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Table 2 Review evidence examining the information requirements of family carers. (Published between 2000 and 2015)

From: Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland

Reference Subject/population of interest Total number of studies Assessment of methodological quality Analysis Information requirements identified Comments/conclusions
Capurro et al. (2014) [28] Effectiveness of e-health interventions in meeting information needs of patients, caregivers and health professionals. 17 eligible studies. No formal assessment of methodological quality is discussed. Tabulated information on effectiveness of both qualitative and quantitative studies Information on pain management, treatments, prognosis, reassurance on medication, symptom management, anxiety, death and, access to medical records. Authors report use of e-health has been very limited and relatively few studies look at caregivers.
Need for good quality RCTs.
Caress et al. (2009) [29] Information & support needs of family carers of patients with COPD 35 eligible studies No formal assessment of methodological quality is discussed. Narrative review No studies looked specifically at need.
Four qualitative studies identified need for: more information on disease and more information on transition to becoming a carer (change to established roles)
Information needs of carers largely invisible.
Carers need help in delivering physical and supportive care.
Emotional support tasks may be greatest cause of burden.
Caress et al. (2009) [30] Review of services to support family carers of patients with cancer 19 eligible studies No formal assessment of methodological quality was undertaken. Narrative review Skills training provided to carers also symptom management, problem solving techniques, educational interventions to teach practical skills. Studies show a wide variety in terms of the intervention and the diagnoses of patients.
Interventions are likely to vary depending on stage of disease.
Challenge to teach practical nursing skills to carers.
Docherty et al. (2008) [10] Knowledge and information needs of informal caregivers in palliative care. 34 eligible studies Yes, used a tool they claim has previously been used in studies of palliative patients/carers (Hawker et al., 2002). Extracted data were tabulated and authors completed a narrative synthesis Needs in relation to pain management, information on illness, prognosis, symptoms which may indicate disease progression, palliative care, spirituality, social welfare, psychological issues. Major aim of palliative care is pain management and this is reflected in many studies – barriers include lack of knowledge, poor communication and variance in patient carer need.
Info should be tailored to individual and disease stage.
Harding & Higginson (2003) [17] Examine effectiveness of interventions to assist home-based carers of cancer and palliative care patients. 22 eligible studies Yes, used a hierarchy of evidence approach (GRADE). Extracted data were tabulated and authors completed a narrative analysis. Home care, respite, social networks/activity groups, one-to-one interventions and, group work were all identified but – little information provided on information needs Lack of evaluation studies in this area.
Palliative carers often dislike leaving the patient to gain services for themselves.
Need to prioritise evaluation studies.
Harding et al. (2012) [11] How to support informal caregivers of cancer/palliative patients 33 eligible studies Yes, JADAD score and GRADE Considered meta-analysis but extracted data according to service design, tabulated outcomes and completed narrative review Most studies are one-to-one interventions – findings generally positive.
Group interventions are also generally positive
More evaluations are being conducted but evidence is weak – need to look at mechanisms of change in better defined models
Hinkle et al. (2015) [31] Factors effecting family satisfaction with end-of-life care in the ICU 23 eligible studies Yes, adapted CONSORT checklist Extracted data were tabulated and authors completed a narrative analysis. Few specific information requirements identified.
Family support is key, support in decision making, knowledge of patient’s wishes about EoL care.
Style of professional contact is important – empathetic, clear, early palliative care consultation is important.
Written communication may work well as carers may not retain verbal information at this time.
Style of communication is important, empathy and explanations of process increase carer satisfaction.
Honea et al. (2008) [32] Review to assess measures available to assess caregiver burden and interventions to supports oncology caregivers 20 studies examined interventions for carers Yes, CASP Extracted data were tabulated and authors completed a narrative analysis Review found structured programs of information for carers – individual and group.
Provide info on disease process, symptom management, psychosocial issues, resources, coordination of care, caregiver self-care
Study examines caregiver burden only.
Key finding is the lack of interventions for caregiver strain and burden.
Potentially valuable studies provide info on pain management, teach caregiver competence, discuss psychosocial issues, identify resources & coordinate existing care.
Hudson et al. 2010 [18] Examine interventions that aimed to improve psychosocial support of family carers of palliative care patients 14 eligible studies Yes, GRADE hierarchy of evidence scoring system Extracted data were tabulated and authors completed a narrative analysis. Some evidence that interventions aimed at psycho-educational, problem solving and cognitive restructuring may benefit.
Some evidence that interventions should be targeted at specific problems experienced by a carer.
Some evidence that psycho-educational interventions may benefit but although there is more research it is still insufficient.
