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Article ; Online: It's more than just lubrication of the skin: parents' experiences of caring for a child with ichthyosis.

Daae, Elisabeth / Feragen, Kristin Billaud / Sitek, Jan C / von der Lippe, Charlotte

Health psychology and behavioral medicine

2022 Volume 10, Issue 1, Page(s) 335–356

Abstract: ... ...

Abstract	Background
Language	English
Publishing date	2022-04-05
Publishing country	England
Document type	Journal Article
ZDB-ID	2720684-1
ISSN	2164-2850 ; 2164-2850
ISSN (online)	2164-2850
ISSN	2164-2850
DOI	10.1080/21642850.2022.2053685
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Self-reported symptoms of everyday executive dysfunction, daytime sleepiness, and fatigue and health status among adults with congenital aniridia: a descriptive study.

Sigurdardottir, Solrun / von der Lippe, Charlotte / Media, Line / Ullmann Miller, Jeanette / Landsend, Erlend Christoffer Sommer

Health psychology and behavioral medicine

2023 Volume 11, Issue 1, Page(s) 2263534

Abstract: Background: Congenital aniridia is a rare genetic disorder of the eye characterized by visual impairment and progressive vision loss. While prior research has focused on ocular manifestations in individuals with aniridia, there is a dearth of research ... ...

Abstract	Background: Congenital aniridia is a rare genetic disorder of the eye characterized by visual impairment and progressive vision loss. While prior research has focused on ocular manifestations in individuals with aniridia, there is a dearth of research on impacts on cognition and mental health. The aims of this study were to describe subjective symptoms of everyday executive functioning, fatigue and sleepiness in adults with aniridia and to compare self-reported health status with that of a normative reference group. Methods: Twenty-nine adults (aged 18-79 years) with congenital aniridia were included in this online survey, of whom 52% were females. Participants completed self-report measures of executive functioning (The Behavior Rating Inventory of Executive Function-Adult Version), sleepiness, fatigue, and health status (EQ-5D-5L). Results: Participants reported relatively few problems in everyday executive functioning, with only 14% experiencing impaired executive functioning. Scores on the five EQ-5D-5L domains (mobility, self-care, usual activities, pain, and anxiety/depression) did not differ from those of the normative reference group. The frequencies of excessive daytime sleepiness and severe fatigue were 17% and 38%, respectively. Ocular pain was experienced by 62% of participants. Conclusions: The findings show that cognitive problems are related to and reflect self-reported health status and extent of fatigue. Moreover, those who suffered from ocular pain reported more difficulties with executive functioning, sleepiness and fatigue. These findings are important for understanding this disorder and supporting patients.
Language	English
Publishing date	2023-10-03
Publishing country	England
Document type	Journal Article
ZDB-ID	2720684-1
ISSN	2164-2850 ; 2164-2850
ISSN (online)	2164-2850
ISSN	2164-2850
DOI	10.1080/21642850.2023.2263534
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Article ; Online: Children with a rare congenital genetic disorder: a systematic review of parent experiences.

von der Lippe, Charlotte / Neteland, Ingrid / Feragen, Kristin Billaud

Orphanet journal of rare diseases

2022 Volume 17, Issue 1, Page(s) 375

Abstract: Background: Caring for a child with a chronic disease may be demanding and stressful. When a child has a rare condition, the impact of care on parents is amplified due to the rarity of the diagnosis. In order to address the lack of generalized and ... ...

Abstract	Background: Caring for a child with a chronic disease may be demanding and stressful. When a child has a rare condition, the impact of care on parents is amplified due to the rarity of the diagnosis. In order to address the lack of generalized and synthesized knowledge regarding parents' experiences of having a child with a rare genetic disorder, and give a holistic picture of these experiences, a systematic review of the available qualitative research was conducted. Methods: We performed a systematic review, including qualitative studies on parents of children with rare genetic disorders, published between 2000 and 2020. Results: The review included 33 qualitative studies. Findings were synthesized and categorized according to three main themes: Parents' experiences with health care, Responsibilities and challenges, and Factors promoting positive experiences in parents. The findings demonstrate that parents of children with rare genetic disorders share many common challenges, despite evident differences across conditions. Conclusion: Coordinated care, and a more holistic approach in the follow up of children with rare genetic disorders is needed. International collaboration on research, diagnostics, producing scientific correct and understandable information available for health care professionals and lay people should be prioritized.
MeSH term(s)	Child ; Chronic Disease ; Family ; Humans ; Parents ; Qualitative Research ; Rare Diseases/genetics
Language	English
Publishing date	2022-10-17
Publishing country	England
Document type	Journal Article ; Review ; Systematic Review
ZDB-ID	2225857-7
ISSN	1750-1172 ; 1750-1172
ISSN (online)	1750-1172
ISSN	1750-1172
DOI	10.1186/s13023-022-02525-0
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Article ; Online: Relationship between physical and psychological functioning and health-related quality of life in congenital Aniridia.

