    total views
  • 0
    total downloads
  • 5
    views this month
  • 0
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Reducing time in acute hospitals : A stepped-wedge randomised control trial of a specialist palliative care intervention in residential care homes
Forbat, Liz, Liu, Wai-Man, Koerner, Jane, Lam, Lawrence, Samara, Juliane, Chapman, Michael and Johnston, Nikki. (2020). Reducing time in acute hospitals : A stepped-wedge randomised control trial of a specialist palliative care intervention in residential care homes. Palliative Medicine. 34(5), pp. 571-579. https://doi.org/10.1177/0269216319891077
Improved quality of death and dying in care homes : A palliative care stepped wedge randomized control trial in Australia
Liu, Wai-Man, Koerner, Jane, Lam, Lawrence, Johnston, Nikki, Samara, Juliane, Chapman, Michael and Forbat, Liz. (2020). Improved quality of death and dying in care homes : A palliative care stepped wedge randomized control trial in Australia. Journal of the American Geriatrics Society. 68(2), pp. 305-312. https://doi.org/10.1111/jgs.16192
Defining 'specialist palliative care' : Findings from a Delphi study of clinicians
Forbat, Liz, Johnston, Nikki and Mitchell, Imogen. (2020). Defining 'specialist palliative care' : Findings from a Delphi study of clinicians. Australian Health Review. 44(2), pp. 313-321. https://doi.org/10.1071/AH18198
What can systemic psychotherapy offer clinical practice and public debates on assisted dying?
Forbat, Liz. (2018). What can systemic psychotherapy offer clinical practice and public debates on assisted dying? Journal of Family Therapy. 40(3), pp. 413-427. https://doi.org/10.1111/1467-6427.12171
Family meetings in inpatient specialist palliative care : A mechanism to convey empathy
Forbat, Liz, François, Karemah, O'Callaghan, Lynne and Kulikowski, Julie. (2018). Family meetings in inpatient specialist palliative care : A mechanism to convey empathy. Journal of Pain and Symptom Management. 55(5), pp. 1253-1259. https://doi.org/10.1016/j.jpainsymman.2018.01.020
Seeking, accepting and declining help for emotional distress in cancer : A systematic review and thematic synthesis of qualitative evidence
Carolan, C. M., Smith, A., Davies, G. R. and Forbat, L.. (2018). Seeking, accepting and declining help for emotional distress in cancer : A systematic review and thematic synthesis of qualitative evidence. European Journal of Cancer Care. 27(2), p. e12720. https://doi.org/10.1111/ecc.12720
Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information : A qualitative research study
Gibson, Faith, Kumpunen, Stephanie, Bryan, Gemma and Forbat, Liz. (2018). Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information : A qualitative research study. International Journal of Nursing Studies. 83, pp. 91-102. https://doi.org/10.1016/j.ijnurstu.2018.04.008
Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package)
Elizabeth Forbat, Rowena Robinson, Rachel Bilton-Simek, Karemah François, Marsha Lewis and Erna Haraldsdottir. (2018). Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package). Palliative Medicine. 32(2), pp. 581-588. https://doi.org/10.1177/0269216317712849
Couple therapy following prostate cancer surgery: A manual to guide treatment
Forbat, Liz, Robertson, Jane and McNamee, Phillip. (2018). Couple therapy following prostate cancer surgery: A manual to guide treatment. Journal of Family Therapy. 40(S1), pp. S86 - S110. https://doi.org/10.1111/1467-6427.12129
The nature of conflict in palliative care: A qualitative exploration of the experiences of staff and family members
François, Karemah, Lobb, Elizabeth, Barclay, Sarah and Forbat, Liz. (2017). The nature of conflict in palliative care: A qualitative exploration of the experiences of staff and family members. Patient Education and Counseling. 100(8), pp. 1459 - 1465. https://doi.org/10.1016/j.pec.2017.02.019
Training paediatric healthcare staff in recognising, understanding and managing conflict with patients and families: Findings from a survey on immediate and 6-month impact
Forbat, Liz, Simons, Jean, Sayer, Charlotte, Davies, Megan and Barclay, Sarah. (2017). Training paediatric healthcare staff in recognising, understanding and managing conflict with patients and families: Findings from a survey on immediate and 6-month impact. Archives of Disease in Childhood. 102(3), pp. 250 - 254. https://doi.org/10.1136/archdischild-2016-310737
How and why are subcutaneous fluids administered in an advanced illness population: A systematic review
Forbat, Liz, Kunicki, Natalie, Chapman, Michael and Lovell, Clare. (2017). How and why are subcutaneous fluids administered in an advanced illness population: A systematic review. Journal of Clinical Nursing. 26(43747), pp. 1204 - 1216. https://doi.org/10.1111/jocn.13683
A systematic review and narrative summary of family-based smoking cessation interventions to help adults quit smoking
Hubbard, Gill, Gorley, Trish, Ozakinci, Gozde, Polson, Rob and Forbat, Liz. (2016). A systematic review and narrative summary of family-based smoking cessation interventions to help adults quit smoking. BMC Family Practice. 17(73), pp. 1 - 20. https://doi.org/10.1186/s12875-016-0457-4
