A scoping review to identify and describe the characteristics of theories, models and frameworks of health research partnerships.

BACKGROUND: Engaging users of health research, namely knowledge users, as partners in the research process may to lead to evidence that is more relevant to the users. This may optimize the uptake of evidence in healthcare practice, resulting in improved health outcomes or more efficient healthcare systems. However, barriers to involving knowledge users in the research process exist. Theories, models and frameworks may help guide the process of involving knowledge users and address barriers to engaging with knowledge users in research; however, there is little evidence identifying or describing the theories, models and frameworks of health research partnerships. OBJECTIVES: Identify and describe theories, models and frameworks of health research partnerships. Report on concepts of knowledge user engagement represented in identified theories, models and frameworks. METHODS: We conducted a scoping review. Database (MEDLINE, Embase, CINAHL, PCORI) and ancestry and snowball searches were utilized. Included articles were written in English, published between January 2005 and June 2021, specific to health, a research partnership, and referred to a theory, model or framework. No critical appraisal was conducted. We developed a coding framework to extract details related to the publication (e.g. country, year) and theory, model or framework (e.g. intended users, theoretical underpinning, methodology, methods of development, purpose, concepts of knowledge user engagement). One reviewer conducted data extraction. Descriptive statistics and narrative synthesis were utilized to report the results. RESULTS: We identified 21 874 articles in screening. Thirty-nine models or frameworks were included in data analysis, but no theory. Two models or frameworks (5%) were underpinned by theory. Literature review was the method (n = 11, 28%) most frequently used to develop a model or framework. Guiding or managing a partnership was the most frequently reported purpose of the model/framework (n = 14, 36%). The most represented concept of knowledge user engagement was principles/values (n = 36, 92%). CONCLUSIONS: The models and frameworks identified could be utilized by researchers and knowledge users to inform aspects of a health research partnership, such as guidance or implementation of a partnership. Future research evaluating the quality and applicability of the models and frameworks is necessary to help partners decide which model or framework to implement.

Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life.

BACKGROUND: Participating in everyday life is essential to the healthy development and emotional well-being of children. However, little is known about siblings of children with complex care needs (CCN), and their perspectives and experiences of participating in everyday life. The aim of this paper is to present research findings that add to our understanding of how siblings of children with CCN view and experience participation in everyday life. METHODS: To arrive at a detailed and accurate understanding of the siblings' perspectives and experiences, we used the qualitative research design of ethnography. Sixteen siblings (seven brothers, nine sisters) of children with CCN were recruited. The siblings ranged in age between 7 and 25 years, with a mean age of 14 years. All siblings took part in opened-ended interviews and completed ecomaps to describe how they participate. Five siblings also took part in the photovoice method. Analysis involved several iterative steps, congruent with ethnography. RESULTS: Four main themes emerged as follows: (1) participation is about being part of a group; (2) it feels good; (3) I love my sibling but…; and (4) promoting participation. Siblings of children with CCN identified challenges to participation and also described ways that they participate that relate to the care of their sibling. CONCLUSIONS: Siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life.

Self-perceived participation among adults with spinal cord injury: a grounded theory study.

STUDY DESIGN: A grounded theory study of 19 adults with spinal cord injury was conducted. Participants engaged in individual in-depth interviews, and took photographs of aspects of their environment that promoted and restricted participation. Analysis consisted of an inductive process of constant comparison. A focus group with participants was held to discuss and contribute to the credibility of findings. OBJECTIVES: To develop a theoretical understanding of the influences on self-perceived participation for individuals with SCI. SETTING: Manitoba, Canada. RESULTS: The constructed grounded theory model is summarized as follows: negotiating the body-environment interface is a continuous process for those living with a SCI. Despite the relative stability of their changed body, they live in a changed world, one that is perceived differently after SCI. People use various strategies to interact within their environment, to engage in a process of participation. Intervening conditions are the environmental aspects that serve as barriers or facilitators to this process of participation. CONCLUSIONS: Study findings lend support to the need for a self-perceived definition of participation. The theory constructed in this study can be used to target interventions intended to improve the participation experiences of individuals with SCI.

Symptom distress in adult patients with cancer.

Symptom distress in the adult population with cancer is of concern to clinicians who care for these patients. Increased research has been directed toward the development and refinement of symptom distress scales, the identification of determinants of symptom distress, the investigation of symptom distress as a predictor, and the examination of the relationship between quality of life and symptom distress. Findings from this research have increased our understanding of symptom distress in adult patients with cancer. However, a major limitation of work to date has been a lack of consensus related to the definition and measurement of the symptom distress construct. The purpose of this article is to address existing conceptual and methodological challenges inherent in the study of symptom distress, and to make recommendations for further research in this area.

Life is never the same: childhood cancer narratives.

No longer considered an inevitably fatal disease, childhood cancer nonetheless presents many challenges for children and families. Developing an understanding of the impact that childhood cancer has on the lives of children and their families is essential to being able to provide comprehensive and sensitive care to them. Hence, a longitudinal qualitative study guided by the philosophy of interpretive interactionism was conducted to arrive at an understanding of what it was like to experience childhood cancer and its symptom course from the perspectives of children and their families. Thirty-nine children with a variety of cancer diagnoses and their families participated. Data collection methods included formal and informal interviewing and participant observation. As part of the data analysis process, narratives of the children's and families' experiences were created that provided direction in comprehending how childhood cancer and its symptoms affected children and their families. The narratives helped to illuminate the reality of the children's and families' experiences. This paper focuses on describing the core narrative lived by the children and their families. The core narrative, 'life is never the same', represents the extent to which cancer truly affected the children's and their families' life stories. Three narratives embedded in the core narrative are also described: (1) losses: shared and unique; (2) moving forward, moving on; and (3) it is never over with . . . always a waiting game. The narratives in this paper are valuable to those healthcare professionals who seek to develop a greater understanding of how childhood cancer and its symptoms impacts on children's and families' ways of being in the world.

