CONTEXT: Despite the potential benefits and the desire for end-of-life communication, it rarely occurs in the familial context. Relatives play a significant role in the communication process; thus, it is crucial to understand the difficulties that they face. OBJECTIVES: To develop and evaluate the relatives' version of the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI-r) regarding its factor structure, reliability and validity. METHODS: Relatives of patients with advanced cancer were recruited in a German hospital. The factor structure of the questionnaire was explored. Construct validity was examined through correlations between the DEOLD-FI-r and measures of avoidance of cancer communication, quality of life, distress, and experienced difficulty during end-of-life discussions. Additionally, we examined the group difference between those who had and had not engaged in the conversation. RESULTS: About 111 relatives completed the survey (mean age 55.5 years, 52% female). The final version of the DEOLD-FI-r contained 23 items (α = .92). The exploratory factor analysis resulted in three factors explaining 74% of the variance. Each factor described another dimension of potential communication barriers in end-of-life discussions: 1) Own emotional burden, 2) Relational and patient-related difficulties, 3) Negative attitudes. Construct validity was supported by correlations consistent with our hypotheses and less reported communication difficulty by those who had already talked about the end-of-life with their relative (t(106) = 5.38, P < .001, d = 0.8). CONCLUSION: The results indicate that the DEOLD-FI-r is a valid and reliable instrument for the systematic assessment of difficulties in family end-of-life communication. By focusing on relatives, it complements the already validated patient-version.
Neoplasms , Quality of Life , Humans , Female , Middle Aged , Male , Reproducibility of Results , Death , Surveys and Questionnaires
CONTEXT: Research about the end of life with the help of patient-reported outcomes in vulnerable populations such as cancer patients is needed but is potentially burdensome and can therefore raise concerns. OBJECTIVES: To assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables. METHODS: In a cross-sectional design response burden was assessed using a six-item instrument after completion of a survey that concerned the end of life. Associations with age, gender, type of care (curative/palliative), years since diagnosis, distress, depression, anxiety, death anxiety, readiness for end-of-life conversations, and readiness for advance care planning were explored via correlational analyses and multiple regressions. Burden due to the topic of end-of-life and completing questionnaires in general was compared. RESULTS: A total of 269 cancer patients (mean age 61.4 (SD =12.3); 59.5% male; 58.4% in palliative care) completed the survey in a German hospital. The majority did not report response burden; 29.7% reported at least some burden due to study participation. The multiple regression (F [10,26] = 9.97, p < 0.001) indicated that stable predictors of response burden were higher death anxiety (ß = 0.4), lower readiness to talk about one's end of life (ß = -0.34) and higher age (ß = 0.23). No additional subjective burden due to the topic of end-of-life was reported. CONCLUSION: The reported response burden seems acceptable since it was generally low. However, a subgroup did report some burden. Minimising burden and enhancing participants' benefits without compromising the research quality should further influence study designs in this field.
Neoplasms , Quality of Life , Humans , Male , Middle Aged , Female , Cross-Sectional Studies , Neoplasms/therapy , Surveys and Questionnaires , Death
Communication in neonatal intensive care units and the relationship between families and staff have been reported to influence parental mental well-being. Research has also shown an impact of parental educational level on their well-being. However, whether different educational levels result in different reactions to breaking bad news (BBN) by physicians remains unanswered so far. We therefore examined the impact of parental level of education on their mental state after a BBN conversation and their relation to physicians. A prospective quantitative survey was conducted amongst 54 parents whose preterm or term infants were hospitalized in three German neonatal units. Parental education was classified as low (lower secondary/less (1), n: 23) or high (higher secondary/more (2), n: 31). Parents answered questions about certain aspects of and their mental state after BBN and their trust in physicians. The two groups did not differ significantly in their mental condition after BBN, with both reporting high levels of exhaustion and worries, each (median (min;max): (1): 16 (6;20) vs. (2): 14 (5;20), (scaling: 5-20)). However, lower-educated parents reported a lower trust in physicians (median (min;max): (1): 2 (0;9) vs. (2): 1 (0;6), p < 0.05 (scaling: 0-10)) and felt less safe during BBN (median (min;max): (1): 15 (9;35) vs. (2): 13 (9;33), p < 0.05). Only among higher-educated parents was trust in physicians significantly correlated with the safety and orientation provided during BBN (r: 0.583, p < 0.05, r: 0.584, p < 0.01). Concurrently, only among less-educated parents was safety correlated with the hope conveyed during BBN (r: 0.763, p < 0.01). Therefore, in BBN discussions with less-educated parents, physicians should focus more on giving them hope to promote safety.
