The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review
- Sylvie D Lambert1,
- James D Harrison2,
- Ellen Smith3,
- Billie Bonevski4,
- Mariko Carey4,
- Catalina Lawsin5,
- Chris Paul4 and
- Afaf Girgis1
- 1Translational Cancer Research Unit, Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, The University of New South Wales, Sydney, Australia
- 2Surgical Outcomes Research Centre (SOuRCe), Sydney Local Health District and Sydney School of Public Health, Royal Prince Alfred Hospital, The University of Sydney, Sydney, Australia
- 3School of Psychology, Faculty of Science and Information Technology, The University of Newcastle, Newcastle, Australia
- 4Priority Research Centre for Health Behaviour, School of Medicine and Public Health, The University of Newcastle, Newcastle, Australia
- 5School of Psychology, The University of Sydney, Sydney, Australia
- 6School of Medicine and Public Health, The University of Newcastle, Newcastle, Australia
- Correspondence to Dr Sylvie Lambert, Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, The University of New South Wales, PO Box 3151 (Westfield), Liverpool, NSW 2170, Australia;
Contributors All co-authors meet the three ICMJE criteria for authorship. All authors participated in the conceptualisation of the review's aims and methods. SL and ES led the primary and secondary search strategies. All authors participated in data extraction and analysis. SL, JH, BB, MC and CL drafted the manuscript and all authors contributed to critically reviewing the manuscript. All authors approved the final draft.
Objectives The recognition that a partner or caregiver is typically the patient's primary support person and is also deeply affected by the cancer diagnosis has prompted efforts to document their unmet supportive care needs. This review aimed to: (1) quantify the prevalence of unmet needs reported by partners and caregivers, (2) categorise their unmet needs by domain and (3) identify the main variables associated with reporting more unmet needs.
Methods Manuscripts were identified through systematically searching electronic databases, checking the reference lists of retrieved publications, online searching of key journals and contacting researchers in this field.
Results Unmet need items across 29 manuscripts were clustered into six domains: comprehensive cancer care (prevalence 1.1%–96%), emotional and psychological (3%–93.2%), partner or caregiver impact and daily activities (2.8%–79%), relationship (3.7% and 58%), information (2.2%–86%) and spiritual (2%–43%). Studies of caregivers of palliative care or terminal patients often reported a higher prevalence of unmet needs than studies of caregivers of cancer survivors. Variables associated with higher unmet needs included being female, not being the spouse of the patient, having lower social support or reporting distress.
Conclusions Despite the ability to classify unmet needs within broad domains, quantification of unmet needs was challenging. This was mainly due to the diversity in methods used across studies (eg, different measures, variability in conceptualisation of unmet needs, etc). Rigorous, context-specific, longitudinal studies that use validated measures are needed to benefit future intervention research.
Funding Dr Sylvie Lambert is supported by a National Health and Medical Research Council Training Fellowship, Dr Mariko Carey by a Hunter Medical Research Institute Post-doctoral Fellowship, Dr Billie Bonevski by a Cancer Institute New South Wales Career Development Fellowship and Professor Afaf Girgis by a Cancer Institute New South Wales grant.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
- Received 29 February 2012.
- Accepted 26 May 2012.
- Published Online First 6 July 2012
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions