Isabelle Aujoulat

The Perspective of Patients on Their Experience of Powerlessness

Although self-determination is a key issue in empowerment, the perspective of patients on their experience of empowerment has been poorly investigated. The authors have attempted to understand better what the process of empowerment means to patients by investigating the situations and feelings of powerlessness from which a process of empowerment might evolve. They conducted 40 interviews of patients with various chronic conditions and looked for the commonalities in their experiences of powerlessness. Their findings show that powerlessness extends well beyond strictly medical and treatment-related issues, as the study participants all expressed or demonstrated to have at some point or another experienced a distressing feeling of insecurity and a threat to their social and personal identities. The authors therefore suggest that an empowering provider-patient interaction should address these issues by providing for reassurance and opportunities for self-exploration as a prerequisite to participation and self-determination in treatment-related decisions.

Psychosocial aspects of health seeking behaviours of patients with Buruli ulcer in southern Benin.

We investigated cultural beliefs and psychosocial factors associated with Buruli ulcer in southern Benin in order to elaborate and deliver appropriate health education messages. We conducted a qualitative study among 130 adults and 30 children in Zou province, a highly endemic region. Focus group interviews of inhabitants, patients and their assistants, health care professionals and traditional healers took place in Dasso, Ouinhi, Sagon and Zagnanado. Drawing sessions followed by individual interviews were organized among school children in Dasso and Sagon. We found that although Buruli ulcer is well known and recognized – even at a very early stage of the disease – and perceived as threatening, most people are reluctant to seek treatment at the health care centre. They are unclear about the origin of the disease (environmental factors or sorcery) and treatment is considered devastating, expensive and ineffective in some cases.

Non‐adherence in adolescent transplant recipients: The role of uncertainty in health care providers

Aujoulat I, Deccache A, Charles A‐S, Janssen M, Struyf C, Pélicand J, Ciccarelli O, Dobbels F, Reding R. Non‐adherence in adolescent transplant recipients: The role of uncertainty in health care providers.
Pediatr Transplantation 2011: 15:148–156.

A European perspective: common developments, differences and challenges in patient education.

In May 1999, a European meeting was held in Paris on the evolution and developments of patient education. The situation in different European countries and the factors influencing the development and improvement of patient education were discussed. Five categories of factors were identified: research and evidence based standards, the organization of care, training and methodological support, professional value and acknowledgement, funding and place of patient education in health policy. Several common orientations and priorities for the development of patient education have been presented, and are highlighted in this paper.

Factors associated with clinical inertia: an integrative review.

Failure to initiate or intensify therapy according to evidence-based guidelines is increasingly being acknowledged as a phenomenon that contributes to inadequate management of chronic conditions, and is referred to as clinical inertia. However, the number and complexity of factors associated with the clinical reasoning that underlies the decision-making processes in medicine calls for a critical examination of the consistency of the concept. Indeed, in the absence of information on and justification of treatment decisions that were made, clinical inertia may be only apparent, and actually reflect good clinical practice. This integrative review seeks to address the factors generally associated with clinical inaction, in order to better delineate the concept of true clinical inertia.

Should we retransplant a patient who is non‐adherent? A literature review and critical reflection

Dobbels F, Hames A, Aujoulat I, Heaton N, Samyn M. Should we retransplant a patient who is non‐adherent? A literature review and critical reflection. 
Pediatr Transplantation 2012: 16: 4–11.

Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups.

Background  There is limited information regarding quality of life in patients with inherited ichthyosis.

Communication difficulties of healthcare professionals and family caregivers of HIV infected patients

The family caregivers of HIV infected patients play a growing role in the support of the everyday life of their patient. Being more and more involved in different aspects of counselling and care-giving, they become the partner of the healthcare professionals who take care of the patient. It is nowadays well known that communication between healthcare professionals and patients is complex. So communication is between healthcare professionals and family caregivers, as our survey aims at demonstrating. Both the family caregivers and the healthcare professionals face difficulties and express needs and expectations that are important to meet in order to optimise the quality of care which is given to the patient.

Internalizing Motivation to Self-Care: A Multifaceted Challenge for Young Liver Transplant Recipients

The transition from parent-controlled care to self-managed care represents an important challenge for adolescents with chronic conditions. We sought to gain a deeper understanding of the factors influencing the internalization of motivation to self-care in adolescent liver transplant recipients. We conducted a qualitative study using in-depth interviews with 18 young patients. We triangulated the data collected from the patients with data from parents and health care providers, and used an inductive approach to analyze the data. Our results illustrate three interrelated challenges that impact on young patients’ motivation to self-care: (a) the cognitive challenge of fully understanding one’s condition and personal health risks; (b) the behavioral challenge of developing independence regarding self-management issues; and (c) the psychological challenge of building a sense of self-ownership and purpose. The latter involves overcoming the trauma of survival and coming to terms with feelings of obligation, two challenges inherent to transplantation that warrant further investigation.

Adolescent mothers’ perspectives regarding their own psychosocial and health needs: A qualitative exploratory study in Belgium

OBJECTIVES We looked at early pregnancy and parenthood as an opportunity to broaden our understanding of the reproductive health education needs met by adolescent girls. METHODS We conducted an in-depth interview study with 12 adolescent mothers. RESULTS To become a mother at a young age was perceived as meaningful to all the participants. The participants expressed a need to be addressed as adult parents, who want the best for their child. A variety of psychosocial and health needs emerged over a time span ranging from starting to be sexually active to after the child was born. Social isolation was found to be an important factor of vulnerability. CONCLUSION The health needs of adolescent mothers extend well beyond counselling around the decision to continue or terminate pregnancy, and subsequent information on contraception methods to avoid further pregnancies. Adolescent mothers need to be supported in their transition to parenthood, and special care should be provided to girls who are socially isolated. PRACTICE IMPLICATIONS We identified several avenues for health education and counselling to adolescent mothers, from primary prevention to reduce incidence of early pregnancies to tertiary prevention to reduce negative health outcomes for both mother and child.