Perceptions of health care: perspectives from adolescents with physical disabilities and their parents

Patient satisfaction with health care is an important indicator of quality services and has been related to positive health outcomes. Because little is known about whether adolescents with physical disabilities are satisfied with the services they receive, the current study investigated the extent to which adolescents are satisfied with health care services, aspects of care adolescents identify as important to their satisfaction, similarities between adolescent and parent perceptions of care, and the relationship between adolescent perceptions of care and their intentions to adhere to treatment recommendations. Following recruitment from a pediatric health center, adolescents and their parents (n = 42) completed questionnaires to assess their perceptions regarding various aspects of health care services. Participants were very satisfied with services received; interpersonal aspects of care were very important to them. Adolescents’ satisfaction was not predictive of their intentions to adhere to treatment recommendations and their perspectives differed from those of their parents.

Is alcohol consumption related to likelihood of reporting chronic widespread pain in people with stable consumption? : Results from UK Biobank

Acknowledgements This research has been conducted using the UK Biobank resource, and was funded by the University of Aberdeen. The authors have no conflicts of interest to declare.

Is socioeconomic position early in life associated with physical activity during adulthood following the accumulation of risk model with additive effects?

L'activité physique améliore la santé, mais seulement 4.8% des Canadiens atteignent le niveau recommandé. La position socio-économique est un des déterminants de l'activité physique les plus importants. Elle est associée à l’activité physique de manière transversale à l’adolescence et à l’âge adulte. Cette thèse a tenté de déterminer s'il y a une association à long terme entre la position socio-économique au début du parcours de vie et l’activité physique à l’âge adulte. S'il y en avait une, un deuxième objectif était de déterminer quel modèle théorique en épidémiologie des parcours de vie décrivait le mieux sa forme. Cette thèse comprend trois articles: une recension systématique et deux recherches originales. Dans la recension systématique, des recherches ont été faites dans Medline et EMBASE pour trouver les études ayant mesuré la position socio-économique avant l'âge de 18 ans et l'activité physique à ≥18 ans. Dans les deux recherches originales, la modélisation par équations structurelles a été utilisée pour comparer trois modèles alternatifs en épidémiologie des parcours de vie: le modèle d’accumulation de risque avec effets additifs, le modèle d’accumulation de risque avec effet déclenché et le modèle de période critique. Ces modèles ont été comparés dans deux cohortes prospectives représentatives à l'échelle nationale: la 1970 British birth cohort (n=16,571; première recherche) et l’Enquête longitudinale nationale sur les enfants et les jeunes (n=16,903; deuxième recherche). Dans la recension systématique, 10 619 articles ont été passés en revue par deux chercheurs indépendants et 42 ont été retenus. Pour le résultat «activité physique» (tous types et mesures confondus), une association significative avec la position socio-économique durant l’enfance fut trouvée dans 26/42 études (61,9%). Quand seulement l’activité physique durant les loisirs a été considérée, une association significative fut trouvée dans 21/31 études (67,7%). Dans un sous-échantillon de 21 études ayant une méthodologie plus forte, les proportions d’études ayant trouvé une association furent plus hautes : 15/21 (71,4%) pour tous les types et toutes les mesures d’activité physique et 12/15 (80%) pour l’activité physique de loisir seulement. Dans notre première recherche originale sur les données de la British birth cohort, pour la classe sociale, nous avons trouvé que le modèle d’accumulation de risque avec effets additifs s’est ajusté le mieux chez les hommes et les femmes pour l’activité physique de loisir, au travail et durant les transports. Dans notre deuxième recherche originale sur les données canadiennes sur l'activité physique de loisir, nous avons trouvé que chez les hommes, le modèle de période critique s’est ajusté le mieux aux données pour le niveau d’éducation et le revenu, alors que chez les femmes, le modèle d’accumulation de risque avec effets additifs s’est ajusté le mieux pour le revenu, tandis que le niveau d’éducation ne s’est ajusté à aucun des modèles testés. En conclusion, notre recension systématique indique que la position socio-économique au début du parcours de vie est associée à la pratique d'activité physique à l'âge adulte. Les résultats de nos deux recherches originales suggèrent un patron d’associations le mieux représenté par le modèle d’accumulation de risque avec effets additifs.

