Sickle cell disease (SCD) and depression are each major public health issues globally. Nigeria currently has the largest proportion of people with SCD worldwide, with up to 150,000 annual births. This study highlights the limitations of previous studies, which only utilize the biomedical model in explaining SCD, and which pay insufficient attention to the lived experiences of people with SCD. Extant literature reports strong associations between SCD and depression, and locates the problem ‘only’ in terms of disease severity, levels of service utilization or alleged psychological maladjustment to SCD condition. Biomedical research tends to treat stigma as a predicament that automatically correlates with SCD. Data collected was guided by a modified three-staged theoretical framework derived from Arthur Kleinman, with the use of questionnaires (incorporating Patient Health Questionnaire) to describe depression in persons with SCD; 15 in-depth interviews to explore the illness experience of SCD, and a series of six focus groups to examine depression and stigma in SCD as a form of ‘societal sickness’. In the first stage, questionnaires were administered to 103 outpatients at an SCD clinic in Lagos, Nigeria, and findings revealed an association of depression with age, and severity of SCD as indicated by symptoms such as leg ulcers. The first stage enabled those with moderate depression to be identified and invited into the subsequent stages (two and three) of the research. In the second stage, fifteen in-depth interviews with adults living with SCD were conducted and analysed using interpretive phenomenological analysis (IPA), also drawing on the influences of Herbert Blumer and Erving Goffman. Testimonies suggested that people with SCD face overwhelmingly negative criticisms from a wide range of significant others, including close family members; that the discrimination they face arises not from their condition per se but from the societal norms and expectation that they are assumed to break; and that they themselves identify pathways from the negative experience they endure to their own depression and mental distress. In the third stage, a series of three focus groups, each with five participants, found that people with SCD began to reject negative labels, identify challenges in their own terms, gain a sense of confidence and identity from their participation in groups, and began to identify social barriers to their full participation in society that they wished to challenge. The overall findings of the research suggest that by coming together in groups, people with SCD themselves suggest that rigorously researched social interventions may be considered an important adjunct to medical interventions in improving the lives of those living with SCD in Nigeria and throughout sub-Saharan Africa.

Magister Psychologiae - MPsych

Background: Much social network analysis in health related research has focused on the impact of social networks in the genesis of long term conditions and associated inequalities. However, there has been little research on the role of social networks in the management of such conditions. This is significant at a time when increasing policy emphasis is placed on individual self-care and assumptions are often made about social support, and familial support in particular. The management of chronic illness is complex involving the interplay of personal and contextual factors and comprised of a number of daily activities which include the ongoing negotiation of management into existing roles and the degree of individual engagement with self-management. Little is known about how these aspects interact to shape and influence management, what constitutes a social network for individuals with long term conditions and whether this changes over time.Methods: This study was embedded within the Whole Systems Informing Self-management Engagement (WISE) randomised control trial. It used a longitudinal qualitative design with initial face to face in-depth interviews, telephone follow-ups over a year and final face-to-face interviews where sociograms were also used to elicit network structure.Results: The findings suggest that who is in the social network, and the types of relationships which are present, influence how management practices are framed and the extent to which they are engaged with. Resources available to an individual through the network support, or undermine, engagement and changed over time. Networks included family, friends, GP, nurses and companion animals. The amalgamation of the different types of relationships that constitute the social networks are characterised by three typologies; the family focused network, the friend focused network and the health care professional focused network. These network types reflected where support was sought in times of crisis. In the absence of 'typical' sources accounts highlighted the substitutability of network members which was often narrowly sought from key individuals. Changes in illness management, either positive or negative, were framed around critical moments as they challenged existing norms of practice and involved significant network members. Further, co-morbid conditions placed an additional complexity to management and priorities were shaped by the recursive relationship with health services which seemingly influences patients' orientation in becoming either active assessors of health care or less engaged through being overwhelmed. Conclusions: This thesis challenges the notion of 'self'-management as an individual construct as many of the practices of illness management involved the support and/or negotiation of roles with others. Critical moments are a key point where normalised management practices are challenged and have particular relevance for future interventions which could foster these critical points to facilitate such changes in routines. Interventions and education need to reflect this wider setting in which chronic illness management occurs for the practices of management to become normalised into everyday routines.

