For a better understanding of the relationship between caregivers and young adults living with a concomitant substance-related mental health and substance use disorder: an integrative review / Mieux comprendre la relation entre les intervenants et les jeunes adultes vivant avec un trouble concomitant de santé mentale et lié à l'usage de substances : une revue intégrative des écrits

Introduction: The importance of a quality relationship between young adults living with dual diagnosis and their health care providers is well documented. Context: Although this complex phenomenon was mostly studied from an individual perspective, the results indicated the systemic nature of this relationship. Objective: This study aims to better understand the relationship between young adults living with dual diagnosis and their health care providers, with a systemic perspective. Method: Six data bases were consulted; manual research in gray literature and references screening enhanced the process. Results: Of a total of 532 studies and reports identified, 44 were included in the review. Thematic data analysis was carried out, and two themes were identified: the health care system as a constraining environment; and the relationship at the heart of care. Discussion: This study confirms the joint role played by the young adult in question and their health care provider in developing and maintaining the relationship, by acknowledging the importance of the care, of mutual confidence, and of a hierarchic relationship. Conclusion: This integrative review provides a basis for future nursing interventions that foreground the relationship and take a systemic approach.

Introduction: Plusieurs écrits soulignent l'importance de la qualité de la relation entre de jeunes adultes présentant un trouble concomitant de santé mentale et lié aux substances, et leurs intervenants. Contexte: Ce phénomène complexe a toutefois été étudié surtout dans une perspective individuelle, alors que plusieurs résultats soutiennent le caractère systémique de cette relation. Objectif: Mieux comprendre, selon une perspective systémique, le phénomène de la relation entre ces jeunes adultes et leurs intervenants. Méthode: Une revue intégrative, encadrée par une approche systémique, a été effectuée à partir de six bases de données, d'une recherche manuelle de la littérature grise et d'une vérification des références. Résultats: 532 écrits ont été recensés, et 44 d'entre eux ont servi pour l'analyse thématique qui a fait ressortir deux thèmes : l'environnement contraignant du système de santé et la relation au cœur des soins. Discussion: Cette étude corrobore le rôle conjoint joué par le jeune et l'intervenant dans le développement et le maintien de leur relation, en reconnaissant l'importance des soins, de la confiance réciproque et de la relation hiérarchique. Conclusion: Les résultats peuvent constituer l'assise pour le développement d'interventions infirmières mettant à l'avant-plan la relation selon une perspective systémique.

For a better understanding of the relationship between caregivers and young adults living with a concomitant substance-related mental health and substance use disorder: An integrative review / Mieux comprendre la relation entre les intervenants et les jeunes adultes vivant avec un trouble concomitant de santé mentale et lié à l'usage de substances : une revue intégrative des écrits

INTRODUCTION: The importance of a quality relationship between young adults living with dual diagnosis and their health care providers is well documented. CONTEXT: Although this complex phenomenon was mostly studied from an individual perspective, the results indicated the systemic nature of this relationship. OBJECTIVE: This study aims to better understand the relationship between young adults living with dual diagnosis and their health care providers, with a systemic perspective. METHOD: Six data bases were consulted; manual research in gray literature and references screening enhanced the process. RESULTS: Of a total of 532 studies and reports identified, 44 were included in the review. Thematic data analysis was carried out, and two themes were identified: the health care system as a constraining environment; and the relationship at the heart of care. DISCUSSION: This study confirms the joint role played by the young adult in question and their health care provider in developing and maintaining the relationship, by acknowledging the importance of the care, of mutual confidence, and of a hierarchic relationship. CONCLUSION: This integrative review provides a basis for future nursing interventions that foreground the relationship and take a systemic approach.

Introduction: Plusieurs écrits soulignent l'importance de la qualité de la relation entre de jeunes adultes présentant un trouble concomitant de santé mentale et lié aux substances, et leurs intervenants. Contexte : ce phénomène complexe a toutefois été étudié surtout dans une perspective individuelle, alors que plusieurs résultats soutiennent le caractère systémique de cette relation. Objectif: Mieux comprendre, selon une perspective systémique, le phénomène de la relation entre ces jeunes adultes et leurs intervenants. Méthode: Une revue intégrative, encadrée par une approche systémique, a été effectuée à partir de six bases de données, d'une recherche manuelle de la littérature grise et d'une vérification des références. Résultats: 532 écrits ont été recensés, et 44 d'entre eux ont servi pour l'analyse thématique qui a fait ressortir deux thèmes : l'environnement contraignant du système de santé et la relation au cœur des soins. Discussion: Cette étude corrobore le rôle conjoint joué par le jeune et l'intervenant dans le développement et le maintien de leur relation, en reconnaissant l'importance des soins, de la confiance réciproque et de la relation hiérarchique. Conclusion: Les résultats peuvent constituer l'assise pour le développement d'interventions infirmières mettant à l'avant-plan la relation selon une perspective systémique.