Natural history of retinopathy in children and young people with type 1 diabetes

Purpose: To describe the prevalence and natural history of retinopathy in a cohort of children and young people with type 1 diabetes attending a tertiary hospital diabetes clinic. Methods: We analysed retinopathy screening data from 2008 to 2010 on all eligible children using the 'Twinkle' diabetes database and the regional retinal screening database. Results: A total of 88% (149/169) of eligible children were screened in 2008, median age 14 years, 52% male. The prevalence of retinopathy was 19.5% (30/149). All children had background retinopathy grade R1. There was significant difference in median (range) duration of diabetes, 7.7 years (0.6–13.7) vs 5 years (0.2–12.5) (P<0.001) and median (range) HbA1C, 9.1% (7.2–14) vs 8.6% (5.6–13.1) (P=0.02), between the groups with and without retinopathy. At 2- years follow-up, 12/30 (40%) had unchanged retinopathy grade R1, 10/30 (33.3%) showed resolution of changes (R0), 1/30 progressed to maculopathy, and 7/30 had no follow-up data. Median (range) HbA1C in 2008 and 2010 for the groups with stable vs resolved changes was similar, 9.1% (7.2–14.0) and 9.2% (7–14.0) vs 9.5% (7.8–14.0) and 9.2% (8.7–14.0). Of the 119 without retinopathy in 2008, 27 (22.5%) had developed retinopathy within 2 years, including 1 with pre-proliferative retinopathy and 1 with maculopathy. There was no significant difference in HbA1c between those who progressed to retinopathy (8.7% (7.1–13.1)) (8.7% (7.1–13.1)), and those who did not (8.6% (6.3–12.2)). Conclusions: Prevalence of background retinopathy in our cohort was comparable to the previously published reports, with higher HbA1c and longer duration of diabetes being significant risk factors. On short-term follow-up, Grade 1 retinopathy is likely to resolve in a third of patients and remain unchanged in just over a third.

Association of anticholinergic burden with adverse effects in older people with intellectual disabilities:an observational cross-sectional study

BACKGROUND: No studies to date have investigated cumulative anticholinergic exposure and its effects in adults with intellectual disabilities. AIMS: To determine the cumulative exposure to anticholinergics and the factors associated with high exposure. METHOD: A modified Anticholinergic Cognitive Burden (ACB) scale score was calculated for a representative cohort of 736 people over 40 years old with intellectual disabilities, and associations with demographic and clinical factors assessed. RESULTS: Age over 65 years was associated with higher exposure (ACB 1-4 odds ratio (OR) = 3.28, 95% CI 1.49-7.28, ACB 5+ OR = 3.08, 95% CI 1.20-7.63), as was a mental health condition (ACB 1-4 OR = 9.79, 95% CI 5.63-17.02, ACB 5+ OR = 23.74, 95% CI 12.29-45.83). Daytime drowsiness was associated with higher ACB (P<0.001) and chronic constipation reported more frequently (26.6% ACB 5+ v. 7.5% ACB 0, P<0.001). CONCLUSIONS: Older people with intellectual disabilities and with mental health conditions were exposed to high anticholinergic burden. This was associated with daytime dozing and constipation.

Has your work worked you too hard? Physically demanding work and disability in a sample of the older Irish population

There is a heightened need for the practitioner to be alert to the determinants of functional limitations and disabilities owing to the ageing workforce. This study investigated the association between work type and disability in older age in both the paid and the previously unexplored, unpaid worker (household labour).Data on demographic factors, physical measurements, work history and functional status were collected on three hundred and fifty seven 57-80-year-olds. Past or present work was identified as either physically demanding or not. Functional limitations and activities of daily living (ADL) disabilities were assessed using validated scales. Logistic regression was used to examine the relationship between the dependent variables and work type (physically demanding work or not physically demanding work).Over half of the sample reported doing physically demanding work. 20 % had complete function (n = 67), 65 % (n = 223) functional limitations and 15 % (n = 53) ADL disability. Physically demanding work was associated with functional limitations [OR 2.52 (1.41, 4.51), p = 0.01] and ADL disability [OR 2.10 (1.06, 4.17), p = 0.03] after adjustment for a measure of obesity and gender. When gender stratified, looking only at females, physically demanding work was associated with ADL disability [OR 2.79 (1.10, 7.07), p = 0.03] adjusted for a measure of obesity and household labour. Physically demanding work was related to functional limitations and ADL disability in older age. This is valuable information to inform practitioners in the treatment of older people with functional limitations and disabilities and in guiding interventions in the prevention of work related disability.

Nurses’ perceptions of nursing presence and the relationship between nursing presence and moral sensitivity in nurses working with people with dementia in residential care

Aim: The aim of this study was to measure nursing presence among nurses caring for people with dementia in residential care settings, and to investigate the relationship between nursing presence and moral sensitivity. Background: Nursing presence is a core relational skill in nursing and holds many benefits for nurses and their patients. Moral sensitivity is defined as how one recognises the moral elements of a situation, and how one’s moral or ethical decision making may impact on an individual. Methods: A descriptive, cross sectional quantitative methodology was used with a sample of 150 registered nurses. The Presence of Nursing Scale for Registered Nurses was used to investigate nursing presence, and the Moral Sensitivity Questionnaire for moral sensitivity. Results: Findings from the study demonstrated that participants agreed with the majority of elements of nursing presence, (mean 76.97, SD= 7.51). A mean score of 36.22 was evidence of a well developed level of moral sensitivity in participants. Nurses who perceived themselves to be highly present to their patients also scored highest on certain elements of moral sensitivity such as moral strength. Nursing presence was also found to be more developed in those participants that rated themselves as having higher levels of expertise based on Benner’s (1984) definitions. Older nurses also scored higher on nursing presence. There was a high level of agreement that factors such as lack of time (n=133), and heavy workload influenced nursing presence. Nurses, who were older and had longer clinical experience, were shown to have greater moral strength. There were differences in elements of moral sensitivity between groups of nurses who ranked themselves according to Benner’s (1984) competence framework with higher scores evident in the more expert groups. Conclusion: Overall, this study showed that participants had a well developed level of nursing presence, and certain elements of moral sensitivity are positively related to nursing presence. Nursing presence appears to be linked to the level of expertise of the nurse but factors such as time and workload do influence nursing presence.

