Sandra Peláez

Patients’ perspective of barriers and facilitators to taking long-term controller medication for asthma: a novel taxonomy

BackgroundAlthough asthma morbidity can be prevented through long-term controller medication, most patients with persistent asthma do not take their daily inhaled corticosteroid. The objective of this study was to gather patients’ insights into barriers and facilitators to taking long-term daily inhaled corticosteroids as basis for future knowledge translation interventions.MethodsWe conducted a collective qualitative case study. We interviewed 24 adults, adolescents, or parents of children, with asthma who had received a prescription of long-term inhaled corticosteroids in the previous year. The one-hour face-to-face interviews revolved around patients’ perceptions of asthma, use of asthma medications, current self-management, prior changes in self-management, as well as patient-physician relationship. We sought barriers and facilitators to optimal asthma management. Interviews were transcribed verbatim and transcripts were analyzed using a thematic approach.ResultsPatients were aged 2–76 years old and 58% were female. Nine patients were followed by an asthma specialist (pulmonologist or allergist), 13 patients by family doctors or pediatricians, and two patients had no regular follow-up. Barriers and facilitators to long-term daily inhaled corticosteroids were classified into the following loci of responsibility and its corresponding domains: (1) patient (cognition; motivation, attitudes and preferences; practical implementation; and parental support); (2) patient-physician interaction (communication and patient-physician relationship); and (3) health care system (resources and services). Patients recognized that several barriers and facilitators fell within their own responsibility. They also underlined the crucial impact (positive or negative) on their adherence of the quality of patient-physician interaction and health care system accessibility.ConclusionsWe identified a close relationship between reported barriers and facilitators to adherence to long-term daily controller medication for asthma within three loci of responsibility. As such, patients’ adherence must be approached as a multi-level phenomenon; moreover, interventions targeting the patient, the patient-physician interaction, and the health care system are recommended. The present study offers a potential taxonomy of barriers and facilitators to adherence to long-term daily inhaled corticosteroids therapy that, once validated, may be used for planning a knowledge translation intervention and may be applicable to other chronic conditions.

Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study

Background Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood. Objectives To gain an in-depth understanding of the emotional experiences and sources of emotional distress for women and men living with scleroderma through focus group discussions. Methods Three semi-structured focus group discussions were conducted (two in English, one in French) with a total of 22 people with scleroderma recruited through the Scleroderma Society of Ontario in Hamilton, Ontario and a scleroderma clinic in Montreal, Canada. Interviews were recorded, transcribed, and then coded for emerging themes using thematic inductive analysis. Results Core themes representing sources of emotional distress were identified, including: (a) facing a new reality; (b) the daily struggle of living with scleroderma; (c) handling work, employment and general financial burden; (d) changing family roles; (e) social interactions; and (f) navigating the health care system. Collectively, these themes refer to the stressful journey of living with scleroderma including the obstacles faced and the emotional experiences beginning prior to receiving a diagnosis and continuing throughout the participants’ lives. Conclusion Scleroderma was portrayed as being an unpredictable and overwhelming disease, resulting in many individuals experiencing multiple sources of emotional distress. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease.

Social Networks and Exercise in Coronary Heart Disease Patients

PURPOSE: Coronary heart disease (CHD) is a leading cause of death in the Western world. Although the benefits of exercise as a health behavior are widely known, the majority of CHD patients fail to adhere to an exercise program. The availability of social networks has been shown to be related to health behaviors; however, the impact that social networks have on CHD patient exercise involvement is not well understood. The aim of this study was to investigate the role social networks, defined as the number and source of people patients lived with, plays on exercise involvement in CHD patients. METHODS: A total of 756 cardiac outpatients (236 women and 520 men) were recruited. Presence, source, and size of patient social networks and exercise (total leisure-time physical activity) were assessed via a questionnaire. RESULTS: There was no difference in exercise involvement, as measured in metabolic equivalents of task hours per week, between those patients living with at least 1 other person and those people who lived alone (M = 7.53, SD = 0.50, and M = 8.49, SD = 1.07, respectively; F = 0.65, P = .422). However, there was a significant difference between patients who currently lived with a child compared with those who did not live with a child (F = 6.98, P = .008). Patients with children engaged in less exercise than those who did not live with a child (M = 5.41; SD = 0.97 vs M = 8.46; SD = 0.53). CONCLUSIONS: Considering that only living with children, rather than living with any other individual, seemed to affect patient exercise involvement, further research is needed to investigate the social mechanisms underlying this relationship.