Having Therapeutic Conversations With Fathers Grieving the Death of a Child.

A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to support grieving fathers. In our previous study, fathers identified core beliefs that influenced their experience of grief and coping. In this article, the Illness Beliefs Model was integrated with the findings to provide a framework for interventions to create open conversations, ease fathers' suffering, and thereby help their spouse and family suffering as well. This article will guide HCPs to engage in therapeutic conversations to support bereaved fathers.

Using a Wireless Electroencephalography Device to Evaluate E-Health and E-Learning Interventions.

BACKGROUND: Measuring engagement and other reactions of patients and health professionals to e-health and e-learning interventions remains a challenge for researchers. OBJECTIVE: The aim of this pilot study was to assess the feasibility and acceptability of using a wireless electroencephalography (EEG) device to measure affective (anxiety, enjoyment, relaxation) and cognitive (attention, engagement, interest) reactions of patients and healthcare professionals during e-health or e-learning interventions. METHODS: Using a wireless EEG device, we measured patient (n = 6) and health professional (n = 7) reactions during a 10-minute session of an e-health or e-learning intervention. The following feasibility and acceptability indicators were assessed and compared for patients and healthcare professionals: number of eligible participants who consented to participate, reasons for refusal, time to install and calibrate the wireless EEG device, number of participants who completed the full 10-minute sessions, participant comfort when wearing the device, signal quality, and number of observations obtained for each reaction. The wireless EEG readings were compared to participant self-rating of their reactions. RESULTS: We obtained at least 75% of possible observations for attention, engagement, enjoyment, and interest. EEG scores were similar to self-reported scores, but they varied throughout the sessions, which gave information on participants' real-time reactions to the e-health/e-learning interventions. Results on the other indicators support the feasibility and acceptability of the wireless EEG device for both patients and professionals. DISCUSSION: Using the wireless EEG device was feasible and acceptable. Future studies must examine its use in other contexts of care and explore which components of the interventions affected participant reactions by combining wireless EEG and eye tracking.

Effects of Cycled Lighting Versus Continuous Near Darkness on Physiological Stability and Motor Activity Level in Preterm Infants.

BACKGROUND: Preterm infants generally spend weeks in the neonatal intensive care unit where light intensity can fluctuate as well as be high, leading to physiological instability and increased motor activity in these infants. To date, 2 lighting control methods have been studied: cycled lighting and continuous near darkness. The most appropriate method of lighting is still unknown due to ambivalent results from the studies that have assessed these 2 interventions. OBJECTIVE: To compare the effects of cycled lighting versus continuous near darkness on physiological stability and motor activity level in preterm infants born between 28 and 32 weeks of gestation. METHODS: A randomized clinical trial was conducted to compare physiological stability and motor activity level in preterm infants assigned to cycled lighting or continuous near darkness. Thirty-eight participants were recruited and randomly assigned to one of the lighting conditions for 24 hours. Physiological stability was measured using the Stability of the Cardiorespiratory System in Premature Infants (SCRIP) score, the means, and the coefficient of variation of each physiological parameter measured. The level of motor activity was measured with an accelerometer. RESULTS: There were no significant differences between the 2 groups with regard to physiological stability measured by the SCRIP score, means, and coefficient of variation as well as motor activity level. Participants in both groups were physiologically stable and their motor activity level was comparable. IMPLICATIONS FOR PRACTICE AND RESEARCH: Neither cycled lighting nor continuous near darkness negatively impacted infant's physiologic stability and motor activity level. Further research is required to identify the most appropriate lighting control method for preterm infants born between 28 and 32 weeks of gestation.

Integrating the Illness Beliefs Model in clinical practice: a Family Systems Nursing knowledge utilization model.

To promote the integration of Family Systems Nursing (FSN) in clinical practice, we need to better understand how nurses overcome the challenges of FSN knowledge utilization. A qualitative exploratory study was conducted with 32 practicing female nurses from hospital and community settings who had received FSN intervention training and skill development based on the Illness Beliefs Model and the Calgary Family Assessment and Intervention Models. The participants were interviewed about how they utilized FSN knowledge in their nursing practice. From the data analysis, a FSN Knowledge Utilization Model emerged that involves three major components: (a) nurses' beliefs in FSN and in their FSN skills, (b) nurses' knowledge utilization strategies to address the challenges of FSN practice, and (c) FSN positive outcomes. The FSN Knowledge Utilization Model describes a circular, incremental, and iterative process used by nurses to integrate FSN in daily nursing practice. Findings point to a need for re-evaluation of educational and management strategies in clinical settings for advancing the practice of FSN.

