André Samson

The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illness

Objectives: Duchenne muscular dystrophy (DMD) is genetically determined, progressive and incurable. Our studys primary objective was to describe the lived experience of hope among parents of a child with DMD. Methods: Semi-structured interviews were conducted with 12 parents having a child with DMD. A qualitative/ phenomenological approach was utilized to analyse the essential aspects of this experience. Results: We show that the experience of parental hope emerges from the cognitive appraisal of DMD. The childs illness can be perceived in three ways: as a severe loss, a call to adapt or a way to rediscover the child. Each of these appraisals leads to different ways of hoping. Parents can hope for a cure, the childs well-being or to see their child becoming a whole person. Hope can help parents absorb the initial crisis, sustain their adaptation or prepare for the fatal outcome. Discussion: Previous research has demonstrated that cognitive appraisal plays a central role in psychosocial adaptation to illness. Our research indicates that perception can also shape the nature of hope and suggests that health professionals should pay particular attention to the nature of parental hope. The fabric of parental hope can give an indication of how parents are coping and adjusting.

The Experience of Spirituality in the Psycho-Social Adaptation of Cancer Survivors

This article presents the results of a retrospective, phenomenological study of the experience of spirituality in the psychosocial adaptation of cancer survivors. The experience of illness for the participants in the study is one which promotes greater personal and spiritual growth. The study demonstrates that illness provokes personal growth and transformation in the individual. While making use of pre-existing coping resources, the person with cancer reevaluates and restructures her or his life, integrating new values, priorities, and perspectives which lead the patient to invest her or his life in something meaningful and beneficial to others.

Reflex testing for Lynch syndrome: If we build it, will they come? Lessons learned from the uptake of clinical genetics services by individuals with newly diagnosed colorectal cancer (CRC)

The aim of this qualitative study was to examine the experience of individuals facing a choice about genetic counselling/testing in the context of newly diagnosed colorectal cancer (CRC). Nineteen individuals with newly diagnosed CRC, including 12 individuals who accepted genetic counselling (“acceptors”) and 7 individuals who declined genetic counselling (“refusers”), were interviewed using a standardized questionnaire guide which focused on motivations and barriers experienced in the decision process. Data were analyzed using Karlsson’s Empirical Phenomenological method of data analysis (Karlsson in Psychological qualitative research from a phenomenological perspective. Almgvist and Wiksell International, Stockholm, 1993). Three major themes were identified: facing challenges in health literacy; mapping an unknown territory; and adjusting to cancer. The study participants’ testimonies provided novel insights into potential reasons for patient non-engagement in pilot studies of reflex testing for Lynch syndrome, and allowed us to formulate several recommendations for enhancing patient engagement. Our study findings suggest that patient engagement in clinical cancer genetics services, including reflex testing for Lynch syndrome, can only be achieved by addressing current health literacy issues, by deconstructing current misconceptions related to potential abuses of genetic information, by emphasizing the clinical utility of genetic assessment, and by adapting genetics practices to the specific context of cancer care.

Living with the BRCA genetic mutation: An uncertain conclusion to an unending process

Women carrying a BRCA1 or BRCA2 genetic mutation have an up to 80% lifetime risk of developing breast cancer. It is especially important to understand the experiences of these women, as their lives are permeated with the threat of cancer. This qualitative study examined the experiences of six young women of reproductive age (age < 45 years) who were identified as carriers. The analysis of the semi-structured interviews inspired by grounded theory methodology, showed that participants experienced the same type of uncertainty demonstrated by women who have already been diagnosed with breast cancer.

Self-fulfillment despite barriers: volunteer work of people living with HIV

Abstract With the decline in the morbidity and mortality associated with HIV infection, the majority of people living with HIV (PWHIV) experience a higher quality of life and longer life expectancy. Since this diagnosis no longer prevents an active lifestyle, many PWHIV are re-integrating into the workplace or are contemplating this possibility. Despite the multiple advantages associated with a return to work, research has identified barriers related to work and HIV infection. These barriers could prevent an important minority of PWHIV who wish to return to work from re-integrating into this environment. In this context, volunteering could be an alternate way to regain an active lifestyle. This research found that volunteer work allowed participants to enrich their social lives, to regain a sense of psychological well-being, and to apply their abilities to the benefit of others. However, participants are restricted by their preference to volunteer for HIV-related organizations in order to avoid social stigma and rejection.

Living with the BRCA1 and BRCA2 genetic mutation: Learning how to adapt to a virtual chronic illness

The objective of this study was to understand how women living with the BRCA1 and BRCA2 genetic mutation adapt to this life transition and to identify the main adaptive tasks. A qualitative inquiry inspired by grounded theory revealed that participants cognitively appraised their test result in the same manner as women who have been diagnosed with breast cancer. Consequently, participants had to adapt to a condition that they perceived as a chronic illness. The following three main tasks were identified: Physical Task: Attempting to Limit the Impact of the Test Result, Psychological Task: Living with Uncertainty, and Social Task: Finding Effective Support. In conclusion, although these women live with the possibility of developing breast cancer, their experiences mirror those of individuals living with a chronic illness, and they must therefore adapt accordingly in a physical, psychological, and social manner.

