Search results for: parental distress

Authors: Smriti Gour, Neelam Pandey

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The objective of this study was to describe and analyse the mutual relationship between the coping mechanisms used by the families of a child with Autism Spectrum Disorder (ASD) and family dynamics and the effect sibling interactions have on the dynamics and coping mechanisms in an urban setup. In-depth interviews were conducted for 25 families, with 4 members each in the Delhi NCR area in India. The families who were interviewed had a younger child who had received a diagnosis of ASD between the ages of 5-12. The in-depth questionnaires contained open-ended questions and the interviews were conducted separately for the mother, father and the typically developing sibling. The key findings of the study suggested that lack of communication was a common factor in most families (n=19) leading to other difficulties like stress and relationship dysfunction. It also fostered a fallacious perception of the relationship dynamics in the family in most of the interviewed families and changed depending on the family member being interviewed. In families where the typically developing elder sibling had a good relationship with the autistic child, the family dynamics were found to be more stable, and the overall family well-being was better maintained. The coping mechanisms employed by the families were also more positive and tended to work better if the typically developing sibling maintained a positive and interactive relationship with the parents and the autistic child. The type of coping mechanisms had a major impact on the relationship between the parents and in dictating the dynamics of the family of the child with ASD. Spirituality, professional help, family support and household help emerged to be the most effective coping mechanisms for the families, with spirituality emerging to be the most positive and effective coping mechanism in the families interviewed.

Keywords: autism spectrum disorder, coping mechanism, family dynamics, parental relationships, siblings

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Authors: Lakmali Anthony, Madeline Gillies

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Background: Colorectal cancer (CRC) is usually managed with surgical resection. Many of the outcomes traditionally used to define successful operative management, such as resection margin, do not adequately reflect patients’ experience. Patient-reported outcomes (PRO), such as Health-Related Quality of life (HRQoL), provide a means by which the impact of surgery for cancer can be reported in a patient-centered way. HRQoL has previously been shown to be impacted by psychosocial, behavioral and disease-specific characteristics. This exploratory cross-sectional study aims to; (1) describe postoperative HRQoL in patients who underwent primary resection in a regional Australian hospital; (2) describe the prevalence of anxiety, depression and clinically significant fear of cancer recurrence (FCR) in this population; and (3) identify demographic, psychosocial, disease and treatment factors associated with poorer self-reported HRQoL. Methods: Consecutive patients who had resection of colorectal cancer in a single regional Australian hospital between 2015 and 2022 were eligible. Participants were asked to complete a survey instrument designed to assess HRQoL, as well as validated instruments that assess several other psychosocial PROs hypothesized to be associated with HRQoL; emotional distress, fear of cancer recurrence, social support, dispositional optimism, body image and spirituality. Demographic and disease-specific data were also collected via medical record review. Results: Forty-six patients completed the survey. Clinically significant levels of fear of recurrence as well as emotional distress, were present in this group. Many domains of HRQoL were significantly worse than an Australian reference population for CRC. Demographic and disease factors associated with poor HRQoL included smoking and ongoing adjuvant systemic therapy. The primary operation was not associated with HRQoL; however, the operative approach (laparoscopic vs. open) was associated with HRQoL for these patients. All psychosocial factors measured were associated with HRQoL, including cancer worry, emotional distress, body image and dispositional optimism. Conclusion: HRQoL is an important outcome in surgery for both research and clinical practice. This study provides an overview of the quality of life in a regional Australian population of postoperative colorectal cancer patients and the factors that affect it. Understanding HRQoL and awareness of patients particularly vulnerable to poor outcomes should be used to aid the informed consent and shared decision-making process between surgeon and patient.

Keywords: surgery, colorectal, cancer, PRO, HRQoL

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Authors: K. P. Gogoi

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The current research study investigates the motivational pattern viz Power motivation among the tribal college students of Assam. The sample consisted of 240 college students (120 tribal and 120 non-tribal) ranging from 18-24 years, 60 males and 60 females for both tribal’s and non-tribal’s. Attempts were made to include all the prominent tribes of Assam viz. Thematic Apperception Test, Power motive Scale and a semi structured interview schedule were used to gather information about their family types, parental deprivation, parental relations, social and political belongingness. Mean, Standard Deviation, and t-test were the statistical measures adopted in this 2x2 factorial design study. In addition to this discriminant analysis has been worked out to strengthen the predictive validity of the obtained data. TAT scores reveal significant difference between the tribal’s and non-tribal on power motivation. However results obtained on gender difference indicates similar scores among both the cultures. Cross validation of the TAT results was done by using the power motive scale by T. S. Dapola which confirms the results on need for power through TAT scores. Power motivation has been studied in three directions i.e. coercion, inducement and restraint. An interesting finding is that on coercion tribal’s score high showing significant difference whereas in inducement or seduction the non-tribal’s scored high showing significant difference. On the other hand on restraint no difference exists between both cultures. Discriminant analysis has been worked out between the variables n-power, coercion, inducement and restraint. Results indicated that inducement or seduction (.502) is the dependent measure which has the most discriminating power between these two cultures.

Keywords: power motivation, tribal, social, political, predictive validity, cross validation, coercion, inducement, restraint

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Authors: M. Trousselard, D. Steiler, C. Drogou, P. van-Beers, G. Lamour, S. N. Crosnier, O. Bouilland, P. Dubost, M. Chennaoui, D. Léger

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According to published data, undersea navigation for long periods (nuclear-powered ballistic missile submarine, SSBN) constitutes an extreme environment in which crews are subjected to multiple stresses, including the absence of natural light, illuminance below 1,000 lux, and watch schedules that do not respect natural chronobiological rhythms, for a period of 60-80 days. These stresses seem clearly detrimental to the submariners’ sleep, with consequences for their affective (seasonal affective disorder-like) and cognitive functioning. In the long term, there are abundant publications regarding the consequences of sleep disruption for the occurrence of organic cardiovascular, metabolic, immunological or malignant diseases. It seems essential to propose countermeasures for the duration of the patrol in order to reduce the negative physiological effects on the sleep and mood of submariners. Light therapy, the preferred treatment for dysfunctions of the internal biological clock and the resulting seasonal depression, cannot be used without data to assist knowledge of submariners’ chronobiology (melatonin secretion curve) during patrols, given the unusual characteristics of their working environment. These data are not available in the literature. The aim of this project was to assess, in the course of two studies, the benefits of two environmental techniques for managing chronobiological stress: techniques for optimizing potential (TOP; study 1)3, an existing programme to help in the psychophysiological regulation of stress and sleep in the armed forces, and dawn and dusk simulators (DDS, study 2). For each experiment, psychological, physiological (sleep) or biological (melatonin secretion) data were collected on D20 and D50 of patrol. In the first experiment, we studied sleep and depressive distress in 19 submariners in an operational setting on board an SSBM during a first patrol, and assessed the impact of TOP on the quality of sleep and depressive distress in these same submariners over the course of a second patrol. The submariners were trained in TOP between the two patrols for a 2-month period, at a rate of 1 h of training per week, and assigned daily informal exercises. Results show moderate disruptions in sleep pattern and duration associated with the intensity of depressive distress. The use of TOP during the following patrol improved sleep and depressive mood only in submariners who regularly practiced the techniques. In light of these limited benefits, we assessed, in a second experiment, the benefits of DDS on chronobiology (daily secretion of melatonin) and depressive distress. Ninety submariners were randomly allocated to two groups, group 1 using DDS daily, and group 2 constituting the control group. Although the placebo effect was not controlled, results showed a beneficial effect on chronobiology and depressive mood for submariners with a morning chronotype. Conclusions: These findings demonstrate the difficulty of practicing the tools of psychophysiological management in real life. They raise the question of the subjects’ autonomy with respect to using aids that involve regular practice. It seems important to study autonomy in future studies, as a cognitive resource resulting from the interaction between internal positive resources and “coping” resources, to gain a better understanding of compliance problems.

