Living with Hereditary Haemorrhagic Telangiectasia: stigma,coping with unpredictable symptoms,and self-advocacy

Abstract

Objective: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. Design: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s–60s. Main outcome measures: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. Results: Narratives highlighted four psychosocial themes: (i) the psychological impact of visible symptoms was significant and related to experiences of social stigma, (ii) individuals struggled to identify triggers of symptoms in order to reduce unpredictability, (iii) an illness identity was rejected by minimising HHT when talking about the present self, and by positive reframing as ‘lucky’ and (iv) self-advocacy was necessitated due to lack of expert coordinated care. Conclusion: HHT has a demanding impact on social, physical and psychological well-being. These findings have significant implications for health care, as narratives about interactions with health professionals often used the terms ‘frustrating’ and ‘not being heard’.     

Identity,coping style,and health behaviour among first generation Irish immigrants in England

Abstract

Berry's (1997) framework for acculturation research was used to explore the relationship between identity and health among Irish immigrants in England. One hundred and twelve first generation Irish immigrants completed questionnaire measures of ethnic identity, opportunities for identity expression, generalised coping style, and health behaviour. Significant, though small, positive correlations were observed between identity and health behaviour as predicted. Regression analyses and path analysis were used to present a model of the link between variables. Of particular note were the contrasting ways in which the two dimensions of identity were associated with health behaviour. Participants who positively evaluated their ethnic origins reported engaging in healthier behaviour and adopting more beneficial coping strategies when faced with day-to-day stresses and problems. Participants who reported their ethnic origin as more central to their overall identity were also more likely to adopt beneficial coping strategies. Concomitantly, however, they had fewer than desired opportunities for expressing their ethnic identity which was, in turn, associated with less beneficial coping and health behaviour. In looking for ways to tackle the well-documented health problems of both first and second generation Irish in England, the results suggest that encouragement to feel more positive about their ethnic identity might result in greater usage of behavioural approach coping and, relatedly, to improved health behaviour.     

the relationship between pain and coping styles among hiv-positive men and women

Abstract

Pain in HIV/AIDS patients is associated with compromised quality of life and emotional adjustment. Although previous findings support a relationship between coping styles and subjective pain for various groups of chronically-ill persons, little research has examined the associations between coping and pain in HIV-positive or AIDS patients. The purpose of this study was to explore the relationship between pain and coping styles among 105 HIV-positive participants (32 women and 73 men) in a randomized clinical trial designed to examine the effect of group psychotherapy on quality of life and health behavior. Participants completed the Brief COPE, the pain scale from the Medical Outcomes Study-HIV, and a demographic and medical questionnaire. Multiple regression analysis, with pain as the dependent variable, showed that participants who reported coping through denial reported greater pain severity (p < 0.0001). These results suggest that denial as a coping strategy appears to be signficantly associated with pain for persons with HIV/AIDS. However, further research is necessary to determine the causal relationship between pain and coping through denial. These findings also point to the possibility of psychological intervention in order to modify maladaptive coping styles and to ameliorate pain in this population.     

Risk factors for psychological morbidity in women attending a one-stop diagnostic clinic with suspected breast disease

Abstract

The present study was designed to identify risk factors for psychological morbidity in women attending a one-stop diagnostic clinic with suspected breast disease. A cohort of 158 women were recruited and were asked to complete scales measuring psychological morbidity and psychosocial factors in the period immediately before their appointment and to repeat the assessments of psychological morbidity on the day of the appointment. Relevant clinical and demographic data were also collated. Within the cohort 1.4% of respondents received a diagnosis of malignant disease. Psychological morbidity, both prior to and during the diagnostic appointment was strongly predicted by psychosocial factors (i.e., acceptance-resignation coping, personal self esteem and discrepancies in social support), accounting for 54% and 63% of the variance at pre-appointment and appointment day phases respectively. Other measured variables were found not to be correlated with and/or to account for a significant proportion of the variance in the measures of morbidity. These results suggest that these psychosocial variables should be targeted in interventions designed to reduce psychological morbidity in this patient group.     

Exploring the Factor Structure of the Proactive Coping Inventory: A Southern African Study

This study explored the factor structure of the Proactive Coping Inventory (PCI) to determine whether its six-factor structure holds within the Southern African context. Data on proactive coping were collected from students attending three universities, one each in Botswana (n=88, females=45.5%, mean age=21.31 years, SD=2.04), Namibia (n=38, females=47.4%, mean age=24.21 years, SD=3.47) and South Africa (n=496, females=56.9%; mean age=22.27 years, SD=2.60). Exploratory factor analysis was used to determine the factor structure of the PCI. Findings suggest that the PCI is comprised of two factors: Future-Oriented Coping (comprised of Proactive Coping, Reflective Coping, Strategic Planning and Preventive Coping) and Support Seeking (comprised of Instrumental Support Seeking and Emotional Support Seeking). This is in line with theory that suggests that individuals cope by means of persisting towards goal attainment.     

