Giving Up and Giving In: Young Adolescents\u27 Dilemmas when Caring for a Grandparent with Alzheimer\u27s Disease

Caregivers of persons with Alzheimer\u27s disease have been studied extensively; the vast majority of caregiver research has focused on spouses and adult children, negating the impact caregiving has on younger family members. Importantly, 75% of caregivers are female; 31% of these women have children at home under the age of 12 and 23% live with a child aged 12–17. As such, adolescents will be increasingly involved in the care of Alzheimer\u27s victims. This study sought to examine the experiences of these individuals. Specifically, what is it like for an adolescent to provide care for a grandparent afflicted with Alzheimer\u27s disease? A qualitative, grounded theory study design was utilized. Ten adolescents aged 11–18 were interviewed and asked a series of semi-structured questions regarding caregiving. To be included, respondents must have been the grandchild of an Alzheimer\u27s victim cared for by the adolescent\u27s immediate family. Taking into consideration key elements of the ethnographic interview, grand tour, descriptive, structural, and contrast questions were integrated throughout the interview guide. More specific questioning and probing strategies were also designed which explored the perceptions of these adolescents with regard to their rewarding and nonrewarding caregiving experiences. Employing features of content analysis methodology, all interviews were audio-recorded and transcribed verbatim. First, open coding of the data was conducted. Second, selective coding of the data was generated. Using the core variable as a guide, examination of the data for conditions and consequences directly related to the primary category, “Challenging the Continuum of Change,” was further evaluated for similarities and differences across interviews. The subcategories identified via this content analysis process included (a) A Missing Voice, (b) The Changing Family, (c) Coping, and (d) Reaching Out. Conditions falling under these subcategories included: Recognizing the Difference; She\u27s There, She\u27s Not There, Reversal of Blame, Increased Family Intimacy, Loss of Sibling Trust/Sibling Inequality, Parental Conflict, Accepting the Changes, Holding Back Frustrations, Self-Induced Isolation, Confiding in Friends, Altered Leisure Activity, and On Your Best Behavior. Discussion points focus on future research and practice with regard to caregiving adolescents. In short, how can we help these young adults as they challenge the continuum of change and progress through this tenuous phase of their lives

Attentional bias to respiratory and anxiety related threat in children with asthma

Background: Attention and vigilance is highlighted as an adaptive function which facilitates a faster response to threat. It is also proposed as a maintenance factor in problems with anxiety, and more recently within physical health conditions. Researchers have hypothesised that due to the role of attention in anxiety, modifying this attention will result in a reduction of anxiety levels. In addition, research is now emerging in relation to the role of attention in paediatric health conditions. Due to the importance of early targeting in interventions for both anxiety and physical health conditions, further research is needed in this area. Aims: The research aims were twofold. The first aim was to review the literature and evidence related to the anxiolytic effect of Attention Bias Modification (ABM) in child and adolescent populations. The second aim was to investigate if children with asthma show an attentional bias to different threat related stimuli (asthma, anxiety or general negative emotion) and the relationship between this and other health related factors. Method: A systematic review of the current literature was carried out to address the first aim. This included 10 quantitative studies which all examined the effect of ABM on either child or adolescent anxiety levels. To address the second aim, 36 children aged nine to twelve participated in an empirical study. 18 of the participants had asthma, and 18 were asthma free and both groups were asked to complete a computer task designed to measure attentional bias to the different threat related stimuli. In addition, caregivers completed a questionnaire to measure their own anxiety levels, and the children with asthma completed measures focused on quality of life, coping strategies and inhaler use. Results: Research regarding the effectiveness of ABM for youth anxiety is in its early stages. However, preliminary conclusions can be drawn suggesting that it may be an effective intervention to reduce anxiety levels. Additional, rigorous research is required to standardise treatment protocols and answer further questions. Within the empirical study, repeated measures ANOVA revealed that children with asthma show an attentional bias to asthma cues whereas children without asthma do not. Furthermore, there was no selective attention to general negative words, suggesting that attentional bias was not due to general sensitivity to emotional stimuli. A Pearson’s correlation showed that vigilance to asthma cues was associated with parental anxiety. There was no attentional bias to anxiety symptom words and no significant correlations between bias scores and the measured health related factors. Conclusion: The results from the systematic review provide further evidence for the role of attention in paediatric anxiety problems. In addition, the outcome of the empirical study suggests an unconscious threat association in childhood asthma. Further research may yield a viable computerised treatment for paediatric anxiety. Regardless of this, it will be important to consider the role of attention in clinical practice, both in the treatment of anxiety and complex chronic health problems such as asthma

