Exploring narratives on PTG in cancer patients in active vs remission phases of disease: what about a peritraumatic growth?

OBJECTIVE: The present study aims to explore post-traumatic growth in cancer patients comparing the active phase, when patients undergo different treatments, and the remission phase, characterised by periodic follow-ups and gradually return to lives outside the hospital world. METHODS: 69 cancer patients (36 in active phase and 33 in remission phase) completed an online survey narrating their growth experience related to cancer disease. A modelling emergent theme analysis was implemented for narratives of both group by means of T-Lab software. RESULTS: Four themes emerged for narratives of active phase group: 'the time of illness and the time of life (saturating the 46% of words)', 'the meaning-seeking' (21%), 'to find oneself in a battle (21%)' and 'to learn by battling' (12%). Remission phase group themes concerned 'the time of life' (40%), 'the seismic experience' (31%), 'to care for the Self and for others' (15%) and 'strength from vulnerability' (14%). CONCLUSIONS: Remission group narratives are close to PTG as defined in scientific literature, while patients in the active phase of disease narrated PTG as the attempt of including illness in their life trajectory and learning from the battle against cancer. Author suggests the definition of peritraumatic growth as a transformation process parallel to treatment phase.

The effectiveness of Dragon Boat racing on body image and traumatic symptoms of breast cancer patients.

Objective: The present study investigated the effectiveness of a Dragon Boat training program in women with breast cancer body image and traumatic distress processing. Methods: 29 breast cancer patients (M(SD) age= 51 (7.41)) voluntarily participated in a physical activity program. Seventeen (Intervention Group) enrolled in a Dragon Boat racing program, while 12 (the Control Group) individually performed alternative physical activities. Before and after the intervention, patients completed the Body Image Scale (BIS) and the Impact of Event Scale - Revised (IES-R). Results: The Intervention Group reported a decrease in Body Image negative perception (Pillai's trace = .352, F(1,27) = 14.111, p = .001; partial η2 = .951) and in traumatic symptoms (Pillai's trace = .283, F(1,27) = 10.682, p = .003; partial η2 = .883). Conclusions: Authors discuss the role of Dragon Boat racing in improving positive body image after the experience of breast cancer.

A Study on the Sense of Parental Competence, Health Locus of Control and Levels of Anxiety, Depression and Somatization in Parents of Children with Type 1 Diabetes: Evidence on a Possible Relationship.

Background: Parents of children with chronic conditions face challenges that go beyond basic care and parenting responsibilities. Parents' experiences can be influenced by perceived stress, emotional experiences, feelings of helplessness, low sense of self-efficacy, anxiety and depression, reducing their quality of life. It is therefore not surprising that parents of children with chronic illnesses are more likely to experience stress, anxiety and depression than parents of healthy children. A prevalent chronic condition is type 1 diabetes. Methods: Parents (31 with children with type 1 diabetes diagnosis and 71 with children without chronic illness) were recruited to complete the measures of the Brief Symptom Inventory-18 (BSI-18), the Parent Health Locus of Control (PHLOC) and Parenting Sense of Competence (PSOC). Results: Significant differences in depression and internal locus of control were found; there was a positive correlation between internal LOC and efficacy in both samples; furthermore, there was a negative correlation between somatization and satisfaction in the experimental group. Conclusions: The ongoing experiences and challenges faced daily make parents perceive themselves as capable. Active involvement in supporting and managing the needs of child with type 1 diabetes could be a source of empowerment for the parent, contributing to the maintenance of their sense of competence. It is important, therefore, to consider the well-being and perception of the parent at a personal level, regardless of the child's situation.

Living with type 1 diabetes mellitus in emerging adulthood: A qualitative study.

