10Vida: A Mental and Physical Health Intervention for Chronically Ill Adolescents and Their Caregivers in the Hospital Setting: An Open Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Setting
2.2. Patient and Public Involvement
2.3. Interventions
2.4. Outcomes
- Emotional adjustment: Hospital Anxiety and Depression Scale (HADS): For the study of anxiety, depression, and global emotional distress [59] (scale validated for the Spanish adolescent population) [60]. In terms of psychometric properties, the reliability scores in the study with adolescents were 0.80;
- Emotional competence: Emotional Skills and Competence Questionnaire (ESCQ-21): This is a self-report measure developed by Takšić [61] to assess emotional competence. In the present study, the reduced version (ESCQ-21) was used, which was adapted and validated to a Spanish sample by Schoeps et al. [62]. Psychometric properties are adequate (perception and comprehension, α = 0.82; expressing and labelling, α =0.90; and management and regulation, α = 0.77);
- Emotional adjustment: Hospital Anxiety and Depression Scale (HADS): for the study of anxiety, depression, and global emotional distress [59]. Regarding the scale’s internal consistency, a validation study in a Spanish adult population found that values for the anxiety scale ranged between 0.68 and 0.93, and for the depression scale, between 0.67 and 0.90;
- Burden or stress: The Paediatric Inventory for Parents (PIP) [6] to assess levels of caregiving-related stress [6,67]. It aims to assess parents’ stress with children requiring regular medical care. It consists of 12 situations related to the hospital environment that are considered potentially stressful for parents with ill children. Optimal reliability coefficients were obtained, with 0.78 for the total frequency scale and 0.81 for the total stress scale [6].
- Adaptation to chronic disease: The Chronic Respiratory Disease Questionnaire (CRQ-SAS) [68] assesses aspects related to the adaptation to the disease (scale validated for the Spanish adolescent population by Valero et al. [69]). The psychometric properties are adequate (α = 0.85). The questionnaire on the adaptation to type 1 diabetes (RAE) [70] assesses aspects related to the adaptation to the disease, such as severity, adherence, psychological impact, discomfort, and health behaviours. Psychometric properties are adequate (α = 0.77). Finally, the Adolescent Rhinoconjunctivitis Quality of Life Questionnaire (AdolRQLQ) [71] is a quality of life assessment instrument specifically designed for the paediatric population with rhinoconjunctivitis. This questionnaire shows adequate psychometric properties (α = 0.77);
- Parenting style of parents: The Scale for the Evaluation of the Educational Style of Parents of Adolescents (EP) [72] allows for the assessment of the perception that adolescents have of their parents’ educational style;
- Glycaemic control: Glycosylated haemoglobin (HbA1c) will be used to assess the glycemic control of the diabetic patient;
- Somatometry to assess nutritional status: Weight, height, body mass index (BMI), the brachial perimeter, and the tricipital fold will be used, with the calculation of percentiles and the z-score. To assess nutritional status, weight-for-height percentiles, BMI, or z-scores will be used. The aim is to maintain weight-for-height or BMI at the 50th percentile, as well as height/age (which is the best sign for disease control);
- Spirometry values: This will be used to determine pulmonary function. Spirometry is a test that studies pulmonary functions under controlled circumstances, as well as the absolute magnitude of lung volumes, and the speed with which the patient can mobilise them. The main spirometric parameters recorded are forced vital capacity (FVC), vital capacity (VC), peak expired air volume in the first second (FEV1), and peak expiratory flow (PEF);
- Analytical controls: This will be used (a) for monitoring nutritional status (protein, lipids, fat-soluble vitamins, iron and calcium-phosphorus metabolism) and Quick’s index; (b) for monitoring exocrine pancreatic function (faecal elastase and steatorrhoea); (c) for monitoring glucose metabolism; (d) for monitoring acute phase reactants and the immune status (immunoglobulins and alpha1 antitrypsin; and (e) for monitoring hepatic and renal functions;
- Control images: Using computerised axial tomography (CAT) or X-rays, the aim was to control the evolution of the disease through the appearance of bronchiectasis (small scars in the lung) or other types of pulmonary affections.
