Skip to main content
Erschienen in: Supportive Care in Cancer 10/2012

01.10.2012 | Original Article

Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality

verfasst von: Petrea Cornwell, Bronwyn Dicks, Jennifer Fleming, Terry P. Haines, Sarah Olson

Erschienen in: Supportive Care in Cancer | Ausgabe 10/2012

Einloggen, um Zugang zu erhalten

Abstract

Objective

Non-malignant brain tumours have the potential to considerably affect functional outcomes and quality of life, with an associated significant burden for carers. There is a lack of knowledge about the care and support needs of patients with a brain tumour and their carers, in the early period following discharge from initial hospitalisation. The purpose of this study was to understand the early post-discharge support services and care requirements of individuals with brain tumour and their family caregivers between short-term (2 weeks) post-discharge and medium-term (3 months) following hospital discharge.

Methods

A qualitative approach was utilised with semi-structured interviews of nine patients with brain tumour and five of their family caregivers. Thematic content analysis was used to generate in-depth descriptions of the participant's life experiences post-discharge following neurosurgical intervention.

Results

The overarching theme emerging from the data analysis related to patients and carers ‘establishing a new reality’ underpinned by three primary categories: (1) coping with available supports, (2) adjusting to routines and relationships and (3) emotional responses.

Conclusion

Participants had a tendency to rely on informal support networks but identified unmet information and support needs particularly for carers. These findings highlight the need for more efficient and effective discharge preparation, referral to services and supports, provision of timely information and support for family caregivers of those with brain tumour.
Anhänge
Nur mit Berechtigung zugänglich
Literatur
1.
Zurück zum Zitat Australian Institute of Health and Welfare (AIHW) (2010) Australian cancer incidence and mortality (ACIM). AIHW, Canberra Australian Institute of Health and Welfare (AIHW) (2010) Australian cancer incidence and mortality (ACIM). AIHW, Canberra
2.
Zurück zum Zitat Blanchard CG, Albrecht TL, Ruckdeschel JC (1997) The crisis of cancer: psychological impact on family caregivers. Oncol 11:189–194 Blanchard CG, Albrecht TL, Ruckdeschel JC (1997) The crisis of cancer: psychological impact on family caregivers. Oncol 11:189–194
3.
Zurück zum Zitat Britten N (2006) Qualitative interviews. In: Pope C, Mays (eds) Qualitative research in health care, 3rd edn. Blackwell Publishing, Boston, pp 12–20CrossRef Britten N (2006) Qualitative interviews. In: Pope C, Mays (eds) Qualitative research in health care, 3rd edn. Blackwell Publishing, Boston, pp 12–20CrossRef
4.
Zurück zum Zitat Cancer Brain Tumor Registry of the United States (2011) CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2004–2007. Central Brain Tumor Registry of the United States, Hinsdale, IL. www.cbtrus.org. Accessed on 11 Oct 2011 Cancer Brain Tumor Registry of the United States (2011) CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2004–2007. Central Brain Tumor Registry of the United States, Hinsdale, IL. www.​cbtrus.​org. Accessed on 11 Oct 2011
5.
Zurück zum Zitat Cornwell P, Fleming J, Fisher A, Kendall M, Ownsworth T, Turner B (2009) Supporting the needs of young adults with acquired brain injury during transition from hospital to home: the Queensland service provider perspective. Brain Imp 10(3):325–340CrossRef Cornwell P, Fleming J, Fisher A, Kendall M, Ownsworth T, Turner B (2009) Supporting the needs of young adults with acquired brain injury during transition from hospital to home: the Queensland service provider perspective. Brain Imp 10(3):325–340CrossRef
6.
Zurück zum Zitat Creswell JW (2007) Qualitative inquiry and research design: choosing among five approaches. Sage Publications, California Creswell JW (2007) Qualitative inquiry and research design: choosing among five approaches. Sage Publications, California
7.
Zurück zum Zitat Curren JR (2001) Support needs of brain tumour patients and their carers: the place of a telephone service. J Palliat Nurs 7(7):331–337 Curren JR (2001) Support needs of brain tumour patients and their carers: the place of a telephone service. J Palliat Nurs 7(7):331–337
8.
Zurück zum Zitat Davis FG, Kupelian V, Freels S, McCarthy B, Surawicz T (2001) Prevalence estimates for primary brain tumors in the United States by behavior and major histology groups. Neuro-Oncol 3:152–158PubMed Davis FG, Kupelian V, Freels S, McCarthy B, Surawicz T (2001) Prevalence estimates for primary brain tumors in the United States by behavior and major histology groups. Neuro-Oncol 3:152–158PubMed
9.
Zurück zum Zitat Denzin NK, Lincoln YS (2008) Collecting and interpreting qualitative materials, 3rd edn. Sage Publications, California Denzin NK, Lincoln YS (2008) Collecting and interpreting qualitative materials, 3rd edn. Sage Publications, California
10.
