Communication and information needs of older people with cancer: a systematic review
Intended for healthcare professionals
Evidence and practice    

Communication and information needs of older people with cancer: a systematic review

Meiya Lai Oncology nurse, oncology department, The People’s Hospital of Baoan Shenzhen, Shenzhen, China
Barry Quinn Senior lecturer, School of Nursing and Midwifery, Queen’s University Belfast, Belfast, Northern Ireland

Why you should read this article:
  • To enhance your awareness of the communication and information needs of older people with cancer

  • To recognise that many older people with cancer want to be involved in decision-making about treatment

  • To acknowledge the benefits of a clinical nurse specialist acting as the main contact within the team

Older people with cancer often have a varying range of specific but fluctuating physical, psychological, emotional, social, economic and spiritual needs. To be able to participate in decision-making, they need optimal communication with healthcare professionals and accurate information from them. A systematic review of the literature explored the communication and information needs of older people with cancer. It appeared that these needs are not always addressed and that older people’s priorities are not always recognised. Barriers to addressing older people’s information and communication needs included personality traits and age-related functional decline, the effects of cancer on the person, a lack of time on the part of healthcare professionals and the absence of a main contact within the healthcare team. To meet the communication and information needs of older people with cancer it is crucial to adopt a person-centred approach.

Cancer Nursing Practice. doi: 10.7748/cnp.2023.e1848

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

mlai02@qub.ac.uk

Conflict of interest

None declared

Lai M, Quinn B (2023) Communication and information needs of older people with cancer: a systematic review. Cancer Nursing Practice. doi: 10.7748/cnp.2023.e1848

Published online: 30 November 2023

Background

Cancer continues to be one of the leading causes of morbidity and mortality worldwide. While the causes of cancer are complex and multifactorial, increasing age is a significant risk factor. In 2020, almost half of all new cancer cases worldwide were diagnosed in people aged over 65 years (Ferlay et al 2020). By the end of 2050, the number of people aged 65 years and older is projected to increase to more than 1.5 billion worldwide (United Nations 2019). As the number of older people continues to rise globally, the number of older people with cancer will also increase (Han et al 2020, National Cancer Institute 2021).

Older people with cancer often have a varying range of specific but fluctuating physical, psychological, emotional, social, economic and spiritual needs (Estapé 2018). Functional decline is common among older people with cancer and can increase the risk of disability, morbidity and mortality, negatively affect treatment outcomes and reduce quality of life (Nightingale et al 2021). Researchers have examined the care needs of people with cancer and found that many were unmet, including physical, psychological, information and communication care needs (Chua et al 2018, Wang et al 2018). Older people with cancer continue to be under-represented in clinical trials, resulting in limited treatment options and undertreatment (Estapé 2018).

These complexities and challenges mean that having optimal communication with, and providing optimal information to, older people with cancer is crucial when planning and delivering care (Li et al 2020). This article discusses the findings of a systematic review of the literature on the communication and information needs of older people with cancer.

Aim

To explore the communication and information needs of older people with cancer.

Method

The first author of this article conducted a systematic review of the literature. The inclusion criteria are shown in Table 1 and the search terms and strategy are shown in Table 2. The search terms were combined using Boolean operators (Bramer et al 2018).

Table 1.

Inclusion and exclusion criteria

Inclusion criteriaExclusion criteria
People with cancer aged 65 years and overPeople with cancer aged under 65 years
Focus on the communication and information needs of people with cancer aged 65 years and overLack of focus on the communication and information needs of people older with cancer aged 65 years and over
Articles published between January 2011 and July 2021Articles published before January 2011 and after July 2021
Articles published in EnglishArticles not published in English
Qualitative, quantitative and mixed-method studiesGrey literature, editorials and opinion articles, review articles
Table 2.

Search terms and strategy

cnp.2023.e1848_0002_tb1.jpg

Systematic searches were performed on the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, MEDLINE and PsycINFO databases. After duplicates had been removed, titles and abstracts were carefully screened and critically reviewed. Articles that did not meet the inclusion criteria were removed. The remaining articles were retrieved and read. Out of the 383 articles identified through the database searches, ten were included in the final review. Two further articles obtained by reviewing the reference lists of retrieved articles were also included, bringing the total number of included articles to 12.

