Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians. What is Known:• Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach. • Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning. What is New:• When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past. • There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings. Communicated by Mario BianchettiElectronic supplementary material The online version of this article (https://doi.
Background: Even though poor lighting at nighttime is an important risk factor for falls (and most falls occur during the night), lighting interventions to improve nightly lighting from bed to bathroom are rarely evaluated for fall prevention. Objective: We tested the hypothesis that an automated guiding light would reduce nightly fear of falling (FOF) and increase sleep quality of community-dwelling older people. Methods: This study had a pragmatic uncontrolled beforeafter design, including participants during a period of 8 months if they (i) were aged at least 65 years, (ii) ambulated independently at night, and (iii) had no cognitive or audiovisual impairments obstructing outcome measurement. Automated LED strips (Gight TM ) were installed in the participants' homes. The primary outcome measure was overnight FOF on a scale of 0-10. Secondary outcome measures included sleep quality on a scale of 0-10 and fall rate. Additionally, a sample of participants was interviewed about their experiences with Gight. Results: Sixty-four participants were included (mean age: 80.8 ± 8.1 years; 89% living independently). Mean study length was 118 days (range: 30-231). In the intention-to-treat analysis, overnight FOF declined from 5.5 ± 3.0 to 3.8 ± 3.2 (p = 0.001), and sleep quality increased from 6.7 ± 2.4 to 7.4 ± 1.7 (p = 0.012). The fall rate during the study was too low to detect changes. Participants appreciated Gight (8.4 ± 0.8 on a scale of 10), and the majority (57%) reported a subjective decrease in FOF. Conclusion: Gight shows promising results for overnight FOF and sleep quality, but the effect of lighting interventions on fall rate should be evaluated further before widespread implementation.
Objectives To describe the lived experience of older people who see no future for oneself in the context of aging and the possible development of a wish to die. Methods Data were collected from 34 interviews with people of 55-92 years. A phenomenological hermeneutical analysis was performed using crafted stories as an analytical device. Results Four intertwined constituents together with the essence of the phenomenon provide a layered description of what it means to see no future for oneself. In all constituents: 1) not sharing everyday life, 2) looking for new commitments, 3) facing present losses and future fears and 4) imagining not waking up in the morning, the essence losing zest for life seeped through their daily experiences. Conclusions As their horizon of future possibilities is shrinking, older people in our study experience a loss of zest for life and start to questioning the value of their present lives. And although a certain languishing mood can be discovered, the phenomenon ‘seeing no future for oneself’ does not entail a wish to die.
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