Zurück zum Zitat Edvardsson T, Ahlstrom G (2005) Illness-related problems and coping among persons with low-grade glioma. Psycho-Oncology 14:728–737PubMedCrossRef Edvardsson T, Ahlstrom G (2005) Illness-related problems and coping among persons with low-grade glioma. Psycho-Oncology 14:728–737PubMedCrossRef
11.
Zurück zum Zitat Edvardsson T, Ahlstrom G (2008) Being the next of kin of a person with a low-grade glioma. Psycho-Oncology 17:584–591PubMedCrossRef Edvardsson T, Ahlstrom G (2008) Being the next of kin of a person with a low-grade glioma. Psycho-Oncology 17:584–591PubMedCrossRef
12.
Zurück zum Zitat Ezzy D (2002) Qualitative analysis: practice and innovation. Allen & Unwin, Sydney Ezzy D (2002) Qualitative analysis: practice and innovation. Allen & Unwin, Sydney
13.
Zurück zum Zitat Ferlay J, Shin HR, Forman D, Mathers C, Parkin DM (2008) GLOBOCAN v1.2, cancer incidence and mortality worldwide: IARC CancerBase No. 10 [Internet]. 2010. International Agency for Research on Cancer, Lyon, France. http://globocan.iarc.fr. Accessed on 11 Oct 2011 Ferlay J, Shin HR, Forman D, Mathers C, Parkin DM (2008) GLOBOCAN v1.2, cancer incidence and mortality worldwide: IARC CancerBase No. 10 [Internet]. 2010. International Agency for Research on Cancer, Lyon, France. http://​globocan.​iarc.​fr. Accessed on 11 Oct 2011
14.
Zurück zum Zitat Fox S, Lantz C (1998) The brain tumor experience and quality of life: a qualitative study. J Neurosci Nurs 30(1):245–252PubMedCrossRef Fox S, Lantz C (1998) The brain tumor experience and quality of life: a qualitative study. J Neurosci Nurs 30(1):245–252PubMedCrossRef
15.
Zurück zum Zitat Germino BB, Fife BL, Funk SG (1995) Cancer and the partner relationship: what is its meaning? Semin Oncol Nurs 11:43–50PubMedCrossRef Germino BB, Fife BL, Funk SG (1995) Cancer and the partner relationship: what is its meaning? Semin Oncol Nurs 11:43–50PubMedCrossRef
16.
Zurück zum Zitat Giordana MT, Clara E (2006) Functional rehabilitation and brain tumour patients: a review of outcome. Neurol Sci 27(4):240–244PubMedCrossRef Giordana MT, Clara E (2006) Functional rehabilitation and brain tumour patients: a review of outcome. Neurol Sci 27(4):240–244PubMedCrossRef
17.
Zurück zum Zitat Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurs Ed Today 24(2):105–112CrossRef Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurs Ed Today 24(2):105–112CrossRef
18.
Zurück zum Zitat Halkett GKB, Lobb EA, Oldham L, Nowak AK (2010) The information and support needs of patients diagnosed with high grade glioma. Patient Educ Couns 79:112–119PubMedCrossRef Halkett GKB, Lobb EA, Oldham L, Nowak AK (2010) The information and support needs of patients diagnosed with high grade glioma. Patient Educ Couns 79:112–119PubMedCrossRef
19.
Zurück zum Zitat Huang ME, Wartella JE, Kreutzer JS, Broaddus W, Lyckholm L (2001) Functional outcomes and quality of life in patients with brain tumours: a review of the literature. Brain Inj 15(10):843–856PubMedCrossRef Huang ME, Wartella JE, Kreutzer JS, Broaddus W, Lyckholm L (2001) Functional outcomes and quality of life in patients with brain tumours: a review of the literature. Brain Inj 15(10):843–856PubMedCrossRef
20.
Zurück zum Zitat Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14(11):1094–1103PubMedCrossRef Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14(11):1094–1103PubMedCrossRef
21.
Zurück zum Zitat Liamputtong P (2009) Qualitative research methods, 3rd edn. Oxford University Press, Hong Kong Liamputtong P (2009) Qualitative research methods, 3rd edn. Oxford University Press, Hong Kong
22.
Zurück zum Zitat Lipsman N, Skanda A, Kimmelman J, Bernstein M (2007) The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study. BMC Palliat Care 6(7):1–10 Lipsman N, Skanda A, Kimmelman J, Bernstein M (2007) The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study. BMC Palliat Care 6(7):1–10
23.
Zurück zum Zitat Litofsky NS, Farace E, Anderson F, Meyers CA, Huang W, Laws ER (2004) Glioma outcomes project investigators. Depression in patients with high-grade glioma: Results of the glioma outcomes project. Neurosurg 54(2):358–367CrossRef Litofsky NS, Farace E, Anderson F, Meyers CA, Huang W, Laws ER (2004) Glioma outcomes project investigators. Depression in patients with high-grade glioma: Results of the glioma outcomes project. Neurosurg 54(2):358–367CrossRef
24.
Zurück zum Zitat Lucas MR (2010) Psychosocial implication for the patient with a high-grade glioma. J Neurosci Nurs 42(2):104–108PubMedCrossRef Lucas MR (2010) Psychosocial implication for the patient with a high-grade glioma. J Neurosci Nurs 42(2):104–108PubMedCrossRef
25.
Zurück zum Zitat McConigley R, Halkett G, Lobb E, Nowak A (2010) Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 24(5):473–479PubMedCrossRef McConigley R, Halkett G, Lobb E, Nowak A (2010) Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 24(5):473–479PubMedCrossRef
26.
Zurück zum Zitat Molassiotis A, Wilson B, Brunton L, Chaudhary H, Gattamaneni R, McBain C (2010) Symptom experience in patients with primary brain tumours: a longitudinal exploratory study. Eur J Oncol Nurs 14:410–416PubMedCrossRef Molassiotis A, Wilson B, Brunton L, Chaudhary H, Gattamaneni R, McBain C (2010) Symptom experience in patients with primary brain tumours: a longitudinal exploratory study. Eur J Oncol Nurs 14:410–416PubMedCrossRef
27.
