Roanne Thomas

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest Improving Care for Families Experiencing Childhood Cancer

The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank’s dialogical narrative analysis. Findings demonstrated that parents’ experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child’s illness and highlights the need for health professionals to invite conversations about parents’ illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents’ experiences.

The quality of life of male spouses of women with breast cancer: hope, self-efficacy, and perceptions of guilt.

Background: The quality of life of male spouses of partners with breast cancer may determine the support they are able to give their wives. Little is known about the factors associated with their quality of life. Objective: The purpose of this study was to examine the relationship of the quality of life of male spouses of partners with breast cancer with the following factors: (a) demographic variables of male spouses and their partners, (b) levels of hope of male spouses and their partners, (c) self-efficacy and loss and grief of male spouses, and (d) quality of life of partners with breast cancer. Methods: Six hundred surveys were mailed to women with breast cancer (stage 1–3) and their male spouses. A total of 110 surveys were completed. Results: With the use of generalized linear modeling, participating male spouses with higher quality of life scores: (a) were older (P = .01), (b) had higher hope scores (P = .01), (c) had lower feelings of guilt scores (P < .01) (subscale of loss and grief), (d) had higher general self-efficacy scores (P < .01), and (e) had partners with breast cancer with higher quality of life scores (P < .01). Conclusions: Hope, self-efficacy, feelings of guilt, age, and their partners’ quality of life were significantly related to quality of life of the male spouses of women with breast cancer. Implications for Practice: The findings underscore the importance of assessing for and fostering hope and self-efficacy as well as decreasing guilt in male spouses of women with breast cancer to improve their quality of life.

Keeping hope possible: a grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer.

Background: Hope has been found to support parents as they care for their child with a life-limiting or life-threatening illness. However, very little research focuses on the nursing care of parents of pediatric oncology patients, and therefore, nurses may have difficulty in understanding and supporting parental well-being. Objective: The purpose of this qualitative study was to gain an understanding of the experience of hope for parents who care for their child in treatment for cancer. Methods: Using purposive theoretical sampling, 16 parents participated in this study. Thirty-three open-ended, face-to-face interviews were conducted, and 14 parent journals were collected. Analysis of the data was conducted using Charmaz’s constructivist grounded theory approach. Results: A developing, substantive grounded theory was constructed. Parental hope was described as an essential, powerful, deliberate, life-sustaining, dynamic, cyclical process that was anchored in time; was calming and strengthening; and provided inner guidance through the challenging experience of preparing for the worst and hoping for the best. Parents’ main concern was “fearing the loss of hope,” which was ameliorated by the basic social process of “keeping hope possible” through accepting reality, establishing control, restructuring hope, and purposive positive thinking. Conclusions: Parents journeyed through numerous transitions related to the treatment of cancer that caused feelings of uncertainty, anxiety, stress, and loss of control. Hope was identified as vital to parents. Implications for Practice: To minimize these adverse experiences, nurses can support parents’ ability to keep hope possible and thus to optimize their well-being by understanding, assessing, and supporting parental hope.

Survivors’ experiences of return to work following cancer: A photovoice study

Background. For many working-age cancer survivors, return to work represents a quality-of-life indicator. However, there is currently a lack of resources to assist survivors with navigating this process. Purpose. As a first step toward informing resources to address this gap, 10 female survivors’ return-to-work experiences were explored. Method. Photovoice methods were combined with interviews. Photographs and text were analyzed to identify key themes. Findings. Return to work was psychosocially motivated. Survivors independently decided if they would take leave and, if so, when they would return to work. Successful work reintegration was characterized as respectful, collaborative, and customized to each survivor’s ongoing limitations and variable recovery. Implications. The findings underscore a holistic, client-centred, and collaborative approach to successful return to work with cancer survivors. Occupational therapists, with their vocational rehabilitation knowledge and responsive practice philosophy, are well positioned to address this gap in survivorship support. Description. Pour de nombreuses personnes en âge de travailler ayant survécu à un cancer, le retour au travail représente un indicateur de la qualité de vie. Cependant, on constate actuellement un manque de ressources pour accompagner les survivants tout au long de ce processus. But. Dans une première étape visant à orienter les ressources en vue d’aborder cette lacune, les expériences vécues par 10 survivantes face à leur retour au travail ont été explorées. Méthodologie. Des méthodes photovoice ont été combinées à des entrevues, puis des photographies et des textes ont été analysés en vue de dégager les principaux thèmes. Résultats. Le retour au travail a été influencé par des facteurs psychosociaux. Les survivantes avaient décidé de manière autonome si elles souhaitaient s’absenter du travail, et si c’était le cas, elles aussi avaient décidé du moment où elles retourneraient au travail. La réintégration au travail réussie était décrite comme étant respectueuse, axée sur la collaboration et adaptée aux limitations et au rythme de rétablissement variable de chaque survivante. Conséquences. Les résultats mettent en évidence l’importance d’offrir une approche globale, collaborative et centrée sur la personne pour favoriser la réintégration au travail des survivants d’un cancer. Compte tenu de leurs connaissances sur la réadaptation professionnelle et de leur philosophie de la pratique adaptée aux besoins de la personne, les ergothérapeutes sont dans une position idéale pour aborder le manque de soutien aux survivants d’un cancer.