The quality of included studies was appraised using Critical Appraisal Skills Programme (CASP) checklists (casp-uk.net/casp-tools-checklists). Since most studies were qualitative or had a qualitative component, the CASP qualitative checklist was used (Long et al 2020). All 12 studies were deemed to be of high quality.

Data from the 12 studies were entered into a data extraction table. A thorough thematic analysis was conducted following the steps outlined by Nowell et al (2017). Each article was read several times and then coded, allowing initial themes to emerge. From these initial themes overarching themes were identified.

Every step of the process of conducting the literature review was reviewed and discussed with the second author of this article.

Findings

The 12 studies had been carried out in Canada, Japan, the Netherlands, Norway, the US and the UK. Five used a quantitative approach, four used a qualitative approach and three used a mixed-methods design. Table 3 shows an overview of the 12 included studies.

Table 3.

Overview of the 12 included studies

cnp.2023.e1848_0003_tb1.jpg

Four themes emerged from the thematic analysis of data:

  • Communication needs of older people with cancer not always addressed.

  • Information needs of older people with cancer not always addressed.

  • Priorities of older people with cancer not always recognised.

  • Barriers to addressing people’s information and communication needs.

Communication needs of older people with cancer not always addressed

Four studies reported unmet psychological needs of older people with cancer (van Weert et al 2013, Noordman et al 2017, van Ee et al 2018, Tsuboi et al 2020). Noordman et al (2017) reported that 47% of their survey respondents experienced communication barriers and a lack of emotional support; van Weert et al (2013) and Tsuboi et al (2020) reported similar findings. In two studies, participants reported that healthcare professionals did not always take their needs and concerns seriously, leaving them feeling unsupported (Noordman et al 2017, Krok-Schoen et al 2020). However, in van Ee et al (2018), participating older men with prostate cancer explained that they did not want to show their vulnerability and therefore had little desire to share their feelings with healthcare professionals. A focused and tailored approach to addressing people’s communication needs was considered important so that each person’s needs would be understood and addressed, but did not always happen in reality (van Weert et al 2013, Fitch et al 2015, Guldhav et al 2017).

Information needs of older people with cancer not always addressed

Six studies (Fitch et al 2015, Guldhav et al 2017, Noordman et al 2017, van Ee et al 2018, Tsuboi et al 2020, Pieters et al 2021) demonstrated that older people with cancer did not always understand the information they were given about their condition and treatment options. In two of these six studies, participants thought they did not receive sufficient information: in Guldhav et al (2017), 67% of questionnaire respondents had expected more information and counselling regarding their condition; in Noordman et al (2017), six out of 14 interviewees reported that they had not been given enough information on treatment options and that this had negatively affected their decisions about treatment. Pieters et al (2021), who described the experiences of 54 women aged 65 years or over who had received a breast cancer diagnosis, found that many believed their age would protect them against breast cancer, which suggests that these women had not received appropriate information about the risk of cancer.

Four studies identified that their participants needed accurate information so that they could have realistic expectations and be able to plan for the future (van Weert et al 2013, Noordman et al 2017, van Ee et al 2018, Tsuboi et al 2020). To be able to make decisions about treatment, older people wanted to know about the side effects of treatment – something nurses recognised as important (van Weert et al 2011, 2013). However, despite older people’s need for accurate information, healthcare professionals did not always go into much detail regarding treatment options (Fitch et al 2015, van Ee et al 2018, Tsuboi et al 2020) and information about side effects was missing from many discussions (van Weert et al 2013, Fitch et al 2015, van Ee et al 2018, Krok-Schoen et al 2020).

Priorities of older people with cancer not always recognised

In Tsuboi et al (2020), many patients and families expected doctors to make decisions about treatment, since they did not feel confident to do so. However, in all other studies, one of the priorities of participants was being involved in the decision-making about their treatment and care options. This was reflected in their need for information on their disease, treatment options and side effects and in their need for time to make their decisions. However, older people’s priorities and needs were not always recognised by healthcare professionals (van Weert et al 2013, Fitch et al 2015, Guldhav et al 2017, Noordman et al 2017, van Ee et al 2018, Krok-Schoen et al 2020, Tsuboi et al 2020, Dumas et al 2021, Pieters et al 2021). Since healthcare professionals did not always recognise older people’s priorities, they did not always meet their needs, leaving them feeling unsupported and concerned about their families (Van-Weert et al 2013, Fitch et al 2015, Noordman et al 2017, van Ee et al 2018, Dumas et al 2021).

