Delivery of telephone-based supportive care to people with cancer: An analysis of cancer helpline operator and cancer nurse communication

Objectives

Telephone-based supportive care presents a potentially highly accessible means of addressing unmet supportive care needs for people with cancer. Identification of behaviours that facilitate communication is essential for development of training for telephone-based supportive care. The aim of this study was to describe communication behaviours within supportive care telephone calls in two contexts (1) a telephone outreach intervention and (2) cancer helpline calls, to identify potential areas for further training.

Methods

50 recorded calls were analysed using two standardised coding systems: the RIAS and Verona-CoDES-C.

Results

Mean call length was 21 min (304 utterances) for nurse-outreach calls and 23 min (355 utterances) for helpline calls. Closed questioning, verbal attentiveness and giving information/counselling were the most common communication behaviours identified. Emotional cues were most commonly responded to through non-explicit back-channelling, exploration of content or provision of reassurance or advice.

Conclusions

This study confirmed the need to address the manner in which questions are framed to maximise patient disclosure. Responding to patent emotional cues was highlighted as an area for future training focus.

Practice implications

Communication skills training that addresses each of these tasks is likely to improve the effectiveness of telephone-based delivery of supportive care.     

The information needs of partners and family members of cancer patients: A systematic literature review

Objective

This review examined the extent to which the information needs of partners and family members of cancer patients has been addressed in the literature.

Methods

We conducted a systematic search of four databases for papers published between 1998 and 2008 which assessed the information needs of partners and/or family members of adult cancer patients.

Results

Thirty-two papers were included in the review. Eleven categories of information need were identified. There was a predominant focus on breast or prostate cancer, leaving a knowledge gap in relation to other cancers. Few papers moved beyond the diagnosis and initial treatment phase, and most did not distinguish between met and unmet needs. Those that did, indicated that partners/family members are more likely to have unmet needs for information about supportive care than for medical information. The concept of ‘information need’ was generally poorly developed and theorised in the papers.

Conclusion

Establishing the information needs of partners and family members of cancer patients is an important, but as yet neglected, area of research. In order to develop our understanding of this area more empirical research, with sound conceptual and theoretical foundations is required.     

The information and support needs of patients diagnosed with High Grade Glioma

Objective

To understand patients’ experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory.

Methods

Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method.

Results

Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits.

Conclusion

Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression.

Practice implications

This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients’ information and support needs and be aware that these change over and within time.     

Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory

Objective

We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients.

Postoperative information needs and communication barriers of esophageal cancer patients

Objective

Given the poor prognosis of esophageal cancer and the impact of surgery on health-related quality of life (HRQL), addressing patients’ postoperative information needs is important. This study aimed to examine (1) the content and type of patients’ information needs and (2) patient perceived facilitators and barriers to patient participation.

Methods

Interviews were conducted with 20 purposefully selected esophageal cancer patients. Open and structured questions were alternated. The transcribed interviews were analysed inductively and deductively, using MAXqda.

Results

Patients’ post-operative information needs concerned HRQL, medical care and prognosis, covering several sub-domains. Different types of needs were identified, e.g., requests for information about cause, course and self-management. Barriers to patient participation mostly reflected beliefs and skills, and could be categorized into agenda and communication barriers. Facilitators of patient participation reflected physician, patient and interaction characteristics, companion support and pre-visit preparation. Many patients saw merit in pre-visit preparation interventions; few endorsed skill-building interventions.

Conclusion

This study listed the postoperative information needs of esophageal cancer patients. Moreover, it gained insight into patient-perceived barriers and facilitators of patient participation.

Practice implications

The findings demonstrate what information physicians should have available and informs interventions to support patients in meeting their information needs.     

Patients' perception of communication with clinicians during screening and discussion of cancer supportive care needs

Objective

Effective communication between patients and clinicians is an essential aspect of supportive care for cancer patients, however many patients find this communication is inadequate. This study examined cancer patients’ perception of communication with their clinician during a supportive care screening and discussion process and the ways in which this process assisted communication.