Keywords: chronobiology, light therapy, seasonal affective disorder, sleep, stress, stress management, submarine

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Authors: Rahaf Alasiri, Tarek Alghamdi, Abdullah Zarkan

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Background: Due to measures such as school closure, social distancing, and virtual teaching during the pandemic, primary school children's psychological well-being is greatly affected. These measures have short and long-term consequences on the children's well-being and mental health. Identifying these consequences is important. Aim: This study aimed to evaluate mood and behavior changes in children who attended school virtually. Subjects and methods: This is a cross-sectional study conducted among children and their parents who visited the outpatient clinic. A self-administered questionnaire was given to the parents of children aged between 6 to 14 years. The questionnaire includes socio-demographic characteristics, Conor's modifies scale to assess the attention deficit hyperactivity disorder (ADHD) of children, and the parental stress scale (PSS) to assess the stress symptoms of the parents. Results: Of the 66 surveyed children, 60.6% were aged between 10 to 14 years old, with the female being dominant (77.3%). The most common medical condition was asthma (7.6%), and nearly two-thirds (63.6%) indicated good health conditions during the pandemic. There was a significant inverse correlation observed between ADHD score and PSS score (r=-0.387). No significant differences are in ADHD and PSS scores in relation to the socio-demographic characteristics of the children, including age, gender, and having an associated medical condition (p>0.05). Conclusion: During the pandemic, children who attended virtual classes did not seem to affect even with restrictions. Most children indicated good health conditions during the pandemic. However, it is surprising to know that in spite of children’s high spirits during the pandemic, their parents were seen to have an increased level of stress. Strategies to address parents’ psychological disorders during the pandemic are warranted.

Keywords: children's mood, COVID-19, ADHD, parental stress

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Authors: Chasity O'Connell

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The use of social media and networking sites play a significant role in the lives of adolescents and adults. While research supports that social support and connectedness in general is beneficial; the nature of communication and interaction through social media and its subsequent benefits and impacts could be arguably different. As such, this research aims to explore a specific facet of social media interaction called fear of missing out, or 'FOMO' and investigate its relationship within the context of life stressors, social media usage, anxiety and depressive-symptoms, mindfulness, and psychological well-being. FOMO is the 'uneasy and sometimes all-consuming feeling that you’re missing out—that your peers are doing, in the know about, or in possession of more or something better than you'. Research suggests that FOMO can influence an individual’s level of engagement with friends and social media consumption, drive decisions on participating in various online or offline activities, and ultimately impact mental health. This study hopes to explore the potentially mitigating influence of mindfulness and values-based interventions in reducing the discomfort and distress that can accompany FOMO and increase the sense of psychological well-being in allowing for a more thoughtful and deliberate engagement in life. This study will include an intervention component wherein participants (comprised of university students and adults in the community) will partake in a six-week, group-based intervention focusing on learning practical mindfulness skills and values-exploration exercises (along with a waitlist control group). In doing so, researchers hope to understand if interventions centered on increasing one’s awareness of the present moment and one’s internal values impact decision-making and well-being with regard to social interaction and relationships.

Keywords: FOMO, mindfulness, values, stress, psychological well-being, intervention, distress

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Authors: Maryam Borjali

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Introduction. Mortality due to noncommunicable diseases has increased in the world today with the advent of demographic shifts, growing age, and lifestyle patterns in the world, which have been affected by economic and social crises. Congenital heart defects are one of the forms of diseases that have raised infant mortality worldwide. e objective of present study was to identify nonmedical determinants related to this abnormality from the mother’s perspectives. Methods. is research was a qualitative study and the data collection method was a semistructured interview with mothers who had children with congenital heart diseases referring to the Shahid Rajaei Heart Hospital in Tehran, Iran. A thematic analysis approach was employed to analyze transcribed documents assisted by MAXQDA Plus version 12. Results. Four general themes and ten subthemes including social contexts (social harms, social interactions, and social necessities), psychological contexts (mood disorders and mental well-being), cultural contexts (unhealthy lifestyle, family culture, and poor parental health behaviors), and environmental contexts (living area and polluted air) were extracted from interviews with mothers of children with congenital heart diseases. Conclusions. Results suggest that factors such as childhood poverty, lack of parental awareness of congenital diseases, lack of proper nutrition and health facilities, education, and lack of medical supervision during pregnancy were most related with the birth of children with congenital heart disease from mothers’ prospective. In this regard, targeted and intersectorial collaborations are proposed to address nonmedical determinants related to the incidence of congenital heart diseases.

Keywords: congenital_cou, cultural, social, platform

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Authors: Selim A., Albasher N., Bakrmom G., Alanzi S.

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Irritable bowel syndrome (IBS) is a chronic functional bowel disorder characterized by abdominal discomfort or pain and associated with alteration in frequency and/or form of bowel habit among other symptoms. This diagnosis is associated with increased levels of psychological distress, maladaptive coping, genetic risk factors, abnormal small and colonic intestine transit, change in stool frequency or form and abdominal discomfort or pain. Aim: The aim of the study was to assess psychological alarm among individuals suffering from Irritable Bowel Syndrome (IBS). Methods: A cross-sectional correlational research design was used to conduct the current study. A convenience sample of 504 participants was included in the present study. Data were collected using a self-report questionnaire. The questionnaire included socio-demographic data, ROME III to identify Irritable Bowel Syndrome (IBS) and Psychological Alarm Questionnaire. Results: Out of 504 participants who reported abdominal discomfort, 297 (58.9 %) participants met the diagnostic criteria of IBS. The mean age of the IBS participants was 30.16 years, females composed 75.1% of the IBS participants, and 55.2% did not seek medical help. Psychological alarms such as feeling anxious, feeling depressed, having suicidal ideations, bodily pain, having impaired functioning due to pain and feeling unable to cope with pain were significantly high among IBS individuals when compared to individuals not suffering from IBS. Psychological alarms such as feeling anxious, feeling depressed, having suicidal ideations, bodily pain, having impaired functioning due to pain and feeling unable to cope with pain were significantly high among IBS individuals compared to individuals not suffering from IBS. Conclusion: IBS is highly associated with significant psychological alarms including depression, anxiety and suicidal ideas.

