Background: This study investigated the trajectories of decline in individual instrumental activities of daily living (IADL) with aging and the effect of hearing loss, vision loss, or dual sensory loss on these trajectories in community-living frail older persons. Method: This longitudinal population-based study was conducted in 9,319 community-living frail Dutch persons aged 60 years and older. Self-reported hearing loss, vision loss, or dual sensory loss and nine IADL were assessed in 15 studies of the Dutch National Care for the Elderly Program (The Older Persons and Informal Caregivers Survey Minimum Dataset). Probabilities of limitations in IADL, odds ratios (per 5 years) for binary, and rate ratios (per 5 years) for score outcomes were calculated using mixed logistic and negative binomial models with age as the underlying timescale, stratified by sensory loss, and corrected for confounders. Results: At baseline, the number of IADL limitations was higher in dual sensory loss (2.00 [interquartile range 1.00–4.00]) and vision loss (2.00 [interquartile range 1.00–4.00]) compared to no sensory loss (1.00 [interquartile range 0.00–2.00]) or hearing loss (1.00 [interquartile range 0.00–3.00]). Trajectories of individual IADL showed an increase in limitations in all IADL with age. Household tasks, traveling, shopping, preparing a meal, and walking showed the most rapid decline. Handling finances, traveling, and walking followed a different pattern of decline based on sensory loss status. Conclusions: The age effect on limitations in IADL appears to be similar across all types of sensory loss, with the exception of handling finances, traveling, and walking. At baseline, persons with self-reported sensory loss had higher levels of self-reported functional limitations. Trajectories depict a decline in IADL competence with age.
DOCUMENT
Survivors of father–daughter incest often suffer from complex trauma and sensory insensitivity, making it difficult to decipher the sensations in the body and experience body ownership, self-location and agency. This case study illustrates how sensory focused, Trauma-Centred Developmental Transformations can help restore or develop a bodily self, desensitize fear-based schemas, revise deeply buried beliefs and extend repertoire.
DOCUMENT
Europeans are living longer than ever in history, because of the economic growth and advances in hygiene and health care. Today, average life expectancy is over 80, and by 2020 around 25% of the population will be over 65. The increasing group of older people poses great challenges in terms of creating suitable living environments and appropriate housing facilities. The physical indoor environment plays an important role in creating fitting, comfortable and healthy domestic spaces. Our senses are the primary interface with the built environment. With biological ageing, a number of sensory changes occur as a result of the intrinsic ageing process in sensory organs and their association with the nervous system. These changes can in turn change the way we perceive the environment around us. It is important to understand these changes when designing for older occupants, for instance, care homes, hospitals and private homes, as well as office spaces given the developments in the domain of staying active at work until older age.
MULTIFILE
The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
DOCUMENT
Young widowhood, conceptualized as the loss of one’s spouse before the age of 50, is a profoundly painful and distressing loss (Den Elzen, 2017, 2018). The literature on young widowhood shows the death of a partner generally causes a fragmentation of the self, as it violates expectations of the normal life cycle, namely growing old together (Haase and Johnston, 2012; Levinson, 1997). Premature loss of one’s spouse tends to be experienced by the surviving partner as distressing or traumatizing, such as having witnessed their suffering in illness or through accident (Den Elzen, 2018) or in struggling with unfinished business (Holland et al, 2020). Whilst post-traumatic stress is well-known and has been widely researched across various disciplines, the concept of post-traumatic growth is much newer and by contrast has received less attention. PTG was introduced as a scholarly concept by Tedeschi and Calhoun in the mid-1990s and is defined as a positive psychological change as a result of the struggle with highly challenging life events (2004). Calhoun and Tedeschi’s notion of PTG has been backed by a recent systematic review. In the first meta-analysis of moderate-to-high PTG, Wu et al. found that of the 10,181 subjects, about 50% experienced PTG (2019). They also reported that women, young people and victims of trauma experienced higher levels of PTG than men, the elderly and those who experienced indirect trauma. PTG has attracted some controversy, with some researchers questioning its scientific validity (Jayawickreme and Blackie, 2014). Others caution against the minimization of people’s suffering. Hayward is a trauma counsellor who advises approaching PTG carefully, highlighting that if it is introduced with clients too early it can "often be construed as minimizing someone's pain and suffering and minimizing the impact of the loss" (cited in Collier, 2016, n.p.). In addressing the critique of PTG, Calhoun and Tedeschi (2006) emphasize that the focus on investigating positive psychological change following trauma does not deny the common and well-documented negative psychological responses and distress following severe life stresses: “Negative events tend to produce, for most persons, consequences that are negative” (p.4). They argue however, and their research supports this finding, that for many people distressful events can foster positive psychological changes. We view PTG as a possibility following (profound) loss, and emphasize that PTG may continue to co-exist with painful and/or unresolved emotions regarding the loss itself. We conceptualize PTG as a continuum and not as an either/or binary with grief. Further, we wish to highlight that PTG is a highly individual process that depends on many factors, and we are not suggesting that the absence of PTG is to be seen as a failure. This chapter intends to contribute to the study of PTG through a person-centered approach. The most used method to assess PTG is the 21-item posttraumatic growth inventory developed by Calhoun and Tedeschi in 1996 (Jayawickreme & Blackie, 2014). Self-reported posttraumatic growth has been the foundation of PTG research, which has aimed to identify to what extent PTG evokes improved psychological and physical health. In discussing our own creative narrative processes of PTG, our practice-led-research lens aims to contribute to research on how PTG might be fostered. We propose a Writing-for-wellbeing approach in this context and explore what it offered us both as writers and widows and what it might offer the field of Writing-for-wellbeing and by extension clinical and scholarly practice.
