Community Engagment in Public Health Research

Community engagement (CE) is a collaborative practice between communities and researchers to improve the health outcomes and well-being of the community afflicted, while also potentially mitigating the negative consequences that result from the sometimes haphazard research conducted by outsiders. Presently, there is confusion regarding community engagement techniques due to discrepancies between prescribed models. To address the confusion surrounding community engagement, I created a consistent model that compounds current effective methods with ethical considerations for application across varying cultural and research contexts. I use a literature review to assess the different existing frameworks of community engagement for their advantages and disadvantages in public health research. Using this information, I constructed the new model with 5 major tenets including: prior understanding of community, encompassing application, involvement and representation, genuine consent, and self-reflection. This CE model is applied to a well-known case study involving a young Hmong girl, Lia Lee, who is caught in the crossfire of two conflicting cultures and their understanding of medicine. This analysis suggests that if the new CE model was properly employed, the frustration and pain in both the Hmong community, as well as the doctors treating Lia, may have been mitigated. While past health interventions cannot be changed, the way researchers conduct public health measures in the future can be adapted to implement community engagement as the default approach, instead.Sociolog

Journeys of adjustment: the experiences of adolescents living with juvenile idiopathic arthritis

Background: Juvenile idiopathic arthritis (JIA) is one of the most common diseases of childhood causing pain, swelling of joints and reduced mobility. Previous research has focused on the challenges and psychosocial impact of JIA, but there has been limited attention given to how young people adjust and adapt to living with a long-term condition such as JIA. The aim of this qualitative study was therefore to explore adolescents' experiences of living with JIA, with particular focus on the process of adjustment. Methods: Ten adolescents (7 female, 3 male) aged 13–17 years with good treatment adherence were recruited from an adolescent arthritis clinic. In-depth interviews were conducted, and data were analysed by two researchers independently using interpretative phenomenological analysis. Results: These adolescents described the physical and psychosocial ‘burden of living with JIA’ and the challenges faced by an underlying preoccupation ‘to be a normal teenager’. However, their accounts also revealed ways in which they regained agency and developed ‘resilience through taking control’ over their lives. This resilience helped the adolescents re-establish a sense of well-being through an ongoing process of ‘acceptance and self-growth’. Conclusions: Although much research has adopted a deficit model that focuses on adjustment problems, the current study highlights the resourcefulness of young people in managing the challenges of living with a long-term condition. These experiences of successful adjustment can be used as the basis of positive, strength-based intervention approaches for adolescents with arthritis to enhance resilience and well-being

Two types of states: A cross-linguistic study of change-of-state verb roots

Event structural theories decompose verb meanings into an event template and idiosyncratic root. Many mainstream theories assume a bifurcation in the kinds of entailments contributed by roots and templates, in particular that lexical entailments of change of an individual in change-of-state verbs are only introduced by templates, not roots. We argue against such theories by comparing Levin's (1993 non-deadjectival vs. deadjectival change-of-state verb roots (e.g. crack vs. red roots). A broad-scale typological study reveals that red-type roots tend to have simple (e.g. non-deverbal) stative forms, but crack-type roots do not. Semantic studies of Kakataibo and English show that terms built on crack-type roots always entail change, while terms based on red-type roots may not. We thus suggest that crack-type roots entail change-of-state, contra Bifurcation

Are sex and history of pruritic skin conditions factors which affect the phenomenon of visually evoked itch? An exploratory study

Introduction: We have previously shown that sensations of itch and the scratch response can be evoked using itch-related images. However, we did not determine whether individual differences in a person’s experience of itch could moderate this effect. This exploratory study aimed to determine whether sex or a history of pruritic skin conditions (PSCs) could influence the effects of visually evoked itch and scratch. Methods: Forty-one participants (19 males; 16 with a history of PSCs) viewed static images that could either be itch or nonitch related. These were further separated by picture type: “skin contact” (ants crawling on the hand vs. a butterfly on the finger); “skin response” (scratching an insect bite vs. washing the hands); “skin condition” (psoriasis vs. freckles) or “context only” (insects vs. birds). Images were rated using a 10-point scale by answering: “How itchy do you feel?” (Self-rating) and “How itchy do you think the person in the picture feels?” (Other-rating). Frequency and location of scratching was also recorded. Results: The highest itch scores were to itch-related skin contact pictures. Females gave higher itch ratings than males, and people with a history of PSCs gave higher itch ratings when viewing images of people scratching. There was no correlation between itch ratings and scratch response, and no relationship between body site viewed and location of scratching. Discussion: There is a heightened response to itch-related cues in females and those with PSCs, indicating a more centrally mediated pathway bringing subconscious itch sensations into conscious awareness in these populations. These findings could influence personalized treatment interventions aimed at reducing awareness of itch sensations in susceptible individuals

Validation of the food allergy quality of life:parental burden questionnaire in the UK

Purpose - Food allergy can have a profound effect on quality of life (QoL) of the family. The Food Allergy Quality of Life—Parental Burden Questionnaire (FAQL-PB) was developed on a US sample to assess the QoL of parents with food allergic children. The aim of this study was to examine the reliability and validity of the FAQL-PB in a UK sample and to assess the effect of asking about parental burden in the last week compared with parental burden in general, with no time limit for recall given. Methods - A total of 1,200 parents who had at least one child with food allergy were sent the FAQL-PB and the Child Health Questionnaire (CHQ-PF50); of whom only 63 % responded. Results - Factor analysis of the FAQL-PB revealed two factors: limitations on life and emotional distress. The total scale and the two sub-scales had high internal reliability (all a > 0.85). There were small to moderate but significant correlations between total FAQL-PB scores and health and parental impact measures on the CHQ-PF50 (p < 0.01). Significantly greater parental burden was reported for the no-time limited compared with the time-limited version (p < 0.01). Conclusions - The FAQL-PB is a reliable and valid measure for use in the UK. The scale could be used in clinic to assess the physical and emotional quality of life in addition to the impact on total quality of life