Dissociation and interpersonal autonomic physiology in psychotherapy research: an integrative view encompassing psychodynamic and neuroscience theoretical frameworks

Interpersonal autonomic physiology is an interdisciplinary research field, assessing the relational interdependence of two (or more) interacting individual both at the behavioral and psychophysiological levels. Despite its quite long tradition, only eight studies since 1955 have focused on the interaction of psychotherapy dyads, and none of them have focused on the shared processual level, assessing dynamic phenomena such as dissociation. We longitudinally observed two brief psychodynamic psychotherapies, entirely audio and video-recorded (16 sessions, weekly frequency, 45 min.). Autonomic nervous system measures were continuously collected during each session. Personality, empathy, dissociative features and clinical progress measures were collected prior and post therapy, and after each clinical session. Two-independent judges, trained psychotherapist, codified the interactions\u2019 micro-processes. Time-series based analyses were performed to assess interpersonal synchronization and de-synchronization in patient\u2019s and therapist\u2019s physiological activity. Psychophysiological synchrony revealed a clear association with empathic attunement, while desynchronization phases (range of length 30-150 sec.) showed a linkage with dissociative processes, usually associated to the patient\u2019s narrative core relational trauma. Our findings are discussed under the perspective of psychodynamic models of Stern (\u201cpresent moment\u201d), Sander, Beebe and Lachmann (dyad system model of interaction), Lanius (Trauma model), and the neuroscientific frameworks proposed by Thayer (neurovisceral integration model), and Porges (polyvagal theory). The collected data allows to attempt an integration of these theoretical approaches under the light of Complex Dynamic Systems. The rich theoretical work and the encouraging clinical results might represents a new fascinating frontier of research in psychotherapy

Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs

Background: Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children’s experiences, struggles and support needs in families living with ALS. Methods: Semi-structured interviews were conducted with 8 parents with ALS, 13 well parents and 15 children, together representing 17 families. Interview data were analyzed using qualitative content analysis. Results: Three major themes were identified relating to (1) ALS-related transformations in families’ homes, activities, roles and relationships, that trigger (2) distress among families, which, in turn, evokes (3) emotional, psychological, educational and practical support needs. For emotional and practical support, parents and children mainly rely on their own family and social network, whereas they seek educational and psychological support from healthcare professionals. Conclusions: Our findings imply that ALS care professionals may foster family adjustment to living with ALS, most notably through encouraging parents to engage in a dialogue with their children about the many transformations, struggles and needs imposed by ALS and teaching them how to start the dialogue

Experiences and coping strategies of Jordanian parents of children with Beta Thalassaemia Major