Methods

One hundred and fifty-four patients undertaking treatment for cancer in chemotherapy, radiotherapy and surgical units in six hospitals in Australia participated in a formal supportive care screening, discussion and referral process and were interviewed about their experiences.

Results

The majority of patients interviewed felt that the process enhanced communication by encouraging them to reflect on their needs, assisting them to initiate a discussion with the clinician, validating their needs, encouraging them to seek help and support and focusing clinician attention on unmet needs.

Conclusion

Patients perceived the formal process of supportive care improved communication between themselves and their clinicians.

Practice implications

Undertaking a patient-centred process of supportive care can assist clinicians to meet the unmet needs of patients with cancer and can increase patient satisfaction.     

The Complementary Medicine Education and Outcomes (CAMEO) program: A foundation for patient and health professional education and decision support programs

Objective

This paper describes the background, design and evaluation of a theory-informed education and decision support program for cancer patients considering complementary medicine (CM).

Methods

The program was informed by the Shared Decision Making theory, the Ottawa Decision Support Framework and the Supportive Care Framework. Previous empirical evidence and baseline research were used to identify patients’ and health professionals’ (HPs) information and decision support needs related to CM.

Results

To address the continuum of CM needs, a variety of education and decision support interventions were developed, including basic CM information and resources for patients and HPs, a group education program and one-on-one decision support coaching for patients, and an on-line education module for HPs. Evaluation of the program and individual interventions is underway.

Conclusions

This education and decision support program addresses a significant gap in care and offers an evidence-informed framework in which to translate CM evidence to conventional care settings and promote communication about CM.

Practice implications

Evidence-informed CM education and decision support interventions are needed to shift the culture around CM within conventional care settings and promote open communication that will lead to CM therapies being safely integrated into care.     

Women's and residents’ experiences of communication in the diagnostic mammography suite

Objective

To gain understanding of radiology residents’ and women's experiences, concerns, information needs, coping strategies and perspectives about optimal communication during diagnostic mammography.

Methods

Qualitative analysis of focus groups of radiology residents and women who had undergone diagnostic mammograms.

Results

Five categories of themes emerged from our analysis: information needs, perspectives and ideals, emotional experiences and observations, working together, individual experiences, and others’ roles. Women preferred continuous orientation, clear explanations and emotional support by physicians and radiology technologists throughout diagnostic processes. Communication about diagnostic mammogram results evoked the threat of breast cancer and was experienced as “bad news” by women, but not necessarily by all radiology residents. Lack of collaboration among radiologists, technologists and other healthcare professionals engendered confusion and anxiety in patients. Radiology residents felt inadequately prepared to meet the communication challenges of providing information and emotional support tailored to women's needs in this context.

Conclusion

Women's experiences are influenced by the extent to which they receive clear information and support, and perceive collaboration among professionals involved in the diagnostic mammography process.

Practice implications

Radiology education must address communication with patients and among healthcare professionals involved in the care of patients undergoing diagnostic procedures and interventions.     

Effectiveness of the ‘availability,current issues and anticipation’ (ACA) training programme for general practice trainees on communication with palliative care patients: A controlled trial

Objective

This study aimed to evaluate the effectiveness of a new palliative care ‘availability, current issues and anticipation’ (ACA) training programme to improve communication skills of general practice trainees (GPTs).

Methods

In a controlled trial among third-year GPTs, we videotaped one 20-min consultation between each GPT and a simulated palliative care patient at baseline and at six months follow-up. We measured the number of issues discussed and the quality of communication skills and analysed between-group differences using linear mixed models and logistic regression.

Results

Fifty-four GPTs were assigned to the intervention and 64 to the control group. We found no effect of the programme on the number of issues discussed or on the quality of GPT communicative behaviour. GPTs infrequently addressed ‘spiritual/existential issues’ and ‘unfinished business’. In a selection of the consultations, simulated patients brought up more issues than the GPTs did.

