Psychosocial Research Research Articles

Death, the environment, and theology

AbstractIn order to fare better amidst a growing environmental crisis, we need to face death and mortality in more profound ways. Recent psychosocial research on environmental themes has provided crucial insights. People have trouble dealing with mortality, and because environmental threats remind them (often unconsciously) of death, they tend to escape into non‐sustainable behavior. In this article, I present key insights from this interdisciplinary research and explore its relevance for practicing theologians.

Close relationships and diabetes management across the lifespan: The good, the bad, and autonomy.

Relationships are linked with positive and negative self-management and illness outcomes for individuals with type 1 diabetes. Explanations for these mixed associations have remained separated in psychosocial research in type 1 diabetes by relationship type (e.g. parent vs spouse) and individual's age (e.g. adolescence vs older adulthood). In this conceptual review, we present a novel perspective that close relationships across the lifespan may be beneficial for illness self-management when they support individuals' sense of autonomy, defined from a Basic Psychological Needs perspective. Processes of autonomy support are crucial for promoting illness management across all ages and relationship types.

Impact of a Psycho-Educational Team in early Breast Cancer Patients' Coping Strategies: The Venere Project.

The main purpose of our psycho-educational groups was to help women with breast cancer, learn how to cope with the physical, emotional, and lifestyle changes associated with cancer as well as with medical treatments that can be painful and traumatic. With this study, we wanted to detect the effects that group action had on the women who participated in it. We studied a total of 97 patients who participated in 13 psycho-education groups. The whole sample was female patients who had breast cancer with no recurrence or metastases. All patients were evaluated with the Hospital Anxiety and Depression Scale (HADS) and the Body Image Scale (BIS). We found no significant effect on anxiety and body image for the brief psycho- educational group for women with breast cancer in this study. It is possible to highlight a statistical difference and hence an improvement between the results of the HADS depression test at T0 (first evaluation at the first meeting) and T1 (retest in the final meeting). The tests did not show a significant effect on anxiety and body image perception, but the patients reported that the psycho-educational group was an important intervention for their life. Outcome measurement is more complex in psychosocial research because many variables come into play and each phase of treatment is characterized by different types of problems for the patient: physical, relational and psychological aspects are involved.

Brief report of a tablet-delivered psychosocial intervention for men with advanced prostate cancer: Acceptability and efficacy by race.

Relative to non-Hispanic whites (NHW), black men are disproportionately affected by prostate cancer (PC) incidence, have poorer PC outcomes, and report greater compromises in health-related quality of life. Despite these challenges, black men are underrepresented in psychosocial cancer research, possibly due to limited access to supportive oncology programs. The purpose of this article is to examine the acceptability and efficacy for reducing disease-specific distress of a tablet-delivered psychosocial intervention for older men with advanced PC (APC) and explore differences by race. Men with APC (N = 192, 37.5% black, age M = 68.84 years) were randomized to 10-week Cognitive Behavioral Stress Management (CBSM) or attention-control Health Promotion (HP), both delivered via tablets. Assessments occurred at baseline in person, weekly during the 10-week program via tablets, and at 6 and 12 months in person. Weekly session evaluations and postprogram exit surveys assessed acceptability. Efficacy was assessed with a measure of PC-anxiety validated with racially diverse PC patients using linear mixed effects modeling. Study retention and group attendance did not differ by race. CBSM and HP were both acceptable among older APC patients. Black men rated both conditions more favorably than NHW men. Men in CBSM (vs. HP) reported greater reductions in PC-anxiety at 6 months (not sustained at 12 months). Black men in CBSM reported greater decreases in PC-anxiety over time compared with all other groups. Tablet-delivered CBSM and HP were acceptable for black and NHW APC patients, although black men rated both conditions more favorably. Black men reported a unique intervention benefit related to reduced disease-specific distress.

Giving voice to adults with intellectual disabilities and experience of mental ill-health: validity of a psychosocial approach.