Adolescents' experiences of being food-hypersensitive: a qualitative study

<p>Abstract</p> <p>Background</p> <p>Experiencing or being at risk of adverse reactions to certain food items is a common health issue, especially among children and adolescents. Research has shown that living with the risk of food reactions and always having to take measures to avoid certain food in one's diet has a negative impact on quality of life. The aim of this study was to illuminate adolescents' experiences of being food hypersensitive.</p> <p>Methods</p> <p>Three focus group interviews and six individual interviews were carried out with all together 17 adolescents, 14–18 years of age, who had exclusion diets at school due to food hypersensitivity. The interviews were taped and transcribed verbatim and a qualitative content analysis was carried out.</p> <p>Results</p> <p>Five categories with subcategories, and one pervading theme, emerged. The categories were: <it>Perceiving oneself as being particular</it>, <it>Feeling constrained</it>, <it>Experiencing others' ignorance</it>, <it>Keeping control</it>, and <it>Feeling it's okay</it>. A pervading theme was conceptualised as <it>Striving to normalise the experience of being food-hypersensitive</it>. The adolescents regarded themselves as competent and courageous, but also described how they avoided the extra attention it implied to ask for special food considerations taken into account. Their self-conceptions were probably essential for their management of and attitude toward the hypersensitivity condition. They felt deprived, and those at risk of severe food reactions experienced insecurity and fear. Feelings of being disregarded were expressed, as well as facing unreliability and a lack of understanding from others. The continual work of constant vigilance and decision-making was described as time-consuming and frustrating. However, the adolescents also experienced considerate and supportive surroundings and were at pains to tone down the negative experiences and consequences of being food-hypersensitive.</p> <p>Conclusion</p> <p>Food avoidance by itself, and not only the somatic food reactions, brings about consequences with significant impacts on adolescents' lives. The findings from this study have implications for all of those who deal with adolescents who are food-hypersensitive, and not only health professionals. A deeper insight into adolescents' experiences gives an understanding which can improve the care-givers' efforts.</p

Health-related quality of life in food hypersensitive schoolchildren and their families: parents' perceptions

BACKGROUND: About 20% of schoolchildren and adolescents in Sweden suffer from perceived food hypersensitivity (e.g. allergy or intolerance). Our knowledge of how child food hypersensitivity affects parents HRQL and what aspects of the hypersensitivity condition relate to HRQL deterioration in the family is limited. Thus the aim of this study was to investigate the parent-reported HRQL in families with a schoolchild considered to be food hypersensitive. The allergy-associated parameters we operated with were number of offending food items, adverse food reactions, additional hypersensitivity, allergic diseases and additional family members with food hypersensitivity. These parameters, along with age and gender were assessed in relation to child, parent and family HRQL. METHODS: In May 2004, a postal questionnaire was distributed to parents of 220 schoolchildren with parent-reported food hypersensitivity (response rate 74%). Two questionnaires were used: CHQ-PF28 and a study-specific questionnaire including questions on allergy-associated parameters. In order to find factors that predict impact on HRQL, stepwise multiple linear regression analyses were carried out. RESULTS: An important predictor of low HRQL was allergic disease (i.e. asthma, eczema, rhino conjunctivitis) in addition to food hypersensitivity. The higher the number of allergic diseases, the lower the physical HRQL for the child, the lower the parental HRQL and the more disruption in family activities. Male gender predicted lower physical HRQL than female gender. If the child had sibling(s) with food hypersensitivity this predicted lower psychosocial HRQL for the child and lower parental HRQL. Food-induced gastro-intestinal symptoms predicted lower parental HRQL while food-induced breathing difficulties predicted higher psychosocial HRQL for the child and enhanced HRQL with regards to the family's ability to get along. CONCLUSION: The variance in the child's physical HRQL was to a considerable extent explained by the presence of allergic disease. However, food hypersensitivity by itself was associated with deterioration of child's psychosocial HRQL, regardless of additional allergic disease. The results suggest that it is rather the risk of food reactions and measures to avoid them that are associated with lower HRQL than the clinical reactivity induced by food intake. Therefore, food hypersensitivity must be considered to have a strong psychosocial impact

Can we identify patients at risk of life-threatening allergic reactions to food?

Anaphylaxis has been defined as a “severe, life-threatening generalized or systemic hypersensitivity reaction”. However, data indicate that the vast majority of food-triggered anaphylactic reactions are not life-threatening. Nonetheless, severe life-threatening reactions do occur, and are unpredictable. We discuss the concepts surrounding perceptions of severe, life-threatening allergic reactions to food by different stakeholders, with particular reference to the inclusion of clinical severity as a factor in allergy and allergen risk management. We review the evidence regarding factors which might be used to identify those at most risk of severe allergic reactions to food, and the consequences of misinformation in this regard. For example, a significant proportion of food-allergic children also have asthma, yet almost none will experience a fatal food-allergic reaction; asthma is not, in itself, a strong predictor for fatal anaphylaxis. The relationship between dose of allergen exposure and symptom severity is unclear. While dose appears to be a risk factor in at least a subgroup of patients, studies report that individuals with prior anaphylaxis do not have a lower eliciting dose than those reporting previous mild reactions. It is therefore important to consider severity and sensitivity as separate factors, as a highly sensitive individual will not necessarily experience severe symptoms during an allergic reaction. We identify the knowledge gaps which need to be addressed to improve our ability to better identify those most at risk of severe foodinduced allergic reactions