Participatory family workshops in psychosocial health and illness research: experiences from Danish health promotion projects.

Family involvement in health and illness research is a complex matter, often characterized by unclear structural relations and contrasting needs and expectations within the family. As the family is a setting in which health and illness behaviors are developed, maintained and potentially changed, gaining knowledge about family dynamics and how to approach familial health promotion is essential. But which methodological approaches are best suited to collecting data for generating such knowledge? We propose using participatory family workshops as a method to generate in-depth data on health-related psychosocial family dynamics, the goal is to improve the field of familial health promotion. We have used family workshops in a variety of settings among various target groups in different research and development projects. In the present article, we re-visit and discuss three research projects focusing on (i) families living with type 2 diabetes, (ii) family-based prevention of childhood obesity and (iii) families with a child with type 1 diabetes. We present experiences with all phases involved in planning and facilitating research workshops. Key points are discussed in relation to implications and perspectives for practice and research. Family workshops are complex and sometimes unpredictable. However, when family workshops are successful, they provide rich and dynamic in-depth data that cannot be produced using more traditional forms of data collection. The article provides an outline of experiences as well as hands-on recommendations for working with family workshops.

A delicate balance between control and flexibility: Experiences of care and support among pre-teenage children with type 1 diabetes and their families.

For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre-teens (9-12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre-teens with type 1 diabetes and their families. Data were obtained from four interactive workshops with pre-teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.

Implementing a collaborative model in health education practice: a process evaluation of a health education programme targeting users with mental health problems.

BACKGROUND: Users with mental health problems (users) have a substantially higher risk of developing type 2 diabetes than the general population. Recent studies show that traditional lifestyle interventions focusing solely on exercise and diet among users have limited effect. Studies suggest collaborative models as a starting point for health behaviour change are more beneficial, but implementation in practice is a challenge. Using the Medical Research Council's guidance for process evaluation, we explored implementation of a collaborative model in health education activities targeting users. The collaborative model focused on involving users in agenda setting and reflection about readiness to change health behaviour and was supported by dialogue tools (e.g., quotes and games). Educators received 3 days of training in applying the model. METHODS: Collected data included questionnaires for users (n = 154) and professionals (n = 158), interviews with users (n = 14), and observations of health education activities (n = 37) and the professional development programme (n = 9). Data were analysed using descriptive statistics and systematic text condensation. RESULTS: Ninetysix percent (152) of professionals tested the model in practice and tried at least one tool. Users reported that the model supported them in expressing their thoughts about their health and focused on their needs rather than the agenda of the professional. Ninetythree percent (143) of users strongly agreed that professionals were open-minded and responsive. However, observations showed that some professionals overlooked cues from users about motivation for health behaviour change. Furthermore, professionals identified lack of involvement from their managers as a barrier to implementation. CONCLUSIONS: Implementation of a collaborative model was feasible in practice. Training of professionals in active listening and involvement of managers prior to implementation is crucial.

The role of theories in interventions targeting preteens with Type 1 diabetes: A critical literature review.

BACKGROUND: Theory-based interventions have been recommended to target relevant issues and improve outcomes in children and adolescents with Type 1 diabetes. Furthermore, the timing of interventions has been recognized as key to improving outcomes, suggesting a need to focus on preteens (9-12 years old) with Type 1 diabetes. The aim of the present study was to identify the theories that inform interventions targeting preteens with Type 1 diabetes and to analyse the studies for their understandings of theory. METHODS: We conducted a systematic literature review of intervention studies targeting preteens with Type 1 diabetes to identify the theoretical frameworks applied. Seven databases across different scientific disciplines were searched for papers published between 1995 and 2018. RESULTS: Twenty-four studies were included in the review. Of these, 14 were categorized as theory-inspired and 10 as theory-related studies. Social cognitive theory appeared most frequently. Most studies did not provide a rationale for their choice and application of theory to inform interventions. The studies were characterized by use of adult-centric theories and a focus on the relationships between children and their parents. CONCLUSIONS: The present review shows variations and limitations in the description and application of theories across interventions targeting preteens with Type 1 diabetes. This emphasizes the need for future studies to address for what reason and how a certain theory or method is applied. We suggest that interventions might benefit from using theories that are centred on the needs and experiences of children, target family dynamics that include all important family members, and address the mutually constitutive relationship between interventions and the social context in which they are implemented.

How to achieve a collaborative approach in health promotion: preferences and ideas of users of mental health services.

