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Received Jan 13; Accepted Apr 4. This article has been cited by other articles in PMC. As a peer group, friends of patients of the same age and sex were asked to cooperate.
Linear mixed models were used to compare the HRQoL of the patients and their peers. JIA patients had a psychosocial health status comparable with their healthy peers, whereas a small significant mean difference remained in physical health 5. A higher family burden, higher pain level, and lower well-being at enrollment were associated with an unfavorable HRQoL.
Keywords: Inception cohort, Juvenile idiopathic arthritis, Quality of life, Outcome Background Juvenile idiopathic arthritis JIA is the most common chronic inflammatory rheumatic illness in children, with an incidence of 2—20 cases per , at-risk children [ 1 ].
These diseases cause both temporary and permanent disability as well as an impaired quality of life [ 2 — 4 ].
The treatment of JIA currently aims at achieving an inactive disease state, preventing disability and damage, and ensuring the age-appropriate development of affected children and adolescents. HRQoL is a complex, multidimensional concept that encompasses physical, emotional, social, and behavior-related well-being and functioning. Most prior studies were cross-sectional in their study design [ 8 , 12 — 14 ], and the assessment of HRQoL was often conducted several years after diagnosis [ 4 , 11 ].
Some indicators of a poor quality of life have been identified [ 9 , 21 — 24 ] and include the persistence of a high level of disease activity, the presence of disabilities, chronic pain, and low social or emotional resources.
However, some questions remain unanswered; for example, it has remained unclear why patients with clinically inactive disease nevertheless report a reduced quality of life [ 25 ]. Identifying the factors that predict a poor outcome with continued low HRQoL is a vital step toward providing appropriate interventions. To the best of our knowledge, there are no published data that evaluate the course of HRQoL in newly diagnosed JIA patients compared with healthy peers.
Methods Study design ICON is an ongoing, prospective, observational cohort study into which patients with a recent onset of JIA and healthy controls were enrolled from May to December at 11 of the largest pediatric rheumatology sites in Germany. Data available by 21 June were used for this analysis.
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Cords make up the basic structure of the khipu. Each wool, animal hair or most commonly cotton strand is at least two-ply; one end looped, the other tapered and finished with a small knot. Looped ends connect cords together with a much thicker main or primary cord. Pendant strands are suspended from the primary cord and contain clusters of hand tied knots Ascher and Ascher The majority of existing approximately khipu have been scientifically dated from CE just before or following Spanish conquest Urton Regrettably, it only took 30 years for the Spanish to destroy the entire civilization.
Descriptions of the khipus were contained in documents written at the time of the Spanish conquest beginning in Brokaw According to these colonial accounts, Inkan khipukamayuq knot-keepers responsible for their creation translated the knots by inspecting them visually and tactilely.
The Spanish burned the khipus in the belief that they were ungodly and contained historical narratives, Inka cosmologies and poems. It is important to recognize the written accounts—however sympathetic to the Inkas—from 16th century Spanish soldiers, priests, administrators, transcribed Inka history from inside a Spanish framework Ascher and Ascher Critical to the establishment of Inka power were the requirements of tributes and subsequent performance of census taking via the khipu Urton Key among Inka institutions and practices of governance were principles of: dualism, hierarchy and reciprocity, ancestor worship, reverence for the divinity of the Inka lineage and respect and recognition of local Ayllus or kin groups Urton Contemporary Peruvian anthropologist, Sabine Hyland argues that khipu likely constitute an intelligible writing system rather than serving as simply memory aides.
Significant to this argument is the understanding that Khipu record keeping and the European tradition of written documents coexisted through much of the colonial era of the Inka period Urton Hyland examines two khipus preserved by Collata village authorities in Peru. Authorities state that these sacred khipu are narrative epistles a primary form of written communication in the ancient world, religious in nature describing warfare created by local chiefs Hyland The Collata khipu are the first ever reliably identified narratives by the descendants of their creators Hyland Three cord groupings at the end of each khipu, characterized by distinct colors made from local plants and insects, animal fibers, and ply direction, are interpreted as Ayllu names Hyland Evidence suggests that Andeans composed khipu epistles during the rebellions to ensure secrecy and affirm cultural legitimacy.