Conclusion

The ACA training programme was not effective in the way it was carried out and evaluated in this trial.

Practice implications

The ACA programme should focus on the issues that scored low in this trial. Future research on GPT–patient communication in palliative care should consider using real patients in a series of consultations to evaluate effectiveness.     

Information needs of parents of children admitted to a neonatal intensive care unit: A review of the literature (1990–2008)

Objective

This literature review focuses on information and communication needs of parents of children admitted to the NICU and on their use of information sources in the illness trajectories at NICU.

Methods

Literature search in 4 electronic databases (Ovid Medline, PsycINFO, CINAHL and Sociological Abstracts), covering 1990–March 2008.

Results

The seventy-eight included articles revealed that NICU parents have high information needs. The illness trajectory mediates parental information needs and induces a changing pattern in information use and information needs. Most attention is paid to the prenatal and acute phases, while information behaviour in sudden events and later phases receives limited attention.

Conclusions

In-depth studies on information needs and corresponding use of information sources are lacking. More longitudinal studies are needed, taking the illness trajectory into account and investigating the determinants and outcomes of the information and communication needs of NICU parents.

Practice implications

Healthcare professionals should adapt their information provision along the illness trajectory. The development of guidelines of information provision during the illness trajectory at NICU would support all professionals.     

Patient-health care provider communication among patients with newly diagnosed prostate cancer: Findings from a population-based survey

Objective

To examine the multidimensional concept of patient-health care provider (HCP) communication, its effects on patient satisfaction with oncology care services, and related racial differences.

Methods

The current analysis draws from a population-based survey sample of 1011 African American and 1034 Caucasian American men with newly diagnosed prostate cancer. The variables of satisfaction with health care services, interpersonal treatment, contextual knowledge of the patient, and prostate cancer communication were analyzed using multiple-group structural equation modeling.

Results

Regardless of race, patient-HCP communication was related positively to interpersonal treatment by the HCP, HCP's contextual knowledge of the patient, and prostate cancer communication. More positive patient-HCP communication was related to more satisfaction with health care services. Racial differences were significant in the relationships between patient-HCP communication and prostate cancer communication.

Conclusion

Content and interpersonal relationships are important aspects of patient-HCP communication and affect patient satisfaction with oncologic care for prostate cancer.

Practice implications

HCPs need to integrate the transfer of information with emotional support and interpersonal connection when they communicate with men with newly diagnosed prostate cancer.     

When the safety net of treatment has been removed: Patients’ unmet needs at the completion of treatment for haematological malignancies

Objective

To determine patients’ information, emotional and support needs at the completion of treatment for a haematological malignancy.

Methods

A self-report questionnaire was mailed to 113 adult patients.

Results

Sixty-six questionnaires were returned. The most frequently endorsed patient needs related to care co-ordination and help to manage the fear of recurrence. The most frequently endorsed unmet needs included managing the fear of recurrence, the need for a case-manager and the need for communication between treating doctors. Predictors of unmet needs included younger patients (p = 0.01), marital status (p = 0.03) and employment (p = 0.03). Almost two-thirds of patients (59%) reported they would have found it helpful to talk with a health care professional about their experience of diagnosis and treatment at the completion of treatment and endorsed significantly more need in the arenas of Quality of Life (p = 0.03) and Emotional and Relationships (p = 0.04).

Conclusion

This study provides valuable data on haematological cancer patients’ needs in the first 12 months of finishing treatment. It appears that many needs emerge or remain unresolved at this time.

Practice implications

An opportunity for patients to talk with a health professional about making the transition from active treatment to extended survivorship may be helpful.     

Health information needs and health-related quality of life in a diverse population of long-term cancer survivors

Objective

To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors.

Methods

We analyzed health information needs from 1197 cancer survivors 4–14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined.

