Mental health care needs in cystic fibrosis: A scoping review

Tickner, Campbell; Holland, Lucy; Wark, Peter; Hilton, Jodi; Morrison, Cathy; Kay‐Lambkin, Frances; Heinsch, Milena

doi:10.1080/00981389.2022.2060422

Cited by 4 publications

(3 citation statements)

References 32 publications

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“…However, in QCA models, it was observed that one of the predictor variables of high and low levels of anxious-depressive symptomatology was the adolescent's quality of life. This would be in line with findings from other studies (Graziano et al, 2020;Tickner et al, 2022). Quality of life was negatively associated with anxious symptomatology but not with depression.…”

Section: Discussionsupporting

confidence: 92%

“…Previous studies on CF indicate that symptoms of anxiety and depression are two to three times more frequent among CF patients than in the general population (O'Hayer et al, 2021). These symptoms are associated with decreased adherence to treatment, reduced lung function (Smith et al, 2016), poorer health-related quality of life and healthcare costs (Graziano et al, 2020;Tickner et al, 2022). However, despite significant recent medical progress affecting CF, there is a lack of research on the impact on mental health in patients with CF or PCD.…”

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confidence: 99%

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A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregivers: psychological aspects

Valero-Moreno,

Montoya-Castilla,

Pérez-Marín

2024

Ansiedad y Estrés

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This work aimed to conduct a comparative study between cystic fibrosis and primary ciliary dyskinesia among adolescents and their caregivers to understand their emotional adaptation to the disease. Thirty-nine dyads of adolescents aged 9-18 years and their primary caregivers were assessed, 69.20 % of whom had a diagnosis of cystic fibrosis. For the adolescents, anxious-depressive symptomatology was assessed using the HADS, perceived threat of disease (B-IPQ) and quality of life (CRQ-SAS). For the caregivers, emotional symptomatology (HADS) and perceived stress levels (PIP) were assessed. Mean comparisons were made according to diagnosis and severity of anxious-depressive symptomatology, relationships between variables were studied, and qualitative comparative analysis models, QCA, were performed. Higher levels of anxiety and depression were found in the caregiver than in the adolescent. Adolescents with primary ciliary dyskinesia have a more significant emotional impact than adolescents with cystic fibrosis. However, no differences were found in caregivers according to diagnosis. The adolescent's emotional state, quality of life and perceived threat of disease were related to and explained by the caregiver's emotional state, and vice versa. Therefore, there appears to be a certain degree of emotional contagion between the dyad members. This is a preliminary study that has not been carried out before and can help to understand the psychological aspects associated with these diseases to favour the patient's adjustment and thereby ensure more effective management of the disease and adherence to treatment. Estudio comparativo entre adolescentes con fibrosis quística y discinesia ciliar primaria y sus cuidadores: aspectos psicológicos R E S U M E NEl objetivo fue realizar un estudio comparativo entre la fibrosis quística y la discinesia ciliar primaria entre adolescentes y sus cuidadores para comprender su adaptación a la enfermedad. Evaluando 39 díadas de adolescentes de entre 9 y 18 años y sus cuidadores, el 69,20% de los cuales tenían un diagnóstico de fibrosis quística. Para los adolescentes, se evaluó la sintomatología ansioso-depresiva mediante el HADS, la amenaza percibida de la enfermedad (B-IPQ) y la calidad de vida (CRQ-SAS). Para los cuidadores, se evaluó la sintomatología emocional (HADS) y los niveles de estrés percibido (PIP). Se realizaron comparaciones de medias según el diagnóstico y la sintomatología ansioso-depresiva, se estudiaron las relaciones entre variables y se realizaron modelos de análisis cualitativo comparativo. Se encontraron mayores niveles ansioso-depresivos en el cuidador que en el adolescente. Los adolescentes con discinesia ciliar primaria presentan un impacto emocional mayor que los adolescentes con fibrosis quística. No se encontraron diferencias en los cuidadores según el diagnóstico. El estado emocional, la calidad de vida y la percepción de amenaza de la enfermedad del adolescente estaban relacionados con el estado emocional del cuidador y se explicaban por él, y viceversa.