OBJECTIVE: Few studies have investigated the impact of diabetes considering its effects on developmental tasks that are typical of emerging adulthood. The present study aimed to investigate how emerging adults with a chronic condition such as type 1 diabetes mellitus manage with this developmental phase. METHODS: 30 emerging adults diagnosed with diabetes (18-34 years, females = 19) took part in an autobiographical interview investigating their experience of dealing with type 1 diabetes. Narratives were analysed by means of a qualitative thematic analysis of an inductive type. RESULTS: Thematic analysis pointed out five thematic areas strictly related to the tasks of emerging adulthood: the development of intimate relationships, university life, work and plans for the future, the achievement of individual autonomy, the construction of an adult identity and family planning. Every thematic area reported a number of subthemes related to specific difficulties experienced by participants in reaching their developmental tasks due to chronic disease. Emerged themes considered both negative and positive outcomes of living with type 1 diabetes mellitus in emerging adulthood, such as a personal growth related to identity development. CONCLUSION: The authors discussed results considering complexities and resources associated with diabetes in the light of developmental tasks of emerging adulthood.

Investigating PTG in Cancer Patients: The Role of Time Dimension in the Experience of Personal Growth.

This study explored the experience of growth related to being a cancer patient by implementing a thematic analysis. An online questionnaire was completed by 69 patients narrating their growth experience related to cancer. Collected narratives were analyzed by running a deductive thematic analysis, starting from the five domains of the Post-Traumatic Growth Inventory (PTGI) and searching for the presence or absence of topics. Descriptive statistics and correlational analysis were performed. The five factors of the PTGI were identified in the narratives. The thematic analysis we performed defined a further theme that we labeled the "time dimension", which saturated 37.7% of the entire sample. The presences of four sub-themes related to the "time dimension" were also found: "tracing a new temporal rhythm", "the value of deserved time", "facing the caducity of life" and "a view on the future". Each sub-theme significantly correlated with the theme of the "time dimension". This emergent theme does not correlate in our results with other domains of personal growth in cancer previously described in the scientific literature, emerging as an independent variable not significantly associated with other domains of post-traumatic growth. Our results suggest further investigation in the role of the time dimension in the practical and emotional experience of growth with regard to cancer.

Positive and Negative Experiences of Living in COVID-19 Pandemic: Analysis of Italian Adolescents' Narratives.

INTRODUCTION: Despite a growing interest in the field, scarce narrative studies have delved into adolescents' psychological experiences related to global emergencies caused by infective diseases. The present study aims to investigate adolescents' narratives on positive and negative experiences related to COVID-19. METHODS: Italian adolescents, 2,758 (females = 74.8%, mean age = 16.64, SD = 1.43), completed two narrative tasks on their most negative and positive experiences during the COVID-19 emergency. Data were analyzed by modeling an analysis of emergent themes. RESULTS: "Staying home as a limitation of autonomy," "School as an educational, not relational environment," the impact of a "new life routine," and experiencing "anguish and loss" are the four emergent themes for negative experiences. As for positive experiences, the four themes were "Being part of an extraordinary experience," "Discovering oneself," "Re-discovering family," and "Sharing life at a distance." CONCLUSION: Authors discuss the impact of COVID-19 on adolescents' developmental tasks, such as identity processes and autonomy acquisition.

Doctor-patient care relationship in genetic cardiomyopathies: An exploratory study on clinical consultations.

BACKGROUND: The present study aims to explore the setting of consultation and communication between physicians and patients affected by genetic cardiomyopathies, investigating how the two parts of the therapeutic relationship participate and share information. METHODS AND RESULTS: 45 adult patients affected by various cardiomyopathies took part in a prospective case study while attending consultations at a cardiologic outpatient clinic constituting an Italian referral centre for cardiomyopathies. A researcher observed the consultations, which were audio-recorded and transcribed. Transcripts were coded and an analysis of setting, type of communication implemented and participation of doctors and patients in terms of word-count and type of questions/answers was carried out. Overall word-count was significantly higher for physicians than for patients (t(44) = 9,506; p<0.001). Doctors were prone to ask closed questions (t(44) = -11,90; p<0.001) while patients preferred open answers (t(44) = 5.58; p<0.001), enriched with subjective issues related to their illness experience. Partial correlation highlights a significant positive relation between doctors' closed question and patients' open answers (r = .838; p<0.001). CONCLUSIONS: Findings emphasize patients' need for adequate time and space to share their subjective illness experience with the physician, within an approach informed by the insights and recommendations of Narrative Medicine. These findings are instrumental to improving the specific clinical setting for individuals with genetic cardiomyopathies.