Zurück zum Zitat Ownsworth T, Hawkes AL, Chambers S, Walker DG, Shum D (2010) Applying a biopsychosocial perspective to investigate factors related to emotional adjustment and quality of life for individuals with brain tumour. Brain Imp 11(3):270–280CrossRef Ownsworth T, Hawkes AL, Chambers S, Walker DG, Shum D (2010) Applying a biopsychosocial perspective to investigate factors related to emotional adjustment and quality of life for individuals with brain tumour. Brain Imp 11(3):270–280CrossRef
28.
Zurück zum Zitat Ownsworth T, Chambers S, Hawkes A, Walker D, Shum D (2011) Making sense of brain tumour: a qualitative investigation of personal and social processes of adjustment. Neuropsych Rehab 21(1):117–137CrossRef Ownsworth T, Chambers S, Hawkes A, Walker D, Shum D (2011) Making sense of brain tumour: a qualitative investigation of personal and social processes of adjustment. Neuropsych Rehab 21(1):117–137CrossRef
29.
Zurück zum Zitat Patton M (2002) Qualitative research and evaluation methods, 3rd edn. Sage Publications Inc., California Patton M (2002) Qualitative research and evaluation methods, 3rd edn. Sage Publications Inc., California
30.
Zurück zum Zitat Ritchie J, Lewis J (2003) Qualitative research practice: a guide for social science students and researchers. Thousand Oaks Sage Publications Inc., London Ritchie J, Lewis J (2003) Qualitative research practice: a guide for social science students and researchers. Thousand Oaks Sage Publications Inc., London
31.
Zurück zum Zitat Rosenblum ML, Kalkanis S, Goldberg W, Rock J, Mikkelsen T, Rerner S, Whitehouse S, Nerenze D (2009) Odyssey of hope: a physician's guide to communication with brain tumor patients across the continuum of care. J Neurooncol 92(3):241–251PubMedCrossRef Rosenblum ML, Kalkanis S, Goldberg W, Rock J, Mikkelsen T, Rerner S, Whitehouse S, Nerenze D (2009) Odyssey of hope: a physician's guide to communication with brain tumor patients across the continuum of care. J Neurooncol 92(3):241–251PubMedCrossRef
32.
Zurück zum Zitat Rozmovits L, Khu KJ, Osman S, Gentili F, Guha A, Bernstein M (2010) Information gaps for patients requiring craniotomy for benign brain lesion: a qualitative study. J Neuro-oncol 96:241–247CrossRef Rozmovits L, Khu KJ, Osman S, Gentili F, Guha A, Bernstein M (2010) Information gaps for patients requiring craniotomy for benign brain lesion: a qualitative study. J Neuro-oncol 96:241–247CrossRef
33.
Zurück zum Zitat Schmer C, Ward-Smith P, Latham S, Salacz M (2008) When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 40(2):78–84PubMedCrossRef Schmer C, Ward-Smith P, Latham S, Salacz M (2008) When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 40(2):78–84PubMedCrossRef
34.
Zurück zum Zitat Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumour patient: family caregiver burden and unmet needs. J Neuro-Oncol 10(1):61–72CrossRef Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumour patient: family caregiver burden and unmet needs. J Neuro-Oncol 10(1):61–72CrossRef
35.
Zurück zum Zitat Sherwood PR, Given BA, Doorenbos AZ, Given CW (2004) Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. Int J Palliat Nurs 10:67–75PubMed Sherwood PR, Given BA, Doorenbos AZ, Given CW (2004) Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. Int J Palliat Nurs 10:67–75PubMed
36.
Zurück zum Zitat Silverman D (2010) Doing qualitative research: a practical handbook. Thousand Oaks Sage Publications Inc., London Silverman D (2010) Doing qualitative research: a practical handbook. Thousand Oaks Sage Publications Inc., London
37.
Zurück zum Zitat Strang S, Strang P, Ternstedt B (2001) Existential support in brain tumour patients and their spouses. Support Care Cancer 9:625–633PubMedCrossRef Strang S, Strang P, Ternstedt B (2001) Existential support in brain tumour patients and their spouses. Support Care Cancer 9:625–633PubMedCrossRef
38.
Zurück zum Zitat Thomas C, Morris SM (2002) Informal carers in cancer context. Eur J Cancer Care (Engl) 11(3):178–182CrossRef Thomas C, Morris SM (2002) Informal carers in cancer context. Eur J Cancer Care (Engl) 11(3):178–182CrossRef
39.
Zurück zum Zitat Turner B, Fleming J, Cornwell P, Worrall L, Ownsworth T, Haines T, Kendall M, Chenoweth L (2007) A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers. Brain Inj 21(11):1119–1130PubMedCrossRef Turner B, Fleming J, Cornwell P, Worrall L, Ownsworth T, Haines T, Kendall M, Chenoweth L (2007) A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers. Brain Inj 21(11):1119–1130PubMedCrossRef
40.
Zurück zum Zitat Zhang J, Vitaliano PP, Lin HH (2006) Relations of caregiving stress and health depend on the health indicators used and gender. Int J Behav Med 13(2):173–181PubMedCrossRef Zhang J, Vitaliano PP, Lin HH (2006) Relations of caregiving stress and health depend on the health indicators used and gender. Int J Behav Med 13(2):173–181PubMedCrossRef
Metadaten
Titel
Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality
verfasst von
Petrea Cornwell
Bronwyn Dicks
Jennifer Fleming
Terry P. Haines
Sarah Olson
Publikationsdatum
01.10.2012
Verlag
Springer-Verlag
Erschienen in
Supportive Care in Cancer / Ausgabe 10/2012
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-012-1383-1