- Others (according to age): a) Plestimography values, whichdetect static lung volume, and b) bone densitometry, when there are risk factors for skeletal demineralisation.
- Family functioning: The Family Cohesion and Adaptation Scale (CAF-R) (FACES) [77]) will be used. It was developed to construct a measuring instrument to evaluate the variables that make up the dynamics of a family, based on Olson’s Circumplex Model. The scale consists of two dimensions: cohesion, understood as “the emotional bond that exists between family members” and family adaptability, that is, “the family’s capacity to change and adapt to change”.
2.5. Participants’ Timeline
2.6. Sample Size
2.7. Recruitment
2.8. Methods: Data Collection, Management, and Analysis
Statistical Methods
2.9. Ethics and Dissemination
3. Discussion
4. Conclusions
5. Patents
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Enrolment | Allocation | ||||
---|---|---|---|---|---|
TIMEPOINT ** | T1 (Own control group) | 0 | Pre test (t2) | Intervention | Post test (t3) |
ENROLMENT | |||||
Eligibility screen | X | ||||
Informed consent | X | ||||
Allocation | Not applicable | ||||
INTERVENTIONS | |||||
“10Vida” intervention (experimental group) | X | X | X | ||
ASSESSMENTS | |||||
Primary outcomes of patients | |||||
Sociodemographic data | X | ||||
Emotional adjustment | X | X | X | ||
Emotional competencies | X | X | X | ||
Perceived illness threat | X | X | X | ||
Self-esteem | X | X | X | ||
Secondary variables of patients | |||||
Adaptation to chronic disease | X | X | X | ||
Parental parenting style | X | X | X | ||
Psychological well-being | X | X | X | ||
Physical or clinical measure (i.e., Hba1c) | X | X | X | ||
Satisfaction with programme | X | ||||
ASSESSMENTS | |||||
Primary outcomes of caregivers | |||||
Sociodemographic data | X | X | X | ||
Emotional adjustment | X | X | X | ||
Burden or stress | X | X | X | ||
Secondary outcomes of caregivers | |||||
Resilience | X | X | X | ||
Family functioning | X | X | X | ||
Satisfaction with programme | X | X | X |
10VIDA PROGRAM | ||
---|---|---|
Sessions with Patients (5) | ||
Name of Session | Theme | Aims |
S1. Mis creencias | Adjustment to illness | Assess, recognise, and value beliefs, concerns, or fears related to the disease |
S2. Una mirada a mi interior | Self-esteem/self-concept | To develop behavioural patterns that facilitate an adequate self-image and identity, without the stigmas of illness |
S3. Desde la serenidad | Coping with fear | To learn to identify, attend to, and manage the anxious symptomatology associated with the life situations that a chronic disease in adolescence may entail. To favour a serene and positive attitude, knowing their own fears |
S4. Las emociones: Mis amigas | Emotional self-regulation | Encourage a coping and resilient attitude to facilitate the acquisition of appropriate habits and behaviours. To promote positive emotions that can cushion the daily situations with the disease |
S5. Una mirada al exterior | Social area | To reflect on the importance of friendships at this age, and that they are sources of support in the face of illness and treatment |
S6. Me cuidas, te cuidas | Caregiver needs | Know and address the psychological and emotional needs of primary caregivers by providing them with strategies. Intervene in the beliefs and concerns regarding the disease, their child, themselves, or the family |
S7. Unidos, sumamos | The family system | Emphasise the role of parents in coping with their child’s illness, reducing stress, and encouraging acceptance. Encourage a democratic parenting style |
Session | Theme/Variable | Activity | Activity Objectives |
---|---|---|---|
S1. Mis creencias | Adjustment to illness | A1.1. Well_lived chronic disease | Provide the adolescent a leading role and create a safe space for them to express themselves and grow emotionally Recognise the main concerns that generate fear and the place of their illness within them Express and recognise feelings, beliefs, and thoughts about their illness |
A1.2. Deal | To provide tools for decision making in their life beyond the disease Respond to their emotions and thoughts to guide them towards achieving their goals and coping with their fears | ||
