Cascade screening for beta-thalassaemia in Pakistan: relatives’ experiences of a decision support intervention in routine practice

Low uptake of cascade screening for βeta-thalassaemia major (β-TM) in the ‘Punjab Thalassaemia Prevention Project’ (PTPP) in Pakistan led to the development of a ‘decision support intervention for relatives’ (DeSIRe). This paper presents the experiences of relatives of children with β-TM of the DeSIRe following its use by PTPP field officers (FOs) in routine clinical practice. Fifty-four semi-structured qualitative interviews were conducted (April to June 2021) with relatives in seven cities in the Punjab province (Lahore, Sheikhupura, Nankana Sahab, Kasur, Gujranwala, Multan and Faisalabad). Thematic analysis shows that participants were satisfied with the content of the DeSIRe and its delivery by the FOs in a family meeting. They understood that the main purpose of the DeSIRe was to improve their knowledge of β-TM and its inheritance, and to enable them to make decisions about thalassaemia carrier testing, particularly before marriage. Participants also raised concerns about the stigma of testing positive; however, they believed the DeSIRe was an appropriate intervention, which supported relatives to make informed decisions. Our findings show that the DeSIRe is appropriate for use by healthcare professionals in routine practice in a low-middle income country, and has the potential to facilitate shared decision making about cascade screening for thalassaemia. Further research is needed to prove the efficacy of the DeSIRe.

COVID-19 pandemic exacerbates eating disorder by social and intrafamilial isolations: importance of familial relationships (Preprint)

UNSTRUCTURED Background: Coronavirus disease-2019 (COVID-19) pandemic makes children and their parents psychologically stressed. We present a patient with an eating disorder (ED) that rapidly worsened due to stresses and isolations and that was improved by family meeting to reconstitute their relationships, during the pandemic. Case presentation: A father found that his 9-year daughter rapidly lost her weight because of poor oral intake. Her weight had already stopped gaining before the pandemic and rapidly decreased to 22 kg during the pandemic. We diagnosed her as having an ED and administrated nasogastric tube feeding. We guessed that not only social isolations but a disruption of relationship between her and her parents, both of which occurred by the pandemic, also caused her ED. In a family meeting, she revealed that she felt anxious more during the pandemic. After the meeting, her parents rescheduled their works and have dinners together every night. She could eat sufficiently and weigh 31.8 kg. Conclusions: ED children, whose symptoms worsened during the pandemic, are increased during the pandemic since they feel loneliness by social and intrafamilial isolations. Furthermore, the parents are also stressed during the pandemic. Children including those with ED experienced stress directly from the advent of the COVID-19 pandemic and indirectly from their parents. Pediatricians should be concerned that children might experience great stress during and after the pandemic.

Enhanced Communication Skills

Good communication is considered fundamental to high-quality palliative care. Communication includes serious illness conversations with patients and family caregivers, collaborative communication across teams and disciplines, and communication with community providers. This chapter explores definitions, evidence-based research, training, and best clinical practices in three areas of enhanced communication. Narrative medicine promotes empathy, patient-centered listening, and life review through reflective journaling, writing, and self-reflection. Goals-of-care discussions, which may include advance care planning, ensure that providers align care with what matters most to the patient. The family meeting is used to facilitate communication, discuss the illness experience, present treatment choices, and facilitate end-of-life decision-making. Quality healthcare mandates training for healthcare clinicians in communication using a systematic approach.

Why Multi-Family Groups for Transgender Adolescents and Their Parents?

The author presents a therapeutic approach for contemporary families carried out in an innovative mental health care setting. This approach involves receiving both transgender adolescents and their parents. Initially, the adolescents are brought together in a discussion group. Then, the parents of these adolescents are gathered without their children in order to reflect on family relations and social adaptation and to receive support when needed. Both groups are gathered together a couple of times a year in a multi-family meeting. Using a dynamic based on the principle of free association and the interplay of identifications among participants, the author points out how these groups and multi-family gatherings promote mental health and prevent mental disorders and the disruption of family relations.

The Family Meeting

Cancer is a challenging experience for the clinical team, the patient’s family, and especially the patient. Important medical decisions are often made without the patient completely understanding their condition and options, as well as without the clinical team fully appreciating the patient’s values that go into making healthcare choices. Family meetings are one way to address these concerns. This chapter will review the importance and benefits to holding a structured family meeting, explore appropriate timing to have a meeting, and discuss the key participants. A detailed discussion follows on how to prepare for the meeting, highlighting an exploration of patient and family values and goals, as well as a premeeting among clinical team members. The structure of the meeting itself is then described, including introductions between the medical team and family, gauging the patient and family’s understanding, providing clinical information and recommendations, giving psychosocial support, reconciling medical recommendations with values, and postmeeting debriefing. Throughout the text, specific advice is provided on how to ensure the family meeting is as successful as possible so that patient-centered care is the ultimate priority.

Critical Care Documentation for the Dying Trauma Patient: Are We Recognizing Our Own Efforts?

Background Missed documentation for critical care time (CCT) for dying patients may represent a missed opportunity for physicians to account for intensive care unit (ICU) services, including end-of-life care. We hypothesized that CCT would be poorly documented for dying trauma patients. Methods Adult trauma ICU patients who died between December 2014 and December 2017 were analyzed retrospectively. Critical care time was not calculated for patients with comfort care code status. Critical care time on the day prior to death and day of death was collected. Logistic regression was used to determine factors associated with documented CCT. Results Of 147 patients, 43% had no CCT on day prior to death and 55% had no CCT on day of death. 82% had a family meeting within 1 day of death. Family meetings were independently associated with documented CCT (OR 3.69, P = .008); palliative care consultation was associated with decreased documented CCT (OR .24, P < .001). Conclusions Critical care time is not documented in half of eligible trauma patients who are near death. Conscious (time spent in family meetings and injury acuity) and unconscious factors (anticipated poor outcomes) likely affect documentation.