Supporting the provision of palliative care in the home environment: A proof-of-concept single-arm trial of a PalliativE Carers Education Package (PrECEPt)
Forbat, Elizabeth, Haraldsdottir, Erna, Lewis, Marsha and Hepburn, Ken. (2016). Supporting the provision of palliative care in the home environment: A proof-of-concept single-arm trial of a PalliativE Carers Education Package (PrECEPt). BMJ Open. https://doi.org/10.1136/bmjopen-2016-012681
Avoiding costly hospitalisation at end of life: findings from a specialist palliative care pilot in residential care for older adults
Chapman, Michael, Johnston, Nikki, Lovell, Clare, Forbat, Liz and Liu, Wai-Man. (2016). Avoiding costly hospitalisation at end of life: findings from a specialist palliative care pilot in residential care for older adults. BMJ Supportive and Palliative Care. https://doi.org/10.1136/bmjspcare-2015-001071
Normalising and planning for death in residential care: Findings from a qualitative focus group study of a specialist palliative care intervention
Johnston, Nikki, Lovell, Clare, Liu, Wai-Man, Chapman, Michael and Forbat, Liz. (2016). Normalising and planning for death in residential care: Findings from a qualitative focus group study of a specialist palliative care intervention. BMJ Supportive and Palliative Care. https://doi.org/10.1136/bmjspcare-2016-001127
Conflict in a paediatric hospital: A prospective mixed-method study
Forbat, Liz, Sayer, Charlotte, McNamee, Phillip, Menson, Esse and Barclay, Sarah. (2016). Conflict in a paediatric hospital: A prospective mixed-method study. Archives of Disease in Childhood. 101(1), pp. 23 - 27. https://doi.org/10.1136/archdischild-2015-308814
School-based brief psycho-educational intervention to raise adolescent cancer awareness and address barriers to medical help-seeking about cancer: A cluster randomised controlled trial
Hubbard, Gill, Stoddart, Iona, Forbat, Liz, Neal, Richard D., O'Carroll, Ronan E., Haw, Sally, Rauchhaus, Petra and Kyle, Richard G.. (2016). School-based brief psycho-educational intervention to raise adolescent cancer awareness and address barriers to medical help-seeking about cancer: A cluster randomised controlled trial. Psycho-Oncology. https://doi.org/10.1002/pon.4001
Service user involvement in research may lead to contrary rather than collaborative accounts: Findings from a qualitative palliative care study
Forbat, Elizabeth and Hubbard, Gill. (2016). Service user involvement in research may lead to contrary rather than collaborative accounts: Findings from a qualitative palliative care study. Journal of Advanced Nursing. https://doi.org/10.1111/jan.12865
Developing the DESCARTE Model
Carolan, Clare M., Forbat, Elizabeth and Smith, Annetta. (2016). Developing the DESCARTE Model. Qualitative Health Research. https://doi.org/10.1177/1049732315602488
Conflict escalation in paediatric services: Findings from a qualitative study
Forbat, Elizabeth, Teuten, Bea and Barclay, Sarah. (2015). Conflict escalation in paediatric services: Findings from a qualitative study. Archives of Disease in Childhood. 100(8), pp. 769 - 773. https://doi.org/10.1136/archdischild-2014-307780
Co-constructing sexual recovery after prostate cancer: A qualitative study with couples
Kelly, Daniel, Forbat, Liz, Marshall-Lucette, Sylvie and White, Isabel. (2015). Co-constructing sexual recovery after prostate cancer: A qualitative study with couples. Translational Andrology and Urology. 4(2), pp. 131 - 138. https://doi.org/10.3978/j.issn.2223-4683.2015.04.05
Conceptualising psychological distress in families in palliative care: Findings from a systematic review
Carolan, Clare M., Smith, Annetta and Forbat, Elizabeth. (2015). Conceptualising psychological distress in families in palliative care: Findings from a systematic review. Palliative Medicine. 29(7), pp. 605 - 632. https://doi.org/10.1177/0269216315575680
What clinicians think of manualized psychotherapy interventions: Findings from a systematic review
Forbat, Elizabeth, Black, Lynne and Dulgar, Kerem. (2015). What clinicians think of manualized psychotherapy interventions: Findings from a systematic review. Journal of Family Therapy. 37(4), pp. 409 - 428. https://doi.org/10.1111/1467-6427.12036
Scottish adolescents' sun-related behaviours, tanning attitudes and associations with skin cancer awareness: A cross-sectional study
Kyle, Richard G., MacMillan, Iona, Forbat, Liz, Neal, Richard D., O'Carroll, Ronan E., Haw, Sally and Hubbard, Gill. (2014). Scottish adolescents' sun-related behaviours, tanning attitudes and associations with skin cancer awareness: A cross-sectional study. BMJ Open. 4(5), pp. 1 - 10. https://doi.org/10.1136/bmjopen-2014-005137
The role of interpersonal relationships in men's attendance in primary care: Qualitative findings in a cohort of men with prostate cancer
Forbat, Liz, Place, Morag, Hubbard, Gill, Leung, Hing and Kelly, Daniel. (2014). The role of interpersonal relationships in men's attendance in primary care: Qualitative findings in a cohort of men with prostate cancer. Supportive Care in Cancer. 22(2), pp. 409 - 415. https://doi.org/10.1007/s00520-013-1989-y
Response to: prostate cancer in Scotland: does geography matter? An analysis of incidence, disease characteristics and survival between urban and rural areas by Karina A Laing et al.