Keywords: abdominal pain , irritable bowel syndrome, distress, psychological alarms

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Authors: Birsel Canan Demirbag, Kıymet Yesilcicek Calik, Hacer Kobya Bulut

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Objective: This study was conducted to evaluate the problems of women over 65 with incontinence diagnosis. Methods: This descriptive study was conducted with women over 65 with incontinence diagnosis in four Family Health Centers in a city in Eastern Black Sea region between November 1, and December 20, 2015. 203, 107, 178, 180 women over 65 were registered in these centers and 262 had incontinence diagnosis at least once and had an ongoing complaint. 177 women were volunteers for the study. During home visits and using face-to-face survey methodology, participants were given socio-demographic characteristics survey, Sandvik severity scale, Incontinence Quality of Life Scale, Urogenital Distress Inventory and a questionnaire including challenges experienced due to incontinence developed by the researcher. Data were analyzed with SPSS program using percentages, numbers, Chi-square, Man-Whitney U and t test with 95% confidence interval and a significance level p <0.05. Findings: 67 ± 1.4 was the mean age, 2.05 ± 0.04 was parity, 44.5 ± 2.12 was menopause age, 66.3% were primary school graduates, 45.7% had deceased spouse, 44.4% lived in a large family, 67.2% had their own room, 77.8% had income, 89.2% could meet self- care, 73.2% had a diagnosis of mixed incontinence, 87.5% suffered for 6-20 years % 78.2 had diuretics, antidepressants and heart medicines, 20.5% had urinary fecal cases, 80.5% had bladder training at least once, 90.1% didn’t have bladder diary calendar/control training programs, 31.1% had hysterectomy for prolapse, 97.1'i% was treated with lower urinary tract infection at least once, 66.3% saw a doctor to get drug in the last three months, 76.2 could not go out alone, 99.2 % had at least one chronic disease, 87.6 % had constipation complain, 2.9% had chronic cough., 45.1% fell due to a sudden rise for toilet. Incontinence Impact Questionnaire Average score was (QOL) 54.3 ± 21.1, Sandvik score was 12.1 ± 2.5, Urogenital Distress Inventory was 47.7 ± 9.2. Difficulties experienced due to incontinence were 99.5% feeling of unhappiness, 67.1% constant feeling of urine smell due to failing to change briefs frequently, % 87.2 move away from social life, 89.7 unable to use pad, 99.2% feeling of disturbing households / other individuals, 87.5% feel dizziness/fall due to sudden rise, 87.4% feeling of others’ imperceptions about the situation, % 94.3 insomnia, 78.2 lack of assistance, 84.7% couldn’t afford urine protection briefs. Results: With this study, it was found out that there were a lot of unsolved issues at individual and community level affecting the life quality of women with incontinence. In accordance with this common problem in women, to facilitate daily life it is obvious that regular home care training programs at institutional level in our country will be effective.

Keywords: health problems, incontinence, incontinence quality of life questionnaire, old age, urinary urogenital distress inventory, Sandviken severity, women

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Authors: Dina Maratovna Aikenova

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Child care policy must be a priority area of public authorities in any country. This study investigates child care policy in Kazakhstan in accordance with the current position of children and laws. The results show that Kazakhstan policy in this sphere needs more systematic model including state economic and social measures, parental involvement and role of non-government organizations.

Keywords: children, Kazakhstan, policy, vulnerability

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Authors: Yasir Ali, Farhatullah

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The present study was conducted to estimate the genetic variability, heritability and genetic advance in six parental lines and their 56 genotypes derived from five introgressed brassica populations on the basis of morphological and biochemical traits. The experiment was laid out in a randomized complete block design with two replications at The University of Agriculture Peshawar-Pakistan during growing season of 2015-2016. The ANOVA of all traits of F5:6 populations showed highly significant differences (P ≤ 0.01) for all morphological and biochemical traits. Among F5:6 populations, the genotype 2(526) was earlier in flowering (108.65 days), and genotype 14(485) was earlier in maturity (170 days). Tallest plants (182.5 cm), largest main raceme (91.5 cm) and maximum number of pods (80.5) on main raceme were recorded for genotype 17(34). Maximum primary branches plant-1(6.2) and longest pods (10.26 cm) were recorded for genotype 15, while genotype 16(171) had more seeds pod⁻¹ (22) and gave maximum yield plant-1 (30.22 g). The maximum 100-seed weight (0.60 g) was observed for genotype 10(506) while high protein content (22.61%) was recorded for genotype 4(99). Maximum oil content (54.08 %) and low linoleic acid (7.07 %) were produced by genotype (12(138) and low glucosinolate (59.01 µMg⁻¹) was recorded for genotype 21(113). The genotype 27(303) having high oleic acid content (51.73 %) and genotype 1(209) gave low erucic acid (35.97 %). Among the F5:6 populations moderate to high heritability observed for all morphological and biochemical traits coupled with high genetic advance. Cluster analysis grouped the 56 F5:6 populations along their parental lines into seven different groups. Each group was different from the other group on the basis of morphological and biochemical traits. Moreover all the F5:6 populations showed sufficient variability. Genotypes 10(506) and 16(171) were superior for high seed yield⁻¹, 100-seeds weight, and seed pod⁻¹ and are recommended for future breeding program.

Keywords: Brassicaceae, biochemical characterization, introgression, morphological characterization

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Authors: Lotha Valan, Åsa Hörnsten, Ulf Isaksson

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Introduction: Sweden has a national child health care program (CHCP) where all parents are offered support to raise their children and support them for lifelong health. A systematic review concludes that there is a request for guidance in using the internet effectively for the health purposes of their children. However, a study about internet use among young mothers means that the internet is not always easy to navigate for parents, and they may need support. To fill this gap and develop a digital channel to complement the child health care (CHC) for the support of parents of children within CHC, there is a demand to investigate parents' needs in relation to this purpose. Methods: The study had a qualitative approach using focus group interviews with parents. The interview data were analyzed using qualitative content analysis. Results: The main theme highlights that parents expected that a digital support channel would be something that might strengthen them toward independence concerning the care of their children in a positive way. However, they also felt that they needed personal support and that relationships with other parents and the child health care nurse were significant and meaningful. Another parental desire that emerged was that a future digital channel would facilitate and simplify access to care, and they suggested having both planned and urgent times available for parents to book. The digital channel was expected to make this possible and be a good complement to the physical contacts the traditional child healthcare currently offers. Discussion/conclusions: The parents in this study believed that digital solutions could increase their parental power in relation to the care of their children. Examples were given as nurse-led parent groups where parents with similar problems and experiences around their children could support each other and were expected to strengthen them over time. The parents stressed that a planned digital support channel also needs satisfactory solutions for both contact and response. It was suggested that there should be bookable times for both planned and urgent needs and also the possibility of rescheduling visits.