[State of knowledge: couples' experiences of hospitalization due to high-risk pregnancy]. / Etat des connaissances sur l'expérience des couples lors de l'hospitalisation de la femme en raison d'une grossesse à risque élevé.

Taking charge of women with high-risk pregnancy is emerging. In some cases, hospitalization of the pregnant woman might be needed. In nursing sciences, few is known on the couples' experience of the hospitalization, because this event has mostly been explored using a maternal perspective. Some authors however suggest that using a systemic perspective would enhance the comprehension of this phenomenon and guide nursing cares development. In order to clarify the actual understanding of the phenomenon, a literature review has been made. The aim of this article is to present the state of knowledge regarding couples' experience of the women's hospitalization due to high-risk pregnancy. This is compared with the actual nursing practice in the context of practice of the first author of this article. The main themes emerging of this literature review include: giving sense to the antenatal hospitalization, organizing themselves to face danger, taking charge of stress and anxiety through hospitalization and needing each other support. This is followed by a consideration of possible research and nursing practice recommendations, while adopting a systemic constructivist perspective. It takes into account relations between partners and the hospitalization context. Finally, a model presenting the actual nursing practice is discussed.

Transitioning care of an adolescent with cystic fibrosis: development of systemic hypothesis between parents, adolescents, and health care professionals.

This qualitative study explored the experience of parents and adolescents living with cystic fibrosis prior to the transfer of the adolescent's care from a pediatric to an adult health care facility. Semistructured interviews were conducted with seven families receiving care from a specialized cystic fibrosis clinic; parents and adolescents were interviewed separately, followed by a group interview with members of a health care team comprising eight professionals from the clinic. Interviews were analyzed through a systemic lens which accounts for interaction and reciprocity in relationships. The parents' experience was marked by suffering and uncertainty that remained unexpressed to the health care team, even though team members had known the family since the child was first diagnosed. Findings led to identifying a systemic hypothesis that accounted for the interactions and relational processes between parents and the health care team. This hypothesis may guide the development of systemic family nursing interventions that target this complex, relational, transition process.

[Social representations, associated with cardiac heart failure, of couples of whom one member is living with the illness]. / Les représentations sociales liées a l'insuffisance cardiaque chez les couples dont un membre est atteint de la maladie.

There is a dearth of literature on the beliefs and constructs that influence couples' experience with cardiac heart failure (HF). This article summarizes a qualitative study that aimed to describe social representations associated to HF of II couples with one member diagnosed with the illness. The social representations that emerged from the study as well as the similitude and difference between spouses trigger interesting reflections on their link with the illness experience. A difference between men and women is especially noticeable in the social representations associated to the role of the patient and of the spouse in managing the illness. Results underline the importance of offering support to both members of the couple.

Families' and nurses' responses to the "One Question Question": reflections for clinical practice, education, and research in family nursing.

The "One Question Question," first coined by Dr. Lorraine M. Wright in 1989, is an interventive question designed to elicit family members' most pressing needs or concerns within the context of a therapeutic conversation. In this article, two clinical projects analyzed the responses to this unique interventive question. The first project analyzed the responses of 192 family members experiencing illness who were asked the question in the context of a therapeutic conversation; families focused on their need to deal with the impact of the illness on the family. The second project examined responses of 297 nurses who were asked the question prior to a 1-week Family Systems Nursing training program; nurses wanted to know how to deal with conflictual relationships between families and health care professionals and how to offer families time-efficient interventions. The responses from both groups, which were markedly different, triggered reflections about teaching, research, and practice in family nursing.

A qualitative evaluation of a family nursing intervention.

Congestive heart failure is a major source of anxiety for both patients and their family. This article presents the results of a qualitative case study aimed at evaluating family nursing interventions from the perspective of the family members and a clinical nurse specialist (CNS). A CNS applied a family nursing intervention program with 4 couples. Data were obtained through semistructured interviews preintervention and postintervention for the couples and postintervention for the CNS. The transcripts of the interviews were submitted for content analysis. For the couples, results show both spouses subject to a high level of suffering, which can be alleviated through a family nursing meeting that allows them to obtain a better understanding of each other's experience. For the CNS, family interventions were considered a privilege since they helped relieve suffering and her own feelings of powerlessness. These results have the potential to improve family nursing interventions and enhance CNS practice.