OBJECTIVES: Advance care discussions are a useful communication tools for medical preferences and beneficial for shared decision-making processes in hospital settings. The present study developed the first screening tool for need for advance care planning (ACP). METHODS: In phase 1 (n=92), items were evaluated using feasibility analysis and item reduction. In phase 2 (n=201), reduced screening items were analysed for predictive value of need for ACP. Statistical analysis included receiver-operating characteristics analysis (area under the curve>0.80), optimal cut-off based on sensitivity and specificity, interpretation of OR and construct validity using correlation with death anxiety, communication avoidance within families and trust based on the relationship with the treating physician. RESULTS: Participants in both phases were approximately 60 years old with non-curative prognosis. After item reduction, predictive values of four possible items with good item difficulty and discrimination were compared for mild, moderate and great levels of death anxiety. A two-item combination of I am burdened by thoughts of an unfavourable course of the disease and I am burdened by the feeling of being ill-prepared for the end of life showed best prediction of death anxiety and communication avoidance. Clinical cut-off at sum-score ≥6 was of high sensitivity (95%) and specificity (81%). Previous use of social support and readiness for ACP was related to higher chance of interest in ACP. CONCLUSION: Screening for need of ACP is possible with two objective items and one subjective item. Positive screening therefore indicates when to offer ACP discussions and provides routine estimation of ACP need in clinical practice.
Objective: This study investigated and compared the attitudes of healthy Iranian individuals (n = 302) in forms of two groups of caregivers and non-caregivers of cancer patients about the communication with cancer patients, and their personal wish to know the diagnosis if they ever had cancer. In addition, this study aimed to identify how many participants in the caregivers' group had spoken with their family member affected by cancer about their illness. Methods: Caregivers (50.7%) and non-caregivers (49.3%) responded to two questionnaires regarding their general attitudes about communicating with cancer patients, and their willingness to know about their illness if they had cancer. Results: The majority of participants (92.8%), especially in the caregiver group, agreed with the right of patients to know the diagnosis and prognosis, and also wished to know if they ever had cancer. However, around 64% of caregivers never talked about cancer with the affected patients. Conclusion: Participants generally believed that patients have the right to know the diagnosis and prognosis, and they also wished to know if they ever had cancer. However, in reality many cancer patients are not included in communication sessions in Iran. Health professionals should focus on how to create a balance between medical bioethics with cultural influences on communication with patients.
Background: End-of-life (EOL) communication is often avoided, especially among young adults. Negative expectations concerning EOL conversations with relatives or significant others are one major reason. Objective: To investigate how best to violate negative expectations concerning EOL conversations by identifying predictors of coping with expectation violations in this context. Methods: Vignettes describing expectation violations in the context of EOL communication were presented to a sample of 261 university students. In a first experiment, the credibility of the expectation-disconfirming information was manipulated. In a second experiment, the valence of the disconfirming evidence was manipulated. As outcome measures, the subjective likelihood of two different responses to the expectation violation was assessed: (1) ignoring the disconfirming evidence (immunization) and (2) changing expectations (accommodation). Results: Overall, participants experiencing a worse-than-expected event showed more immunization [F(1, 257) = 12.15, p < 0.001, ηp = 0.05], while participants experiencing a better-than-expected event showed more accommodation [F(1, 257) = 30.98, p < 0.001, ηp = 0.11]. Participants with higher fear of death [F(1, 257) = 12.24, p < 0.001, ηp = 0.05] as well as higher death avoidance tendencies [F(1, 257) = 17.16, p < 0.001, ηp = 0.06] showed less accommodation in response to a better-than-expected event. Conclusion: In general, young adults appear to update their expectations quickly in response to unexpectedly positive experiences in the context of EOL communication. However, individuals with higher fear of death and higher death avoidance tendencies appear to be at higher risk of maintaining negative expectations despite disconfirming evidence.