Keywords: child healthcare, parents, digital support, nursing

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Authors: Shu-Ching Chen, Li-Yun Lee

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The purpose of the study was to identify the factors associated with head and neck cancer-related lymphoedema (HNCRL)-related symptoms, body image, and HNCRL-related functional outcomes among patients with resected advanced head and neck cancer. A cross-sectional correlational design was conducted to examine the predictors of HNCRL-related functional outcomes in patients with resected advanced head and neck cancer. Eligible patients were recruited from a single medical center in northern Taiwan. Consecutive patients were approached and recruited from the Radiation Head and Neck Outpatient Department of this medical center. Eligible subjects were assessed for the Symptom Distress Scale–Modified for Head and Neck Cancer (SDS-mhnc), Brief International Classification of Functioning, Disability and Health (ICF) Core Set for Head and Neck Cancer (BCSQ-H&N), Body Image Scale–Modified (BIS-m), The MD Anderson Head and Neck Lymphedema Rating Scale (MDAHNLRS), The Foldi’s Stages of Lymphedema (Foldi’s Scale), Patterson’s Scale, UCLA Shoulder Rating Scale (UCLA SRS), and Karnofsky’s Performance Status Index (KPS). The results showed that the worst problems with body HNCRL functional outcomes. Patients’ HNCRL symptom distress and performance status are robust predictors across over for overall HNCRL functional outcomes, problems with body HNCRL functional outcomes, and activity and social functioning HNCRL functional outcomes. Based on the results of this period research program, we will develop a Cancer Rehabilitation and Lymphedema Care Program (CRLCP) to use in the care of patients with resected advanced head and neck cancer.

Keywords: head and neck cancer, resected, lymphedema, symptom, body image, functional outcome

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Authors: Paul Narh Doku

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The relationship between parental HIV/AIDS status or death and child mental health is well known, although the role of child maltreatment as a confounder or mediator in this relationship remains uncertain. This study examined the potential path mechanism through child maltreatment mediating the link between HIV/AIDS family dysfunction trajectories and psychosocial problems. A cross-sectional survey was conducted in the Lower Manya Municipal Assembly of Ghana. A questionnaire which consisted of the Strengths and Difficulties Questionnaire (SDQ), Social and Health Assessment (SAHA), Rosenberg Self-Esteem Scale (RSES), and the Conflict Tactics Scale (CTS) was completed by 291 adolescents. Controlling for relevant sociodemographic confounders, mediation analyses using linear regression were fitted to examine whether the association between family dysfunction and psychosocial problems is mediated by child maltreatment. The results indicate that, among adolescents, child maltreatment fully mediated the association between being orphaned by AIDS and self-esteem, delinquency and risky behaviours, and peer problems. Similarly, child maltreatment fully mediated the association between living with an HIV/AIDS-infected parent and self-esteem, delinquency and risky behaviours, depression/emotional problems, and peer problems. Partial mediation was found for hyperactivity. Child maltreatment mediates the association between the family dysfunction trajectories of parental HIV/AIDS or death and psychosocial problems among adolescents. This implies that efforts to address child maltreatment among families affected by HIV/AIDS may be helpful in the prevention of psychosocial problems among these children, thus enhancing their well-being. The findings, therefore, underscore the need for comprehensive psychosocial interventions that address both the unique negative exposures of HIV/AIDS and maltreatment for children affected by HIV.

Keywords: child maltreatment, child abuse, mental health, psychosocial problems, domestic violence, HIV/AIDS, adolescents

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Authors: Rebecca Greenberg, Nipa Chauhan, Rashad Rehman

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Paternalism, in its traditional form, seems largely incompatible with Western medicine. In contrast, Family-Centred Care, a partial response to historically authoritative paternalism, carries its own challenges, particularly when operationalized as family-directed care. Specifically, in neonatology, decision-making is left entirely to Substitute Decision Makers (most commonly parents). Most models of shared decision-making employ both the parents’ and medical team’s perspectives but do not recognize the inherent asymmetry of information and experience – asking parents to act like physicians to evaluate technical data and encourage physicians to refrain from strong medical opinions and proposals. They also do not fully appreciate the difficulties in adjudicating which perspective to prioritize and, moreover, how to mitigate disagreement. Introducing a mild form of paternalism can harness the unique skillset both parents and clinicians bring to shared decision-making and ultimately work towards decision-making in the best interest of the child. The notion expressed here is that within the model of shared decision-making, mild paternalism is prioritized inasmuch as optimal care is prioritized. This mild form of paternalism is known as Beneficent Paternalism and justifies our encouragement for physicians to root down in their own medical expertise to propose treatment plans informed by medical expertise, standards of care, and the parents’ values. This does not mean that we forget that paternalism was historically justified on ‘beneficent’ grounds; however, our recommendation is that a re-integration of mild paternalism is appropriate within our current Western healthcare climate. Through illustrative examples from the NICU, this paper explores the appropriateness and merits of Beneficent Paternalism and ultimately its use in promoting family-centered care, patient’s best interests and reducing moral distress. A distinctive feature of the NICU is the fact that communication regarding a patient’s treatment is exclusively done with substitute decision-makers and not the patient, i.e., the neonate themselves. This leaves the burden of responsibility entirely on substitute decision-makers and the clinical team; the patient in the NICU does not have any prior wishes, values, or beliefs that can guide decision-making on their behalf. Therefore, the wishes, values, and beliefs of the parent become the map upon which clinical proposals are made, giving extra weight to the family’s decision-making responsibility. This leads to why Family Directed Care is common in the NICU, where shared decision-making is mandatory. However, the zone of parental discretion is not as all-encompassing as it is currently considered; there are appropriate times when the clinical team should strongly root down in medical expertise and perhaps take the lead in guiding family decision-making: this is just what it means to adopt Beneficent Paternalism.

Keywords: care, ethics, expertise, NICU, paternalism

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Authors: Adel Hashlan

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Parent and family engagement plays a crucial role in supporting the success of students with special needs in educational settings. This paper explores the significance of parental involvement in special education, examining its impact on academic achievement, social-emotional development, and overall well-being. Drawing on a review of current literature and empirical research, the paper highlights the benefits of meaningful collaboration between educators, parents, and families in promoting positive outcomes for students with diverse learning needs. The abstract begins by establishing the importance of parent and family engagement in special education, emphasizing its multifaceted impact on student success. It then outlines the key components of effective parent and family involvement initiatives, including communication strategies, collaboration frameworks, and partnership-building approaches. Additionally, the abstract addresses common barriers to parental involvement and explores strategies for overcoming these challenges, such as cultural responsiveness, accessibility, and empowerment. Furthermore, the abstract discusses the implications of parent and family engagement for educational policy and practice, emphasizing the need for systemic support and resource allocation to facilitate meaningful partnerships between schools and families. It concludes by underscoring the importance of ongoing research and professional development efforts to enhance the effectiveness of parent and family engagement initiatives in special education and maximize the potential for student achievement and well-being. Overall, this paper contributes to the growing body of literature on parent and family engagement in special education, providing insights into best practices, challenges, and opportunities for fostering collaborative partnerships that support the diverse needs of students with disabilities.