Results

Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P < 0.05).

Conclusion

These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL.

Practice Implications

Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information.     

Supportive care needs in patients with cardiovascular disorders

Objectives

Unmet medical needs are a focus in cardiovascular disorder (CVD) research. However, few studies have investigated patients’ perceived needs. The present study examined supportive care needs in patients with CVD and their relation to health characteristics.

Methods

In total 260 in-patients with CVD were consecutively assessed with the supportive care needs survey. Primarily, frequency and content of unmet needs were examined. Secondarily, CVD-diagnoses were compared and correlations with risk factors, treatment characteristics, mood-state and quality of life were analyzed.

Results

Supportive care needs were indicated by 21% of all patients: unmet health information (37%) and psychological (23%) needs were most frequent. The number of unmet needs did not differ between most CVD-diagnoses. Unmet needs were not related to cardiac risk factors. However, treatment characteristics (r = .17–.23, p < .01), anxiety (r = .44–.71, p < .01), depression (r = .38–.63, p < .01), physical (r = .21–.47, p < .01) and mental (r = .29–.65, p < .01) quality of life were associated with unmet needs.

Conclusions

Supportive care needs are common in patients with CVD. They are based on patients’ treatment characteristics, emotions and subjective well-being rather than on cardiac factors.

Practice implications

Needs assessments in patients with CVD could detect unmet needs, enhance patient education and communication and, therefore, effectively target patients’ perceived needs and medical needs.     

Cancer patients’ information needs the first nine months after diagnosis

Objective

Cancer patients’ information needs about disease, diagnostic tests, treatments, physical care, and psychosocial resources during treatment are examined.

Methods

Information needs of newly diagnosed, Stages II-IV cancer patients receiving treatment (N = 138) were studied over nine months. Information needs were assessed using The Toronto Informational Needs Questionnaire (TINQ). There are five subscales for the TINQ: disease, diagnostic tests, treatment, physical and psychosocial. Health literacy and amount of information wanted were also measured. A repeated measures, univariate two-level model for longitudinal data was analyzed. Separate models for each subscale were constructed and covariates were examined simultaneously for associations with information needs. Models were estimated using FIML.

Results

Although significant reduction of needs was observed over time, total information needs remained high throughout. Gender (women), age (younger), race (African American), education (lesser), and marital status (married) were significantly associated with higher information needs over time. Cancer type and stage were not significantly associated.

Conclusion

Cancer patients’ information needs decrease yet remain high over time. Patients’ information needs are highest near diagnosis and change throughout the course of their treatment.

Practice implications

As patients obtain and understand information, they will continue to need information in new areas relevant to their care.     

Understanding health care communication preferences of veteran primary care users

Objective

To assess veterans’ health communication preferences (in-person, telephone, or electronic) for primary care needs and the impact of computer use on preferences.

Methods

Structured patient interviews (n = 448). Bivariate analyses examined preferences for primary care by ‘infrequent’ vs. ‘regular’ computer users.

Results

Only 54% were regular computer users, nearly all of whom had ever used the internet. ‘Telephone’ was preferred for 6 of 10 reasons (general medical questions, medication questions and refills, preventive care reminders, scheduling, and test results); although telephone was preferred by markedly fewer regular computer users. ‘In-person’ was preferred for new/ongoing conditions/symptoms, treatment instructions, and next care steps; these preferences were unaffected by computer use frequency. Among regular computer users, 1/3 preferred ‘electronic’ for preventive reminders (37%), test results (34%), and refills (32%).

Conclusion

For most primary care needs, telephone communication was preferred, although by a greater proportion of infrequent vs. regular computer users. In-person communication was preferred for reasons that may require an exam or visual instructions. About 1/3 of regular computer users prefer electronic communication for routine needs, e.g., preventive reminders, test results, and refills.

Practice implications

These findings can be used to plan patient-centered care that is aligned with veterans’ preferred health communication methods.