OBJECTIVE: Little is known about the quality of receiving bad news (BN) for women diagnosed with cervical neoplasia. We evaluated adherence to the SPIKES protocol in three cohorts of women with different stages of the disease and treatment modalities. PATIENTS AND METHODS: We included women with cervical cancer who underwent radical vaginal trachelectomy (RVT group, n = 110), radical hysterectomy or chemo-radiation (HE/RCT group, n = 101), and women with CIN 3 treated by loop excision (CIN group, n = 108). We asked the participants about how they received the bad news delivery in reality and how they would envision an ideal communication process based on the main items of the SPIKES protocol. The participants filled out a questionnaire with 38 items of the Marburg Breaking Bad News (MABBAN) Scale representing the six SPIKES subscales. RESULTS: Only 72% of all patients reported being satisfied with their BBN experience. The following factors were considered important by 90% of the patients: an undisturbed atmosphere, taking enough time, coherent explanation of the disease, and the possibility to ask questions. However, the reality of their experiences fell significantly short of their expectations. Asking about the patient's knowledge of the disease, addressing their concerns, allowing them to show emotions, providing clarity about the change in quality of life, informing them about alternative therapies, and involving them in further planning were also significantly lacking in the actual BBN encounters compared to the patients' preferences. The experience of RVT patients was more negative compared to the HE/RCT patients (p = 0.036). The CIN patients had an overall satisfactory impression (p < 0.0001). CONCLUSION: The process of breaking bad news in German women diagnosed with cervical neoplasia requires substantial improvement. The SPIKES protocol can be used as a guideline for enhancement but should be supplemented by incorporating a second consultation as the norm rather than the exception. Continuous monitoring and improvement of the quality of BBN is recommended for all oncologic institutions, utilizing the MABBAN questionnaire as a valuable tool.
Physician-Patient Relations , Uterine Cervical Neoplasms , Humans , Female , Uterine Cervical Neoplasms/therapy , Quality of Life , Patient Preference , Communication
BACKGROUND: Advance care planning (ACP) can help to elicit cancer patients' preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. The presented study, therefore, aims to explore cancer patients' expectations of ACP. METHODS: Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. RESULTS: We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. CONCLUSION: Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.
Advance Care Planning , Neoplasms , Terminal Care , Humans , Motivation , Advance Directives , Patient Preference , Death , Neoplasms/therapy
OBJECTIVES: Little is known about parents' preferences in breaking bad news (BBN) in neonatology. The study was aimed at comparing parents' experiences with their first BBN discussion with a neonatologist/pediatric surgeon to their personal preferences. METHODS: We conducted a quantitative survey amongst 54 parents of hospitalized preterm or term infants with severe diseases in two medium-size and one small German neonatal units. Parents answered self-rated questions on how they perceived BBN during their infant's hospital stay, asking for procedure and perception of BBN, their preferences and satisfaction with BBN. RESULTS: Overall satisfaction with BBN was moderate to high (median (min-max): 8 (1-10) on a 1-10-Likert scale). A compassionate way of disclosure correlated highest with overall satisfaction with BBN. Thorough transmission of information in an easy to understand manner emerged as another crucial point and correlated significantly to satisfaction with BBN, too. The study revealed that it was highly important for parents, that physicians had good knowledge of the infant and the course of his/her disease, which was only met in a minority of cases. Moreover, there was a major discrepancy between expected and observed professional competence of the delivering physicians. Additionally, physicians did not set aside sufficient time for BBN and parents reported a lack of transporting assurance and hope. CONCLUSIONS: In BBN physicians should draw greatest attention to ensure understanding in parents, with good knowledge of child and disease and sufficient time in a trustworthy manner. Physicians should focus on transporting competence, trust and gentleness.