Beyond the Anomaly: Where Piaget and Bruner Meet.

The aim of this work is to focus on a basic concept in Brunerian narrative theory, that of violation of canonicity, showing how it relates to other basic concepts of cognitive theories such as anomaly, expectation and relationship between constancy and variability. To reach this aim, we will firstly discuss the Piagetian theory, in particular regarding the way in which the child deals with new and interesting events moved from the need to face and produce "spectacles interessantes" by means of experiencing the violation of canonicity. We will also briefly consider some results of neurosciences studies pointing out that the constancy-variability issue is at the base of human development. Secondly, we will show the convergence between Piagetian theory and Brunerian theory of narration, producing some examples of how violation of canonicity can occur in children and adults.

Development and validation of the Family Resilience (FaRE) Questionnaire: an observational study in Italy.

OBJECTIVE: Develop and validate an instrument to assess family resilience and, more specifically, the family dynamics and resources, estimating the adaptation flexibility to cancer disease. Cohesion, communication, coping style and relational style were considered as critical functional areas in the construction of the instrument. DESIGN: Two cross-sectional studies. Study 1: identification of factorial structure of the questionnaire in two samples with different cancer sites. Study 2: validation of the questionnaire in patients with cancer in two different phases of their therapeutic pathway. PARTICIPANTS AND SETTING: A total of 213 patients with a histologically confirmed non-metastatic breast or prostate cancer and 209 caregivers were recruited for the two studies from an oncological hospital in Italy. OUTCOME MEASURES: The Resilience Scale for Adults and the Family Resilience (FaRE) Questionnaire, developed by the researchers, were administered to all patients and caregivers who gave consent. RESULTS: In study 1, the 60-item version of the FaRE Questionnaire underwent discriminant and construct validity, internal consistency and factorial analysis. Comparisons between patient and caregiver populations showed that patients perceived higher levels of family resources (p=0.048) and that patients with prostate cancer perceived less social support compared with patients with breast cancer (p=0.002). Factor analysis demonstrated four domains: communication and cohesion, perceived social support, perceived family coping, and religiousness and spirituality. In study 2, the validity and factorial structure of the final scale, composed of 24 items, were confirmed. The Cronbach alpha of all subscales was above 82. Normative values for patients with breast cancer can provide indications of family resilience levels. CONCLUSIONS: Preliminary findings showed acceptable psychometric properties for the FaRE Questionnaire to evaluate family resilience in oncological patients and their caregivers. Further research should test its sensibility to change to assess its use as a psychoemotional monitoring tool and its validity in other medical contexts.

Optimistic bias in young adults for cancer, cardiovascular and respiratory diseases: A pilot study on smokers and drinkers.

Optimistic bias defines the tendency for human beings to underrate risk when it pertains to themselves compared with their view of risk pertaining to other people in the same conditions. The aim of this work is to investigate the optimistic bias in risk perception and health-related behaviours for three specific conditions in a young adult sample: cancer, respiratory disorders and cardiovascular diseases. Young adults showed an optimistic bias related to cancer, and to cardiovascular diseases. Our findings suggest that optimistic bias is linked to specific behavioural patterns, largely widespread in young adults, such as tobacco cigarette smoking and alcohol consumption.

A Qualitative Investigation on Patient Empowerment in Prostate Cancer.