Landsend, Erlend Christoffer Sommer / von der Lippe, Charlotte / Mediå, Line / Miller, Jeanette Ullmann / Berge, Knut Erik / Sigurdardottir, Solrun

Acta ophthalmologica

2023

Abstract: Purpose: Congenital aniridia is a serious eye disease characterized by absence of iris to various degrees. The aims of this study were to investigate health-related quality of life (HRQoL) in adults with aniridia and assess the relationships between ... ...

Abstract	Purpose: Congenital aniridia is a serious eye disease characterized by absence of iris to various degrees. The aims of this study were to investigate health-related quality of life (HRQoL) in adults with aniridia and assess the relationships between HRQoL, psychological status, ocular health and obesity. Methods: Twenty-nine adults with congenital aniridia (48% male, aged 18-79 years) participated. HRQoL was measured with SF-36 and the EQ visual analogue scale (VAS). The physical (PCS) and mental (MCS) component summaries of the SF-36 were calculated with higher scores indicating better HRQoL. Symptoms of anxiety and depression were measured using the Hospital Anxiety and Depression Scale (HADS). Obesity was assessed with the Patient-Reported Outcomes in Obesity (PROS). Sociodemographic characteristics, genetic variants and ocular and medical health variables were also analysed. Results: The participants scored significantly lower in the general health domain of the SF-36 than the general population (65.2 vs. 75.3, p = 0.017). The EQ VAS score was also lower in the aniridia group (64.9 vs. 77.9, p = 0.021). Low PCS score was correlated with presence of ocular pain (p = 0.019), high HADS score (p = 0.017) and high PROS score (p = 0.009). Low MCS score was related to higher educational level (p = 0.038) and high HADS score (p < 0.001). High HADS and PROS scores were both related to low EQ VAS scores. Conclusion: Adults with congenital aniridia scored worse on certain measures of HRQoL than the general population. Poorer HRQoL was associated with increased symptoms of anxiety, depression and obesity and with presence of ocular pain.
Language	English
Publishing date	2023-12-22
Publishing country	England
Document type	Journal Article
ZDB-ID	2408333-1
ISSN	1755-3768 ; 1755-375X
ISSN (online)	1755-3768
ISSN	1755-375X
DOI	10.1111/aos.16615
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Article ; Online: Caring for a child with Bardet-Biedl syndrome: A qualitative study of the parental experiences of daily coping and support.

Zelihić, Deniz / Hjardemaal, Finn R / Lippe, Charlotte von der

European journal of medical genetics

2020 Volume 63, Issue 4, Page(s) 103856

Abstract: This study aimed to explore the parental experiences of having a child with Bardet-Biedl syndrome (BBS) and how parents managed to cope with this situation. Five parents of children with BBS (0-18 years old) participated in semistructured in-depth ... ...

Abstract	This study aimed to explore the parental experiences of having a child with Bardet-Biedl syndrome (BBS) and how parents managed to cope with this situation. Five parents of children with BBS (0-18 years old) participated in semistructured in-depth interviews. Inductive thematic analysis was used to identify themes. The parents experienced distress due to a lack of knowledge on BBS in their support system (e.g., school staff, clinicians, and family members), and they found it stressful to coordinate with multiple support services. Socialization at work, support from family members, and communicating with other parents who are in a similar situation promoted better coping and adaptations to daily life. Results highlight the importance of parents receiving adequate support while they face daily challenges. An increased knowledge on how rare disorders impact family life is needed in the support system.
MeSH term(s)	Adaptation, Psychological ; Adolescent ; Bardet-Biedl Syndrome ; Child ; Child, Preschool ; Humans ; Infant ; Infant, Newborn ; Parents/psychology ; Qualitative Research ; Social Support
Language	English
Publishing date	2020-01-20
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	2184135-4
ISSN	1878-0849 ; 1769-7212
ISSN (online)	1878-0849
ISSN	1769-7212
DOI	10.1016/j.ejmg.2020.103856
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Article ; Online: Gene panel testing.