Social support in children with cancer: a review of the literature.

Families experiencing childhood cancer are confronted with many stressors throughout the course of illness. For children with cancer, such stressors may be especially challenging. The extent to which they are able to deal with such challenges appears to be partly contingent on the support available from others. Positive social relations are considered to improve the quality of life of individuals in general and to help protect or buffer them from stressful life events such as cancer. This article presents a critical review and synthesis of research examining social support in children with cancer. Recommendations for research that will provide a foundation for understanding social support in children with cancer are outlined. These recommendations include the need to investigate (a) social support as a guiding, central construct, (b) social support from a family socio-cultural perspective, (c) social support from a developmental perspective, and (d) social support as a process. Implications for pediatric oncology nursing practice are discussed.

Health professionals caring for chronically ill adolescents: adolescents' perspectives.

PURPOSE: To describe chronically ill adolescents' perceptions of how health professionals can best care for chronically ill adolescents. DESIGN: A qualitative study with tenets from grounded theory, including theoretical sampling and the constant comparison of data. SETTING: Participants' homes of private hospital offices. PARTICIPANTS: Twenty-three adolescents, 13 to 16 years of age, who were diagnosed with either diabetes, asthma, arthritis, Crohn's disease, or ulcerative colitis. MAIN OUTCOME MEASURES: Open-ended, in-depth interview method. RESULTS: Eight themes emerged: (1) treat me like a person; (2) try to understand; (3) don't treat me differently; (4) give me some encouragement; (5) don't force me; (6) give me options; (7) have a sense of humor; and (8) know what you are doing. CONCLUSIONS: Health professionals need to adopt an overall approach described as careful maneuvering when caring for adolescents with chronic illness. This approach involves the health professional having sound knowledge and the ability to guide adolescents confidently and sensitively in the management of their illness.

Adolescents' perspectives of chronic illness: "it's hard".

An exploratory, qualitative study with tenets from grounded theory was used to elicit detailed descriptions of adolescents' chronic illness experiences. The philosophy of symbolic interactionism guided this study. Understanding the adolescents' experiences included exploring adolescents' perspectives of the following: (1) what it is like to have a chronic illness, and (2) how they deal with having a chronic illness. A sample of 23 adolescents, 13 to 16 years of age, and diagnosed with either diabetes, asthma, arthritis, Crohn's disease, or ulcerative colitis participated. Data collection involved the adolescents participating in open-ended interviews. The constant comparative method was used to analyze all data from the interviews. The findings revealed that having a chronic illness made life more difficult for the adolescents. Adolescents experience extra effort, restriction, pain, and additional worries because of having a chronic illness. However, adolescents also clearly had ways to help them deal with their illness. These strategies and recommendations for practice and future research are discussed.

Conceptual understanding of resilience in the adolescent with cancer: Part I.

During the past two decades, increased research attention has been directed toward understanding the adolescent who is confronted with challenges such as poverty or substance abuse. Accordingly, pediatric oncology nurse researchers and clinicians are increasingly becoming interested in understanding the experience of resilience in the adolescent with cancer. Research and clinical reports have shown that many adolescents with cancer are resilient even though they experience multiple stressors. That is, even in the face of adversity, they develop into well-adapted individuals. The purpose of this article is to develop a conceptual understanding of resilience in adolescents with cancer. Areas that are addressed include the following: (a) an historical overview of the major theoretical paradigms used to understand the pediatric cancer experience; (b) a summary of definitional issues related to the construct of resilience; and (c) a conceptual model of resilience. New insights are provided that may lead pediatric oncology nurse researchers and clinicians to examine resilience in the adolescent with cancer from a variety of perspectives.

A review of the literature on resilience in the adolescent with cancer: Part II.

Adolescents with cancer experience multiple stressors that may stem from both the illness and from normal developmental tasks. Some adolescents remain or become resilient even when faced with multiple challenges. An understanding of what contributes to resilience in the adolescent cancer experience is important in caring for adolescents with cancer and childhood cancer survivors. The purpose of this article is to provide a synthesis of the literature related to resilience in the adolescent cancer experience. Research recommendations based on theoretical and methodological limitations noted in the review are presented.

Care of the terminally ill cachectic cancer patient: interface between nursing and psychological anthropology.

The wasted appearance of the terminally ill cachectic cancer patient is a major source of concern for both patients and families. To date, this experience has mainly been understood from a biomedical perspective. However, considering this experience occurs within unique social, historical and cultural contexts, a more holistic approach to capturing this experience is warranted. This paper will argue that the interface between psychological anthropology and nursing provides an alternative approach from which the experience of 'wasting away' might be examined. Special attention to the use of explanatory models of illness and illness narratives in capturing this interface will be explored.

Research with families in palliative care: conceptual and methodological challenges.

Conducting research with families of individuals receiving palliative care is challenging. Issues contributing to the challenge include defining the family, determining the unit of analysis in the level of inquiry, and identifying pathways to knowledge about the family. The purpose of this paper is to provide an overview of the major conceptual and methodological issues facing family researchers in general, with an aim to examining how these issues impact researchers studying families of individuals receiving palliative care.