1. LA DESAPARICION FORZADA COMETIDA POR AGENTE ESTATAL
1.2. Actos ultra vires e imputabilidad de la desaparición forzada
Various studies have found the presence of impairments in PLWH, whether due to the HI virus itself or to the antiretroviral treatment. These can affect their activity performance levels and their participation in society (Crystal, et al., 2000; Ferrando, et al., 1998; Gaidhane et al., 2008; Myezwa, et al., 2009; Rusch, et al., 2004a; Van As, et al., 2009).
Rusch et al. (2004b) indicated that even those with CD4 counts higher than 500 cells/mm3, still experience significant limitations in activity, compared to the general population, and to
61 people who experience other chronic diseases, such as arthritis and cancer. HIV infection and related physical and psycho-social complications as well as the side effects of the
antiretroviral treatment might be contributing factors to the activity limitations among PLWH. Socio-economic factors could also influence the situation (Rusch, et al., 2004b).
The key findings of the studies reviewed are summarised in Table 3
62 Table 3: PLWH, activity limitations and participation restrictions
Author and date of publication
Methods Major findings
Myezwa et al., 2009
Study design: cross-sectional descriptive study conducted at the hospital
Tool used: ICF checklist Sample size: 80 PLWH ; 23 males and 57 females
Higher rate of activity limitations in mobility function (56.4%), in major life areas (55.1%) and in community, social and civic life (50%).
Patients with sensory impairments were four times more likely to experience self-care problems, and five times more likely to experience problems with domestic life activities compared to people without sensory problems.
Patients with digestive impairments were 20 times more likely to have problems with general tasks, compared to those without digestive problems.
Patients with cardiovascular, haematological, immunological and respiratory impairments were 14 times more likely to experience problems with the execution of general tasks than those without these impairments.
Patients with voice and speech function limitations were six times more likely to experience problems with communication than those without this problem.
Participants reported that they had limited access to the community because of stigma and
63 sometimes the inability to find a toilet quickly.
Van As et
The functions most affected involved major life areas (58%), interpersonal interactions and relationships (56%), and mobility functions (40%).
Participants reported having problems with participation in society. The domains of learning and applying knowledge and that of major life areas, such as participation in paid employment were problematic.
Various impairments predicted activity limitations and participation restrictions. Sensory and pain impairments predicted problems with the mobility function (p=0.04), as well as difficulties with interpersonal interactions and with relationships (p=0.002).
Digestive, metabolic, and endocrine system impairments predicted limitations in mobility function (p=0.02).
Impairments in neuro-musculoskeletal and movement-related functions predicted problems in learning and applying knowledge (p=0.04), mobility (p=0.007), interpersonal interactions and relationships (p=0.04).
64% of the participants had problems with self-care activities, as measured by performance qualifier (patient current environment).
Around 30% of the participants had problems with bathing a body part or bathing the whole body or with drying themselves, measured by capacity qualifier (in a standard environment), and 15%
64 Tool used: ICF checklist
(only the self-care (d5) component of activities and participation domain (d) of the ICF was used).
Sample; 194 PLWH; 82%
male.
by performance qualifier.
28% of the participants had problems with eating, measured by capacity qualifier and by performance qualifier; it was 16%.
45% of the participants had problems with urinating, measured by capacity qualifier and 25% by performance qualifier.
64% of the participants had problems with defecating measured by capacity qualifier, but 45% by performance qualifier.
57% of the participants had problems with dressing.
65 for analysis as the rest did not provide information about their CD4 counts.
Activity limitations were reported by 80.6% of the participants, and participation restrictions were reported by 93.2%.
Logistic regression models were used to test for associations between impairments, activity limitations and participation restrictions. All impairments and activity limitations were significantly associated with social role restriction.
It was demonstrated that social role restrictions were more often associated with mental function impairments than with other impairments.
Crystal et
51% of the participants experienced functional limitations in performing role functioning activities such as work, school and household activities.
64% of the participants experienced functional limitations in energy-demanding or vigorous activities, such as climbing stairs, walking long distances.
Significant associations were found between physical and role functioning limitations and
66 scale and 2-item ACTG
SF21 role functioning scale Sample; 2836: 77.5%
males and 22.5% females
increasing age, lower education, low CD4 cell counts, advanced disease and higher levels of pain and fatigue impairments.
67 Ferrando et
al.,1998
Study design: Longitudinal comparative study
Tool used: Designed self- reported questionnaires (for fatigue, physical limitations and depression) Sample: 187 PLWH (Men)
46 HIV negative (Men)
Fatigue and physical functional limitations were very common; both were significantly associated with advanced disease progression.
The prevalence of fatigue in PLWH with CD4 counts <500 was 14%, and it was significantly higher than in the HIV-negative group, and in the group of PLWH with CD4 counts>500.
Fatigue appeared to be a chronic symptom over a one-year period of follow up, and it contributed independently to physical functional limitations and disability. It was found to be a strong
predictor for physical activity limitations at both the baseline and after one year. In the linear regression, fatigue accounted for 12% of the variance in physical limitations.
The presence of physical functional limitations in PLWH after one year was highly predicted by physical functional limitations at intake, and which accounted for one third of the variance. This proves that, like fatigue, physical functional limitations tended to be chronic.
68 2.4.3 PLWH and contextual factors
There is a dearth of information in the literature regarding contextual factors that influence functioning among PLWH, and that could be categorised as either personal or environmental contextual factors. O‘Brien et al. (2009) highlighted four contextual factors that can influence functioning among PLWH. These were social support, stigma, living strategies and personal attributes. They considered two categories, intrinsic and extrinsic factors, and further
described extrinsic factors as factors that come from the external environment to the person, while intrinsic factors are the personal attributes of the individual.
According to O‘Brien et al. (2009), intrinsic factors that influenced functioning involved living strategies and personal attributes. Living strategies were considered to be behaviours, attitudes and beliefs PLWH could adopt to help them face the challenges of living with HIV, and its consequences for their daily functioning. An example of a living strategy was being able to create and seek social relationships or interaction with others; self-acceptance could be expressed through the ability to remove HIV from the mind and fight internalised stigma.
Another reported strategy was the person‘s ability to maintain a sense of control over his or her own life and over the HIV infection. This included being able to rebuild oneself and re-establish a sense of purpose in life, being able to control one‘s own nutrition, avoiding stress and improving adherence to antiretroviral treatment. Personal attributes were regarded as an individual‘s particular characteristics, such as age and inherent or genetic diseases. Increasing age was reported by the participants in Crystal et al. (2000) to be a strong barrier to effective functioning.
According to O‘Brien et al. (2009) extrinsic factors that influenced function included social support and stigma. Social support was found to be a facilitator for functioning, whereas lack of support was considered to be a barrier. Possible sources for social support were identified.
These included support from friends and family, support from the health care services and personnel, and programme and policy support, including the medical insurance cover. Stigma was experienced from family members, from the workplace (employers and colleagues) and from health care providers. Similarly, Myezwa et al. (2009) reported that most participants experienced barriers to functioning from community services, from systems and policies and also from relationships and interactions with friends and other people in their community.
Van As et al. (2009) also found that a lack of support from services, systems and policies and other people‘s negative attitudes constituted barriers to effective functioning. Health care
69 providers‘ positive attitudes and support and good relationships with other people were found to be strong facilitators of effective functioning. Myezwa et al. (2009) found PLWH were satisfied with the attitude and support provided by health care providers.
Figure 4 Contextual factors of disability in PLWH
(O'Brien, et al., 2009) Permission granted for reproduction 11th November 2013.