Engagement organisationnel,coping, et affects en contexte organisationnel : test d’un modèle intégrateur

This study examines a model relating components of organizational commitment to positive and negative affect through the partial mediation of problem solving coping. The results of a study conducted among a sample of 647 employees from various organizations show that affective commitment relates positively to positive affect and negatively to negative affect, with the relation to positive affect being partially mediated by problem solving coping. Normative commitment was positively related to negative affect. Finally, continuance commitment based on few alternatives was negatively related to positive affect and positively related to negative affect, with the relation to positive affect being partially mediated by a weaker problem solving coping. Continuance commitment based on perceived sacrifice had no effects.     

Associations of Mother–Child Reminiscing about Negative Past Events,Coping, and Self‐Concept in Early Childhood

Parent–child reminiscing conversations in early childhood have received theoretical attention as a forum for children's self‐concept development, but this has been little addressed in empirical work. This study examines associations between emotion reminiscing and children's self‐concepts and, building from the reminiscing and personality development literatures, also explores the role of children's coping. Sixty 4‐ and 5‐year‐old children and their mothers completed reminiscing conversations about events in which the child had experienced negative emotion, children completed an age‐appropriate assessment of their self‐concept, and mothers and teachers reported on children's coping strategies. Children's self‐perceived timidity was associated with their explanations for negative emotions during reminiscing. Children's self‐perceived negative affect was associated with fewer emotion resolutions during reminiscing, and with distinctive patterns of coping. Both reminiscing and coping made unique contributions to children's self‐concepts, and findings also suggest that coping may in some contexts indirectly connect reminiscing with self‐concept. These findings suggest that reminiscing conversations both reflect children's characteristics and provide a context for learning about their characteristics, along with strategies for emotion management. Copyright © 2013 John Wiley & Sons, Ltd.     

A Typology of Anger Profiles in Couples

ABSTRACT

Few researchers have attempted to identify couples' anger management profiles. Cluster analysis was conducted using five indices of anger derived from Inventory of Anger Experience in Couples (Laughrea, Belanger, & Wright, 1996). Sample consisted of 220 couples from normal and clinical populations. Four types were identified: (a) Relaxed Couples, (b) Slightly Angry Couples, (c) Explosive Angry Couples, and (d) Dangerously Enraged Couples. Results also indicated that the higher the disturbance of anger dynamics between partners, the more psychologically and maritally distressed they were, and the lower the quality of their coping strategies. Understanding anger and its clinical implication are discussed.     

Spiritual,Religious, Nonspiritual,and Nonreligious Narratives in Marginalized Older Adults: A Typology of Coping Styles

SUMMARY

Narrative therapy is an important tool in the phenomenological framing of life events with older clients. Seventy-nine older adults who lived independently in four subsidized high-rise housing facilities in Chicago were interviewed in a research project about managing life challenges. Cases represent four types in a spiritual-religious typology: religious and spiritual, religious only, spiritual only, and neither religious nor spiritual (Zinnbauer, 1997). This article explores how older adults managed adversity and maintained a sense of self-efficacy. Findings indicate that older adults use many references to religion and spirituality in their narratives, either embracing these domains or defining themselves in contrast to them. Narrative therapy suggests that the implications of religious and spiritual resources addressed in client stories may reinforce coping capacity and promote aging well.     

Duke University's Program on Religion,Aging, and Health

ABSTRACT

Assisted living facilities (ALFs) offer a level of care between independent living and nursing homes. Recently researchers have begun to explore quality-of-life issues concerning residents of ALFs. Considerable research suggests that religion is positively associated with both emotional and physical health. This study examines how residents use religious practices to cope with the challenges of life in ALFs. Qualitative analysis of in-person interview data from 55 residents of ALFs revealed a variety of religious practices, such as prayer, church attendance, and Bible reading. Most residents deemed religion important and reported that religious practices provided a framework for coping with problems. Coping ranged from the mundane (e.g., attending a gospel concert to offset the otherwise dull routine of the home) to the transcendent (e.g., enlisting the support of an omnipotent ally in the face of adversity). Six ways residents utilized religion as a coping mechanism emerged. Residents used religion to maintain continuity with their previous lives; to obtain relief from physical or emotional pain; to provide a framework for socialization; to develop courage; to maintain a purpose for their lives; and to prepare for death. Suggestions for enhancing the quality and variety of religious activities within ALFs are offered.