Forbat, Liz, Leung, H. Y. and Reid, S. L.. (2014). Response to: prostate cancer in Scotland: does geography matter? An analysis of incidence, disease characteristics and survival between urban and rural areas by Karina A Laing et al. Journal of Clinical Urology. 7(6), pp. 427 - 427. https://doi.org/10.1177/2051415814549348
Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: A cross-sectional study
Hubbard, Gill, MacMillan, Iona, Canny, Anne, Forbat, Liz, Neal, Richard D., O'Carroll, Ronan E., Haw, Sally and Kyle, Richard G.. (2014). Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: A cross-sectional study. BMC Public Health. 14(1117), pp. 1 - 12. https://doi.org/10.1186/1471-2458-14-1117
Exploring the feasibility and acceptability of couple-based psychosexual support following prostate cancer surgery: Study protocol for a pilot randomised controlled trial
Robertson, Jane M., Molloy, Gerard M., Bollina, Prasad R., Kelly, Daniel M., McNeill, S. Alan and Forbat, Elizabeth. (2014). Exploring the feasibility and acceptability of couple-based psychosexual support following prostate cancer surgery: Study protocol for a pilot randomised controlled trial. Trials. 15(1), pp. 1 - 10. https://doi.org/10.1186/1745-6215-15-183
Observations of professional-patient relationships: A mixed-methods study exploring whether familiarity is a condition for nurses' provision of psychosocial support
Hill, Hazel, Paley, John and Forbat, Elizabeth. (2014). Observations of professional-patient relationships: A mixed-methods study exploring whether familiarity is a condition for nurses' provision of psychosocial support. Palliative Medicine. 28(3), pp. 256 - 263. https://doi.org/10.1177/0269216313499960
A relational understanding of sibling experiences of children with rare life-limiting conditions: Findings from a qualitative study
Malcolm, Cari, Gibson, Faith, Adams, Sally, Anderson, Gillian and Forbat, Elizabeth. (2014). A relational understanding of sibling experiences of children with rare life-limiting conditions: Findings from a qualitative study. Journal of Child Health Care. 18(3), pp. 230 - 240. https://doi.org/10.1177/1367493513485825
Priority setting in Indigenous health : Assessing priority setting process and criteria that should guide the health system to improve Indigenous Australian health
Otim, Michael, Kelaher, Margaret, Anderson, Ian and Doran, Chris. (2014). Priority setting in Indigenous health : Assessing priority setting process and criteria that should guide the health system to improve Indigenous Australian health. International Journal for Equity in Health. 13(45), pp. 1 - 12. https://doi.org/10.1186/1475-9276-13-45
Relational mechanisms and psychological outcomes in couples affected by breast cancer: A systematic narrative analysis of the literature
Hubbard, Gill, Menzies, Sandra, Flynn, Pamela, Adams, S, Haseen, Farhana, Thomas, Ian, Scanlon, Karen, Reed, Liz and Forbat, Liz. (2013). Relational mechanisms and psychological outcomes in couples affected by breast cancer: A systematic narrative analysis of the literature. BMJ Supportive and Palliative Care. 3(3), pp. 309 - 317. https://doi.org/10.1136/bmjspcare-2012-000274
Adolescents' awareness of cancer risk factors and associations with health-related behaviours
Kyle, Richard G., Nicoll, Avril, Forbat, Elizabeth and Hubbard, Gill. (2013). Adolescents' awareness of cancer risk factors and associations with health-related behaviours. Health Education Research. 28(5), pp. 816 - 827. https://doi.org/10.1093/her/cyt055
Adolescent Cancer Education (ACE) to increase adolescent and parent cancer awareness and communication: Study protocol for a cluster randomised controlled trial
Kyle, Richard G., MacMillan, Iona, Rauchhaus, Petra, O'Carroll, Ronan E., Neal, Richard D., Forbat, Liz, Haw, Sally and Hubbard, Gill. (2013). Adolescent Cancer Education (ACE) to increase adolescent and parent cancer awareness and communication: Study protocol for a cluster randomised controlled trial. Trials. 14(1), pp. 1 - 10. https://doi.org/10.1186/1745-6215-14-286
A cohort study reporting clinical risk factors and individual risk perceptions of prostate cancer: Implications for PSA testing