BACKGROUND: Collaborative approaches to consensus building or decision-making are beneficial in health-promoting activities targeting users of mental health services (users). However, little is known about how to achieve a collaborative approach in practice. AIM: The purpose of this study was to explore: (1) users' preferences and ideas related to achieving a collaborative approach in health-related communication and (2) perspectives of healthcare and social work professionals and family members on users' ideas and preferences. METHODS: Data were collected through interactive workshops with users (n = 15), professionals (n = 21) and users' family members (n = 12). Data were analysed using systematic text condensation. RESULTS: Users provided three recommendations for establishing a collaborative approach in communication about health: (1) involving users in deciding the agenda and setting for health-promoting activities; (2) exchanging knowledge between users and professionals about health and values; and (3) exploring users' motivation for change. Users and professionals had diverging perceptions of the value of establishing a collaborative approach. Professionals regarded relationship building and health promotion as separate phenomena, whereas users perceived relationship building as inherently health promoting. Family members of users requested specific guidance and support with regard to clarifying and fulfilling the best possible support role as a family member. CONCLUSIONS: The findings suggest that a collaborative approach in health promotion may be difficult to achieve without a focus on professional development for healthcare and social work professionals.

Demanding devices - Living with diabetes devices as a pre-teen.

Diabetes technology is an integral part of the lives of children with type 1 diabetes (T1D). However, children's experiences with these technologies are often overlooked. Furthermore, little is known about psychosocial aspects of technology use during children's transition to adolescence. The aim of this study was to explore how children with T1D perceive, make sense of and handle diabetes technologies in their everyday lives. Data were obtained from interviews with 18 children with T1D aged 10-14 years (pre-teens). The interviews were conducted between March and August 2019 in Denmark. Photos were used as probes to facilitate discussion and reflection about issues pre-teens found important. The study was informed by a technology-in-practice perspective to articulate how diabetes technologies were embedded in practices of use. The analysis focused on insulin pumps and technologies for continuous glucose monitoring (CGM). We found that these technologies introduced tensions regarding dependence and independence, wanted and unwanted attention, worries and peace of mind, treatment and care, visibility and invisibility as well as control and loss of control. We synthesized the tensions into the following three themes which characterized the pre-teens' relationship with diabetes technology: 1) demanding devices, 2) the social context of using diabetes technologies, and 3) care and support through data. Our findings indicate the need for researchers and clinicians to engage with the social and emotional dimensions of living with diabetes technologies. Importantly, this includes recognizing the norms underlying diabetes technologies and how these inform care in pre-teens with T1D.

Pre-empting the challenges faced in adolescence: A systematic literature review of effects of psychosocial interventions for preteens with type 1 diabetes.

INTRODUCTION: Numerous psychosocial interventions have been conducted in children and adolescents with type 1 diabetes, aiming to improve their self-management and autonomy acquisition. However, these tend to address family conflict and parental perspectives, and a scarce number of interventions explore the outcomes among preteens. This review examined the outcomes of psychosocial interventions for preteens with type 1 diabetes, as an under-researched field to date. METHODS: A systematic literature review of intervention studies with randomized controlled trial design, targeting preteens with type 1 diabetes, was conducted. Six databases were searched for publication periods from 1995 to October 2019. Quality of the interventions according to the International Society for Pediatric and Adolescent Diabetes (ISPAD), as well as reporting and effect sizes, were assessed. RESULTS: Twelve studies were selected, covering ten interventions. According to the topics identified, four of these interventions were categorized as self-care programmes, three as psychosocial programmes and three as mixed. All of the interventions, except for one, covered ≥50% of the ISPAD recommendations. Reporting adequacy was negative only in one intervention. Main outcomes were glycemic control and self-management, but effect sizes could only be calculated for half of the interventions with no overall significant effect. CONCLUSIONS: This review shows a lack of adequate psychosocial interventions targeting preteens with type 1 diabetes and actively involving them as participants. These intervention's educational programmes and methods should be standardized to guarantee successful results. New technologies and peer support implementation could be a promising pathway when designing these studies.

A dialogue-based approach to patient education.

In recent years, the need for person-centered patient education has become evident. To translate this approach into practice, new theoretically and empirically sound methods and models are required. This brief communication introduces a newly developed toolkit that has shown promise in facilitating person-centered education and active involvement of patients. Two health education models constituting the underlying basis for the toolkit are also presented.

Simplicity, flexibility, and respect: preferences related to patient education in hardly reached people with type 2 diabetes.

Individuals with lower income and less education are two to four times more likely to develop diabetes than more advantaged individuals. In response to this, there is a need for developing health promotion activities targeting hardly reached populations. The aim of this study was to examine the perspectives of hardly reached people with type 2 diabetes on patient education, focusing on their wishes and needs regarding format and approach. Data were collected through qualitative interviews with nine individuals with type 2 diabetes with little or no education and characterized as hardly reached patients by health professionals. Interviews were transcribed verbatim and analyzed according to systematic text condensation. We identified four main categories of preferences for patient education: 1) flexibility related to start time, duration, and intensity; 2) simple and concrete education tools, with regard to design and extent; 3) being together, related to meeting people in a similar situation; and 4) respectful educators, related to constructive patient-educator relationships. Insights into the preferences of hardly reached people with diabetes can contribute to the development of appropriately tailored patient education for this patient group.