Intensive Care Units, Neonatal , Truth Disclosure , Humans , Infant, Newborn , Infant , Child , Male , Female , Parents , Surveys and Questionnaires , Neonatologists , Communication , Physician-Patient Relations
This study aimed to estimate the prevalence of prolonged grief (PG) during the COVID-19 pandemic and to analyze associated variables. 142 family members of patients who died during the lockdown at a hospital were surveyed 6 months after the death. Prolonged grief, depression and anxiety, grief rumination, and loss-related variables were captured. Logistic regression analyses were conducted to detect the associated variables of PG symptoms. Prolonged grief was present in 44.4% of the bereaved. 76.2% of the relatives reported feeling distressed due to visitor restrictions, and the majority of them were unable to bid farewell to their family member at the time of death. Pastoral or psychological care was also lacking. Low education (p < 0.001), emotional closeness (p = 0.007), loss of a spouse (p < 0.001), inability to bid farewell after death (p = 0.024), feeling of threat due to the pandemic (p < 0.001), depression (p = 0.014), and anxiety (p = 0.028) were significantly associated with prolonged grief.
INTRODUCTION: The effectiveness of psychotherapy in depression is subject of an ongoing debate. The mechanisms of change are still underexplored. Research tries to find influencing factors fostering the effect of psychotherapy. In that context, the dose-response relationship should receive more attention. Increasing the frequency from one to two sessions per week seems to be a promising start. Moreover, the concept of expectations and its influence in depression can be another auspicious approach. Dysfunctional expectations and the lack of their modification are central in symptom maintenance. Expectation focused psychological interventions (EFPI) have been investigated, primarily in the field of depression. The aim of this study is to compare cognitive behavioural therapy (CBT) once a week with an intensified version of CBT (two times a week) in depression as well as to include a third proof-of-principle intervention group receiving a condensed expectation focused CBT. METHODS AND ANALYSIS: Participants are recruited through an outpatient clinic in Germany. A current major depressive episode, diagnosed via structured clinical interviews should present as the main diagnosis. The planned randomised-controlled trial will allow comparisons between the following treatment conditions: CBT (one session/week), condensed CBT (two sessions/week) and EFPI (two sessions/week). All treatment arms include a total dose of 24 sessions. Depression severity applies as the outcome variable (Beck Depression Inventory II, Montgomery Asberg Depression Rating Scale). A sample size of n=150 is intended. ETHICS AND DISSEMINATION: The local ethics committee of the Department of Psychology, Philipps-University Marburg approved the study (reference number 2020-68 v). The final research article including the study results is intended to be published in international peer-reviewed journals. TRIAL REGISTRATION NUMBER: German Clinical Trials Registry (DRKS00023203).