Targeting interventions to individual need is likely to be benefice al
Jones et al. (2011) [33] To assess the effectiveness of interventions that aim to improve the psychological & physical health of family carers 11 RCTs Yes, used Cochrane’s guidelines. Meta-analysis Nine interventions provided direct support to the carer – weak evidence that these may reduce psychological distress in the short term and may improve QoL and coping skills – but no results were statistically significant.
Indirect support to carers yielded no significant results.
There was evidence of the effectiveness of interventions directed at the carer but evidence based on a wide variety of studies and outcomes which makes pooling the data difficult.
Some evidence that carers should be assessed and interventions should address individual need
McCorkle & Pasacreta (2001) [34] Review and describe the needs of cancer caregivers during the palliative phase of the illness. Unclear No Descriptive analysis Carers are unprepared for role e.g. transport, emotional support, maintaining home, complex nursing tasks being undertaken by carers, stage of illness has impact on carers.
Many studies show that carers find it difficult to access information.
Carers have greatest informational need at; diagnosis, hospitalisation, start of new treatment and dying phase
There is relatively little research to guide interventions.
Interventions may be about teaching carers nursing tasks to meet needs of patient.
Some interventions develop individual and group interventions for carers.
Little research evidence for either type of intervention.
Moore et al. (2013) [35] The supportive & palliative care needs of patients with high-grade glioma & their carers 21 Yes, CASP tool Extracted data were tabulated and authors completed a narrative analysis Postoperative information to allow active involvement in care, disease and treatment information, side-effects of treatment, medication management, prognosis, financial information, navigating healthcare systems, information on resources such as support groups Carers want consistent advice.
Info needs change depending on illness trajectory
Relevant/ timely information supports transition to caring role, raises awareness of services, helps address uncertainty and aids advocating role.
Morris et al. (2015) [36] The needs of family carers supporting a relative who is dying at home. 28 No Extracted data were tabulated and authors completed a narrative analysis Information needs included pain relief, how to monitor and interpret symptoms, when to inform health professionals.
Preparation for caring role – need nursing guidance at earlier stage
Lack of practical support/poor communication is stressful
Carers reported both positive and negative experiences.
Want to maintain normal life as long as possible
Carer experience influenced by informal supports, professional help, ease of accessing technical expertise.
Resources should be used to minimise burden.
Northouse et al. (2010) [37] Review aims to analyse and assess the effectiveness of interventions provided to caregivers of cancer patients 29 Randomised Controlled Trials None discussed Meta-analysis Majority of interventions included information on caring for the patient, maintaining family/marital relationships & carers caring for themselves.
Meta-analysis of information only interventions (n = 3) were favourable with small to large effect size but these were small studies.
Majority of interventions were delivered to patients & carers jointly but great variety in content and duration of interventions.
Meta-analysis showed that overall effect sizes were small to moderate but consistently associated with reduction in burden, improved ability to cope, increased self-efficacy and improved QoL.
Parker et al. (2007) [38] Patient and carer end-of-life communication needs. 46 Yes, used a hierarchy of evidence system to identify methodologically weak studies Narrative synthesis Carers require more information on prognosis & death, particularly as illness progresses, options for treatment, survival timeframe, pain control, side effects of treatments, practical nursing skills to care for patient, how to deal with an emergency, fear of ding and spiritual issues. Individual differences but carers require understanding so they can mentally prepare, organise lives and be a source of information to others.
Style of discussion may be important, empathetic, who is present, sufficient time, acknowledged as an individual.
As illness progresses patients may want less information while carers often wanted more.
Thompson et al. (2007) [39] Do information and support interventions improve the QoL of people caring for a family member with dementia? 44 eligible studies Yes, used Cochrane and CRD guidelines Meta-analysis Group-based interventions - found a significant improvements in depression for psycho-educational interventions.
No significant differences for burden or supportive interventions.
Individual-based interventions – improvements for depression, control group improved in measure of self-efficacy but neither were significant.
Trials are generally small, poor quality so difficult to draw conclusions.
Small statistically significant improvements for group interventions on depression scores may not be clinically significant.
Little evidence to support the universal effectiveness of interventions to improve lives of caregivers.
Ventura et al. (2014) [40] Describe, evaluate & summarise literature relating to unmet need in home-based palliative care 15 eligible studies Yes, Standard Quality Assessment Criteria for Evaluating Primary Research Papers (Kmet et al., 2004). Extracted data were tabulated and authors completed a narrative analysis Communication needs: carers require open & regular communication with professionals. Consistent message.
Spiritual needs: fear of future, death is debilitating
Practical needs: equipment, transport, household, finance.
Information needs: Illness & prognosis, emergency response. Need to feel competent
Open communication with professional is major unmet need.
Most needs identified were psycho-social or spiritual – physical needs appear to be met.
Most included studies focus on cancer so may not be generalizable.
Needs of patients and carers appear similar