Reflections from a Creative Community-Based Participatory Research Project Exploring Health and Body Image with First Nations Girls

In Canada, Aboriginal peoples often experience a multitude of inequalities when compared with the general population, particularly in relation to health (e.g., increased incidence of diabetes). These inequalities are rooted in a negative history of colonization. Decolonizing methodologies recognize these realities and aim to shift the focus from communities being researched to being collaborative partners in the research process. This article describes a qualitative community-based participatory research project focused on health and body image with First Nations girls in a Tribal Council region in Western Canada. We discuss our project design and the incorporation of creative methods (e.g., photovoice) to foster integration and collaboration as related to decolonizing methodology principles. This article is both descriptive and reflective as it summarizes our project and discusses lessons learned from the process, integrating evaluations from the participating girls as well as our reflections as researchers.

Hope against hope: Exploring the hopes and challenges of rural female caregivers of persons with advanced cancer.

BackgroundThis paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges.MethodsTwenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled ‘hope against hope.’ResultsThe journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure.ConclusionsThis research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.

Illustrating the (in)visible: Understanding the impact of loss in adults living with secondary lymphedema after cancer

Life with a disability is often riddled with paradoxes, one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Our article draws attention to this paradox among people who live with secondary lymphedema after cancer (SLC). SLC is a relatively unfamiliar chronic condition within medical and lay discourses of cancer, which proves challenging for the many cancer survivors who are in search of information and understanding. Thirteen men and women with SLC were recruited from two research sites (Fredericton, NB, and Ottawa, ON, Canada) to participate in semi-structured interviews about the physical and psychosocial aspects of SLC. Using a methodology of interpretive description, our analysis of participant interviews reveals the complex ways in which men and women felt both visible and invisible within various contexts. We discuss three majors themes: (in)visibility and appearance related to material losses; (in)visibility and action connected to visible losses in function, as well as invisible struggles to care for oneself; and the loss of present and future well-being, as SLC renders some limitations visible while potentially obscuring a hopeful future indefinitely. Our research indicates that timely diagnosis of SLC would be an immediate first step in recognizing the physical and emotional dimensions of the condition. To accomplish this, increased awareness is needed. To enhance quality of life for those living with SLC, the development of new resources and psychosocial supports is also required.Life with a disability is often riddled with paradoxes, one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Our article draws attention to this paradox among people who live with secondary lymphedema after cancer (SLC). SLC is a relatively unfamiliar chronic condition within medical and lay discourses of cancer, which proves challenging for the many cancer survivors who are in search of information and understanding. Thirteen men and women with SLC were recruited from two research sites (Fredericton, NB, and Ottawa, ON, Canada) to participate in semi-structured interviews about the physical and psychosocial aspects of SLC. Using a methodology of interpretive description, our analysis of participant interviews reveals the complex ways in which men and women felt both visible and invisible within various contexts. We discuss three majors themes: (in)visibility and appearance related to material losses; (in)visibility and action connected to visible losses in function, as well as invisible struggles to care for oneself; and the loss of present and future well-being, as SLC renders some limitations visible while potentially obscuring a hopeful future indefinitely. Our research indicates that timely diagnosis of SLC would be an immediate first step in recognizing the physical and emotional dimensions of the condition. To accomplish this, increased awareness is needed. To enhance quality of life for those living with SLC, the development of new resources and psychosocial supports is also required.Life with a disability is often riddled with paradoxes, one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Our article draws attention to this paradox among people who live with secondary lymphedema after cancer (SLC). SLC is a relatively unfamiliar chronic condition within medical and lay discourses of cancer, which proves challenging for the many cancer survivors who are in search of information and understanding. Thirteen men and women with SLC were recruited from two research sites (Fredericton, NB, and Ottawa, ON, Canada) to participate in semi-structured interviews about the physical and psychosocial aspects of SLC. Using a methodology of interpretive description, our analysis of participant interviews reveals the complex ways in which men and women felt both visible and invisible within various contexts. We discuss three majors themes: (in)visibility and appearance related to material losses; (in)visibility and action connected to visible losses in function, as well as invisible struggles to care for oneself; and the loss of present and future well-being, as SLC renders some limitations visible while potentially obscuring a hopeful future indefinitely. Our research indicates that timely diagnosis of SLC would be an immediate first step in recognizing the physical and emotional dimensions of the condition. To accomplish this, increased awareness is needed. To enhance quality of life for those living with SLC, the development of new resources and psychosocial supports is also required.