Comparing two types of perspective taking as strategies for detecting distress amongst parents of children with cancer: A randomised trial.

OBJECTIVE: To compare two perspective taking strategies on (i) clinicians' ability to accurately identify negative thoughts and feelings of parents of children with cancer, and (ii) clinician distress. METHODS: Sixty-three hematology-oncology professionals and nursing students watched a video featuring parents of children with cancer. Participants were randomly assigned to one of two groups. In the imagine-self group, they were instructed to imagine the feelings and life consequences which they would experience if they were in the parents' position. In the imagine-other group, they were instructed to imagine the feelings and life consequences experienced by the parents. Parent-clinician agreement on thoughts/feelings was evaluated (standard stimulus paradigm). Clinician distress was also assessed. RESULTS: The intervention was effective in manipulating perspective type. The groups did not significantly differ on parent-clinician agreement. Concentrating on personal feelings (imagine-self strategy) did predict lower agreement when controlling for trait empathy. Clinician distress was higher in the imagine-self group. CONCLUSION: Although the link between perspective type and detection of distress remains unclear, the results suggest that clinicians who highly focus on their own feelings tend to be less accurate on parental distress and experience more distress themselves. PRACTICE IMPLICATIONS: This research could potentially improve communication training and burnout prevention.

Development of the Adolescent Cancer Suffering Scale.

BACKGROUND: While mortality due to pediatric cancer has decreased, suffering has increased due to complex and lengthy treatments. Cancer in adolescence has repercussions on personal and physical development. Although suffering can impede recovery, there is no validated scale in French or English to measure suffering in adolescents with cancer. OBJECTIVE: To develop an objective scale to measure suffering in adolescents with cancer. METHODS: A methodological design for instrument development was used. Following a MEDLINE search, semistructured interviews were conducted with adolescents 12 to 19 years of age who had undergone four to six weeks of cancer treatment, and with a multidisciplinary cohort of health care professionals. Adolescents with advanced terminal cancer or cognitive impairment were excluded. Enrollment proceeded from the hematology-oncology department/clinic in Montreal, Quebec, from December 2011 to March 2012. Content validity was assessed by five health care professionals and four adolescents with cancer. RESULTS: Interviews with 19 adolescents and 16 health care professionals identified six realms of suffering: physical, psychological, spiritual, social, cognitive and global. Through iterative feedback, the Adolescent Cancer Suffering Scale (ACSS) was developed, comprising 41 questions on a four-point Likert scale and one open-ended question. Content validity was 0.98, and inter-rater agreement among professionals was 88% for relevance and 86% for clarity. Adolescents considered the scale to be representative of their suffering. CONCLUSIONS: The ACSS is the first questionnaire to measure suffering in adolescents with cancer. In future research, the questionnaire should be validated extensively and interventions developed. Once validated, the ACSS will contribute to promote a holistic approach to health with appropriate intervention or referral.

Usability testing of an online self-management program for adolescents with cancer.

The objective of this study was to explore the usability of a bilingual (English and French) Internet-based self-management program for adolescents with cancer and their parents and refine the Internet program. A qualitative study design with semistructured, audio-taped interviews and observation was undertaken with 4 iterative cycles. A purposive sample of English-speaking and French-speaking adolescents with cancer and one of their parents/caregivers was recruited. Adolescents and parents provided similar feedback on how to improve the usability of the Internet program. Most changes to the website were completed after the initial cycles of English and French testing. Both groups also found information presented on the website to be appropriate, credible, and relevant to their experiences of going through cancer. Participants reported the program would have been extremely helpful when they were first diagnosed with cancer. Usability testing uncovered some issues that affected the usability of the website that led to refinements in the online program.

Guaranteed returns: investing in conversations with families of patients with cancer.

Cancer can be considered a "family affair" because a cancer diagnosis affects patients and their families. A patient's family is comprised of the individuals that the patient identifies as family and may include people not biologically related to the patient. Although nurses play a key role in communicating with patients and their families, many lack confidence in their ability to provide emotional support. In addition, many educational resources are available to address the hands-on care of patients with cancer, but few are available to educate nurses about specific interventions that can be used in conversations with families. This article reviews practical suggestions to guide these conversations and provides examples of questions to ask to facilitate communication.

Families in palliative care: exploring family and health-care professionals' beliefs.