Key points

  • Barriers to optimal communication and information for older people with cancer include age-related functional decline and the effects of cancer on people

  • Further barriers include lack of time on the part of healthcare professionals and the absence of a main contact person within the healthcare team

  • Appropriate and accurate information is important to enable older people with cancer to be involved in decision-making regarding treatment

  • A person-centred approach can help address the communication and information needs of an older person with cancer and therefore improve their outcomes

Barriers to addressing people’s communication and information needs

Several barriers to optimal communication and information were reported in the studies. These barriers can be classified in four categories:

  • People’s personality traits and age-related functional decline – personality traits (such as being reluctant or feeling embarrassed to talk about intimate concerns) and age-related disabilities (such as hearing issues or memory impairments) can result in older people with cancer not receiving, obtaining or absorbing important information about their condition (van Weert et al 2011, Noordman et al 2017).

  • The effects of cancer on the person – older people’s ability to process information may be affected by the emotional strain of having cancer, disease symptoms, side effects of treatment, uncertainty, fear, anxiety and fatigue (Noordman et al 2017, Krok-Schoen et al 2020, Dumas et al 2021).

  • A lack of time on the part of healthcare professionals – participants in Fitch et al (2015), Noordman et al (2017), Krok-Schoen et al (2020) and Dumas et al (2021) felt that healthcare professionals lacked time to engage in optimal communication and provide adequate information.

  • The lack of a main contact person within the health team – participants in Guldhav et al (2017), Krok-Schoen et al (2020) and Dumas et al (2021) mentioned the importance of having a main contact person within a team, since the absence of such a person resulted in suboptimal communication.

Four studies mentioned strategies for healthcare professionals to improve communication and information, including taking more time with each patient, taking their concerns seriously, offering more written materials and/or a question prompt sheet, and avoiding medical jargon (van Weert et al 2011, Fitch et al 2015, Noordman et al 2017, Krok-Schoen et al 2020). A practical solution to remove the barrier of impaired memory was mentioned in Noordman et al (2019), where 70% of survey respondents agreed with the idea of audio-recording their discussions with healthcare professionals so that they would be able to listen to them again later.

Discussion

The findings of this systematic review of the literature confirm that there are unmet communication and information needs among older people with cancer. Older people with cancer need appropriate and accurate information so that they can be involved in decision-making regarding their treatment and care. Most participants in the reviewed studies indicated that they wanted to be involved in decision-making and have open and honest discussions with healthcare professionals about their future care. Only in one study were participants and their families unwilling to get involved in decisions about treatment and preferred to let doctors make important decisions for them because they lacked the confidence to do so (Tsuboi et al 2020).

Interestingly, that study (Tsuboi et al 2020) had been conducted in Japan. In most European countries and in the US, older people with cancer tend to get involved in decisions about their treatment (Gong et al 2021). In many Asian countries, families tend to decide collectively for their relative (Xing et al 2017). People’s cultural background may affect their engagement in the decision-making process regarding treatment for cancer (Gong et al 2021). This suggests that healthcare professionals need to consider patients’ cultural background when communicating with them.

One of the findings of the review was that the absence of a main contact person in the healthcare team resulted in a lack of communication. In their integrative literature review on the role of the clinical nurse specialist in cancer care, Kerr et al (2021) reported that a clinical nurse specialist acting as the main contact person within the team had a positive effect on care coordination and patient outcomes. However, the role of the clinical nurse specialist is still developing in many parts of the world and the availability of such specialists may differ (Liu and Yan 2021). Considering the importance of the role, cancer services may need to develop it to improve communication and care coordination for older people with cancer.

People’s age-related functional issues and the effects of cancer on them were important factors contributing to inadequate communication and information. Older people with cancer are likely to have complex communication and information needs due to various cognitive, sensory, functional and psychological impairments. Age-related barriers such as physical decline and memory loss can make it challenging for healthcare professionals to understand older people’s needs (Korc-Grodzicki et al 2020). Each person will have their own needs and preferences regarding communication and information, so healthcare professionals should adopt a person-centred approach – which can help address each person’s needs and ultimately improve patient outcomes.