Internet-based implementation of non-pharmacological interventions of the "people getting a grip on arthritis" educational program: an international online knowledge translation randomized controlled trial design protocol.

Background Rheumatoid arthritis (RA) affects 2.1% of the Australian population (1.5% males; 2.6% females), with the highest prevalence from ages 55 to over 75 years (4.4-6.1%). In Canada, RA affects approximately 0.9% of adults, and within 30 years that is expected to increase to 1.3%. With an aging population and a greater number of individuals with modifiable risk factors for chronic diseases, such as arthritis, there is an urgent need for co-care management of arthritic conditions. The increasing trend and present shifts in the health services and policy sectors suggest that digital information delivery is becoming more prominent. Therefore, it is necessary to further investigate the use of online resources for RA information delivery. Objective The objective is to examine the effect of implementing an online program provided to patients with RA, the People Getting a Grip on Arthritis for RA (PGrip-RA) program, using information communication technologies (ie, Facebook and emails) in combination with arthritis health care professional support and electronic educational pamphlets. We believe this can serve as a useful and economical method of knowledge translation (KT). Methods This KT randomized controlled trial will use a prospective randomized open-label blinded-endpoint design to compare four different intervention approaches of the PGrip-RA program to a control group receiving general electronic educational pamphlets self-management in RA via email. Depending on group allocation, links to the Arthritis Society PGrip-RA material will be provided either through Facebook or by email. One group will receive feedback online from trained health care professionals. The intervention period is 6 weeks. Participants will have access to the Internet-based material after the completion of the baseline questionnaires until the final follow-up questionnaire at 6 months. We will invite 396 patients from Canadian and Australian Arthritis Consumers’ Associations to participate using online recruitment. Results This study will build on a pilot study using Facebook, which revealed promising effects of knowledge acquisition/integration of the evidence-based self-management PGrip educational program. Conclusions The use of online techniques to disseminate knowledge provides an opportunity to reduce health care costs by facilitating self-management of people with arthritis. Study design strengths include the incorporation of randomization and allocation concealment to ensure internal validity. To avoid intergroup contamination, the Facebook group page security settings will be set to “closed”, thus allowing only invited participants to access it. Study limitations include the lack of participant blinding due to the characteristics of this KT randomized controlled trial and a potential bias of recruiting patients only online, though this was proven effective in the previous pilot study. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12614000397617; http://www.anzctr.org.au/TrialSearch.aspx (Archived by WebCite at http://www.webcitation.org/6PrP0kQf8).

Yoga as palliation in women with advanced cancer: a pilot study

OBJECTIVE The purpose of this pilot study was to investigate the palliative potential of home-based yoga sessions provided to women with advanced cancer. METHOD Personalised 45-minute yoga sessions were offered to three women with advanced cancer by an experienced yoga teacher. Each woman took part in a one-to-one interview after the completion of the yoga programme and was asked to describe her experiences of the programmes impact. RESULTS The personalised nature of the yoga sessions resulted in similar positive physical and psychosocial effects comparable to those demonstrated in other studies with cancer patients. Participants described physical, mental, and emotional benefits as well as the alleviation of illness impacts. The enhancement of mind-body and body-spirit connections were also noted. CONCLUSION Personalised home-based yoga programmes for people with advanced cancer may produce similar benefits, including palliation, as those institutionally-based programmes for people with non-advanced cancer.

First Nations, Inuit, and Métis Women's Experiences of Cancer Survivorship: Protocol for the National Picture Project

Little is known about First Nations, Inuit, and Métis (FNIM) womens experiences with cancer, including how they relate to cultural and social factors such as geography, history, racism, identity, traditional values/practices, and spirituality. Research into FNIM womens strengths and challenges in relation to cancer is much needed. Our team, in partnership with Saint Elizabeth Health, is documenting the experiences and needs of 60 FNIM cancer survivors across Canada, using sharing sessions, photography (photovoice), journaling, and film. We will evaluate the impact of photography and journaling on the participants to assist with the future development of supportive programs and health- care delivery. This innovative research will result in a video, which will address gaps in knowledge and care. The video will then be screened in several communities and will be publicly available. In future projects, the findings and video will be used in supportive programs for cancer survivors and in educational initiatives for health professionals.