Masculine culture is known for teaching men to be strong, independent, and in control; however, the presence of chronic illness creates challenges for men when attempting to uphold a dominant masculine identity and make disclosure decisions about sharing illness information. This study explores the intersection between illness related self-disclosure and masculine culture. Utilizing qualitative methods, it examines the challenges chronically ill men face when making decisions about self-disclosure. Semi-structured interviews were conducted with five men (N=5) who have one or more chronic illnesses. Transcripts were analyzed and coded using grounded theory to identify emergent themes. The analysis revealed three primary themes and several secondary and tertiary themes. The three primary themes are: 1) participant expression of masculine culture; 2) communication challenges; and 3) disclosure strategies. Participants’ accounts of their experiences with living with chronic illness are positioned within literature on chronic illnesses, self-disclosure, and masculine culture.

abstract: Over 25% of children in the United States suffer from a chronic illness, and close to 70% of all childhood deaths are due to chronic illness. Prevalence of childhood chronic illness continues to increase, and as a result, the pervasiveness of parents faced with stress associated with caregiving for their child with a chronic illness is also rising. The Stress Process Model (SPM) conceptualizes the caregiving experience as a multidimensional process influenced by the caregiving context, primary and secondary stressors, resources, and caregiver outcomes. Utilizing the SPM, the goals of this study were to examine the relations between caregiving stress (role overload and role strain) and resources (instrumental support, social support, and positive attitudes) and psychological outcomes (depression and anxiety) to determine whether resources moderated the associations between caregiving stress and psychological outcomes. Participants included 200 parent caregivers of a child with a chronic illness. Participants responded to an online survey that measured demographics, role overload (Role Overload scale), role strain (The Revised Caregiver Burden Measure), instrumental support and social support (Medical Outcomes Survey), positive attitudes about caregiving (Brief Assessment Scale for Caregivers), depression (Patient Health Questionnaire-9), and anxiety (Generalized Anxiety Disorder scale-7). Pearson correlations and six hierarchical regression models were tested to examine caregiving stress, resources, and psychological outcomes. Consistent with the study hypotheses, positive correlations between caregiving stress (role overload and role strain) and depression and anxiety were found. Negative correlations were found between resources (instrumental support, social support, positive attitudes) and depression and anxiety. Both instrumental support and social support had negative moderating effects on the relations between role overload and psychological outcomes (depression and anxiety). Positive attitudes also negatively moderated the relations between role strain and psychological outcomes. Thus, when participants reported high instrumental and social support, they also reported low depression and anxiety, even when role overload was high. Participants also reported low anxiety and depression when they reported high positive attitudes, even when role strain was high. Implications of these findings are discussed. / Dissertation/Thesis / Doctoral Dissertation Counseling Psychology 2020

This study was designed to determine the effectiveness of Filial Therapy as a method of intervention with families with chronically ill children. Filial Therapy is an intervention that focuses on strengthening and enhancing the parent-child relationship. Parents are trained to become the agents of change for their children's behaviors by utilizing basic child-centered play therapy skills in weekly play sessions. The purpose of this study was to a) determine the effectiveness in decreasing parental stress, b) determine the effectiveness in increasing parental acceptance, and c) determine the effectiveness in decreasing problematic behaviors in the chronically ill child as assessed by their parents.