Globally, thalassaemia is considered the most common inherited single-gene disorder. It is more prevalent in the Mediterranean Region (Tadmouri, et al., 2003). For instance, in Jordan there were about 1500 thalassaemia patients with a prevalence rate of about 4 to 6% of Beta Thalassemia Major (BTM) (Hamamy, et al., 2007). Jordan was chosen as the geographical location for this research because of a lack of studies of genetic haematological disorders in the country (Hamamy, et al., 2007). The study aimed to explore and understand parents’ experiences of caring for their children diagnosed with BTM, as well as to identify their coping strategies.In order to achieve this aim, grounded theory was adopted in this study. Data were collected through ‘face-to-face’ semi-structured interviews with forty Jordanian participants: 20 fathers and 20 mothers of children with BTM diagnosed for more than one year at three hospitals in Amman, Irbid and Al-Zarqa. Field notes and memos were also used in data collection.Given the lack of qualitative research in this area the findings of this study provide new, profound insights and better understanding of parents’ experiences and coping strategies caring for their child with BTM. The findings explored the positive and negative sides of parents’ experiences, and how they coped in terms of their knowledge and feelings. They also showed that parents’ experiences were negatively impacted by their lack of knowledge about BTM, and by restrictions from their social and cultural norms. Jordanian parents caring for children with BTM experienced an emotional burden and grief. However, parents were satisfied with the health care services that their children received, and with their role as carers. In addition, strategies such as faith and social support were also found to help parents to cope.Exploring parents’ experiences and coping strategies can assist nurses, health care professionals and stakeholders in recognising and identifying the gaps in parents’ knowledge and needs. Furthermore, this study could assist health care professionals to have better understanding of parents’ emotional and psychological status, to develop new perspectives towards parents of children with BTM and could therefore assist them to deliver quality care to the patients with BTM and their families. This study may also help to raise community awareness of BTM and other haematological genetic disorders by addressing the important role of socio-cultural norms and religion in identifying how parents experience and cope with their situation caring for children with BTM.This thesis recommends that health care professionals need to support and empower parents and provide them with the appropriate and effective options to make their own decisions and adapt to their children with BTM condition

The development and evaluation of a web-based diet and diabetes education programme for children with type 1 diabetes

PhD ThesisDiabetes education is one of the essential components of standard diabetes care. Rapid advances in technology have made the internet a viable mode for the delivery of educational interventions to young people with type 1 diabetes (T1D). The main purpose of this study was to develop a web-based education programme to assist in diabetes management and to provide support for children with T1D in Malaysia. The data were collected in three phases using a mix method approach. Participants were children with T1D living in Malaysia (n=64), their parents (n=12), the clinicians (n=3) and Malaysian‟ children living in Newcastle (n=12). In Phase one, the data were collected using both qualitative and quantitative methods to understand the experiences and challenges which children face living with diabetes and to identify regularly consumed carbohydrate-rich foods. In Phase two, data were gathered by a semi-structured interview and an open-ended questionnaire with healthy children in Newcastle to elicit views and general usability of the programme. In the final Phase, Phase three, children with T1D and their families were recruited and introduced to the programme and guided in its use at home. Semi-structured interviews were conducted with children, parents and clinicians, and the questionnaires were used with children in order to gain participants‟ views, experiences and acceptance of the system. Children used the programme for a period of six months. Most children reported using the programme to obtain information about carbohydrate content of the food and drink they consumed and adjusting their insulin accordingly. They also reported they had made changes in their food choices based on the information and knowledge they obtained from the programme. Most of them did not record their blood glucose regularly in the programme. The majority felt confident in managing their diet, insulin, and monitoring their blood glucose, however, a few reported lack of confidence and difficulty managing their diabetes. Clinicians indicated that the programme was feasible to use in the clinic setting to teach and review children‟ blood glucose and dietary intake, and to support children when they faced any problems related to their diabetes. The clinicians believed that the programme had the most application for children as a self-education and self-management system. Overall, participants described the programme as useful, accessible and beneficial for managing diet and diabetes. This study demonstrated feasibility of using the web-based education programme. Further research is required to determine the effectiveness of the programme in improving diabetes management of T1D by young people.Malaysian governmen

Healthy snacks consumption and the Theory of Planned Behaviour. The role of anticipated regret

