Facilitating collaborative and effective family involvement in the cancer setting: Guidelines for clinicians (TRIO Guidelines-1)

Objective

Family caregivers regularly attend medical consultations and are often involved in decision-making; however, there are few practical strategies to guide effective communication for the clinician-patient-family trio. We aimed to develop and evaluate the first comprehensive guidelines for oncology physicians and nurses, on how to positively and effectively involve family caregivers of adult patients in consultations and patient care (TRIO Guidelines-1) and how to manage challenging interactions with family caregivers (TRIO Guidelines-2).

Managing challenging interactions with family caregivers in the cancer setting: Guidelines for clinicians (TRIO Guidelines-2)

Objective

Family caregivers can, at times, add complexity to clinical encounters. Difficult family caregivers and dynamics may: derail consultation communication, reduce patient autonomy, and compromise effective clinical care. A paucity of practical strategies guiding effective clinician-family communication exists. This study aimed to develop and evaluate the first comprehensive, evidence-based guidelines (the TRIO guidelines) for oncology physicians and nurses to better manage several complex/challenging situations involving family members.

Preferences for surrogate designation and decision-making process in older versus younger adults with cancer: A comparative cross-sectional study

Objective

To compare the preferences of older (≥70 years old) versus younger (<70 years old) cancer patients regarding surrogate designation and decision making.

Treatment decision-making in the medical encounter: Comparing the attitudes of French surgeons and their patients in breast cancer care

Objectives

To explore attitudes of French surgeons and their patients towards treatment decision-making (TDM) in the medical encounter.

Methods

Surgeons involved in early stage breast cancer and their patients treated in a French cancer care network received a cross-sectional survey questionnaire containing examples of four different approaches to TDM: paternalistic, “some sharing”, informed TDM and, shared TDM.

Results

Surgeons’ interaction styles were clearly distributed among paternalistic, shared and mixed. The paternalistic approach seemed to be associated with private rather than public practice and with less professional experience. Patients reported a rather low level of participation in TDM, varying by socio-demographic characteristics. One third of patients were dissatisfied with the way their treatment decision had been made.

Conclusion

Most surgeons reported adopting the “some sharing” approach. However, one patient out of three reported that they would have liked to participate more in the TDM process.

Practice implications

Surgeons need to ask patients what their preferences for involvement in TDM are and then think about ways to accommodate both their own and patients’ preferences regarding the TDM process to be used in each encounter. In addition, decision aids could be offered to surgeons to help them discuss treatment options with their patients.     

Understanding cancer caregiver burden over time: Dyadic assessments of family cohesion,conflict and communication

ObjectivePreviously we identified three distinct cancer communication concordance groups among cancer patient-caregiver dyads. This secondary analysis examined patient and caregiver reports of family functioning (cohesion and conflict) as associated with cancer communication concordance and assessed each as independent predictors of perceived caregiver burden among hematological cancer caregivers.MethodsA case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Using the previously identified communication groups this analysis prospectively examines patient and caregiver perceptions of family cohesion and conflict and the association with burden over time.ResultsCaregiver burden decreased over time. Caregiver, but not patient perceptions of family cohesion decreased over time; decreased cohesion and increased conflict was associated with greater cancer communication discordance.ConclusionsThis work lends further support to the use of cancer communication congruence typologies for identifying potentially vulnerable dyads. Discordant cancer communication and declining caregiver perceptions of family cohesion may represent opportunities to intervene using family focused supportive services.Practice implicationsOnly caregiver perceptions of family functioning were associated with burden therefore identifying and supporting those caregivers with worsening communication and family function is important.     

The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

ObjectiveSurrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed.MethodsThis study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008).ResultsDecisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact.ConclusionFamily surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances.Practice implicationsThis review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.     