Cognitive Behavioral Therapy , Depressive Disorder, Major , Humans , Depressive Disorder, Major/therapy , Motivation , Depression/therapy , Cognitive Behavioral Therapy/methods , Psychotherapy/methods , Treatment Outcome , Randomized Controlled Trials as Topic
BACKGROUND: Patients' expectations, as a central mechanism behind placebo and nocebo effects, are an important predictor of health outcomes. Yet, theoretically based generic assessment tools allowing for an integrated understanding of expectations across conditions and treatments are lacking. Based on the preliminary 35-item version, this study reports the development and validation of the Treatment Expectation Questionnaire (TEX-Q), a generic, multidimensional self-report scale measuring patients' expectations of medical and psychological treatments. METHODS: The TEX-Q was developed in a validation sample of n = 251 patients undergoing different treatments using exploratory factor analyses and item analyses, as well as analysis of convergent and divergent validity. Confirmatory factor analysis was conducted in an independent sample of n = 303 patients undergoing cancer treatment. Two-weeks test-retest reliability was assessed in n = 28 psychosomatic outpatients. RESULTS: Factor analyses revealed six theoretically founded stable subscales. The TEX-Q assesses expectations of treatment benefit, positive impact, adverse events, negative impact, process and behavioural control with a total of 15 items. Results for the subscales and the sum score indicated good internal consistency (α = .71-.92), moderate to high test-retest reliability (r = .39-.76) as well as good convergent validity with regard to other expectation measures (r = .42-.58) and divergent validity with regard to measures of generalized expectations (r < .32) and psychopathology (r < .28). CONCLUSIONS: While further validation is needed, the results suggest that the TEX-Q is a valid and reliable scale for the generic, multidimensional assessment of patients' treatment expectations. The TEX-Q overcomes constraints of ad-hoc and disease-specific scales, while allowing to compare the impact of different expectation constructs across conditions and treatments.
Motivation , Humans , Reproducibility of Results , Psychometrics , Surveys and Questionnaires , Self Report
OBJECTIVES: The objective of this study is to develop a care pathway for a hospital-based advance care planning service for cancer patients. METHODS: A web-based modified Delphi study consulted an expert panel consisting of a convenience sample of stakeholders including professionals with a special interest in advance care planning as well as a 'public and patient involvement group'. After generating ideas for core elements of a care pathway in the first round, numerical ratings and rankings informed the multi-professional research steering group's decision process eventually resulting in a final pathway. RESULTS: The 41 participants in the Delphi study identified 177 potential core elements of the pathway in the first round. In two further rounds, consensus was reached on a final version of the pathway with 148 elements covering the 10 domains: prerequisites, organisation and coordination, identification and referral, provision of information, information sources, family involvement, advance care planning discussion, documentation, update and quality assurance. CONCLUSION: We propose a care pathway for advance care planning for hospital patients with cancer based on the results of a Delphi study that reached consensus on an implementation strategy. Our study pioneers the standardisation of the process and provides input for further policy and research with the aim of aligning cancer patients' care with their preferences and values.
Advance Care Planning , Neoplasms , Humans , Delphi Technique , Critical Pathways , Hospitals , Neoplasms/therapy
OBJECTIVE: Fear of cancer recurrence or progress is strongly related to death anxiety (DA) in cancer patients, but due to lack of conceptualization and measurement methods, the relationship was not analyzed quantitatively before. The aim of the present study was to investigate the conceptual relationship of both constructs, with DA expected to be the general construct. METHODS: Cancer patients (N = 121) participated in an online study. They provided information on socio-demographical, medical and psychological measures including DA and fear of cancer recurrence or progression (FoP-Q-SF). Relation of constructs was assessed using a two-step process: Confirming individual construct structure with confirmatory factor analysis, including correlation of constructs and modification of measurement model, followed by structural equation modeling and comparison of structure models for best model fit. RESULTS: The measurement model was modified to include three residual correlations within and between constructs. Comparison of structure models supported a bifactor structure with DA as general factor and fear of recurrence or progression as group factor: SBχ2 (173) = 207.74 (p < 0.05), SB = 1.538, relative χ2 = 1.2, rRMSEA = 0.05 [0.01, 0.07] (p > 0.05), SRMR = 0.07, CFI = 0.94, AIC = 7543.60. CONCLUSIONS: DA can be interpreted as general factor to fear of cancer recurrence or progression. Psychological interventions to reduce emotional burden of cancer patients need to focus additionally on existential threat and individual fears regarding DA.