Two empirical studies explored the role of anticipated regret (AR) within the Theory of Planned Behavior (TPB) framework (Ajzen, 1991), applied to the case of healthy snacks consumption. AR captures affective reactions and it can be defined as an unpleasant emotion experienced when people realize or imagine that the present situation would be better if they had made a different decision. In this research AR refers to the expected negative feelings for not having consumed healthy snacks (i.e., inaction regret). The aims were: a) to test whether AR improves the TPB predictive power; b) to analyze whether it acts as moderator within the TPB model relationships. Two longitudinal studies were conducted. Target behaviors were: consumption of fruit and vegetables as snacks (Study 1); consumption of fruit as snacks (Study 2). At time 1, the questionnaire included measures of intention and its antecedents, according to the TPB. Both the affective and evaluative components of attitude were assessed. At time 2, self-reported consumption behaviors were surveyed. Two convenience samples of Italian adults were recruited. In hierarchical regressions, the TPB variables were added at the first step; AR was added at the second step, and the interactions at the last step. Results showed that AR significantly improved the TPB ability to predict both intentions and behaviours, also after controlling for intention. In both studies AR moderated the effect of affective attitude on intention: affective attitude was significant only for people low in AR

Primary caregivers' experiences of caring for HIV infected adolescents

HIV/AIDS has affected families in a profound and tragic way. Children whose parents have succumbed due to HIV/AIDS related infections have to be cared for by their relatives. This study focused on the experiences of primary caregivers of adolescents who are living with HIV in a semi-rural area of Eastern Cape Province, Grahamstown. There is a dearth of literature that is addressing the well-being, experiences and challenges of primary caregivers of adolescents living with HIV. Adolescence is a complex life stage during which adolescents usually present challenging behaviours and are grappling with moral issues. Caregiving to these youngsters who are burdened with HIV infection places additional demands on caregivers, especially so when they are experiencing poverty and poor social and welfare support. A qualitative study was most appropriate to explore and describe the experiences of adolescents infected with HIV. The population of this study was the primary caregivers of adolescents caring for adolescents with HIV in the area of Grahamstown, who are between 11 to 19 years old. A purposive sample of nine primary caregivers of adolescents living with HIV was selected. Data was collected by conducting individual interviews, using a semi-structured interview schedule. Data was analysed thematically according to prescribed theoretical guidelines. Data was verified by means of guidelines for the truth value, applicability, consistency, and neutrality of the study. The findings of the study indicated that primary caregivers experience that caring for adolescents who are living with HIV places a huge burden due to adolescents' negative behaviour, HIV stigma and discrimination, poor support from their families, being confronted with adolescents' emotional issues that they are not capacitated to deal with, and no adequate community resources to assist them. The challenges primary caregivers experience lead to negative effects on their health status. The findings of the study could be useful for informing intervention programmes that are targeting this group and policy development, and implementation of programmes benefiting both infected adolescents and their primary caregivers

Hispanic Mothers’ Narratives: Experiences of Parenting a Child with Cystic Fibrosis, Health Beliefs, and Health Care Experiences Related to Cystic Fibrosis

The Hispanic population is the fastest growing minority in the United States and is also a minority in the cystic fibrosis (CF) community. Therefore, an increase in CF in the U.S. might be anticipated. This study explored stories of Hispanic mothers’ perspectives of parenting their child with CF, health beliefs, and health care experiences. The study interviewed 10 mothers of which half were English speaking. Narrative structural and thematic analyses were applied through a critical feminist lens. The major themes that emerged were mothering, growing and growth, mother talk, and connected; all informed by Ruddick’s (1995) framework on maternal thinking. Additional major themes were life disrupted and being here. Findings were consistent with existing literature of the dominant Euro-American culture of being a mother of a child with CF. Health beliefs specific to CF care were aligned with prescribed medical treatments. Language emerged as a primary barrier for Spanish-speaking mothers. Mothers acknowledged an existing lack of awareness of CF in the Hispanic community and as underrepresented within the larger CF community. They expressed a desire to see a shift of stereotyped Caucasian images of CF to represent Hispanic people to promote greater awareness in the Hispanic communities and with health care providers