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross‐sectional Study

Peer‐led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups.

Challenges newly-arrived migrant women in Montreal face when needing maternity care: Health care professionals’ perspectives

BackgroundPeople who leave their country of origin, or the country of habitual residence, to establish themselves permanently in another country are usually referred to as migrants. Over half of all births in Montreal, Canada are to migrant women. To understand healthcare professionals’ attitudes towards migrants that could influence their delivery of care, our objective was to explore their perspectives of challenges newly-arrived migrant women from non-Western countries face when needing maternity care.MethodIn this qualitative multiple case study, we conducted face-to-face interviews with 63 health care professionals from four teaching hospitals in Montreal, known for providing maternity care to a high volume of migrant women. Interviews were transcribed and thematically analysed.ResultsPhysicians, nurses, social workers, and therapists participated; 90% were female; and 17% were themselves migrants from non-Western countries. According to participants, newly-arrived migrant women face challenges at two levels: (a) direct care (e.g., understanding Canadian health care professionals’ expectations, communicating effectively with health care professionals), and (b) organizational (e.g., access to appropriate health care). Challenges women face are strongly influenced by the migrant woman’s background as well as social position (e.g., general education, health literacy, socio-cultural integration) and by how health care professionals balance women’s needs with perceived requirement to adhere to standard procedures and regulations.ConclusionsHealth care professionals across institutions agreed that maternity care-related challenges faced by newly-arrived migrant women often are complex in that they are simultaneously driven by conflicting values: those based on migrant women’s sociocultural backgrounds versus those related to the implementation of Canadian guidelines for maternity care in which consideration of migrant women’s particular needs are not priority.

Understanding coping strategies among people living with scleroderma: a focus group study

Abstract Purpose: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications. Coping strategies used by scleroderma patients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma. Method: Three semi-structured focus group discussions were conducted with a total of 22 people with scleroderma. Interviews were recorded, transcribed, and analyzed using content analysis. Coping strategies discussed were analyzed through Lazarus and Folkman’s theoretical model of coping, including: (1) problem-focused, (2) emotion-focused, and (3) meaning-focused coping. Results: Participants reported using a combination of problem-focused (e.g., professional help; seeking disease-related information), emotion-focused (e.g., social support; adaptive distraction techniques), and meaning-focused coping strategies (e.g., benefit finding; goal reappraisal) to help them to cope with and manage their disease. However, many patients reported having difficulty in accessing support services. Conclusions: Scleroderma patients use similar coping strategies as patients with more common diseases, but they may not have access to the same level of support services. Accessible interventions, including self-management programs, aimed at improving problem- and emotion-focused coping are needed. Further, increased access to support groups may provide patients with opportunities to obtain social support and enhance coping.

Acculturation Experiences Among Lesbian, Gay, Bisexual, and Transgender Immigrants in Canada ψ:

In the current study, we used a grounded theory methodology to understand the acculturation process of LGBT immigrants in Canada. Results revealed two parallel themes: Cultural Identity Development and Sexual and Gender Identity Development. Heterosexism and cissexism in the culture of origin was a central phenomenon in the development of the cultural, sexual, and gender aspects of LGBT immigrant identity. Moreover, LGBT immigrants’ culture of origin and Canadian culture influenced their sexual and gender identity development before and after immigration. Results suggest that many LGBT immigrants assume a Western orientation as a coping response to heterosexism and cissexism in their culture of origin, even before immigration occurs. The current study identified the perceived challenges and advantages that LGBT immigrants experience during the acculturation process as well as various acculturation outcomes. We discuss clinical implications and future research directions in light of the results.