Purpose: Men with prostate cancer often describe low levels of empowerment. eHealth interventions may represent useful tools to deliver care and education and to meet patients' needs within an empowerment framework. In order to design a platform for cancer patients' empowerment within the H2020 iManageCancer project, the perspective of the target population for the platform was assessed. The present study aims to assess the qualitative experience of prostate cancer patients during treatment in order to provide insights for clinical practice with a particular focus on the design of a web platform to promote cancer patients' empowerment. Methods: Ten patients undergoing radiation therapy treatment took part in a semi-structured interview to explore different aspects of patient empowerment. Four main thematic areas were addressed: patient-healthcare providers' communication, decision-making, needs, and resources. A qualitative approach using thematic analysis was followed. Results: Half of the patients reported little to no possibility to share information and questions with healthcare providers. With regards to decision-making, the role of healthcare providers was perceived as directive/informative, but half of the patients perceived to assume an active role in at least one interaction. Difficulties and needs included the choice of the specialist or of the structure after diagnosis, clinicians' support in self-management, surgical consequences, and side effects, preparation for radiation therapy. Resources included family and social support both from a practical and from an emotional perspective, coping style, and work schedule management. Conclusions: These results suggest that relations with healthcare providers should be supported, especially immediately after diagnosis and after surgery. Support to self-management after surgery and at the beginning of radiation therapy treatment also constitutes a priority. The adoption of a personalized approach from the beginning of prostate cancer care flow may promote patient empowerment, overcoming the aforementioned needs and mobilizing resources. The social network represents an important resource that could be integrated in interventions. These considerations will be taken into account in the design of a cancer self-management platform aiming to increase patients' empowerment.

Why Narrating Changes Memory: A Contribution to an Integrative Model of Memory and Narrative Processes.

This paper aims to reflect on the relation between autobiographical memory (ME) and autobiographical narrative (NA), examining studies on the effects of narrating on the narrator and showing how studying these relations can make more comprehensible both memory's and narrating's way of working. Studies that address explicitly on ME and NA are scarce and touch this issue indirectly. Authors consider different trends of studies of ME and NA: congruency vs incongruency hypotheses on retrieving, the way of organizing memories according to gist or verbatim format and their role in organizing positive and negative emotional experiences, the social roots of ME and NA, the rules of conversation based on narrating. Analysis of investigations leads the Authors to point out three basic results of their research. Firstly, NA transforms ME because it narrativizes memories according to a narrative format. This means that memories, when are narrated, are transformed in stories (verbal language) and socialised. Secondly, the narrativization process is determined by the act of telling something within a communicative situation. Thus, relational situation of narrating act, by modifying the story, modifies also memories. The Authors propose the RE.NA.ME model (RElation, NArration, MEmory) to understand and study ME and NA. Finally, this study claims that ME and NA refer to two different types of processes having a wide area of overlapping. This is due to common social, developmental and cultural roots that make NA to include part of ME (narrative of memory) and ME to include part of NA (memory of personal events that have been narrated).

Pediatric Blood Cancer Survivors and Tobacco Use across Adolescence and Emerging Adulthood: A Narrative Review.

Scholars underline the pivotal role of tobacco cigarette smoking in carcinogenesis process for blood tumors. A controversial debate is represented by the diffusion of tobacco use in young cancer survivors that had a previous diagnosis of blood tumor during the childhood. Compared with their peers, scientific evidence highlights that pediatric survivors have more difficult to give-up cigarette smoking. Furthermore, tobacco-smoking is frequently linked with others risk behaviors as drinking or substance abuse. In reviewing the main knowledge on this topic, authors affirm the need for increasing research on blood cancer survivors in order to depict psychological characteristics of pediatric blood cancer survivors. Improving health decision-making skills in young survivors could reduce the risk to adopt un-healthy behaviors and increase psychological wellbeing. Furthermore, authors propose tailored antismoking interventions based on the knowledge of the psychological and cognitive factors that support smoking during the transition toward emerging-adulthood.

Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information.

