Patient education for children with interstitial lung diseases and their caregivers: A pilot study

Niemitz, Mandy; Schrader, Miriam; Carlens, Julia; Hengst, Meike; Eismann, Claudia; Goldbeck, Lutz; Griese, Matthias; Schwerk, Nicolaus

doi:10.1016/j.pec.2019.01.016

Cited by 12 publications

(24 citation statements)

References 46 publications

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“…Research on the mental health of parents of children with chILD is limited,2 so the current study adds to our understanding of the potential psychosocial toll of chILD on parents. Parent-reported child’s HRQoL was also lower than what has been reported in previous literature 4 26. Parents in the current study may have been more likely to complete the psychosocial questionnaire if their child was particularly unwell.…”

Section: Discussioncontrasting

confidence: 62%

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life

et al. 2022

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ObjectiveResearch is needed to determine best practice for genomic testing in the context of child interstitial or diffuse lung disease (chILD). We explored parent’s and child’s health-related quality of life (HRQoL), parents’ perceived understanding of a genomic testing study, satisfaction with information and the study and decisional regret to undertake genomic testing.MethodsParents of children with diagnosed or suspected chILD who were enrolled in a genomic sequencing study were invited to complete questionnaires pretesting (T1) and after receiving the result (T2).ResultsParents’ (T1, n=19; T2, n=17) HRQoL was lower than population norms. Study satisfaction (T1) and perceived understanding (T2) were positively correlated (rs=0.68, p=0.014). Satisfaction with information (T1 and T2) and decisional regret (T2) were negatively correlated (T1 rs=−0.71, p=0.01; T2 rs=−0.56, p=0.03). Parents reported wanting more frequent communication with staff throughout the genomic sequencing study, and greater information about the confidentiality of test results.ConclusionsUnderstanding of genomic testing, satisfaction with information and participation and decisional regret are inter-related. Pretest consultations are important and can allow researchers to explain confidentiality of data and the variable turnaround times for receiving a test result. Staff can also update parents when there will be delays to receiving a result.

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Section: Discussioncontrasting

confidence: 62%

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life

et al. 2022

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“…Research focusing on rare disease often does not include carers yet given the unique role they have in the person’s care it seems crucial that their views are heard 24-27 . Our research emphasises challenges faced by carers supporting individuals with a rare disease and highlights areas where support is lacking.…”

Section: Discussionmentioning

confidence: 99%

Carer reported experiences: supporting someone with a rare disease

McMullan¹,

Crowe²,

Downes³

et al. 2020

Preprint

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Background The uniqueness and complexity of rare diseases, together with a perceived lack of understanding from health professionals, can make caring for someone with a rare disease extremely challenging. Carers are often forced to become expert patients alongside people they care for. Due to the demands placed upon carers it is essential that appropriate support is available for them to ensure they can continue to carry out this vital role. This exploratory study researched challenges carers face when looking after someone with a rare disease and identify how they could be better supported in this role. Methods To be eligible to participate, respondents had to be adults caring for someone with a rare disease. Mixed methods were used including an online survey (n=57 respondents) where carers highlighted a need for better support specific to their mental health needs, liaising with health and social care professionals, financial, communication, training and respite options. During a facilitated workshop (n=32 attendees) discussions focused on challenges carers face as well as priorities to better support carer needs in the future. Results While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub-optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support, and lack of awareness of existing support services. Conclusion It is important that strategies are put in place to ensure that carers take the time they need to care for themselves and raise awareness of available support options for carers of people with a rare disease(s) from health and social care providers, charities, or support groups.

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“…We further identified 127 records through grey literature searches, and after deduplication and removal of records published before 2019, we retrieved and assessed 59 full‐text reports for eligibility (Figure 1). A total of 63 reports were included in this review, representing 61 unique interventions 41–103 . Furthermore, we consulted additional publications, which were cited in the eligible reports, for additional details about 23 of the 61 included interventions during our data charting 104–132 …”

Section: Resultsmentioning

confidence: 99%

“…Communication and information provision 45 [41][42][43][44][45][49][50][51][52][53][54][56][57][58]60,61,63,64,66,67,[73][74][75][76][77][78]80,82,[84][85][86][87][88][89][90][91][92][93][94][96][97][98][99][100][101][102][103] In-person interactions with providers 27 [42][43][44][45][51]…”

Section: Approaches Number Of Interventions Implementation Examplesmentioning

confidence: 99%

Family‐centred care interventions for children with chronic conditions: A scoping review

Chow,

Saad,

Al‐Baldawi

et al. 2024

Health Expectations

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IntroductionChildren with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family‐centred care need information about the characteristics of existing interventions, their development and the domains of family‐centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family‐centred interventions designed to improve experiences with care for children with chronic conditions.MethodsWe searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7–20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family‐centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full‐text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family‐centred care.ResultsOur search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed‐methods studies (n = 9 each). The most frequently addressed domains of family‐centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30).ConclusionThis review, which identified 61 unique interventions aimed at improving family‐centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high‐needs population.Patient or Public ContributionThis study was co‐developed with three patient partner co‐investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co‐investigators contributed to this study at all stages, from conceptualization to dissemination.

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Patient education for children with interstitial lung diseases and their caregivers: A pilot study

Cited by 12 publications

References 46 publications

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life

Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life

Carer reported experiences: supporting someone with a rare disease

Family‐centred care interventions for children with chronic conditions: A scoping review

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