Fear , Neoplasms , Anxiety/psychology , Fear/psychology , Humans , Neoplasms/psychology , Recurrence , Surveys and Questionnaires
End-of-life (EOL) conversations with relatives or significant others are often avoided. One reason can be negative expectations regarding these conversations. The present study was conducted to develop and initially validate the End-of-Life Conversations - Expectations Scale (EOLC-E). An exploratory factor analysis (N = 307) resulted in a 20-item version with three distinct dimensions: expected own emotional burden (α = .92), expected other person's emotional burden (α = .94) and communication self-efficacy (α = .89). The EOLC-E total score correlated significantly with communication apprehension about death (r = .62), fear of death (r = .58), death avoidance (r = .52) as well as readiness for end-of-life conversations (r = -.38) and occurrence of previous conversations (r = -.29). Results suggest that the EOLC-E is a reliable and valid instrument to assess death and dying communication expectations. This measure has utility in communication research focusing on optimizing expectations and increasing EOL communication.
Emerging numbers of SARS-CoV-2 infections are currently combated with a third vaccination. Considering the different vaccination regimens used for the first two vaccine doses, we addressed whether the previous vaccination influences the immune response to the booster. Participants for this prospective study were recruited from among healthcare workers. N = 20 participants were previously vaccinated with two doses of BNT162b2, and n = 53 received a priming dose of ChAdOx1-nCoV-19 followed by a BNT162b2 dose. Participants were vaccinated with a third dose of BNT162b2 in December 2021. Antibody concentrations were determined after vaccination, and in a subset of n = 19 participants, T cell responses were evaluated. Anti-S concentrations and IFNγ production increased during the first 21 days. The choice of the first and second vaccineshad no influence on the final outcome of the booster vaccination. Before booster vaccination, antibody concentrations were lower for older participants but increased more strongly over time.
OBJECTIVES: During serious illness, open communication with caregivers can ensure high-quality care. Without end-of-life communication, caregivers may become surrogates and decision-makers without knowing the patient's preferences. However, expectations and fears may influence the initiation of communication. The present study investigates differences between palliative patients with cancer and caregivers regarding expectations of end-of-life communication, end-of-life fears and experiences with end-of-life communication. DESIGN: A cross-sectional study using a semi-structured interview and a paper-based questionnaire SETTING: University Hospital in Germany. PARTICIPANTS: 151 participants: 85 palliative cancer patients (mean age: 62.8 years, 65.9% male) and 66 caregivers (mean age: 56.3 years, 28.8% male). PRIMARY AND SECONDARY OUTCOME MEASURES: Expectations, end-of-life fears and experiences of end-of-life discussions. RESULTS: Patients and caregivers wish for the patient to be self-determined. In general, participants reported more positive than negative expectations of end-of-life discussions. Importantly, concerns about emotionally burdening other person was rated much higher in an informal context than a professional context (F(1,149)=316 958, p<0.001, ηp²=0.680), even though the emotional relief was expected to be higher (F(1,149)=46.115, p<0.001, ηp²=0.236). Caregivers reported more fears about the last period of life and more fears about end-of-life discussions than palliative patients, whereas palliative patients tended to avoid the topics of death and dying to a greater extent. CONCLUSIONS: There seems to exist a 'self-other' asymmetry: palliative patients and their caregivers expect substantial personal relief when openly talking about end-of-life issues, but also expect the other person to be burdened by such communication. Professionals repeatedly need to initiate end-of-life communication.
Neoplasms , Terminal Care , Caregivers/psychology , Communication , Cross-Sectional Studies , Death , Fear , Female , Humans , Male , Middle Aged , Motivation , Neoplasms/therapy , Palliative Care/psychology , Terminal Care/psychology
Objective: For every health behavior, readiness to engage is a necessary and crucial foundation for following conversations, interventions or behavior changes. The present study aims to support a one-factor structure for the Readiness for End-of-Life Conversations (REOLC) scale (Berlin et al., 2021) in a population of cancer patients (N = 295). Methods: For validation purposes, data of patients participating in a screening development study at a university clinic was used. Model adequacy was analyzed with structural equation modelling and controlled for with goodness of fit indices: χ2-test, SRMR, rRMSEA. Discriminant and convergent validity were assessed with correlations of REOLC and psychological or health behavior measures. Results: Factor structure was supported with good fit indices, discriminant validity and convergent validity. Readiness correlated significantly with age and reported death anxiety. Conclusion: The REOLC scale is a reliable instrument to assess cancer patients' readiness for end-of-life conversations. Future studies may further address moderating and mediating effects of socio-demographic, medical and psychological factors. Innovation: The assessment of readiness may further indicate anxiety levels of cancer patients and enables practitioners to provide interventions accordingly. However, in a clinical setting and especially for patients with a palliative prognosis, end-of-life care conversations may need to be introduced early.