Keywords: special education, autism, parent, school

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Authors: Linda Richter

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Background and Significance: The influence of parents on their children’s attitudes and behaviors is immense, even as children grow out of what one might assume to be their most impressionable years and into teenagers. This study specifically examines the potential that parents have to prevent or reduce the risk of adolescent substance use, even in the face of considerable environmental influences to use nicotine, alcohol, or drugs. Methodology: The findings presented are based on a nationally representative survey of 1,014 teens aged 12-17 living in the United States. Data were collected using an online platform in early 2018. About half the sample was female (51%), 49% was aged 12-14, and 51% was aged 15-17. The margin of error was +/- 3.5%. Demographic data on the teens and their families were available through the survey platform. Survey items explored adolescent respondents’ exposure to addictive substances; the extent to which their sources of information about these substances are reliable or credible; friends’ and peers’ substance use; their own intentions to try substances in the future; and their relationship with their parents. Key Findings: Exposure to nicotine, alcohol, or other drugs and misinformation about these substances were associated with a greater likelihood that adolescents have friends who use drugs and that they have intentions to try substances in the future, which are known to directly predict actual teen substance use. In addition, teens who reported a positive relationship with their parents and having parents who are involved in their lives had a lower likelihood of having friends who use drugs and of having intentions to try substances in the future. This relationship appears to be mediated by parents’ ability to reduce the extent to which their children are exposed to substances in their environment and to misinformation about them. Indeed, the findings indicated that teens who reported a good relationship with their parents and those who reported higher levels of parental monitoring had significantly higher odds of reporting a lower number of risk factors than teens with a less positive relationship with parents or less monitoring. There also were significantly greater risk factors associated with substance use among older teens relative to younger teens. This shift appears to coincide directly with the tendency of parents to pull back in their monitoring and their involvement in their adolescent children’s lives. Conclusion: The survey findings underscore the importance of resisting the urge to completely pull back as teens age and demand more independence since that is exactly when the risks for teen substance use spike and young people need their parents and other trusted adults to be involved more than ever. Particularly through the cultivation of a healthy, positive, and open relationship, parents can help teens receive accurate and credible information about substance use and also monitor their whereabouts and exposure to addictive substances. These findings, which come directly from teens themselves, demonstrate the importance of continued parental engagement throughout children’s lives, regardless of their age and the disincentives to remaining involved and connected.

Keywords: adolescent, parental monitoring, prevention, substance use

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Authors: Myriam Rousseau, Marie-Hélène Poulin, Suzie McKinnon, Jacinthe Bourassa

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Context: There is a growing demand for effective training programs for parents of children with autism spectrum disorders. While traditional in-person training is effective, it can be difficult for some parents to participate due to distance, time, and cost. Telepractice, a form of distance education, could be a viable alternative to address these challenges. Research objective: The objective of this study is to explore the experiences of parents of children with autism who participated in a training program offered by telepractice in order to document: 1) the experience of parents who participated in a program telepractice training program for autistic children, 2) parental satisfaction with the telepractice modality, and 3) potential benefits of using telepractice to deliver training programs to parents of autistic children. Method: This study followed a qualitative research design, and Braun and Clarke's six-step procedure was used for the thematic analysis of the comments provided by parents. Data were collected through individual interviews with parents who participated in the project. The analysis focused on identifying patterns and themes in the comments in order to better understand parents' experiences with the telepractice modality. Results: The study revealed that parents were generally satisfied with the telepractice modality, as it was easy to use and enabled a better balance between work and family. This modality also enabled parents to share and receive mutual support. Despite the positive results, it is still relevant to offer training in different modalities to meet the different needs of parents. Conclusion: The study shows that parents of children with autism are generally satisfied with telepractice as a training modality. The results suggest that telepractice can be an effective alternative to traditional face-to-face training. The study highlights the importance of taking parents' needs and preferences into account when designing and implementing training programs.

Keywords: parents, children, training, telepractice

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Authors: Ayse Ozbil, Gorsev Argin, Demet Yesiltepe

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Data for this cross-sectional study were drawn from questionnaires conducted in 10 elementary schools (1000 students, ages 12-14) located in Istanbul, Turkey. School environments (1600 meter buffers around the school) were evaluated through GIS-based land-use data (parcel level land use density) and street-level topography. Street networks within the same buffers were evaluated by using angular segment analysis (Integration and Choice) implemented in Depthmap as well as two segment-based connectivity measures, namely Metric and Directional Reach implemented in GIS. Segment Angular Integration measures how accessible each space from all the others within the radius using the least angle measure of distance. Segment Angular Choice which measures how many times a space is selected on journeys between all pairs of origins and destinations. Metric Reach captures the density of streets and street connections accessible from each individual road segment. Directional Reach measures the extent to which the entire street network is accessible with few direction changes. In addition, socio-economic characteristics (annual income, car ownership, education-level) of parents, obtained from parental questionnaires, were also included in the analysis. It is shown that surrounding street network configuration is strongly associated with both walk-mode shares and average walking distances to/from schools when controlling for parental socio-demographic attributes as well as land-use compositions and topographic features in school environments. More specifically, findings suggest that the scale at which urban form has an impact on pedestrian travel is considerably larger than a few blocks around the school.

Keywords: Istanbul, street network layout, urban form, walking to/from school

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Authors: Jiechen Yin, Xiang Hong, Ran Liu

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Atrazine (ATR), a widely used triazine herbicide, is an environmental endocrine disruptor that can cause health problems. However, whether there are multi/trans-generational reproductive impacts of ATR have not been studied to our best knowledge. Therefore, in this study, Caenorhabditis elegans was used as a preferable model organism to identify the multi/trans-generational reproductive toxicity of ATR. L1 larvae were exposed to different concentrations (0.0004–40 mg/L) of ATR for 48 h. Successive generations (F1 to F5) were fed without ATR and consecutive exposure. The results showed that ATR exposure during P0 decreased fecundity, including a reduction in fertilized eggs, oocytes, and ovulation rate, delayed gonadal development, and decreased the relative area of the gonad arm and germ cell number. Furthermore, continuous ATR exposure (P0–F5) causes a significant increase in reproductive toxicity in subsequent generations, although no significant toxicity occurred in the P0 generation after exposure to environmental-related concentrations, suggesting that ATR exposure might have cumulative effects. Likewise, parental exposure to ATR caused transgenerational toxicity impairments. Interestingly, reproductive toxicity not development toxicity was transmitted to several generations (F1–F4), and the F2 generation showed the most notable changes. QRT-PCR results showed that genes related to DNA methylation 6mA (damt-1, nmad-1) and histone H3 methylation (mes-4, met-2, set-25, set-2, and utx-1) can also be passed on to offspring. The function of H3K4 and H3K9 methylation were explored by using loss-of-function mutants for set-2, set-25, and met-2. Transmissible reproductive toxicity was absent in met-2(n4256), set-2(ok952), and set-25(n5021) mutants, which suggests that the histone methyltransferases H3K4 and H3K9 activity are indispensable for the transgenerational effect of ATR. Finally, the downstream genes of DNA methylation and histone H3 methylation were determined. ATR upregulated the expression of ZC317.7, hsp-6, and hsp-60. Mitochondrial stress in parental generation dependent transcription 6mA modifiers may establish these epigenetic marks in progeny.