Development and preliminary validation of the Scleroderma Support Group Leader Self-efficacy Scale

Support groups are an important resource for people living with systemic sclerosis (SSc; scleroderma). Peer support group leaders play an important role in the success and sustainability of SSc support groups, but face challenges that include a lack of formal training. An SSc support group leader training program could improve leader self-efficacy to carry out important leadership tasks, including the management of group dynamics. However, no measures exist to assess self-efficacy among SSc support group leaders. The objective of this study was to develop and provide preliminary evidence on the reliability and validity of the Scleroderma Support Group Leader Self-efficacy Scale (SSGLSS). The SSGLSS was administered to two sets of SSc support group leaders from North America, Europe, and Australia. Study 1 participants (n = 102) completed the SSGLSS only. Study 2 participants (n = 55) completed the SSGLSS and the Oldenburg Burnout Inventory (OLBI). For both studies, we evaluated internal consistency reliability using Cronbach’s coefficient alpha. Convergent validity was assessed in Study 2 using Pearson correlations of the SSGLSS with the OLBI exhaustion and disengagement subscales. Cronbach’s alpha was 0.96 in Study 1 and 0.95 in Study 2. Consistent with our hypotheses, there was a small negative correlation between SSGLSS scores and the OLBI exhaustion subscale (r = -0.25, p<0.01) and a moderate negative correlation between SSGLSS scores and the disengagement subscale (r = -0.38, p<0.01). These results suggest that the SSGLSS is a reliable and valid measure of self-efficacy for carrying out support group leadership tasks.

Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program

Abstract Purpose: The purpose of this study was to explore challenges faced by patients with systemic sclerosis, also called scleroderma, in coping with their disease and the strategies they used to face those challenges. Method: Five focus groups were held with scleroderma patients (4 groups, n = 34) and health care professionals who have experience treating scleroderma (1 group, n = 8). Participants’ discussions were recorded, transcribed and analyzed using thematic analysis. Results: Participants reported challenges accessing information (e.g., knowledgeable specialists), dealing with negative emotions (e.g., stress due to misunderstandings with loved ones), and accessing resources (e.g., helpful products or devices). Strategies for overcoming challenges were also discussed (e.g., advocating for own needs). Conclusion: When faced with significant challenges while coping with scleroderma, patients develop strategies to manage better and improve their quality of life. To help them cope, patients would benefit from easier access to supportive interventions, including tailored scleroderma self-management programs. Although the challenges experienced by patients with scleroderma are unique, findings from this study might help better understand patients’ perspectives regarding coping and disease management for other chronic diseases as well. Implications for Rehabilitation People living with rare diseases, including the rare autoimmune disease scleroderma, face unique challenges and often do not have access to disease-specific educational or other support resources. People with scleroderma report that they face challenges in accessing information, including knowledgeable healthcare providers; managing difficult social interactions and negative emotions; and accessing resources. Strategies employed by scleroderma patients to overcome these challenges include seeking connections to other people with scleroderma or scleroderma patient organizations, actively seeking out local resources, and learning to communicate and advocate more effectively. Rehabilitation professionals can support people with scleroderma by providing them with information on connecting with scleroderma patient organizations or by facilitating local patient support networks.

Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey

Abstract Purpose: Peer-facilitated support groups are an important resource for people with scleroderma, but little is known about challenges faced by support group facilitators. The objective was to identify training and support needs of scleroderma support group facilitators to inform the development of an educational training program. Methods: A 32-item survey assessed confidence of support group facilitators to execute tasks necessary for successfully facilitating support groups. Survey items were grouped into seven themes using content analysis. Results: Eighty North American scleroderma support group facilitators completed the survey. Facilitators were generally confident in their ability to complete tasks related to: (1) Organizing, Structuring, and Facilitating the group; (2) Addressing Individual Member Needs and Diversity of the Group; (3) Helping Members Cope with Grief and Loss; and (4) Attaining and Responding to Member Feedback. They were less confident in their ability to perform tasks related to (1) Managing Difficult Group Dynamics; (2) Promoting and Sustaining the Group; and (3) Balancing Personal and Group Needs. Conclusion: Results suggest that a training program for scleroderma support group facilitators should address a broad range of topics, including managing difficult group interactions, promotion and maintaining the group, and balancing personal and support group needs. Implications for Rehabilitation Many patients with the rare autoimmune connective tissue disease scleroderma depend on peer-facilitated support groups for disease-related education and peer support, but the lack of training for facilitators is a barrier to forming and sustaining groups. Rehabilitation professionals can support the formation and management of local support groups by providing education and support to peer group facilitators or by referring them to national scleroderma organizations who are developing training resources. Training for support group facilitators should focus on areas where facilitators were least confident in their abilities, including managing difficult group dynamics, promoting and sustaining the group, and balancing personal and group needs.