S2. Una mirada a mi interior | Self-esteem/self-concept | A2.1. I am and not my disease | Work on the importance of self-reflection Encourage learning to look at and discover oneself with serenity and affection Define self-esteem and self-concept Reflect on the role of the disease in one’s self-image |
A.2.2. Because I’m worth it | Self-awareness and self-discovery: strengths, weaknesses, and needs | ||
A2.3. I spoke nicely | Reflect on the importance of words and their effect on thoughts and action Work on positive language and the effect of negative thoughts | ||
S3. Desde la serenidad | Coping with fear | A.3.1. I listen to my signs | Through an explanation supported by drawings, learn the difference between fear and anxiety Understand how fear/anxiety works Learn how to detect and identify signs of fear/anxiety in your body |
A.3.2. My monster and I | Give name, form, “life” to the “monster” to have more control and stop fearing it Training of self-regulation resources | ||
A.3.3. The eye outwards | Explain the mindfulness-based technique: mindfulness in everyday life Learn to discover and be amazed by their surroundings and what they may not have noticed | ||
S4. Las emociones: Mis amigas | Emotional self-regulation | A.4.1. Emotions, my Friends | Define the concept of emotions, their functions, and their meanings To facilitate personal emotional identification and expression To train in emotional skills |
A.4.2. Emociometer | Continue working with emotions and their functions Increase emotional vocabulary Training in emotional skills | ||
A.4.3 D&D | Discover effective strategies for expressing emotions | ||
S5. Una mirada al exterior | Social area | A.5.1. I’m not alone. | Understanding the influence of others in our lives To observe how the disease has affected relationships and social situations |
A.5.2. Social superhero | Demonstrate the main social skills for their stage of development and describe the skills with them Social skills training | ||
A.5.3. Colour glasses | Learning to perceive the world through a more positive language | ||
S6. Me cuidas, te cuidas | Caregiver needs | A.6.1. It is in my | Ask parents about the influence of their children’s disease on their own lives Provide a space and a place for them to express their fears, worries, frustrations, etc. |
A.6.2. Welcome adolescence | Provide a perspective of adolescence as both a challenge and an opportunity rather than a risk Explore the changes in the adolescent developmental process | ||
A.6.3. Because I also exist | Working on the importance of self-care | ||
S7. Unidos, sumamos | The family system | A.7.1. Yes to love | Reminding parents of the importance of the bond of attachment with their children To give specific hints on how to show affection at this age and according to their individual needs |
A.7.2. I control | Explain to parents the need to control their children at the adolescent stage Working on learning styles | ||
A.7.3. Living without whatsapp | Provide information on the quality and quantity of communication with an adolescent Provide keys to more positive communication, favouring warmth and minimising conflicts |
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Rodríguez-Rubio, P.; Lacomba-Trejo, L.; Valero-Moreno, S.; Montoya-Castilla, I.; Pérez-Marín, M. 10Vida: A Mental and Physical Health Intervention for Chronically Ill Adolescents and Their Caregivers in the Hospital Setting: An Open Study. Int. J. Environ. Res. Public Health 2022, 19, 3162. https://doi.org/10.3390/ijerph19063162
Rodríguez-Rubio P, Lacomba-Trejo L, Valero-Moreno S, Montoya-Castilla I, Pérez-Marín M. 10Vida: A Mental and Physical Health Intervention for Chronically Ill Adolescents and Their Caregivers in the Hospital Setting: An Open Study. International Journal of Environmental Research and Public Health. 2022; 19(6):3162. https://doi.org/10.3390/ijerph19063162
Chicago/Turabian StyleRodríguez-Rubio, Pilar, Laura Lacomba-Trejo, Selene Valero-Moreno, Inmaculada Montoya-Castilla, and Marián Pérez-Marín. 2022. "10Vida: A Mental and Physical Health Intervention for Chronically Ill Adolescents and Their Caregivers in the Hospital Setting: An Open Study" International Journal of Environmental Research and Public Health 19, no. 6: 3162. https://doi.org/10.3390/ijerph19063162