Mental ill-health is more prevalent among adults with intellectual disabilities (ID) than in the wider population. An interest in the mental health needs of people with ID has developed in recent decades, which corresponds with implementation of the health and social policy of deinstitutionalisation. Much clinical and research activity has focused on how such mental health needs may be addressed. The literature indicates that the views of people with ID concerning their mental health care have received limited attention. To describe the adaption of a psychosocial research approach ( Hollway and Jefferson 2000 , 2013 ), and discuss the methodological challenges encountered in enabling adults with intellectual disabilities (ID) to express their views and be actively involved in producing knowledge about their experiences of care and support as service users with diagnosed mental health needs. A considerable advantage of the interview format of this psychosocial approach was the opportunities it afforded participants to recount their personal stories. This is contrary to the question-and-answer technique of interviewing, which can suppress the stories of interviewees. In such structured approaches, the interviewer establishes the boundaries and usually maintains control over the production of data. Undertaking two research interviews with participants, analysis of the entire material regarding individual participants, and undertaking comparative analysis of data relating to all participants provided a system for checking consistency. This approach therefore provides a valid method for enabling the participation of people with ID. The approach used is congruent with the requirement for the subjectivities of researchers - and those being researched - to be acknowledged, which is central to disability research. It is also compatible with person-centred planning and coproduction, which are central to contemporary ID nursing practice.

Developments and trends in the methodology of psycho-social research

This paper presents some paradigmatic shifts that emerged in the last years in the field of psychosocial research. There are reviewed separately those upgrades that took place in quantitative and qualitative methodology. For both methodological fields there are presented the dominant theoretical conception together with their most relevant methods and instruments used for data collecting and processing.

Recruiting young adult cancer patients: Experiences and sample characteristics from a 12-month longitudinal study.

Studies among young adult cancer patients are necessary to improve their psychosocial care situation. However, achieving high response rates in this group is challenging. This study focused on the psychosocial life and supportive care situation of young adult cancer patients, and reports the recruitment and retention strategies, sample characteristics and preferences. Participants (aged 18-39 years at diagnosis) diagnosed within the preceding 4 years were recruited from various clinical settings and surveyed at two time points. In total, 514 participants completed both surveys. Most patients were recruited from rehabilitation clinics (39.5%) and tumour registries (30.2%). Internet-based self-registration resulted in the highest yield of participants. Participants in inpatient (rehabilitation) treatment preferred to complete a hard copy of the questionnaire at baseline (59.7%), but a strong preference for using the online form was found at follow-up (74.5%). The distribution of diagnoses in the sample was almost comparable to the national incidence rates in Germany. Males and patients with melanoma were slightly under-represented. Recruitment of a large sample of young adult cancer patients is possible but requires intensive recruitment efforts, particularly in Germany. Social media and age-specific approaches were found to be effective for recruiting and retaining participants. Giving patients the option to complete a hard copy or the online version of the questionnaire, especially during inpatient treatment, may optimise participation rates. Psychosocial research and support programmes for young adults should consider that women are probably more likely to participate in psychosocial (research) programmes than men.

Situating our selves: using mixed media to convey experiences of psychosocial cancer research

ABSTRACT Background In contrast to the field of art therapy, the use of art-making as a form of reflective or creative practice by social scientists by themselves or for themselves has been limited. In this article, we describe the impetus and outcomes for collective art-making within our group of seven health researchers. Methods As a group, we represent sociology, psychology, nursing, occupational therapy, and kinesiology, as well as interdisciplinary studies. Guided by a professional artist, we engaged with mixed media to explore our experiences as psychosocial cancer researchers. Results Findings are brought to light through a process and outcome narrative that highlights the meaningfulness of cancer to researchers. Conclusions Key learnings could inform initiatives that other health researchers might undertake if choosing to expand beyond prevalent models of art as intervention for those who are ill to more fully engage those who explore such lines of inquiry.

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. Athree-round, online Delphi survey took place. Inround 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. In round 1,eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. By establishing a confluence of perspectives around research priorities, this study ensuresthe interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

Prescription drug claims following a traumatic spinal cord injury for older adults: a retrospective population-based study in Ontario, Canada