Forbat, Liz, Place, Morag, Kelly, Daniel, Hubbard, Gill, Boyd, Kenny, Howie, Kate and Leung, Hing Y.. (2013). A cohort study reporting clinical risk factors and individual risk perceptions of prostate cancer: Implications for PSA testing. BJU International. 111(3), pp. 389 - 395. https://doi.org/10.1111/j.1464-410X.2012.11316.x
Cancer awareness among adolescents in Britain: A cross-sectional study
Kyle, Richard G., Forbat, Liz and Hubbard, Gill. (2012). Cancer awareness among adolescents in Britain: A cross-sectional study. BMC Public Health. 12(580), pp. 1 - 11. https://doi.org/10.1186/1471-2458-12-580
Cancer as biographical disruption: Constructions of living with cancer
Hubbard, Gill and Forbat, Liz. (2012). Cancer as biographical disruption: Constructions of living with cancer. Supportive Care in Cancer. 20(9), pp. 2033 - 2040. https://doi.org/10.1007/s00520-011-1311-9
Clinical implications for supporting caregivers at the end-of-life: Findings and from a qualitative study
Forbat, Liz, McManus, Elaine and Haraldsdottir, Erna. (2012). Clinical implications for supporting caregivers at the end-of-life: Findings and from a qualitative study. Contemporary Family Therapy. 34(2), pp. 282 - 292. https://doi.org/10.1007/s10591-012-9194-6
The ripple effect in community nursing
Forbat, Liz. (2011). The ripple effect in community nursing. British journal of community nursing. 16(5), pp. 213 - 213. https://doi.org/10.12968/bjcn.2011.16.5.213
The supportive care needs of carers of people affected by cancer stationed in British Forces Germany
Kidd, Lisa, Forbat, Liz, Kochen, Michael and Kearney, Nora. (2011). The supportive care needs of carers of people affected by cancer stationed in British Forces Germany. European Journal of Cancer Care. 20(2), pp. 212 - 219. https://doi.org/10.1111/j.1365-2354.2009.01157.x
Challenging symptom profiles of life-limiting conditions in children: A survey of care professionals and families
Malcolm, Cari, Forbat, Elizabeth, Anderson, Gillian, Gibson, Faith and Hain, Richard. (2011). Challenging symptom profiles of life-limiting conditions in children: A survey of care professionals and families. Palliative Medicine. 25(4), pp. 357 - 364. https://doi.org/10.1177/0269216310391346
The importance of relationships in the experience of cancer: A re-working of the policy ideal of the whole-systems approach
Illingworth, Nicola, Forbat, Liz, Hubbard, Gill and Kearney, Nora. (2010). The importance of relationships in the experience of cancer: A re-working of the policy ideal of the whole-systems approach. European Journal of Oncology Nursing (EJON). 14(1), pp. 23 - 28. https://doi.org/10.1016/j.ejon.2009.06.006
Adults with intellectual disabilities affected by cancer: Critical challenges for the involvement agenda
Forbat, Liz and McCann, L.. (2010). Adults with intellectual disabilities affected by cancer: Critical challenges for the involvement agenda. European Journal of Cancer Care. 19(1), pp. 91 - 97. https://doi.org/10.1111/j.1365-2354.2008.00979.x
Treatment decision-making in cancer care: The role of the carer
Hubbard, Gill, Illingworth, Nicola, Rowa-Dewar, Neneh, Forbat, Liz and Kearney, Nora. (2010). Treatment decision-making in cancer care: The role of the carer. Journal of Clinical Nursing. 19(13-14), pp. 2023 - 2031. https://doi.org/10.1111/j.1365-2702.2009.03062.x
Men with prostate cancer over the first year of illness: Their experiences as biographical disruption
Cayless, Sandi, Forbat, Liz, Illingworth, Nicola, Hubbard, Gill and Kearney, Nora. (2010). Men with prostate cancer over the first year of illness: Their experiences as biographical disruption. Supportive Care in Cancer. 18(1), pp. 11 - 19. https://doi.org/10.1007/s00520-009-0624-4
Talking about care : Two sides to the story
Forbat, Liz. (2005). Talking about care : Two sides to the story Policy Press.
The professionalisation of informal carers?
Forbat, Liz and Henderson, Jeannete. (2003). The professionalisation of informal carers? In In Davies, Celia (Ed.). The future health workforce pp. 49-67 Palgrave Macmillan.