Limitations

Searches were conducted on four databases but restricted to articles published in English. Most of the studies included in the review had been conducted in higher-income countries and only one had been conducted in Asia.

Conclusion

Many older people with cancer want to be involved in decision-making about their treatment but their ability to do so can be negatively affected by suboptimal communication with, and suboptimal information from, healthcare professionals. Strategies for healthcare professionals to improve communication with, and information for, older people with cancer include taking more time with patients, taking their concerns seriously, offering more written materials and/or a question prompt sheet, and avoiding medical jargon. With the person’s permission, discussions around treatment could be recorded so that the older person can listen to them again later.

Healthcare professionals also need to consider their patients’ cultural background when communicating with them. Having a member of the team, for example a clinical nurse specialist, acting as the main contact person is crucial. Each person will have their own needs and preferences regarding communication and information, so healthcare professionals should adopt a person-centred approach.

References

  1. Bramer WM, de Jonge GB, Rethlefsen ML et al (2018) A systematic approach to searching: an efficient and complete method to develop literature searches. Journal of the Medical Library Association. 106, 4, 531-541. doi: 10.5195/jmla.2018.283
  2. Chua GP, Tan HK, Gandhi M (2018) What information do cancer patients want and how well are their needs being met? Ecancermedicalscience. 12, 873. doi: 10.3332/ecancer.2018.873
  3. Dumas L, Lidington E, Appadu L et al (2021) Exploring older women’s attitudes to and experience of treatment for advanced ovarian cancer: a qualitative phenomenological study. Cancers. 13, 6, 1207. doi: 10.3390/cancers13061207
  4. Estapé T (2018) Cancer in the elderly: challenges and barriers. Asia-Pacific Journal of Oncology Nursing. 5, 1, 40-42. doi: 10.4103/apjon.apjon_52_17
  5. Ferlay J, Ervik M, Lam F et al (2020) Global Cancer Observatory: Cancer Today. International Agency for Research on Cancer, Lyon.
  6. Fitch MI, McAndrew A, Harth T (2015) Perspectives from older adults receiving cancer treatment about the cancer-related information they receive. Asia-Pacific Journal of Oncology Nursing. 2, 3, 160-168. doi: 10.4103/2347-5625.160971
  7. Gong N, Du Q, Lou H et al (2021) Treatment decision-making for older adults with cancer: a qualitative study. Nursing Ethics. 28, 2, 242-252. doi: 10.1177/0969733020945752
  8. Guldhav KV, Jepsen R, Ytrehus S et al (2017) Access to information and counselling – older cancer patients’ self-report: a cross-sectional survey. BMC Nursing. 16, 18. doi: 10.1186/s12912-017-0211-9
  9. Han Y, He Y, Lyu J et al (2020) Aging in China: perspectives on public health. Global Health Journal. 4, 1, 11-17. doi: 10.1016/j.glohj.2020.01.002
  10. Hill-Kayser CE, Vachani C, Hampshire MK et al (2011) The role of Internet-based cancer survivorship care plans in care of the elderly. Journal of Geriatric Oncology. 2, 1, 58-63. doi: 10.1016/j.jgo.2010.10.001
  11. Kerr H, Donovan M, McSorley O (2021) Evaluation of the role of the clinical nurse specialist in cancer care: an integrative literature review. European Journal of Cancer Care. 30, 3, e13415. doi: 10.1111/ecc.13415
  12. Korc-Grodzicki B, Alici Y, Nelson C et al (2020) Addressing the quality of communication with older cancer patients with cognitive deficits: development of a communication skills training module. Palliative & Supportive Care. 18, 4, 419-424. doi: 10.1017/S1478951520000218
  13. Krok-Schoen JL, Naughton MJ, Noonan AM et al (2020) Perspectives of survivorship care plans among older breast cancer survivors: a pilot study. Cancer Control. 27, 1, 1073274820917208. doi: 10.1177/1073274820917208
  14. Li J, Luo X, Cao Q et al (2020) Communication needs of cancer patients and/or caregivers: a critical literature review. Journal of Oncology. 2020, 7432849. doi: 10.1155/2020/7432849
