Factors influencing illness representations and perceived adherence in haemophilic patients: a pilot study.

Illness representations of chronic patients are important to explain adherence and preventive behaviours. However, it is unclear if the patient's objective health status may influence illness representations and perceived adherence. This study explored if health status and socio-demographic characteristics influence illness representations and perceived adherence in haemophilic patients. Fifty patients (25 on-demand and 25 on prophylaxis) ageing from 13-73, completed the Illness Perceptions Questionnaire-Revised and the Morisky Medication Adherence Scale. Patients' cognitive illness representations were influenced by type of treatment, haemophilia severity, presence of inhibitor and co-morbidity. Perceived chronicity was influenced by patient's age (P = 0.021). Perceived adherence was not influenced by the health status, but was affected by the relationship status (P = 0.048). Perceived adherence was predicted by perceived chronicity (ß = 0.412; P = 0.003) and by emotions (ß = -0.308; P = 0.023). Patient's health status seems to affect cognitive illness representations but not perceived adherence. Perceived chronicity and negative emotions, which affected perceived adherence, were not influenced by the health status. Physician-patient communication addressing perceived chronicity and emotions rather than patients' health status may influence patient's adherence. Psycho-educational groups could be offered to promote patient's well-being and adjustment to haemophilia, and improve adherence.

Parental experience of end-of life care in the pediatric intensive care unit.

BACKGROUND: There is a considerable variability among European countries regarding the management of end-of-life (EOL) care in the pediatric critical care setting. In Italy, recommendations on these issues are available but no study has investigated the parents' experience. The aim of this study was to explore parents' experience of EOL care in a Pediatric Intensive Care Unit (PICU) in Italy. METHODS: The study was conducted in a 6-bed PICU of a university affiliated hospital in Milan. Parents of children who died between 2007-2010 after a stay of at least 24 hours were eligible to participate. Through semi-structured interviews, parents were asked to describe the story of their child's stay in the PICU, including his/her final moments. The interviews were audio-recorded, transcribed verbatim and analyzed according to the hermeneutic-phenomenology approach. RESULTS: Twelve parents of 8 children were interviewed. Four themes emerged that described the parents' experience: 1) loss of parental role; 2) lack of physical intimacy with their child; 3) ambivalence about end-of-life decisions; and 4) reclaiming the dying process. CONCLUSION: Our findings suggest that in order to improve pediatric EOL care we need to better integrate medical and parental priorities, in a shared process that allows parents to preserve their role and relationship with their child. The most critical aspect for parents was not related to the involvement (or not) in EOL decisions, but rather to the possibility of staying connected with their child during the hospitalization and at the time of death.

An interdisciplinary, family-focused approach to relational learning in neonatal intensive care.

OBJECTIVE: The aim of this study is to show the efficacy of the Program to Enhance Relational and Communication Skills-Neonatal Intensive Care Unit (PERCS-NICU). STUDY DESIGN: In this study, 74 practitioners attended workshops and completed baseline, post-training and follow-up questionnaires. RESULT: On yes/no questions, 93 to 100% reported improved preparation, communication skills and confidence post-training and follow-up. A total of 94 and 83% improved their ability to establish relationships, and 76 and 83% reported reduced anxiety post-training and follow-up, respectively. On Likert items, 59 and 64% improved preparation, 45 and 60% improved communication skills and confidence, 25 and 53% decreased anxiety and 16 and 32% improved relationships post-training and follow-up, respectively. Qualitative themes included integrating new communication and relational abilities, honoring the family perspective, appreciating interdisciplinary collaboration, personal/human connection and valuing the learning. In total, 93% applied skills learned, three-quarters transformed practice and 100% recommended PERCS-NICU. CONCLUSION: After PERCS-NICU, clinicians improved preparation, communication and relational abilities, confidence and reduced anxiety when holding difficult neonatal conversations.

Analysis of enacted difficult conversations in neonatal intensive care.

OBJECTIVE: To analyze the communicative contributions of interdisciplinary professionals and family members in enacted difficult conversations in neonatal intensive care. STUDY DESIGN: Physicians, nurses, social workers, and chaplains (n=50) who attended the Program to Enhance Relational and Communication Skills, participated in a scenario of a preterm infant with severe complications enacted by actors portraying family members. Twenty-four family meetings were videotaped and analyzed with the Roter Interaction Analysis System (RIAS). RESULT: Practitioners talked more than actor-family members (70 vs 30%). Physicians provided more biomedical information than psychosocial professionals (P<0.001), and less psychosocial information than nurses, and social workers and chaplains (P<0.05; P<0.001). Social workers and chaplains asked more psychosocial questions than physicians and nurses (MD=P<0.005; RN=P<0.05), focused more on family's opinion and understanding (MD=P<0.01; RN=P<0.001), and more frequently expressed agreement and approval than physicians (P<0.05). No differences were found across disciplines in providing emotional support. CONCLUSION: Findings suggest the importance of an interdisciplinary approach and highlight areas for improvement such as using silence, asking psychosocial questions and eliciting family perspectives that are associated with family satisfaction.