Study designRetrospective cohort study.ObjectivesThe objectives for this study were to examine the prevalence of polypharmacy for people with traumatic spinal cord injury (SCI) following injury and to determine risk factors.SettingOntario, CanadaMethodsWe used provincial-level administrative health services data of publicly funded healthcare encounters housed at the Institute for Clinical Evaluative Sciences, Toronto, Ontario. We examined prescription medications dispensed over a 1 year period post injury for persons 66+ years with an index traumatic SCI between 2004 and 2014. Polypharmacy was defined as being on 10 or more drug classes. Descriptive and analytical statistics were conducted. Relative risks and 95% confidence limits for factors related to polypharmacy were calculated using a robust Poisson multivariate regression model.ResultsWe identified 418 cases of persons with traumatic SCI during the observation window. A total of 233 patients (56%) were taking at least 10 drug classes in the year following discharge from care for traumatic SCI. The mean number of drug classes taken post injury was 11 (SD = 6). Continuity of care was significantly associated with polypharmacy, with a higher continuity of care (having at least 75% of visits with the same doctor) reducing the risk of polypharmacy. The most common drugs prescribed were laxatives, opioids and cardiovascular-related drugs.ConclusionFindings suggest that polypharmacy is extensive among older adults with traumatic SCI. Persons with better continuity of care are less likely to have polypharmacy compared to those with less continuity.SponsorshipThis project was funded by a Connaught New Investigator Award (University of Toronto), and the Craig H. Neilsen Foundation Psychosocial Research Pilot Grant (Grant #441259).

A Systematic Review of How Young People Live with Inherited Disease: What Can We Learn for Li-Fraumeni Syndrome?

Li-Fraumeni syndrome (LFS), a multiorgan cancer predisposition caused by germline TP53 mutations, confers significant cancer risks for young people (15-39 years). Yet evidence of how individuals experience this condition and the psychosocial implications are lacking. Therefore, this systematic review assessed the psychosocial implications of living with, or at risk of, an autosomal dominant condition as a young person, to draw evidence that may be analogous for young people with LFS. We conducted a systematic search for studies published in peer-reviewed journals using Medline, CINAHL, PsycINFO, and Embase databases. Findings were synthesized and are reported thematically. We screened 352 articles and identified 39 studies, representing the perspectives of 765 young people. Most studies addressed hereditary breast and ovarian cancer (n = 22) and used qualitative methodologies (n = 35). Only one LFS study was identified, highlighting the distinct lack of psychosocial research describing experiences of young people with LFS. Translatable evidence showed that familial factors strongly influenced young people's experiences of genetic testing and their mutation status. Major adverse reactions to genetic test results were rare, although young people with a gene mutation experienced various psychosocial concerns at key developmental milestones, including family planning, developing romantic relationships, and making risk management decisions. Young people undergoing genetic testing for inherited disease require individualized support and recognition of previous lived experiences. We recommend that longitudinal care be made available to young people with inherited disease as they reach developmental milestones that intersect with risk management, risk perception, and family formation.

A Meta-Synthesis of Qualitative Studies Exploring Men's Sense of Masculinity Post-Prostate Cancer Treatment.

There has been little psychosocial research concerning men's adaption to prostate cancer and treatment-related sexual dysfunction. Qualitative studies have explored men's sense of self after treatment, but the data have yet to be synthesized. The aim of this study was to report a meta-synthesis of qualitative studies exploring men's sense of masculinity after treatment of prostate cancer. Six databases were searched to identify relevant studies conducted and published between January 1990 and August 2016. Titles and abstracts were reviewed by 2 reviewers. Studies that met the inclusion criteria were selected and reviewed for quality. The extracted data were then synthesized. A total of 14 studies met the inclusion criteria and passed the quality assessment. The meta-synthesis found that men's sense of masculinity diminished after treatment of prostate cancer. Impotence, incontinence, and physical changes caused psychological stress. Underpinning these factors were cultural influences and dominant ideals of what it means to be a man. Men had entrenched ideas about what manhood entailed. The review found that men's sense of masculinity was diminished posttreatment of prostate cancer. They felt that they could not exercise their manliness because of the adverse effects associated with prostate cancer treatment. More support and communication throughout the process are required to better inform patients of the outcomes of treatment. In addition, it would be beneficial to have open forums through which to encourage men to talk frankly about their masculine identities.

Relationship between Omnibus and Post-hoc Tests: An Investigation of performance of the F test in ANOVA.

SummaryComparison of groups is a common statistical test in many biomedical and psychosocial research studies. When there are more than two groups, one first performs an omnibus test for an overall difference across the groups. If this null is rejected, one then proceeds to the next step of post-hoc pairwise group comparisons to determine sources of difference. Otherwise, one stops and declares no group difference. A common belief is that if the omnibus test is significant, there must exist at least two groups that are significantly different and vice versa. Thus, when the omnibus test is significant, but no post-hoc between-group comparison shows significant difference, one is bewildered at what is going on and wondering how to interpret the results. At the end of the spectrum, when the omnibus test is not significant, one wonders if all post-hoc tests will be non-significant as well so that stopping after a nonsignificant omnibus test will not lead to any missed opportunity of finding group difference. In this report, we investigate this perplexing phenomenon and discuss how to interpret such results.

Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

BackgroundPeople with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan‐European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions.ObjectiveTo involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions.Setting and participantsConsultations took place at four divergent sites across Europe, involving twenty‐five people with dementia from nine European countries.MethodsThe methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach.ResultsThe results suggested that people with dementia wish to participate in interventions that enhance their well‐being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes.Discussion and conclusionsInvolving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement.

Annual Research Review: Expanding mental health services through novel models of intervention delivery.

Currently, in the United States and worldwide, the vast majority of children and adolescents in need of mental health services receive no treatment. Although there are many barriers, a key barrier is the dominant model of delivering psychosocial interventions. That model includes one-to-one, in-person treatment, with a trained mental health professional, provided in clinical setting (e.g., clinic, private practice office, health-care facility). That model greatly limits the scale and reach of psychosocial interventions. The article discusses many novel models of delivering interventions that permit scaling treatment to encompass children and adolescents who are not likely to receive services. Special attention is accorded the use of social media, socially assistive robots, and social networks that not only convey the ability to scale interventions but also encompass interventions that depart from the usual forms of intervention that currently dominate psychosocial treatment research.

Social health in dementia care: harnessing an applied research agenda

The notion of social health (Huber et al., 2011) as applied to dementia care research was introduced to redress the balance of empirical studies that tended to focus on biomedical, cognitive, and functional status in dementia (Vernooij-Dassen and Jeon, 2016). The introduction of social health has followed the zeitgeist of campaigners for a better life for those living with dementia, with initiatives to improve the social images of dementia (Alzheimers.org, 2017). Examples from social research in dementia to examine friendships and the social environments of people with dementia exist (Medeiros et al., 2012), but introduction of the paradigm of social health in dementia (Vernooij-Dassen and Jeon, 2016) has harnessed a growing research agenda (de Vugt and Dröes, 2017). This paradigm provides an umbrella concept to study how social aspects influence the dynamic balance between opportunities and limitations in dementia. Social health goes beyond the neuropathology of dementia, to understand how people, their social networks and wider society with its norms, interact with the condition (Vernooij-Dassen and Jeon, 2016). It is not far removed from the ideas of Tom Kitwood, the pioneer of person-centered dementia care, who noted that "personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being" (Kitwood, 1997). The INTERDEM (Early detection and timely INTERvention in DEMentia, www.interdem.org) psychosocial research agenda aspired to improve knowledge about social inclusion and reciprocal relationships for people with dementia (Moniz-Cook et al., 2011). The concept of social health (Vernooij-Dassen and Jeon, 2016) with its dimensions for dementia research (Dröes et al., 2017) has begun to develop this knowledge-base.

‘It was sort of like a globe of abuse’. A psychosocial exploration of child protection social work with emotional abuse

This article draws on research findings from an Economic and Social Research Council (ESRC) funded PhD psychosocial exploration of child protection social work with emotional abuse. Intrafamilial harm occurs predominantly within the relationship between a parent and their child in the context of this research. Emotional abuse is a complex concept, comprising of many cumulative elements, which may include restricting a child’s psychological autonomy. Emotional abuse is not so clearly observed as other forms of parental harm, but it causes the most significant impairment. The dual overarching goals of this research was to make the less tangible aspects of work with this form of child abuse more visible, and to improve professional understandings of how to work with it more effectively. The focus of this article is to exemplify how the critical realist methodological framework and psychosocial research approach were developed to underpin the data collection and analysis processes. Psychosocial methods incorporate researcher and research participant’s use of self to explore the often deeply subjective, and undocumented process of identifying the presence of emotionally abusive behaviour. The research sought to elicit responses that enabled social workers to share their unconscious thought processes to get under the surface of everyday decision making. Sharing their ‘workings out’. This article draws on one social worker’s narrative of encountering emotional abuse to illuminate some of the professional and personal challenges the work can present. This research provides a methodological template for further research into supporting social workers in effective interventions into intrafamilial emotional abuse.

Predicting Teen Dating Violence Perpetration.

