Staying connected: implementing avatar robots at schools in Germany and Japan.

Introduction: With advancements in communication technologies and internet connectivity, avatar robots for children who cannot attend school in person due to illness or disabilities have become more widespread. Introducing these technologies to the classroom aims to offer possibilities of social and educational inclusion. While implementation is still at an experimental level, several of these avatars have already been introduced as a marketable service. However, various obstacles impede widespread acceptance. Methods: In our explorative qualitative case study we conducted semi-structured interviews with eight individuals involved in the implementation of the avatar robots AV1 in Germany and eleven participants involved with implementing OriHime in Japan. We analyzed and compared implementation processes, application areas, access and eligibility, and the potential and limitations of avatars at schools. Results: We identified structural similarities and differences in both countries. In the German cases the target is defined as temporary use for children who cannot attend school in person because of childhood illness, with the clear goal of returning to school. Whereas in Japan OriHime is also implemented for children with physical or developmental disabilities, or who cannot attend school in person for other reasons. Discussion: Our study suggests that avatar technologies bear high potential for children to stay socially and educationally connected. Yet, structures need establishing that grant equal access to avatar technologies. These include educational board regulations, budgets for funding avatar technologies and making them accessible to the public, and privacy protection standards that are adequate, yet do not create implementation hurdles that are too high. Furthermore, guidelines or training sessions on technical, educational and psychosocial aspects of including avatar technologies in the classroom for teachers are important for successful implementation. Since our Japanese cases suggest that expanding the area of application beyond childhood illness is promising, further research on the benefits for different groups is needed.

Coping and end-of-life decision-making in ALS: A qualitative interview study.

How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies 'avoid thinking about end-of-life' and its counterpart, 'planning ahead to be well-prepared,' and differentiated the latter into the patterns 'withdrawing from life and taking precautions against life-prolongation' and 'searching for a new meaning in life and preparing for life-sustaining treatment'. The approaches are based on individual perceptions, attitudes and motives and can be positively/negatively reinforced by healthcare professionals (HCP), family and other interpersonal networks, but also by disease progression and in reaction to health care services. Type and degree of needs concerning information and counselling differed according to coping strategies. These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS' coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review.

Amyotrophic lateral sclerosis (ALS) leads to death on average 2-4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options? (2) What are the challenges for all involved in decision making and communication about this topic? To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS. We included texts published between 2008 and 2018, and updated our search to May 2020. Sources were analysed in MAXQDA using deductively and inductively generated codes. After the final analysis, 123 full texts were included in this review. We identified a wide range of communicative challenges and six different and, in part, opposite communication patterns: avoiding or delaying communication on end-of-life issues, openly considering dying and actively seeking assistance, ignoring or disregarding patients' wishes, discussing and respecting the patients' wishes, engaging in advance care planning and avoiding or delaying advance care planning. The literature reveals a very heterogeneous response to end-of-life issues in ALS, despite several good-practice suggestions, examples and guidelines. We derive a strong need for harmonization and quality assurance concerning communication with PALS. Avoiding or delaying communication, decision making and planning, as well as ignoring or disregarding the patient's will by HCP can be judged as a violation of the ethical principles of autonomy and non-maleficence.

The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon. OBJECTIVES: Our aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options. METHODS: We searched eight databases for English and German publications on death wishes in ALS for the period from 2008 to 2018 and updated the search up to May 2020. After the screening process, 213 full texts were included for the final analysis. We analysed the texts in MAXQDA, using deductively and inductively generated codes. RESULTS: We identified end-of-life considerations, ranging from wishes to die without hastening death, to options with the possibility or intention of hastening death. Besides physical impairment, especially psychosocial factors, socio-demographic status and socio-cultural context have a great impact on decisions for life-shortening options. There is huge variation in the motives and determinants for end-of-life considerations between individuals, different societies, healthcare and legal systems. CONCLUSIONS: For a variety of reasons, the information and counselling provided on different options for sustaining life or hastening death is often incomplete and insufficient. Since the motives and determinants for the wish to hasten death are extremely diverse, healthcare professionals should investigate the reasons, meaning and strength of the desire to die to detect unmet needs and examine which interventions are appropriate in each individual case.