The experience of albinism in France: a qualitative study on dyads of parents and their adult child with albinism.

BACKGROUND: To date, almost no research on the psychosocial implications of albinism has been conducted in France and an exploration of albinism-related experiences could be beneficial, in order to better understand this condition. The aim of this study was to examine how French people with albinism and their parents live with and adapt to this condition in all the areas of their lives. METHODS: Semi-structured phone interviews were conducted with 9 parent-child dyads, each participating separately. Participants were recruited by convenience sampling, thanks to the combined efforts of a patient association (Genespoir) and professionals from the partner medical referral centers involved in the project. Dyads in which the individual with albinism had any comorbidity were excluded. The interviews were then transcribed and subjected to in-depth thematic analysis. Two codebooks were constructed in a mirrored process: one for people with albinism; the other for their parents. They were finally merged at the end of the coding step. RESULTS: Four main categories were identified: personal perceptions and social representations of albinism, difficulties and obstacles encountered by people with albinism, resources and facilitators, and the importance of parent-child functioning. The results indicated that experiences of stigmatization during childhood and adolescence are common and that people with albinism face challenges in adapting to certain obstacles related to their visual impairments (VI) (e.g., inability to drive a car; eye strain...). Parents emerged as one, if not as the main, source of support for people with albinism throughout their development. Although external support systems exist to assist them in various aspects of their lives, some of them primarily rely on their own personal resources to cope. CONCLUSIONS: This research highlights the importance of a systemic and transdisciplinary approach to make sure families receive the support that best meets their needs.

Psychosocial factors affecting the bereavement experience of relatives of palliative-stage cancer patients: a systematic review.

BACKGROUND: Cancer is one of the leading causes of death worldwide and a cancer death is a major risk factor for pathological bereavement. This systematic review of the literature aimed to identify biopsychosocial and existential determinants specific to the palliative phase of cancer that influence the grieving experience of the caregiving relative. METHOD: A systematic review of the literature was conducted without language or time restrictions. The Cairn, Cochrane Library, PubMed, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection databases were explored. All studies assessing pre- and post-death measures and focusing on friends and relatives caring for adults with cancer in palliative care services were included in the review. RESULTS: Out of 645 articles identified, 18 full text studies were finally included in our systematic review of the literature. Many factors specific to the cancer palliative phase were identified as influencing the bereavement experience of caregivers, with factors relating to: 1) the caregiver (e.g. social support, psychological burden, preparation for loss, action and discussion related to death); 2) the patient (e.g. denial or acceptance); 3) the interactions between patient and their caregivers (e.g. tensions, communication difficulties, and presence at the time of death); and 4) the end-of-life context. The caregiver's grief experience can be described by the following terms: typical and pathological grief, anxiety, depression, guilt, psychological distress, post-traumatic stress disorder and post-traumatic growth, and life satisfaction. CONCLUSIONS:  Many contextual, sociodemographic, dispositional and transactional factors specific to the palliative cancer phase are involved in the caregiver's grieving experience. Avenues for reflection and recommendations are proposed including supporting communication and patient-relative relationships, evaluating the nature and degree of functionality of coping strategies, strengthening the robustness of methodologies, considering impact of COVID-19, and new lines of enquiry for research.

Dyadic Experiences and Psychosocial Management of Couples Facing Advanced Cancer: A Systematic Review of the Literature.

Background: Cancer diagnosis and treatment represent a real upheaval both for the patient and for his or her life partner. Adjustment to cancer has been widely studied at the individual level, however, there is little in the literature about the experiences of the couple as an entity. This is especially true with regard to a population facing advanced cancer. This systematic review aimed to make an inventory of 1) the current knowledge relating to the experience of the patient-partner dyad when confronted with advanced cancer, and 2) the psychosocial interventions specifically centered on this dyad. Method: This review was conducted using the Cochrane methodology. The eligibility criteria for the literature review were: one of the members of the dyad being treated for advanced cancer, dyad composed of the patient and his/her life partner. Databases from PubMed, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection and Scopus were investigated. A thematic content analysis on the basis of admitted articles made it possible to respond to each of our research objectives. Results: Three hundred eighty-nine citations were found. Twenty were admitted to the systematic review of the literature. It highlighted the following experiences of the advanced cancer patient-life partner dyad: uncertainty about the future, disjointed time, intrusion into the couple's intimacy, attachment style and caregiving within the couple, couple's adjustment to cancer symptomatology, the couple's supportive care needs, role changes, nature of communication within the couple, anticipation of the coming death, and the meanings and beliefs around death. This review also describes the range of couple therapies used in the context of advanced cancer: emotionally focused-couple therapy, existential therapy, art therapy, support therapy and couple communication and intimacy promotion. These therapies seem to have individual beneficial effects for both the patient and his or her life partner as well as improving marital functioning. Conclusions: These results clearly highlight that consideration of the couple and communication within the couple during care are fundamental to dyadic adjustment to advanced cancer. Further studies (qualitative and quantitative) are needed to better understand the couple's experience in order to adapt the management of the couple facing advanced cancer.

[The wish to hasten death: Definition, determinants, issues and perspectives]. / Le souhait de hâter la mort : définition, déterminants, enjeux et perspectives.

In palliative care, it is not uncommon for people with serious illnesses to wish to hasten their death. These wishes present considerable challenges for health care professionals. The purpose of this review is to support healthcare professionals in their understanding and apprehension of patients' wishes to hasten their death. In order to do so, we will present the definition of this wish, and then we will study it, based on three main components, which are intentions, motivations and interactions. The common thread of this review lies in the following question: how to best support the human who faces death?