With our study we aimed to (1) understand what factors uniquely conferred risk for physical and sexual forms of teen dating violence (TDV) perpetration and (2) create a screening algorithm to quantify perpetration risk on the basis of these factors. A total of 1031 diverse public high school students living in Southeast Texas participated in our study (56% female; 29% African American, 28% white, and 31% Hispanic). Self-report measures concerning TDV and associated risk factors were completed annually for 6 years. Results suggested that family violence (domestic violence exposure, maltreatment) together with deficits in conflict resolution incrementally improved our forecasts above and beyond lifetime history of physical TDV perpetration (net reclassification improvement = 0.44; 95% confidence interval [CI] = 0.30-0.59). Meanwhile, a violent dating history (TDV sexual perpetration, sexual victimization, and emotional perpetration) and acceptance of TDV incrementally improved our models for forecasting sexual forms of perpetration (net reclassification improvement = 0.41; 95% CI = 0.24-0.58). These models adequately discriminated between future perpetrators and nonoffenders (area under the curve statistic >0.70; 95% CI: 0.69-0.74). Overall, adolescents with positive test results on our algorithms were over twice as likely to perpetrate dating violence over the course of 6 years. Our study represents one of the first applications of reclassification analyses to psychosocial research in a pediatric population. The result is a theoretically informed, empirically based algorithm that can adequately estimate the likelihood of physical and sexual TDV perpetration during vulnerable developmental periods. These findings can immediately aid emerging preventive initiatives for this increasing public health concern.

Continuous Glucose Monitoring Associated With Less Diabetes-Specific Emotional Distress and Lower A1c Among Adolescents With Type 1 Diabetes.

Psychosocial impact research of continuous glucose monitoring (CGM) and continuous subcutaneous insulin infusion (CSII) among adolescents with type 1 diabetes (T1D) is limited. The present study assesses associations between diabetes technology use on adolescent- and parent-perceived diabetes-specific distress and A1c. Adolescents with T1D and parents (N = 1040; primarily mothers) completed measures of diabetes distress. Adolescents were categorized by technology use: CGM Alone, CSII Alone, CGM+CSII, or No Technology. ANOVA, regression, and Cohen's d were used for group comparisons on measures of diabetes distress and A1c. Analyses also compared groups on clinical elevations of distress. CGM use was associated with less adolescent distress compared to No Technology ( d = 0.59), CGM+CSII ( d = 0.26), and CSII Alone ( d = 0.29). Results were similar but with smaller effect size for parent-reported distress, although CGM+CSII showed equivocal association with parent distress compared to No Technology ( d = 0.18). CGM Alone was associated with lower A1c compared to No Technology ( d = 0.48), to CSII Alone ( d = 0.37), and was comparable to CGM+CSII ( d = 0.03). CGM+CSII conferred advantage over CSII Alone ( d = 0.34). Clinical elevation of distress was associated with not using any technology particularly for adolescents. Technology use is associated with lower adolescent distress than lower parent distress. CGM Alone is associated with lower adolescent and parent distress than CSII or CGM+CSII. This appears to be clinically meaningful based on cut scores for measures. CGM is associated with lower A1c independent of being used alone or with CSII.

Chronic Anterior Uveitis in Children: Psychosocial Challenges for Patients and Their Families

To describe issues of concern to children with chronic anterior uveitis; to consider the psychological impact of chronic anterior uveitis on children's lives; and to understand the effect of a child's chronic illness on other family members. Expert commentary. Author experiences were supplemented by a review of pertinent medical literature and by consideration of content from semi-structured, separate patient and parent interviews. Vision loss and the fear of blindness are not the only stressors for children with chronic anterior uveitis and their families; of additional concern are the burdens of examinations and treatment regimens, as well as drug toxicities. Children with chronic anterior uveitis experience medical, academic, interpersonal, psychological, and developmental challenges. The impact of disease extends to other members of a patient's family as well; parents experience challenges in similar domains. Problems with adherence to medical regimens are common. Both the disease and its treatment affect quality of life, and can interfere with successful management of disease and transition to autonomy in adulthood, as reported for other chronic conditions. Coping processes vary greatly between different families. Eye examinations and the rigors of long-term treatment often influence the psychosocial health of patients and families; physicians who are aware of these issues can help patients and families cope with chronic illness and may improve outcomes. Further psychosocial research to understand the experiences of children dealing with chronic anterior uveitis is warranted; this commentary can serve as a foundation for development of age- and disease-specific research questions.