DOCUMENT
Purpose The purpose of this research was to explore women’s experiences after breast surgery with scar characteristics and symptoms, and its impact on their health-related quality of life (HRQOL). Material andmethods A qualitative study using semi-structured face-to-face interviewswas conducted among women following prophylactic, oncologic, or reconstructive breast surgery in the Netherlands. A directed content analysis was performed using guiding themes. Themes were “physical and sensory symptoms,” “impact of scar symptoms,” “personal factors,” “impact of scar interventions,” and “change over time.” Results The study population consisted of 26 women after breast surgery. Women experienced a wide range of symptoms like adherence, stiffness, pain, and uncomfortable sensations. Scar characteristics as visibility, location, texture, and size, influenced satisfaction with their appearance. The impact of scar symptoms is reflected in physical, social, emotional, and cognitive functioning, thereby affecting HRQOL. The experienced impact on HRQOL depended on several factors, like personal factors as the degree of acceptance and environmental factors like social support. Conclusion Women can experience a diversity of scar characteristics and symptoms, which play a central role in the perceived impact on HRQOL. Since scarring can have a considerable impact on HRQOL, scarring after prophylactic, oncologic and reconstructive breast surgery should be given more attention in clinical practice and research. Implications for Cancer Survivors Considering scarring as a common late effect after breast surgery and understanding the variety of experiences, which could impact HRQOL of women, can be beneficial in sufficient information provision, expectation management, and informed decision making.
DOCUMENT
Interactive design is an emerging trend in dementia care environments. This article describes a research project aiming at the design and development of novel spatial objects with narrative attributes that incorporate embedded technology and textiles to support the wellbeing of people living with dementia. In collaboration with people with dementia, this interdisciplinary research project focuses on the question of how innovative spatial objects can be incorporated into dementia long-term care settings, transforming the space into a comforting and playful narrative environment that can enhance self-esteem while also facilitating communication between people living with dementia, family, and staff members. The research methodologies applied are qualitative, including Action Research. Participatory design methods with the experts by experience—the people with dementia—and health professionals have been used to inform the study. Early findings from this research are presented as design solutions comprising a series of spatial object prototypes with embedded technology and textiles. The prototypes were evaluated primarily by researchers, health professionals, academics, and design practitioners in terms of functionality, aesthetics, and their potential to stimulate engagement. The research is ongoing, and the aim is to evaluate the prototypes by using ethnographic and sensory ethnography methods and, consequently, further develop them through co-design workshops with people living with dementia.
MULTIFILE
Breast cancer is the most prevalent form of cancer that affects women worldwide, posing a significant burden on public health. While advancements in early detection and improved treatments have led to a remarkable 90% five-year survival rate and an 83% ten-year survival rate, this has also resulted in more prophylactic mastectomies being performed. Despite advancements in breast-conserving techniques, immunotherapy, and hormone therapy, many women still undergo mastectomies as part of their cancer treatment. In all cases, this results in scarring, and additional side effects from treatment modalities may arise. The loss of a breast can profoundly impact health-related quality of life (HRQoL). Although HRQoL has improved greatly during the recent years, systematic and local therapy having side effects is not uncommon, and this needs more attention.
DOCUMENT
We set out to bring into being a Creative Methods issue to inform and support researchers, practitioners, educators, and those they serve. We did so with what William Blake called “a firm persuasion” (Whyte, 2001, p. 3), and in the process of expanding the vidence-base for creative methods in guidance and counselling we are affirmed that this is both essential and rewarding. In our call for papers, we identified a number of reasons that creative methods are essential to guidance and counselling; for instance, they reintroduce playfulness, which is an often-undervalued capacity of humans that can help create space to respond to serious questions. Creative methods also allow us to be less resistant to so-called “negative” feelings and they let us break rank with the rational linear thinking, planning, efficiency and goal-orientation that has dominated policy and some practice discourses. In essence, this has supressed the creative, sensory and feeling side of human needs and behaviours. Indeed a common theme that appeared in all the articles is the importance of making room for the affective, before connecting that with more cognitive articulations. “This is an Accepted Manuscript of an article published by Taylor & Francis in "British Journal of Guidance and Counselling" on 05/14/16, available online: https://doi.org/10.1080/03069885.2018.1442917. LinkedIn: https://www.linkedin.com/in/reinekke-lengelle-phd-767a4322/
MULTIFILE
"Objectives: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. Methods: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co‐researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. Findings: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. Conclusions: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person‐centred support."
MULTIFILE