Weitere Artikel der Ausgabe 10/2012

Supportive Care in Cancer 10/2012 Zur Ausgabe

Umsetzung der POMGAT-Leitlinie läuft

03.05.2024 DCK 2024 Kongressbericht

Seit November 2023 gibt es evidenzbasierte Empfehlungen zum perioperativen Management bei gastrointestinalen Tumoren (POMGAT) auf S3-Niveau. Vieles wird schon entsprechend der Empfehlungen durchgeführt. Wo es im Alltag noch hapert, zeigt eine Umfrage in einem Klinikverbund.

CUP-Syndrom: Künstliche Intelligenz kann Primärtumor finden

30.04.2024 Künstliche Intelligenz Nachrichten

Krebserkrankungen unbekannten Ursprungs (CUP) sind eine diagnostische Herausforderung. KI-Systeme können Pathologen dabei unterstützen, zytologische Bilder zu interpretieren, um den Primärtumor zu lokalisieren.

Sind Frauen die fähigeren Ärzte?

30.04.2024 Gendermedizin Nachrichten

Patienten, die von Ärztinnen behandelt werden, dürfen offenbar auf bessere Therapieergebnisse hoffen als Patienten von Ärzten. Besonders gilt das offenbar für weibliche Kranke, wie eine Studie zeigt.

Adjuvante Immuntherapie verlängert Leben bei RCC

25.04.2024 Nierenkarzinom Nachrichten

Nun gibt es auch Resultate zum Gesamtüberleben: Eine adjuvante Pembrolizumab-Therapie konnte in einer Phase-3-Studie das Leben von Menschen mit Nierenzellkarzinom deutlich verlängern. Die Sterberate war im Vergleich zu Placebo um 38% geringer.

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.