Still House is a poetry manuscript that explores the relationship between traditional gender roles and traditional poetic forms. The poems in this collections seek to revise the role of the homemaker and interrogate whether it is okay to take comfort and pleasure in tasks that are often labeled as feminine (i.e. cooking, baking, decorating, organizing, shopping, choosing outfits) while rejecting other parts of the homemaker archetype, such as subservience to and dependence upon men. Limited gender roles, patriarchy, sexist comments, capitalism, toxic masculinity, the cis-hetero-white-male gaze, trauma, physical pain, illness—these all can make it feel like we are not fully in control and ownership of our bodies, like something is encroaching. The poems in Still House are invested in using the poetics of embodiment (a poetics centered around telling stories about the body through immersive sensory details) to reclaim the body from trauma, patriarchy, and chronic pain and illness.

Theory and evidence suggests that person-centred models may be especially relevant for elucidating the role of perfectionism in health and well-being in those with chronic health conditions. This may be particularly true for conditions, such as chronic fatigue syndrome (CFS), in which perfectionism is known to play a prominent role in health outcomes. Yet to date no research has taken a person-centred approach to examine how within-person combinations of perfectionistic strivings and perfectionistic concerns are linked to vulnerability for poor health in CFS. The current study compared matched samples of people with CFS and healthy controls (N = 163 each) on measures of stress, depression, and health problems. Consistent with the Stress and Coping Cyclical Amplification Model of Perfectionism in Illness and the tripartite model of perfectionism, within-person combinations of high perfectionistic concerns and strivings had the poorest health profile compared to other within-person combinations, but only among those with CFS. In addition, the perfectionism was indirectly associated with health through stress in those with CFS only. Findings add to a growing evidence base on the utility of person-centred models for understanding the health risks of perfectionism in the context of chronic illness.

Spirituality represents a key part of life for the majority of U.S. adults and there is a growing body of research supporting relationships between spirituality and numerous health outcomes. Governing healthcare organizations have acknowledged the role religiousness and spirituality play in comprehensive and holistic patient care. While the U.S. shows documented trends towards diverse expressions of spirituality, existing theory-driven measures of spirituality are largely theocentric. The current study concludes a multiphase project that aimed at the outset to develop an inclusive measure of spirituality and establish initial psychometric evidence, validating its use across both theistic and nontheistic spiritual populations. The Inclusive Spiritual Connection Scale (ISCS) was developed based on an expanded conceptualization of spiritual connection to include both theistic and nontheistic expressions of spirituality. The current study builds on a previous study that established preliminary evidence of content validity of the ISCS, from which a 45-item pool was developed. In the present study, data were collected from 736 participants who indicated either theistic or nontheistic sources of spiritual connection. Using a split sample approach (primary developmental sample, n = 368; secondary developmental sample, n = 368) and a test-retest subsample (n =129), the 45-item pool underwent three phases of data analysis to establish initial psychometric evidence of the ISCS for use with theistic and nontheistic populations. Through a series of factor analytic procedures, the 45-item pool was reduced to 13 items, yielding a unidimensional scale of spiritual connection with evidence of sound psychometric properties. The ISCS demonstrated adequate evidence of convergent validity, limited evidence of divergent validity, and strong evidence of reliability. Assessment of measurement equivalence across nontheistic and theistic groups yielded partial evidence of equivalence; however, the baseline levels of spiritual connection appeared to differ between theistic and nontheistic participants. Initial psychometric properties support the ISCS as a reliable and valid tool to assess spiritual connection in spiritually diverse populations, though comparison between spiritual groups requires further validation. The ISCS responds directly to existing gaps in research and possesses the ability to support holistic healthcare care for all US adults regardless of spiritual expression.