Irish and Jordanian general student nurses’ attitudes towards people with mental illness (PWMI) and their relationship to cultural and religious beliefs

Background Attitudes held and cultural and religious beliefs of general nursing students towards individuals with mental health problems are key factors that contribute to the quality of care provided. Negative attitudes towards mental illness and to individuals with mental health problems are held by the general public as well as health professionals. Negative attitudes towards people with mental illness have been reported to be associated with low quality of care, poor access to health care services and feelings of exclusion. Furthermore, culture has been reported to play a significant role in shaping people’s attitudes, values, beliefs, and behaviours, but has been poorly investigated. Research has also found that religious beliefs and practices are associated with better recovery for individuals with mental illness and enhanced coping strategies and provide more meaning and purpose to thinking and actions. The literature indicated that both Ireland and Jordan lack baseline data of general nurses’ and general nursing students’ attitudes towards mental illness and associated cultural and religious beliefs. Aims: To measure general nursing students’ attitudes towards individuals with mental illness and their relationships to socio-demographic variables and cultural and religious beliefs. Method: A quantitative descriptive study was conducted (n=470). 185 students in Jordan and 285 students in Ireland participated, with a response rate of 86% and 73%, respectively. Data were collected using the Community Attitudes towards the Mentally Ill instrument and a Cultural and Religious Beliefs Scale to People with Mental Illness constructed by the author. Results: Irish students reported more positive attitudes yet did not have strong cultural and religious beliefs compared to students from Jordan. Country of origin, considering a career in mental health nursing, knowing somebody with mental illness and cultural and religious beliefs were the most significant variables associated with students’ attitudes towards people with mental illness. In addition, students living in urban areas reported more positive attitudes to people with mental illness compared to those living in rural areas.

Examination of body image among Canadian adolescents: Relations with physical activity and screen time

Background: Adolescence is a period of life associated with self-perceptions of negative body image. Physical activity levels are low and screen time levels are also high during this stage. These perceptions and behaviours are associated with poor health outcomes, making research on their determinants important. With adolescent populations, certain groups may be at higher risk of body dissatisfaction than others, and body dissatisfaction may influence individual physical activity and screen time levels. Objectives: The objectives of this thesis were to: 1) describe body image among young Canadians, examining possible health inequalities 2) estimate the strength and significance of associations between body satisfaction, physical activity and screen time, and 3) examine the potential etiological role of biological sex. Methods: Objective 1: The 2013/2014 Health Behaviour in School-aged Children study was employed. Sex-stratified Rao-Scott chi-square analyses were conducted to examine associations between socio-demographic factors and body satisfaction. Objective 2: The 2005/2006 and 2013/2014 cross-sectional and 2006 longitudinal HBSC data sets were used. Sex-stratified modified Poisson regressions were conducted and risk estimates and associated confidence intervals obtained. Results: Objective 1: Among males, being older, of East and Southeast Asian ethnicity, and reporting low SES all were associated with body dissatisfaction. Among females, being older, of Arab and West Asian or African ethnicity, being born in Canada, and reporting low SES were all associated with being body dissatisfied. Objective 2: Cross-sectionally, males who reported ‘too fat’ body dissatisfaction were more likely to be physically inactive. Adolescents of both sexes who reported ‘too fat’ body dissatisfaction were more likely to engage in high levels of screen time. Data from the longitudinal component supported the idea that male ‘too fat’ body dissatisfaction temporally leads to physical inactivity, but showed an inverse relationship between body dissatisfaction and screen time. Conclusions: Objective 1: Future prevention efforts in Canada should target subgroups to effectively help those at greatest risk of body dissatisfaction, and ameliorate potential inequalities at the population level. Objective 2: The presence of these relationships may inform future interventions as part of a multi-factorial etiology, in order to increase physical activity and decrease screen time among youth.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study

AIMS AND OBJECTIVES: To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

BACKGROUND: Pain management in end-stage dementia is a fundamental aspect of end of life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care.

DESIGN: A qualitative study using semi-structured interviews and thematic analysis to examine data.

METHODS: 24 registered nurses caring for people dying with advanced dementia were recruited from ten nursing homes, three hospices, and two acute hospitals across a region of the United Kingdom. Interviews were conducted between June 2014 and September 2015.

RESULTS: Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified.

CONCLUSIONS: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

RELEVANCE TO CLINICAL PRACTICE: Nurses considered pain management fundamental to end of life care provision; however, nurses working in acute care and nursing home settings may be under-supported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology. This article is protected by copyright. All rights reserved.