Key elements of optimal treatment decision-making for surgeons and older patients with colorectal or pancreatic cancer: A qualitative study

ObjectiveTo identify key elements of optimal treatment decision-making for surgeons and older patients with colorectal (CRC) or pancreatic cancer (PC).MethodsSix focus groups with different participants were performed: three with older CRC/PC patients and relatives, and three with physicians. Supplementary in-depth interviews were conducted in another seven patients. Framework analysis was used to identify key elements in decision-making.Results23 physicians, 22 patients and 14 relatives participated. Three interacting components were revealed: preconditions, content and facilitators of decision-making. To provide optimal information about treatments’ impact on an older patient’s daily life, physicians should obtain an overall picture and take into account patients’ frailty. Depending on patients’ preferences and capacities, dividing decision-making into more sessions will be helpful and simultaneously emphasize patients’ own responsibility. GPs may have a valuable contribution because of their background knowledge and supportive role.ConclusionStakeholders identified several crucial elements in the complex surgical decision-making of older CRC/PC patients. Structured qualitative research may also be of great help in optimizing other treatment directed decision-making processes.Practice implicationsSurgeons should be trained in examining preconditions and useful facilitators in decision-making in older CRC/PC patients to optimize its content and to improve the quality of shared care.     

The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis

Objective

To evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke survivors.

Methods

Electronic English and Chinese bibliographic databases were searched (inception to January 2012) for clinical trials. Two reviewers independently selected and appraised study quality. When possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative summary was used.

Results

Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of two individual psychoeducation programs showed a small effect on improving family functioning (SMD: −0.12; 95% CI: −0.23 to −0.01; p = 0.03). Caregivers receiving psychoeducation that aimed at equipping caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more positive influence on the caregivers’ psychosocial wellbeing and a reduced use of healthcare resources by stroke survivors.

Conclusion

Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted psychoeducation programs are needed to further examine the optimal dose and format.

Practical implications

To support caregivers across the stroke trajectory, the core skills of problem-solving and stress-coping should be included in the psychosocial interventions.     

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.     

Patient and family communication during consultation visits: The effects of a decision aid for treatment decision-making for localized prostate cancer

ObjectiveTo analyze the effects of a decision aid on improving patients’ and family members’ information giving and question asking during consultations for prostate cancer treatment decision-making.MethodsThis study is a secondary analysis of archived audio-recorded real-time consultation visits with participants from a randomized clinical trial. Participants were randomly assigned into three groups: TD—intervention targeted patient-only; TS—intervention targeted patients and family members; and control—a handout on staying healthy during treatment. We conducted content analysis using a researcher-developed communication coding system. Using SAS 9.3, we conducted Chi-square/Fisher’s exact test to examine whether information giving and question asking among patients and family members varied by groups when discussing different content/topics.ResultsCompared with those in the TS and control groups, significantly higher percentages of participants in the TD group demonstrated information giving in discussing topics about diagnosis, treatment options, risks and benefits, and preferences; and engaged in question asking when discussing diagnosis, watchful waiting/active surveillance, risks and benefits, and preferences for treatment impacts.ConclusionInformation support and communication skills training for patients were effective in improving communication during treatment decision-making consultations.Practice implicationsProviding information about prostate cancer and communication skills training empower patients and their family members.     

‘Very difficult for an ordinary guy’: Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: Findings from a UK-wide mixed methods study

Objectives

To explore experiences of treatment decision-making (TDM) amongst men diagnosed with stage 1–3 prostate cancer.

Breast and prostate cancer risk: The interplay of polygenic risk,rare pathogenic germline variants,and family history

PurposeWe aimed to investigate to what extent polygenic risk scores (PRS), rare pathogenic germline variants (PVs), and family history jointly influence breast cancer and prostate cancer risk.MethodsA total of 200,643 individuals from the UK Biobank were categorized as follows: (1) heterozygotes or nonheterozygotes for PVs in moderate to high-risk cancer genes, (2) PRS strata, and (3) with or without a family history of cancer. Multivariable logistic regression and Cox proportional hazards models were used to compute the odds ratio across groups and the cumulative incidence through life.ResultsCumulative incidence by age 70 years among the nonheterozygotes across PRS strata ranged from 9% to 32% and from 9% to 35% for breast cancer and prostate cancer, respectively. Among the PV heterozygotes it ranged from 20% to 48% in moderate-risk genes and from 51% to 74% in high-risk genes for breast cancer, and it ranged from 30% to 59% in prostate cancer risk genes. Family history was always associated with an increased cancer odds ratio.ConclusionPRS alone provides a meaningful risk gradient leading to a cancer risk stratification comparable to PVs in moderate risk genes, whereas acts as a risk modifier when considering high-risk genes. Including family history along with PV and PRS further improves cancer risk stratification.