Contexte : De nombreuses études ont établi que la maladie chronique d'un enfant représentait un risque suffisamment significatif pour les familles pour introduire le concept de résilience familiale, et ont défini des hypothèses quant à l'émergence de cette résilience. Objectif : En nous fondant sur le modèle psychosocial Family Systems Illness Model de John Rolland et sur la théorie du Resiliency Model of Family Stress, Adjustment and Adaptation de Hamilton McCubbin, décrire et analyser le processus de résilience de familles françaises élevant un ou plusieurs enfants atteints d'une maladie chronique rare. Méthodologie : évaluations quantitatives et qualitatives : des questionnaires standardisés (Fiche anamnestique détaillée, Impact on Family Scale, Family Index of Regenerativity and Adaptation, Family Relationship index), dont certains adaptés pour la première fois en France, et, auprès d'un nombre restreint de familles, des entretiens cliniques semi-structurés et des tests projectifs (Family Apperception Test, Dessin de famille). Résultats : 39 familles ont participé à l'étude quantitative et 7 à l'étude qualitative. Les 39 familles regroupent 37 mères, 27 pères, 26 enfants (14 frères et soeurs d'enfants malades et 11 enfants malades) et 3 « tiers » vivant au foyer familial. Les résultats montrent une bonne applicabilité des modèles et outils utilisés à une population française et à l'objet de notre étude. Les variables d'impact de la maladie sur les parents, d'ajustement et de fonctionnement familial se sont révélées très sensibles à la typologie clinique de la maladie. Ainsi, chez les parents, les caractéristiques de réduction de l'espérance de vie et de degré d'incapacités sont significativement associées à un impact plus lourd de la maladie, un moindre ajustement et une moindre qualité des relations familiales. Chez la fratrie, un lien négatif entre brutalité d'apparition et phase de la maladie, et variables dépendantes est observé. En terme de résilience, le soutien social, en particulier, joue un rôle important dans la stratégie d'ajustement, même si la nature du soutien utilisé diffère selon les membres de la famille. Un impact plus élevé de la maladie dans les familles monoparentales, une association positive entre niveau d'éducation de la mère et adaptation familiale, un impact négatif d'une longue durée d'obtention d'un diagnostic sur l'ensemble de la famille, ainsi qu'un lien entre les variables paternelles et la prédictabilité et la contrôlabilité de la maladie ont été relevés. Conclusion : Ces différents résultats nous ont permis, d'une part, de formuler des propositions cliniques en matière de prévention et de protection visant à soutenir les familles élevant un enfant souffrant d'une maladie chronique rare. Et d'autre part de présenter des perspectives de recherches futures, recherches qui devraient adopter une approche systémique et réaliser un suivi longitudinal de ces familles. / Context: Numerous studies have established that chronic illness is a sufficiently significant risk to allow the introduction of the concept of family resilience and have set hypotheses relating to the emergence of such resilience. Objectives: Using John Rolland's integrative psychosocial model about Families, Illness and Disability, and the McCubbin's Resiliency Model of Family Stress, Adjustement and Adaptation, we describe and explain the construct of resilience among 39 French families with children suffering from a rare chronic illness. Methodology: quantitative and qualitative evaluations: standardized questionnaires (Detailed anamnestic form, Impact on Family Scale, Family Relationship Index, Family Index of Regenerativity and Adaptation), and, with a limited number of families, semi-structured clinical interviews and projective tests (Family Apperception Test, Draw-a-Family). Results: 39 families have participated in the quantitative study and 7 in the qualitative study. These families count 37 mothers, 27 fathers, 26 children (14 siblings and 11 ill children) and 3 close relatives living with the family. Results show a good applicability of the models and tools chosen to a French population and the subject of the study. Variables of parental impact of the disease, family adjustment and functioning have proved to be very sensitive to the clinical typology of the disease. Thus, a higher parental impact of the disease and a lower parental perception of family adjustment and relationships are significantly associated with a disease presenting potential reduction of the life span and incapacities. In siblings, an abrupt onset and the phase of the disease are negatively linked to the dependent variables. Speaking of resilience, social support plays an important role in the adjustment strategy, even if the nature of social support preferred for that purpose differs between members of the family. A higher impact of the disease on single families, a positive association between the mother's education level and family adaptation, a negative impact of a long diagnosis period on the whole family, and a link between the father's variables and the predictability and controllability of the disease, have been observed. Conclusion: These results have allowed us on the first hand to propose prevention and protection measures to support families raising a child suffering from a rare chronic disease, and on the second hand to present perspectives for future research, which should adopt a systemic and longitudinal approach.