Genetic testing: When prediction generates stigmatization

Using grounded theory methodology, this study examined the experiences of six BRCA1/2 gene mutation carriers (mean age = 38.5 years). Three types of stigmatization were identified: stigmatization by anticipation, stigmatization through rejection, and stigmatization by affiliation. Participants described potential impacts on their womanhood, felt threatened by others, and revealed fears that their children would inherit their stigmatization. These findings indicate the importance of psychological support in the follow-up of such patients.

Gender‐specific differences in the psychosocial adjustment of parents of a child with duchenne muscular dystrophy (DMD) ‐ Two points of view for a shared experience

Research was conducted on parents’ experience of caring for a child living with Duchenne muscular dystrophy (DMD). The focus of this research was on the key psychological aspects of the process of adjustment to the illness of their child (family and spousal relationship, daily life, emotions, career, spirituality, and coping strategies). There was evidence throughout the study of gender‐specific differences in constructing the different aspects of the shared experience. The main findings included major differences in the initial reaction and coping styles between mothers and fathers. These differences could be perceived as a threat or could serve as a source of isolation between parents. Additional findings included the unequal sharing of caregiving tasks between partners: the primary caregiving role usually being assumed by the mother, with the father playing a supportive role. The unique contribution of this study in further describing the lived experience of parents of a child with DMD is its attention to the internal dynamic of the relationship between mothers and fathers. This dynamic is highly dependent on the respective roles of primary and secondary caregiver. This research has implications for the design and implementation of intervention strategies aimed at couples caring for a child with DMD, or with other severe, chronic, and uniformly fatal illnesses.

Francophones living with HIV/AIDS in Ontario: The unknown reality of an invisible cultural minority

A strong body of evidence demonstrates that education, prevention and intervention, in the context of HIV/AIDS, should take ethno-racial diversity into account. The current research focuses on the cultural sensitivity manifested by AIDS service organisation ASO professionals towards Francophone minority persons living with HIV/AIDS Francophone PHAs in the two main urban centres of Ontario: Ottawa and Toronto. More specifically, this qualitative research will describe two different points of view: Francophone PHA service users n17 and ASO professionals n12. Data were collected from multiple focus groups and analysed using a phenomenological methodology. The analysis revealed that an important difference exists in the perceptions of language as an integral part of ethno-racial diversity. For ASO professionals, language is perceived as a simple tool of communication. For Francophones living with HIV/AIDS, however, language is perceived as a way to convey sensitivity to their cultural reality and a full recognition of their Canadian citizenship. This research showed that cultural sensitivity should include a linguistic aspect when it comes to health-related services, especially in the context of an officially bilingual country.

Living and Working with HIV/AIDS: A Lifelong Process of Adaptation

Advancements in scientific knowledge and pharmacological therapies have led to the suppression of HIV replication in infected individuals and the concomitant recovery of immune function. This, in turn, has prompted a dramatic decline in the morbidity and mortality rates associated with HIV infection (UNAIDS, 2010; Werth, Borges, McNally, Maguire, & Britton, 2008). As a consequence, the majority of people living with HIV (PWHIV) who have access to anti-retroviral therapy and to the appropriate medical followups experience a higher quality of life and longer life expectancy. A study conducted in Denmark estimated the median survival time for a young person diagnosed with HIV today at 38.9 years (Lohse et al., 2007). A primary consequence of this evolution is that PWHIV must learn to adapt to their infection over the long term. The etymology of the verb “ to adapt” stems from the Latin roots “ad”, which means “towards”, and “aptus”, which signifies “apt,” in the sense of something that is suitable. Therefore, “to adapt” literally means to move towards a suitable outcome or resolution. In the case of HIV/AIDS infection, successful adaptation involves restoring a sense of normalcy to one’s everyday life, where “normalcy” is defined by PWHIV according to their perceived needs and situation. This process of adaptation involves numerous aspects, including medical/physical, psychological/affective, social, spiritual and vocational. Therefore, it is crucial to gain an in-depth understanding of how this process of adjustment unfolds. In an effort to develop such an understanding, this chapter presents and describes a comprehensive theoretical model that accounts for the different aspects of this specific adaptive process. This chapter is divided into two main sections: the first is entitled “living with HIV/AIDS” and the second “working with HIV/AIDS”. The former of the two sections is dedicated to developing a comprehensive task-based model of adaptation (CTBMA) to HIV/AIDS that incorporates the following five components: source of stress, cognitive appraisal, adaptive tasks, coping skills and outcome. The latter section describes a very specific adaptive task, the vocational one, that stems from the fact that HIV/AIDS is now categorized as a chronic illness that develops over the long term. Since it is now possible to lead an active life while living with HIV/AIDS, it is pertinent to understand how work helps PWHIV adapt to their infection.