Sørensen, Ida W / Prescott, Trine / F Rustad, Cecilie / Blinkenberg, Ellen Ø / Lippe, Charlotte von der

Tidsskrift for den Norske laegeforening : tidsskrift for praktisk medicin, ny raekke

2020 Volume 140, Issue 3

Title translation	Genpaneltesting.
MeSH term(s)	Genetic Predisposition to Disease ; Genetic Testing ; High-Throughput Nucleotide Sequencing ; Humans
Language	Norwegian
Publishing date	2020-02-10
Publishing country	Norway
Document type	Journal Article
ZDB-ID	603504-8
ISSN	0807-7096 ; 0029-2001
ISSN (online)	0807-7096
ISSN	0029-2001
DOI	10.4045/tidsskr.19.0535
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Article ; Online: It’s more than just lubrication of the skin

Elisabeth Daae / Kristin Billaud Feragen / Jan C. Sitek / Charlotte von der Lippe

Health Psychology and Behavioral Medicine, Vol 10, Iss 1, Pp 335-

parents’ experiences of caring for a child with ichthyosis

2022 Volume 356

Abstract: Background: The ichthyoses are a group of genetic skin disorders, characterized by excessive amounts of dry, thickened skin, which may be fragile, inelastic and prone to fissures and infection. Skin care is time consuming and demanding, and, usually ... ...

Abstract	Background: The ichthyoses are a group of genetic skin disorders, characterized by excessive amounts of dry, thickened skin, which may be fragile, inelastic and prone to fissures and infection. Skin care is time consuming and demanding, and, usually performed by the parents.Methods: We aimed to explore parental experience of caring for a child with ichthyosis, and collected data using semistructured interview, and thematic analysis.Results: Our analysis revealed four main themes: Parents' and others' reactions to the child's difference, Experiences with healthcare services, It's all skin care, and Impact on relationships.Conclusion: After birth of a child with severe ichthyosis, the parents experienced emotional distress and stigmatization due to the different appearance of the skin and healthcare professionals' lack of knowledge. Skin care caused pain in the child, was time consuming, and caused financial burdens. This study can guide healthcare professionals on where to focus future efforts in meeting the clinical and psychological needs of parents caring for a child with ichthyosis.
Keywords	Ichthyosis ; skin disorder ; parents ; qualitative ; rare disease ; Medicine ; R ; Psychology ; BF1-990
Language	English
Publishing date	2022-12-01T00:00:00Z
Publisher	Taylor & Francis Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Self-reported symptoms of everyday executive dysfunction, daytime sleepiness, and fatigue and health status among adults with congenital aniridia

Solrun Sigurdardottir / Charlotte von der Lippe / Line Media / Jeanette Ullmann Miller / Erlend Christoffer Sommer Landsend

Health Psychology and Behavioral Medicine, Vol 11, Iss

a descriptive study

2023 Volume 1

Abstract: ABSTRACTBackground Congenital aniridia is a rare genetic disorder of the eye characterized by visual impairment and progressive vision loss. While prior research has focused on ocular manifestations in individuals with aniridia, there is a dearth of ... ...

Abstract	ABSTRACTBackground Congenital aniridia is a rare genetic disorder of the eye characterized by visual impairment and progressive vision loss. While prior research has focused on ocular manifestations in individuals with aniridia, there is a dearth of research on impacts on cognition and mental health. The aims of this study were to describe subjective symptoms of everyday executive functioning, fatigue and sleepiness in adults with aniridia and to compare self-reported health status with that of a normative reference group.Methods Twenty-nine adults (aged 18–79 years) with congenital aniridia were included in this online survey, of whom 52% were females. Participants completed self-report measures of executive functioning (The Behavior Rating Inventory of Executive Function–Adult Version), sleepiness, fatigue, and health status (EQ-5D-5L).Results Participants reported relatively few problems in everyday executive functioning, with only 14% experiencing impaired executive functioning. Scores on the five EQ-5D-5L domains (mobility, self-care, usual activities, pain, and anxiety/depression) did not differ from those of the normative reference group. The frequencies of excessive daytime sleepiness and severe fatigue were 17% and 38%, respectively. Ocular pain was experienced by 62% of participants.Conclusions The findings show that cognitive problems are related to and reflect self-reported health status and extent of fatigue. Moreover, those who suffered from ocular pain reported more difficulties with executive functioning, sleepiness and fatigue. These findings are important for understanding this disorder and supporting patients.
Keywords	Rare disorder ; ocular pain ; PAX6 ; cognition ; sleep ; quality of life ; Medicine ; R ; Psychology ; BF1-990
Subject code	150
Language	English
Publishing date	2023-12-01T00:00:00Z
Publisher	Taylor & Francis Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Social inequality, social networks, and health: a scoping review of research on health inequalities from a social network perspective.