At the terminal stage of a disease, health professionals are encouraged to extend the scope of their interventions to include the family. However, clinicians often feel powerless when confronted with the suffering that family members experience. According to Wright, suffering is intimately related to family beliefs. These beliefs suffuse their experience of the illness and determine their understanding of the disease, the choice of treatment and compliance with a programme of care. Moreover, clinicians' own beliefs affect their sense of control over the patient and his or her family's suffering. This article suggests interventions that target families' and clinicians' beliefs and attempt to ease the dying process in a context of palliative care. These interventions consist of: acknowledging and challenging health-care professionals' own beliefs; exploring and challenging constraining beliefs of the patient and the family; and supporting beliefs that offer hope. These interventions can empower health professionals and families in their efforts to alleviate suffering related to the terminal phase of an illness.

[Confidence, supervision and taking responsibility: changes in the development of autonomy in families who live with an adolescent with cystic fibrosis]. / Confianza, vigilancia y responsabilización: cambios en el desarrollo de la autonomía en las familias que viven con un adolescente que padece de fibrosis quística.

OBJECTIVE: A growing number of families with an adolescent who has cystic fibrosis can now envisage their child making the transition from adolescence to adulthood. Limited research has been conducted to date regarding the nature of the interactions between adolescents and their parents during the development of the adolescent's independence. METHOD: The aim of this qualitative case study was to explore the experience of families with an adolescent who has cystic fibrosis, at the pre-transfer stage from a paediatric clinic to adult care. A systemic framework was used to get a better understanding of this phenomenon. Semi-directed interviews with seven families were conducted and a content analysis was performed. RESULTS: Features of the development of autonomy are characterised by three dimensions of the parental experience: (a) confidence that must be established between the adolescent and the parent, (b) adolescent's gradual increase of responsibility and (c) parent's supervision of the adolescent. CONCLUSIONS: This study gives new information on parental experience as regards the development of autonomy in adolescents who have cystic fibrosis. The results underline the importance of taking parental experience into consideration in order to support families in the development of the adolescent's autonomy.

Confianza, vigilancia y responsabilización: cambios en el desarrollo de la autonomía en las familias que viven con un adolescente que padece de fibrosis quística / Confidence, supervision and taking responsibility: changes in the development of autonomy in families who live with an adolescent with cystic fibrosis

Objetivo Un creciente número de familias con un adolescente que padece de fibrosis quística ahora puede tener la esperanza de que su hijo haga la transición de la adolescencia a la edad adulta. A la fecha, se han llevado a cabo muy pocas investigaciones con respecto a la naturaleza de las interacciones entre adolescentes y sus padres relacionadas con el desarrollo de la autonomía del adolescente.MétodoLa meta de este estudio cualitativo de casos era la de explorar la experiencia de las familias con un adolescente que padece de fibrosis quística, en la etapa de pretransferencia de una clínica pediátrica a un sistema de cuidados para adultos. Se aplicó un marco sistémico para obtener una mejor comprensión de este fenómeno. Se llevaron a cabo entrevistas semidirigidas con 7 familias y se realizó un análisis de contenido.ResultadosLas características del desarrollo de la autonomía se definen a través de 3 dimensiones de la experiencia paternal: a) la confianza que se debe establecer entre el adolescente y los padres, b) el incremento gradual de la responsabilidad del adolescente y c) la supervisión del adolescente por parte de los padres.ConclusionesEl presente estudio proporciona nueva información sobre la experiencia parental en relación con el desarrollo de autonomía en adolescentes que sufren de fibrosis quística. Los resultados subrayan la importancia de tomar en cuenta la experiencia parental para apoyar a las familias en el desarrollo de la autonomía del adolescente(AU)

Objective A growing number of families with an adolescent who has cystic fibrosis can now envisage their child making the transition from adolescence to adulthood. Limited research has been conducted to date regarding the nature of the interactions between adolescents and their parents during the development of the adolescent's independence.MethodThe aim of this qualitative case study was to explore the experience of families with an adolescent who has cystic fibrosis, at the pre-transfer stage from a paediatric clinic to adult care. A systemic framework was used to get a better understanding of this phenomenon. Semi-directed interviews with seven families were conducted and a content analysis was performed.ResultsFeatures of the development of autonomy are characterised by three dimensions of the parental experience: (a) confidence that must be established between the adolescent and the parent, (b) adolescent's gradual increase of responsibility and (c) parent's supervision of the adolescent.ConclusionsThis study gives new information on parental experience as regards the development of autonomy in adolescents who have cystic fibrosis. The results underline the importance of taking parental experience into consideration in order to support families in the development of the adolescent's autonomy(AU)