However, it is unclear how similar the 18th century Khipu documents are to the Inka quipu written archives Hyland We are limited in our knowledge of Inka traditions because of what has been defined as history we can only be experts of our own time Ascher and Ascher The power of memory in material culture: Fiber and its sister, textile have served as a material signifier for wealth, rank and identity, and cosmology for millennia. Contemporary Andean cultures maintain not only the techniques of their ancestors, but also an awareness of the nonmaterial power attributed to textile in its various forms Franquemont and Franquemont Material culture is a participatory framework for action and grounding for connecting individual and collective remembrance.
Archaeologist Andrew Jones defines memory as a process of pattern re-creation and considers the environment to be an active resource.
More importantly, memory is produced through the interaction between people and things. The practices by which people make things, live with them and use them also make those people Fowler Personhood is routinely distributed outside of human bodies into the material world.
It is necessary to include the physical body in the discourse of embodiment when determining the relationship between memory and material culture Jones Bodily memory is formed by a remembrance which is integrated within our physical actions. Memory is embodied through production, use and alteration of objects which serve as physical representations of bodily action.
Commemoration often in the form of artistic endevours is also of significance when thinking about the relationship between material culture and memory. Commemoration is a source for a communal practice which binds together people and things through a framework for remembering Jones Violence and memory: Mass disappearance and geocide in Guatemala are the context from which we learn about testimony as a human right.
Anthropologist Victoria Sanford argues that the right to justice is asserted in the sharing of painful fragmented memory. Testimony has meaning beyond its implications for individual agency, community action, and challenging repressive state actions Sanford Testimony provides a space for survivors to 1 tell of their experiences; 2 teach a larger history; 3 create a safe space to reflect and internalize the violence of genocide; 4 to provide a legal justification for the physical exhumation of victims; 5 to be heard and have their words supported Sanford The production of public spaces for testimony and witnessing generates a safe place where survivors learn to speak.
It is an active part of the regeneration of human agency and a political project for seeking redress through the accumulation of truth Sanford In societies where fiber is employed as a commodity, it often serves as the material embodiment of the histories of social, political and cultural exchange.
The interrelation of fiber to cultural identity is located outside of a simple binary system of computation.
Vicuna redresses this theory through the revival of a cultural symbol and its memory-keeping status. Contemporary curator and art historian Julia Bryan-Wilson portrays textile construction as a process with the ability to invert perceptions, endanger state structures and elicit political upheaval She unites the work of the hand to a greater experience, or ANTHRO Indigenous Movements in Latin America, Dr.
Cecilia Vicuna Cloud Net, Image courtesy of the artist. In contemporary art and anthropology, textiles have finally been acknowledged as central to studies of gender, identity, class, commodification, and modernization.
She argues that the cultural homogeneity and visual associations in the textile art of Latin America are not simply a passive response to five centuries of colonialism.
They are deliberate and often politically subversive engagements Berlo The artist has identified with Andean culture since childhood CAC Her work exists against the backdrop of the U. Arte Precario is the name she gives her independent voice when challenging her colonial past within the southern hemisphere. Reciprocal appropriation: In the world of fiber and textiles, we find that materials and styles are transferred not only inter-regionally between town and city, but also between modern Western culture and indigenous cultures.
Textiles have played a prominent role in exchanges between the West and indigenous peoples throughout the world Berlo The contemporary indigenous textile aesthetic is, in many regions, is an aesthetic of appropriation and accumulation. Culture is enlivened and regenerated by the exchange of goods, techniques, and materials. Berlo argues that when viewed in a comprehensive way, appropriation is not necessarily a mark of a tradition's demise but the resounding display of a culture's strength Berlo Respectfully sharing a spiritual approach with her indigenous sources, Vicuna regards herself as the orator of an ancient knowledge, which she transforms into an artistic language in various forms CAC From approximately khipus housed at the American Museum of Natural History in New York City, Locke was able to substantiate its mathematical and record keeping functions Brokaw Descriptions of the khipus were contained in documents written at the time of the Spanish conquest beginning in Brokaw According to these colonial accounts, Inkan khipukamayuq knot-keepers responsible for their creation translated the knots by inspecting them visually and tactilely.
Cecilia Vicuna Cloud Net, Jessica Hemmings ed. According to Lampert et al.
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