Keywords: ATR, Caenorhabditis elegans, multi-/trans-generation, reproductive toxicity

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Authors: Dipti Chand, Riya Saboo

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OBJECTIVES: Early and correct diagnosis may present a significant clinical challenge in diagnosis of patients presenting to Emergency Department with Acute Dyspnoea. The common cause of acute dyspnoea and respiratory distress in Emergency Department are Decompensated Heart Failure (HF), Chronic Obstructive Pulmonary Disease (COPD), Asthma, Pneumonia, Acute Respiratory Distress Syndrome (ARDS), Pulmonary Embolism (PE), and other causes like anaemia. The aim of the study was to measure NT-pro Brain Natriuretic Peptide (BNP) and exhaled End-Tidal Carbon dioxide (ETCO2) in patients presenting with dyspnoea. MATERIAL AND METHODS: This prospective, cross-sectional and observational study was performed at the Government Medical College and Hospital, Nagpur, between October 2019 and October 2021 in patients admitted to the Medicine Intensive Care Unit. Three groups of patients were compared: (1) HFrelated acute dyspnoea group (n = 52), (2) pulmonary (COPD/PE)-related acute dyspnoea group (n = 31) and (3) sepsis with ARDS-related dyspnoea group (n = 13). All patients underwent initial clinical examination with a recording of initial vital parameters along with on-admission ETCO2 measurement, NT-proBNP testing, arterial blood gas analysis, lung ultrasound examination, 2D echocardiography, chest X-rays, and other relevant diagnostic laboratory testing. RESULTS: 96 patients were included in the study. Median NT-proBNP was found to be high for the Heart Failure group (11,480 pg/ml), followed by the sepsis group (780 pg/ml), and pulmonary group had an Nt ProBNP of 231 pg/ml. The mean ETCO2 value was maximum in the pulmonary group (48.610 mmHg) followed by Heart Failure (31.51 mmHg) and the sepsis group (19.46 mmHg). The results were found to be statistically significant (P < 0.05). CONCLUSION: NT-proBNP has high diagnostic accuracy in differentiating acute HF-related dyspnoea from pulmonary (COPD and ARDS)-related acute dyspnoea. The higher levels of ETCO2 help in diagnosing patients with COPD.

Keywords: NT PRO BNP, ETCO2, dyspnoea, lung USG

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Authors: Mohammad S. Razai, Jan Williams, Rachel Nestel, Dermot Dalton

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Purpose: This descriptive qualitative study aimed to obtain parents recommendations for improving the notification process and communication of positive newborn screening result for cystic fibrosis (CF). Methods: Thematic analysis of semi-structured open-ended interviews with 11 parents of 7 children with confirmed diagnosis of CF between 2 months — 2 years of age. Results: Parents preferred face to face disclosure of positive NBS results by a pediatrician with CF professional qualification. They trusted a pediatrician more than any other professional in providing accurate, credible and comprehensive information about the diagnosis and its implications. Parents recommended that health professionals be knowledgeable and provide clear, succinct and understandable information. Providers should also explore parents concerns and acknowledge feelings and emotions. Most parents reported that they preferred to be notified immediately as soon as the results were available. Several parents preferred to be told once the diagnosis was certain. Most parents regarded open access to CF team as the most significant part of care coordination. In addition to health professionals, most parents used internet as an important source of information, interaction and exchange of experiences. Most parents also used social networking sites such as Facebook groups and smart phone apps. Conclusion: This study provides significant new evidence from parental perspective in emphasizing the pivotal role of good communication skills deployed by a knowledgeable CF specialist in person. Parents use of social media and internet has replaced some traditional methods of information exchange and may reduce the need for professional input for newly diagnosed CF patients.

Keywords: care coordination, cystic fibrosis, newborn screening, notification process, parental preferences, professional-paren communication

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Authors: Daniel Gredig, Annabelle Bartelsen-Raemy

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Social work services offered to people living with diabetes tend to be moulded by the prevailing understanding that social work is to support people living with diabetes in their adherence to medical prescription and/or life style changes. As diabetes has been conceived as a condition facing no stigma, discrimination of people living with diabetes has not been considered. However, there is growing evidence of stigma. To our knowledge, nevertheless, there have been no comprehensive, in-depth studies of stigma and its impact. Against this background and challenging the present layout of services for people living with diabetes, the present study aimed to establish whether: -people living with diabetes in Switzerland experience stigma, and if so, in what context and to what extent; -experiencing stigma impacts the quality of life of those affected. It was hypothesized that stigma would impact on their quality of life. It was further hypothesized that low self-esteem, psychological distress, depression, and a lack of social support would be mediating factors. For data collection an anonymous paper-and-pencil self-administered questionnaire was used which drew on a qualitative elicitation study. Data were analysed using descriptive statistics and structural equation modelling. To generate a large and diverse convenience sample the questionnaire was distributed to the readers of journal destined to diabetics living in Switzerland issued in German and French. The sample included 3347 people with type 1 and 2 diabetes, aged 16–96, living in diverse living conditions in the German- and French-speaking areas of Switzerland. Respondents reported experiences of discrimination in various contexts and stereotyping based on the belief that diabetics have a low work performance; are inefficient in the workplace; inferior; weak-willed in their ability to manage health-related issues; take advantage of their condition and are viewed as pitiful or sick people. Respondents who reported higher levels of perceived stigma reported higher levels of psychological distress (β = .37), more pronounced depressive symptoms (β=.33), and less social support (β = -.22). Higher psychological distress (β = -.29) and more pronounced depressive symptoms (β = -.28), in turn, predicted lower quality of life. These research findings challenge the prevailing understanding of social work services for people living with diabetes in Switzerland and beyond. They call for a less individualistic approach, the consideration of the social context service users are placed in their everyday life, and addressing stigma. So, social work could partner with people living with diabetes in order to fight against discrimination and stereotypes. This could include identifying and designing educational and public awareness strategies. In direct social work with people living with diabetes, this could include broaching experiences of stigma and modes of coping with. This study was carried out in collaboration with the Swiss Diabetes Association. The association accepted the challenging conclusions from this study. It connected to the results and is currently discussing the priorities and courses of action to be taken.