  15. Liu H, Yan H (2021) Clinical nurse specialist role and practice in mainland, China. In Fulton JS, Holly VW (Eds) Clinical Nurse Specialist Role and Practice. Springer, Cham, 183-189.
  16. Long HA, French DP, Brooks JM (2020) Optimising the value of the critical appraisal skills programme (CASP) tool for quality appraisal in qualitative evidence synthesis. Research Methods in Medicine & Health Sciences. 1, 1, 31-42. doi: 10.1177/2632084320947559
  17. National Cancer Institute (2021) Age and Cancer Risk. http://cancer.gov/about-cancer/causes-prevention/risk/age (Last accessed: 2 November 2023.)
  18. Nightingale G, Battisti NM, Loh KP et al (2021) Perspectives on functional status in older adults with cancer: an interprofessional report from the International Society of Geriatric Oncology (SIOG) nursing and allied health interest group and young SIOG. Journal of Geriatric Oncology. 12, 4, 658-665. doi: 10.1016/j.jgo.2020.10.018
  19. Noordman J, Driesenaar JA, Henselmans I et al (2017) Patient participation during oncological encounters: barriers and need for supportive interventions experienced by elderly cancer patients. Patient Education and Counseling. 100, 12, 2262-2268. doi: 10.1016/j.pec.2017.06.009
  20. Noordman J, Driesenaar JA, van Bruinessen IR et al (2019) Evaluation and implementation of ListeningTime: a web-based preparatory communication tool for elderly patients with cancer and their health care providers. JMIR Cancer. 5, 1, e11556. doi: 10.2196/11556
  21. Nowell LS, Norris JM, White DE et al (2017) Thematic analysis: striving to meet the trustworthiness criteria. International Journal of Qualitative Methods. 16, 1, 1-13. doi: 10.1177/1609406917733847
  22. Pieters HC, Green E, Sleven M (2021) ‘It just hit me like a ton of bricks’: improving the patient experience of receiving a breast cancer diagnosis at an older age. Research in Gerontological Nursing. 14, 2, 79-89. doi: 10.3928/19404921-20210115-02
  23. Tsuboi R, Sugishita M, Hirakawa Y et al (2020) Experiences and hidden needs of older patients, their families and their physicians in palliative chemotherapy decision-making: a qualitative study. Japanese Journal of Clinical Oncology. 50, 7, 779-786. doi: 10.1093/jjco/hyaa020
  24. van Ee IB, Hagedoorn M, Smits CH et al (2018) This is an older men’s world: a qualitative study of men’s experiences with prostate cancer. European Journal of Oncology Nursing. 37, 56-64. doi: 10.1016/j.ejon.2018.11.002
  25. van Weert JC, Jansen J, Spreeuwenberg PM et al (2011) Effects of communication skills training and a Question Prompt Sheet to improve communication with older cancer patients: a randomized controlled trial. Critical Reviews in Oncology. 80, 1, 145-159. doi: 10.1016/j.critrevonc.2010.10.010
  26. van Weert JC, Bolle S, van Dulmen S et al (2013) Older cancer patients’ information and communication needs: what they want is what they get? Patient Education and Counseling. 92, 3, 388-397. doi: 10.1016/j.pec.2013.03.011
  27. Wang T, Molassiotis A, Chung BP et al (2018) Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliative Care. 17, 96. doi: 10.1186/s12904-018-0346-9
  28. Xing YF, Lin JX, Li X et al (2017) Advance directives: cancer patients’ preferences and family-based decision making. Oncotarget. 8, 28, 45391-45398. doi: 10.18632/oncotarget.17525

Share this page

Related articles

Increasing awareness of survivors’ needs
More people in the UK are surviving cancer, but the...

Survey evaluates quality of patient information at end of treatment
A patient experience survey was undertaken by the South West...

Nurse-led home chemotherapy for patients with lung disease
This article describes the development of a service for...

Community choir enhances coping skills and quality of life
This article explores the development of the Tenovus Sing...

Giving staff confidence to discuss sexual concerns with patients
This article describes a countywide event to raise awareness...