Keim-Klärner, Sylvia / Adebahr, Philip / Brandt, Stefan / Gamper, Markus / Klärner, Andreas / Knabe, André / Kupfer, Annett / Müller, Britta / Reis, Olaf / Vonneilich, Nico / Ganser, Maxi A / de Bruyn, Charlotte / von der Lippe, Holger

International journal for equity in health

2023 Volume 22, Issue 1, Page(s) 74

Abstract: Background: This review summarises the present state of research on health inequalities using a social network perspective, and it explores the available studies examining the interrelations of social inequality, social networks, and health.: Methods!# ...

Abstract	Background: This review summarises the present state of research on health inequalities using a social network perspective, and it explores the available studies examining the interrelations of social inequality, social networks, and health. Methods: Using the strategy of a scoping review, as outlined by Arksey and O'Malley (Int J Sci Res Methodol 8:19-32, 2005), our team performed two searches across eight scientific, bibliographic databases including papers published until October 2021. Studies meeting pre-defined eligibility criteria were selected. The data were charted in a table, and then collated, summarised, and reported in this paper. Results: Our search provided a total of 15,237 initial hits. After deduplication (n = 6,168 studies) and the removal of hits that did not meet our baseline criteria (n = 8,767 studies), the remaining 302 full text articles were examined. This resulted in 25 articles being included in the present review, many of which focused on moderating or mediating network effects. Such effects were found in the majority of these studies, but not in all. Social networks were found to buffer the harsher effects of poverty on health, while specific network characteristics were shown to intensify or attenuate the health effects of social inequalities. Conclusions: Our review showed that the variables used for measuring health and social networks differed considerably across the selected studies. Thus, our attempt to establish a consensus of opinion across the included studies was not successful. Nevertheless, the usefulness of social network analysis in researching health inequalities and the employment of health-promoting interventions focusing on social relations was generally acknowledged in the studies. We close by suggesting ways to advance the research methodology, and argue for a greater orientation on theoretical models. We also call for the increased use of structural measures; the inclusion of measures on negative ties and interactions; and the use of more complex study designs, such as mixed-methods and longitudinal studies.
MeSH term(s)	Humans ; Socioeconomic Factors ; Poverty ; Social Networking
Language	English
Publishing date	2023-04-25
Publishing country	England
Document type	Journal Article ; Review ; Research Support, Non-U.S. Gov't
ZDB-ID	2092056-8
ISSN	1475-9276 ; 1475-9276
ISSN (online)	1475-9276
ISSN	1475-9276
DOI	10.1186/s12939-023-01876-9
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Article: Primary Immunodeficiency Diseases and Gastrointestinal Distress: Coping Strategies and Dietary Experiences to Relieve Symptoms.

Brede, Katrine K / Wandel, Margareta / Wiig, Ingrid / von der Lippe, Charlotte

Qualitative health research

2020 Volume 31, Issue 2, Page(s) 361–372

Abstract: In this article, we focus on adults with primary immunodeficiency disease (PID) and their experiences with gastrointestinal (GI) distress with the aim of exploring how they experience living with their condition and the actions they take to relieve GI ... ...

Abstract	In this article, we focus on adults with primary immunodeficiency disease (PID) and their experiences with gastrointestinal (GI) distress with the aim of exploring how they experience living with their condition and the actions they take to relieve GI distress. Twelve adults with PID and GI distress participated in semi-structured, in-depth interviews. The interviews were analyzed following the steps of thematic analysis (TA). The study revealed the complexity of the psychosocial aspects of living with PID and GI distress. Participants experienced GI distress to be highly challenging in daily life and felt they had to cope with the condition alone, without adequate help from the health care service. Participants used a wide and diverse range of coping strategies, and the search for normalcy was evident. Health care professionals should be more proactive in supporting individuals with PID in their struggle to find solutions to problems arising from GI distress.
MeSH term(s)	Adaptation, Psychological ; Adult ; Diet ; Humans ; Primary Immunodeficiency Diseases ; Qualitative Research
Language	English
Publishing date	2020-11-04
Publishing country	United States
Document type	Journal Article
ZDB-ID	1275716-0
ISSN	1552-7557 ; 1049-7323
ISSN (online)	1552-7557
ISSN	1049-7323
DOI	10.1177/1049732320967908
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