Keywords: diabetes, discrimination, quality of life, services, stigma

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Authors: Iris Sirirada Pattara-Angkoon, Rory Devine, Anja Lindberg, Wendy Browne, Sarah Foley, Gabrielle McHarg, Claire Hughes

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Introduction: The “Terrible Twos” is a phrase used to describe toddlers 18-30 months old. It characterizes a transition from high dependency to their caregivers in infancy to more autonomy and mastery of the body and environment. Toddlers at this age may also show more willfulness and stubbornness that could predict a future trajectory leading to conduct disorders. Thus, an important goal for this age group is to promote responsiveness to their caregivers (i.e., compliance). Existing literature tends to focus on praise to increase desirable child behavior. However, this relationship is not always straightforward as some studies have found no or negative association between praise and child compliance. Research suggests positive emotions and affection showed through body language (e.g., smiles) and actions (e.g., hugs, kisses) along with positive parent-child relationship can strengthen the praise and child compliance association. Nonetheless, few studies have examined the influences of positive emotionality within the speech. This is important as implementing verbal positive emotionality is easier than physical adjustments. The literature also tends not to include fathers in the study sample as mothers were traditionally the primary caregiver. However, as child-caring duties are increasing shared equally between mothers and fathers, it is important to include fathers within the study as studies have frequently found differences between female and male caregiver characteristics. Thus, the study will address the literary gap in two ways: 1. explore the influences of positive emotionality in parental speech and 2. include an equal sample of mothers and fathers. Positive emotionality is expected to positively correlate with and predict child compliance. Methodology: This study analyzed toddlers (18-24 months) in their dyadic interactions with mothers and fathers. A Duplo (block) task was used where parents had to work with their children to build the Duplo according to the given photo for four minutes. Then, they would be told to clean up the blocks. Parental positive emotionality in different speech types (e.g., bids, praises, affirmations) and child compliance were measured. Results: The study found that mothers (M = 28.92, SD = 12.01) were significantly more likely than fathers (M = 23.01, SD = 12.28) to use positive verbal emotionality in their speech, t(105) = 4.35, p< .001. High positive emotionality in bids during Duplo task and Clean Up was positively correlated with more child compliance in each task, r(273) = .35, p< .001 and r(264) = .58, p< .001, respectively. Overall, parental positive emotionality in speech significantly predicted child compliance, F(6, 218) = 13.33, p< .001, R² = .27) with emotionality in verbal bids (t = 6.20, p< .001) and affirmations (t = 3.12, p = .002) being significant predictors. Conclusion: Positive verbal emotions may be useful for increasing compliance in toddlers. This can be beneficial for compliance interventions as well as to the parent-child relationship quality through reduction of conflict and child defiance. As this study is correlational in nature, it will be important for future research to test the directional influence of positive emotionality within speech.

Keywords: child temperament, compliance, positive emotion, toddler, verbal bids

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Authors: Olga Giovani

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In this research, Bronfenbrenner's theory will be used to investigate the individual, microsystemic, and exosystemic factors that may affect adolescents' academic achievement as well as their expectations in Greece. First, the topic of academic achievement in an adolescent developmental context will be set as the target of the proposed study while focusing on the aspects of community influences on adolescents. More specifically, the effect of available resources and the perceived sense of safety and support will be further investigated. Then the issue of family factors will be analyzed, as they are subjectively perceived by the adolescents, focusing on the perceived parental style, parental monitor, and involvement as a mesosystemic factor. In turn, the school will also be discussed with emphasis on the perceived school climate and support as well as the academic aspects of student achievement. Finally, the adolescent's individual perspective will be taken into consideration in developmental terms, examining their perceptions regarding their community/neighborhood, their family, their school, as well as their sense of self-concept and self-esteem as these are expressed through their academic performance and prosocial behavior. The aim of the proposed research is to study these associations through the prism of the systemic perspective, the relationship between aspects of educational achievement and socioeconomic background, with an emphasis on the role of the community, which has not been adequately researched in the Greek context. Community will be defined by the available community resources (recreational activities, public library, local orchestras, free entrance museums, etc.), adolescents' own perception of social support, safety, and support inside that community. These perceptions need to be investigated since they may serve as possible predictors of a child's current cognitive, developmental, and psycho-social outcomes, such as their perceived self-concept and self-esteem, as well as on their future expectations related to the entrance to university and job expectations.

Keywords: bioecological model, developmental psychology, ecosystemic approach, student achievement, microsystemic factors, mesosystemic factors, individual perceptions

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Authors: Brian Tung, Yam Wing Siu, Tsun Se Cheong

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Purpose: This research aims to explore how personal and environmental factors, especially the socio-economic changes and behavioral changes fostered by the COVID-19 outbreak pandemic, affect the financial vulnerability of a specific segment of people in financial distress. Innovative research methodology of machine learning will be applied to data collected from over 300 local individuals in Hong Kong seeking counseling or similar services in recent years. Results: First, machine learning has found that too much exposure to digital services and information on digitized services may lead to adverse effects on respondents’ financial vulnerability. Second, the improvement in financial literacy level provides benefits to the financially vulnerable group, especially those respondents who have started with a lower level. Third, serious addiction to digital technology can lead to worsened debt servicing ability. Machine learning also has found a strong correlation between debt servicing situations and income-seeking behavior as well as spending behavior. In addition, if the vulnerable groups are able to make appropriate investments, they can reduce the probability of incurring financial distress. Finally, being too active in borrowing and repayment can result in a higher likelihood of over-indebtedness. Conclusion: Findings can be employed in formulating a better counseling strategy for professionals. Debt counseling services can be more preventive in nature. For example, according to the findings, with a low level of financial literacy, the respondents are prone to overspending and unable to react properly to the e-marketing promotion messages pop-up from digital services or even falling into financial/investment scams. In addition, people with low levels of financial knowledge will benefit from financial education. Therefore, financial education programs could include tech-savvy matters as special features.