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Section: Discussionsupporting

confidence: 92%

mentioning

confidence: 99%

A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregivers: psychological aspects

Valero-Moreno,

Montoya-Castilla,

Pérez-Marín

2024

Ansiedad y Estrés

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“…Most individuals with CF spend approximately 2–3 h per day on maintenance therapies to prevent lung infections, promote food absorption, and manage the multisystem issues that result from CF (Sawicki et al, 2009). Multiple studies have reported the experiences of individuals living with CF, exploring how intense therapy regimens, physical limitations, and disease progression limit quality of life, leading to increased mental distress, anxiety, and depression (Bathgate et al, 2022; Guta et al, 2021; Lord et al, 2023; Tickner et al, 2022). These psychosocial challenges diminish motivation to adhere to burdensome therapies, which can lead to worsening health outcomes (Havermans & Willem, 2019; Knudsen et al, 2016; Quittner et al, 2014; Sawicki et al, 2009; Smith et al, 2010; Trandel et al, 2019).…”

mentioning

confidence: 99%

Transcending Limitations: A Phenomenological Exploration of How Hygge Practices Enrich the Lived Experiences of Adults with Cystic Fibrosis

Pitts,

Woods,

Polen

et al. 2024

Creative Nursing

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Hygge practices embody joy, peace, mindfulness, coziness, and conviviality. Cystic fibrosis (CF) is a progressive condition with complex therapies and physical limitations. Little is known about how hygge practice may impact individuals living with CF. A qualitative study explored how adults with CF use hygge practices to promote wellness and cope with their disease. A purposive network sample of 15 adults with CF who utilized hygge practices completed semistructured audio-recorded telephone interviews. Recordings were transcribed and analyzed using Colaizzi's thematic analysis approach. Results reveal that hygge practices influenced individuals’ aesthetics, attitudes, and activities, deeply impacting the physical and emotional experience of living with CF. Incorporating hygge into CF care may improve psychological well-being and quality of life for members of this community.

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Genetic Counselors' attitudes & perceptions regarding suicide risk assessment and identification in practice

Hershman,

Fernandes,

Ceulemans

et al. 2024

Journal of Genetic Counseling

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While the heritability of suicidal tendencies is debated, receipt of various genetic diagnoses has shown an increased risk of suicidal ideation and behavior while simultaneously conferring risk to mental health concerns that may further increase this risk. However, the role of genetic counselors (GCs) in assessing and addressing suicide risk remains underutilized. A 15‐item recruitment survey was distributed via the National Society of Genetic Counselors Student Research Survey Listserv, and interested individuals could opt to be contacted for an interview after completion. The data analysis included 107 survey responses and 15 semi‐structured interviews, which were conducted to explore whether GCs feel that formal suicide risk assessment (SRA) falls within their scope of practice and the frequency with which it is employed during counseling sessions. Additionally, the study examined GCs' experiences, comfort levels, and training in assessing for suicide risk. All interviews were transcribed verbatim and independently coded by two researchers. The coding scheme was systematically constructed, integrating both deductive and inductive coding methods to inform the authors' interpretive description of SRA in the clinic, with four major themes identified by content analysis. Most respondents reported that they had worried about a patient harming themselves or having suicidal thoughts. Most respondents agreed or strongly agreed that SRA is within a GC's scope of practice. Lack of training emerged as the primary barrier to assessing suicide risk and conducting risk assessments. Other barriers included low self‐efficacy, societal stigma, and personal discomfort, while access to social workers, natural inclination, and standardized screening tools served as facilitators. Despite encountering patients at risk of self‐harm and suicide, most GCs do not utilize SRA tools. Furthermore, GCs expressed a strong desire for additional training to enhance their skills in identifying and managing at‐risk patients. A multifocal approach to suicide risk reduction and education is required.

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Mental health care needs in cystic fibrosis: A scoping review

Cited by 4 publications

References 32 publications

A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregivers: psychological aspects

A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregivers: psychological aspects

Transcending Limitations: A Phenomenological Exploration of How Hygge Practices Enrich the Lived Experiences of Adults with Cystic Fibrosis

Genetic Counselors' attitudes & perceptions regarding suicide risk assessment and identification in practice

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