Health-care systems as well as legislators and society seem largely unprepared to face and manage the massive production of genetic risk information. Ethics committees and professional bodies usually do not involve the individuals directly concerned in defining guidelines for genetic risk communication. Therefore, they do not always reflect people's needs and preferences. We argue in this article that we currently experience a cultural shift in medicine where individuals' concerns and preferences regarding genetic risk information are playing a more significant role than before, and that this should have some normative implications. We are going toward a situation where individual citizens are approached as consumers by personal genomics companies [Prainsack: Account Res 2011;18:132-147]. In clinical and research contexts, individuals are also increasingly informed about their own responsibilities for counterbalancing their genetic risk by making individual health care and lifestyle choices. In this situation, communication of genetic risk information may rather be regulated like traffic and markets in which consumers' decision-making power has a fundamental role in the management and regulation of how a service should be provided, as well as in the creation of policy and legislation. We acknowledge that markets may be different depending on different genetic conditions. For example, genetic risk communication for rare diseases, where a close relationship with clinicians is of paramount significance, should be differently regulated than personal genetic profiles of complex diseases, where contributing risk factors related to lifestyle are modifiable by the individual.

Research studies on patients' illness experience using the Narrative Medicine approach: a systematic review.

OBJECTIVE: Since its birth about 30 years ago, Narrative Medicine approach has increased in popularity in the medical context as well as in other disciplines. This paper aims to review Narrative Medicine research studies on patients' and their caregivers' illness experience. SETTING AND PARTICIPANTS: MEDLINE, Psycinfo, EBSCO Psychological and Behavioural Science, The Cochrane Library and CINAHL databases were searched to identify all the research studies which focused on the Narrative Medicine approach reported in the title, in the abstract and in the keywords the words 'Narrative Medicine' or 'Narrative-based Medicine'. PRIMARY AND SECONDARY OUTCOME MEASURES: number of participants, type of disease, race and age of participants, type of study, dependent variables, intervention methods, assessment. RESULTS: Of the 325 titles screened, we identified 10 research articles fitting the inclusion criteria. Our systematic review showed that research on Narrative Medicine has no common specific methodology: narrative in Medicine is used as an intervention protocol as well as an assessment tool. Patients' characteristics, types of disease and data analysis procedures differ among the screened studies. CONCLUSIONS: Narrative Medicine research in medical practice needs to find clear and specific protocols to deepen the impact of narrative on medical practice and on patients' lives.

Health Orientation, Knowledge, and Attitudes toward Genetic Testing and Personalized Genomic Services: Preliminary Data from an Italian Sample.

Objective. The study aims at assessing personality tendencies and orientations that could be closely correlated with knowledge, awareness, and interest toward undergoing genetic testing. Methods. A sample of 145 subjects in Italy completed an online survey, investigating demographic data, health orientation, level of perceived knowledge about genetic risk, genetic screening, and personal attitudes toward direct to consumer genetic testing (DTCGT). Results. Results showed that respondents considered genetic assessment to be helpful for disease prevention, but they were concerned that results could affect their life planning with little clinical utility. Furthermore, a very high percentage of respondents (67%) had never heard about genetic testing directly available to the public. Data showed that personality tendencies, such as personal health consciousness, health internal control, health esteem, and confidence, motivation to avoid unhealthiness and motivation for healthiness affected the uptake of genetic information and the interest in undergoing genetic testing. Conclusions. Public knowledge and attitudes toward genetic risk and genetic testing among European countries, along with individual personality and psychological tendencies that could affect these attitudes, remain unexplored. The present study constitutes one of the first attempts to investigate how such personality tendencies could motivation to undergo genetic testing and engagement in lifestyle changes.

Psycho-emotional tools for better treatment adherence and therapeutic outcomes for cancer patients.

Personalized medicine should target not only the genetic and clinical aspects of the individual patients but also the different cognitive, psychological, family and social factors involved in various clinical choices. To this direction, in this paper, we present instruments to assess the psycho-emotional status of cancer patients and to evaluate the resilience in their family constructing in such a way an augmented patient profile. Using this profile, 1) information provision can be tailored according to patients characteristics; 2) areas of functioning can be monitored both by the patient and by the clinicians, providing suggestions and alerts; 3) personalized decision aids can be develop to increase patient's participation in the consultation process with their physicians and improve their satisfaction and involvement in the decision-making process. Our preliminary evaluation shows promising results and the potential benefits of the tools.