Keywords: personal finance, digitization of the economy, COVID-19 pandemic, addiction to digital technology, financial vulnerability

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Authors: H. B. Grobler, K. Du Plooy, P. Kruger, S. Ellis

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Objectives: The primary objective of the study was to determine the common mental disorders (CMD) identified by professional South African rugby players and its correlation with their mental toughness, as a first step towards developing such a programme within a larger research project. Design: Survey research, within the theoretical perspective of field theory, was conducted, utilising an adaptation of an already existing mental health questionnaire. The aim was to obtain feedback from as many possible professional South African rugby players in order to make certain generalizations and come to conclusions with regard to the current mental health experiences of these rugby players. Methods: Non-randomized sampling was done, linking it with internet research in the form of the online completion of a questionnaire. A sample of 215 rugby players participated and completed the online questionnaire. Permission was obtained to make use of an existing questionnaire, previously used by the specific authors with retired professional rugby players. A section on mental toughness was added. Data were descriptively analysed by means of the SPSS software platform. Results: Results indicated that the most significant problem that the players are experiencing, is a problem with alcohol (47.9%). Other problems that featured are distress (16.3%), sleep disturbances (7%), as well as anxiety and depression (4.2%). 4.7% of the players indicated that they smoke. 3.3% of the players experience themselves as not being mentally tough. A positive correlation between mental toughness and sound sleep (0.262) was found while a negative correlation was found between mental toughness and the following: anxiety/depression (-0.401), anxiety/depression positive (-0.423), distress (-0.259) and common mental disorder problems in general (-0.220). Conclusions: Although the presence of CMD at first glance do not seem significantly high amongst all the players, it must be considered that if one player in a team experiences the presence of CMD, it will have an impact on his mental toughness and most likely on his performance, as well as on the performance of the whole team. It is therefore important to ensure mental health in the whole team, by addressing individual CMD problems. A mental health support programme is therefore needed to be implemented to the benefit of these players within the South African context.

Keywords: common mental disorders, mental toughness, professional athletes, rugby players

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Authors: Anshu Gupta, Charu Gupta

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Background: Punjab, a border state in India has achieved notoriety world over for its drug abuse problem. People right from school kids to elderly are hooked to drugs. This pattern of substance abuse is prevalent in both cities and villages alike. Excess of younger population in India has further aggravated the situation. It is feared that the benefits of India’s economic growth may well be negated by the rising substance abuse especially in this part of the country. It is quite evident that the pattern of substance abuse tends to change over time which is an impediment in the formulation of effective strategies to tackle this issue. Aim: Purpose of the study was to ascertain the change in the pattern of drug abuse for two consecutive years in the out patient department (OPD) population. Method: The study population comprised of all the patients reporting for deaddiction to the psychiatry outpatient department over a period of twelve months for two consecutive years. All the patients were evaluated by the International Classification of Diseases; 10 criteria for substance abuse/dependence. Results: A considerably high prevalence of substance abuse was present in the Indian population. In general, there was an increase in prevalence from first to the second year, especially among the female population. Increase in prevalence of substance abuse appeared to be more prominent among the younger age group of both the sexes. A significant increase in intravenous drug abuse was observed. Peer pressure and parental imitation were the major factors fueling substance abuse. Precipitation or fear of withdrawal symptoms was the major factor preventing abstinence. Substance abuse had a significant effect on the health and interpersonal relations of these patients. Summary/Conclusion: Drug abuse and addiction are on the rise throughout India. Changing cultural values, increasing economic stress and dwindling supportive bonds appear to be leading to initiation of substance abuse. Need of the hour is to formulate a comprehensive strategy to bring about an overall reduction in the use of drugs.

Keywords: deaddiction, peer pressure, parental imitation, substance abuse/dependance

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Authors: Charles Masulani Mwale

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Background: It is argued that 85% of children with the disability live in resource-poor countries where there are few available disability services. A majority of these children, including their parents, suffer a lot as a result of the disability and its associated stigmatization, leading to a marginalized life. These parents also experience more stress and mental health problems such as depression, compared with families of normal developing children. There is little research from Africa addressing these issues especially among parents of intellectually disabled children. WHO encourages research on the impact that child with a disability have on their family and appropriate training and support to the families so that they can promote the child’s development and well-being. This study investigated the parenting experiences, mechanisms of coping with these challenges and psychosocial needs while caring for children with intellectual disabilities in both rural and urban settings of Lilongwe and Mzuzu. Methods: This is part of a larger Mixed-methods study aimed at developing a contextualized psychosocial intervention for parents of intellectually disabled children. 16 focus group discussions and four in-depth interviews were conducted with parents in catchments areas for St John of God and Children of Blessings in Mzuzu and Lilongwe cities respectively. Ethical clearance was obtained from COMREC. Data were stored in NVivo software for easy retrieval and management. All interviews were tape-recorded, transcribed and translated into English. Note-taking was performed during all the observations. Data triangulation from the interviews, note taking and the observations were done for validation and reliability. Results: Caring for intellectually disabled children comes with a number of challenges. Parents experience stigma and discrimination; fear for the child’s future; have self-blame and guilt; get coerced by neighbors to kill the disabled child; and fear violence by and to the child. Their needs include respite relief, improved access to disability services, education on disability management and financial support. For their emotional stability, parents cope by sharing with others and turning to God while other use poor coping mechanisms like alcohol use. Discussion and Recommendation: Apart from neighbors’ coercion to eliminate the child life, the findings of this study are similar to those done in other countries like Kenya and Pakistan. It is recommended that parents get educated on disability, its causes, and management to array fears of unknown. Community education is also crucial to promote community inclusiveness and correct prevailing myths associated with disability. Disability institutions ought to intensify individual as well as group counseling services to these parents. Further studies need to be done to design culturally appropriate and specific psychosocial interventions for the parents to promote their psychological resilience.

Keywords: psychological distress, intellectual disability, psychosocial interventions, mental health, psychological resilience, children

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Authors: Ibragim Issabekov, Byron Crape, Lyazzat Toleubekova

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Background: Palliative care substantially improves the quality of life of terminally-ill patients. Symptom control is one of the keystones in the management of patients in palliative care settings, lowering distress as well as improving the quality of life of patients with end-stage diseases. The most common symptoms causing significant distress for patients are pain, nausea and vomiting, increased respiratory secretions and mental health issues like depression. Aims are: 1. to identify best practices in symptom management in palliative patients in accordance with internationally approved guidelines and compare aforementioned with actual practices in Kazakhstan; to evaluate the criteria for assessing symptoms in terminally-ill patients, 2. to review the availability and utilization of pharmaceutical agents for pain control, management of excessive respiratory secretions, nausea, and vomiting, and delirium and 3. to develop recommendations for the systematic approach to end-of-life symptom management in Kazakhstan. Methods: The use of qualitative research methods together with systematic literature review have been employed to provide a rigorous research process to evaluate current approaches for symptom management of palliative patients in Kazakhstan. Qualitative methods include in-depth semi-structured interviews of the healthcare professionals involved in palliative care provision. Results: Obstacles were found in appropriate provision of palliative care. Inadequate education and training to manage severe symptoms, poorly defined laws and regulations for palliative care provision, and a lack of algorithms and guidelines for care were major barriers in the effective provision of palliative care. Conclusion: Assessment of palliative care in this medium-income transitional-economy country is one of the first steps in the initiation of integration of palliative care into the existing health system. Achieving this requires identifying obstacles and resolving these issues.

Keywords: end-of-life care, middle income country, palliative care, symptom control

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