BACKGROUND: Impaired readiness may hinder purposeful advance care planning in cancer patients. To reduce barriers to participation in end-of-life decision-making, a collaborative intervention was developed combining a psycho-oncological approach of dignity-based and cognitive-behavioural interventions, followed by a standardised advance care planning-process. AIM: To evaluate the novel collaborative advance care planning-approach by synthetising cancer patient and carer perspectives on communicational and relational effects. DESIGN: As a sub-project of a mixed-methods evaluation study, we conducted an inductive content analysis of qualitative interviews with advanced cancer patients and caregivers to deeply explore the focused impact of a collaborative advance care planning-approach on communication and relationship dynamics. SETTING/PARTICIPANTS: Twelve patients with advanced cancer and 13 carers who participated in a collaborative advance care planning-intervention. RESULTS: The collaborative advance care planning-approach was consistently evaluated positively by participants. Transcriptions of the semi-structured interviews were coded, analysed and merged under three main themes concerning communicational and relationship dynamics: action readiness, content readiness and impact on future communication and relationship. CONCLUSIONS: The novel intervention served to foster individual readiness - including action and content readiness - for advance care planning-discussions by addressing highly individualised barriers to participation, as well as specific end-of-life issues. In addition, societal readiness could be promoted. Although the brief psycho-oncological intervention could not fully meet the needs of all participants, it can be used to develop individual psychotherapeutic strategies to improve different facets of readiness. The collaborative advance care planning-approach might require more time and human resources, but could pioneer successful advance care planning.
Advance Care Planning , Neoplasms , Terminal Care , Caregivers , Communication , Humans , Neoplasms/therapy , Qualitative Research
CONTEXT: Open end-of-life communication is especially important within the patient-family unit of care and can positively affect their medical, psychological, and relational outcomes. Nevertheless, end-of-life discussions are often perceived as difficult and avoided. OBJECTIVES: To develop and validate the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI) to allow a systematic assessment of reasons why people shy away from end-of-life discussions. METHODS: Patients with advanced cancer were recruited and completed the DEOLD-FI and measures of avoidance of cancer communication, quality of life and distress, and the experienced difficulty as well as the occurrence of end-of-life discussions. Standard item analyses and an exploratory factor analysis were conducted. Construct validity was analysed through associations between the DEOLD-FI and the aforementioned measures. RESULTS: Questionnaires were obtained from 112 participants (53% response rate; male 54%, mean age 64.9 years [range 33-94]). In the final 23-item version two factors were extracted: 'emotional burden due to end-of-life discussions' (α = 0.90) and "negative attitudes towards end-of-life discussions" (α = 0.91) explaining 69% of the variance (total scale α = 0.93). Construct validity was supported by its significant correlations with the reported difficulty in end-of-life discussions (r = 0.42) and avoidance of cancer communication (r = 0.40 to r = 0.46) and insignificant correlations with quality of life (r = -0.11), distress (r = 0.16), and physical well-being (r = 0.02). Those who had already engaged in end-of-life discussions showed significantly fewer communication barriers. CONCLUSION: Results provide evidence that the DEOLD-FI is a valid and reliable instrument for the assessment of difficulties in end-of-life discussions. Benefits for clinical practice and research are discussed.
Neoplasms , Terminal Care , Adult , Aged , Aged, 80 and over , Death , Humans , Male , Middle Aged , Neoplasms/therapy , Quality of Life , Self Report , Surveys and Questionnaires
