36 research outputs found
318 Prediction of lung function by psychological symptoms and life satisfaction in patients with cystic fibrosis
a pilot study
Background Parents caring for a child with Cystic Fibrosis (CF) are at high
risk for psychological distress and have limited access to psychological care.
Therefore, a web-based psychological support program for severely distressed
parents of children with CF (WEP-CARE) was developed and evaluated for its
feasibility and efficacy. Methods A clinical expert panel developed WEP-CARE
based on principles of cognitive-behavioral therapy. This web-based writing
therapy comprises nine sessions, tailored for the specific needs of
caregivers. The pilot study was conducted as a single-group intervention with
pre-post-follow-up design. Out of 31 participants, 23 parents completed the
intervention (21 female; mean age 37 years; SD = 6.2 years, range 25 – 48
years). Psychological symptoms and quality of life were assessed online by
self-report measures at pre- and post-treatment and were followed up three
months later. Results On average, the caregivers’ symptoms of anxiety
decreased statistically significant and clinical relevant about five points
from an elevated (M = 11.4; SD =2.6) to a normal level (M = 6.7; SD = 2.6; p <
.001) between pre and post treatment. Fear of disease progression (p < .001)
and symptoms of depression (p = .02) significantly decreased as well. Quality
of life significantly improved (p = .01). The effects were maintained at the
3-months follow-up assessment. Conclusions WEP-CARE is feasible and promising
regarding its efficacy to improve parental mental health and quality of life
A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study
Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery
Background: Psychological morbidity in individuals with cystic fibrosis (CF) and their caregivers is common. The Cystic Fibrosis Foundation (CFF) and European Cystic Fibrosis Society (ECFS) Guidelines Committee on Mental Health sought the views of CF health care professionals concerning mental health care delivery.
Methods: An online survey which focused on the current provision and barriers to mental health care was distributed to CF health care professionals.
Results: Of the 1454 respondents, many did not have a colleague trained in mental health issues and 20% had no one on their team whose primary role was focused on assessing or treating these issues. Insufficient resources and a lack of competency were reported in relation to mental health referrals. Seventy-three percent of respondents had no experience with mental health screening. Of those who did, they utilized 48 different, validated scales.
Conclusions: These data have informed the decision-making, dissemination and implementation strategies of the Mental Health Guidelines Committee sponsored by the CFF and ECFS
Internet-based information and self-help program for parents of children with burns: Study protocol for a randomized controlled trial
Background: A burn is one of the most traumatic and painful injuries a child can experience and it is also a very stressful experience for the parents. Given the great psychological distress and perceived lack of multi-professional support experienced by the parents, there is a need for support during in-hospital treatment as well as during recovery. The aim of the study is to develop and evaluate an internet-based information and self-help program for parents of children who have been hospitalized for burn injury. The program aims to decrease parents' symptoms of stress.
Methods: Participants will consist of parents of children treated for burns between 2009 and 2013 at either of the two specialized Swedish Burn centers. The study is a two-armed randomized controlled trial with a six-week intervention group and an inactive control group, with a pre- and post-assessment, as well as a 3- and 12-month follow-up. The main outcome is stress (post-traumatic stress, general perceived stress and parental stress). The data will be analyzed with the intention-to-treat principle. The intervention is based on Cognitive-Behavior Therapy (CBT) and is inspired by Acceptance and Commitment Therapy (ACT). It is psycho-educational and provides basic skills training in communication and stress management.
Conclusion: We believe that this program will offer parents of children with burns information and support, decrease symptoms of stress, and that parents will perceive the program as useful. If the program is found to be beneficial, it could be implemented in burn care as it is accessible and cost-effective
Family planning decisions for parents of children with a rare genetic condition: a scoping review
Expansion of newborn screening programmes increases the complexity around reproductive choices, both in terms of
the increased number of parents faced with making reproductive decisions from the earliest days of their affected
child's life, and the number of conditions for which such decisions have to be made. We conducted a scoping review to
explore: (i) reproductive decision-making among parents of children with recessive genetic conditions; and, (ii) the
involvement of healthcare services in facilitating and supporting those decisions. Systematic search processes
involved seven bibliographic databases, citation, and grey literature searches. From an initial total of 311 identified
articles, seven met the inclusion criteria and were included in the review. The extracted data were organised around
three themes: factors influencing reproductive decisions taken by parents, how those factors changed over time, and
the involvement of healthcare services in supporting and facilitating reproductive decisions. Most studies focused on
attitudes towards, and uptake of, pre-natal diagnosis (PND) and termination. None of the studies considered the wider
range of reproductive choices facing all parents, including those of children with conditions for whom PND and
termination is not available or where good health outcomes make these options less justifiable. The literature provided
little insight into the role of healthcare staff in providing family planning support for these parents. There is a need to
better understand the support parents need in their decision-making, and who is best placed to provide that support
Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries
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eHealth interventions for family carers of people with long term illness: A promising approach?
Family carers of people who have long term illness often experience physical and mental health morbidities, and burden. While there is good evidence to suggest that carers benefit from psychosocial interventions, these have
primarily been delivered via face-to-face individual or group-formats. eHealth interventions offer a novel, accessible and self-paced approach to care delivery. Whether these are effective for carers' wellbeing has been little
explored. This paper reports the first comprehensive systematic review in this area. A total of 78 studies, describing 62 discrete interventions, were identified. Interventions commonly aimed to promote carers' knowledge,
self-efficacy, caregiving appraisal, and reduce global health morbidities. Interventions were offered to carers of
people with a wide range of long term illness; dementia has been the most researched area, as reported in 40% of
studies. Clinical and methodological heterogeneity in interventions precluded meta-analyses, and so data were
analysed narratively. The most popular approach has comprised psychoeducational interventions delivered via
an enriched online environment with supplementary modes of communication, such as network support with professionals and peers. Overall, carers appreciate the flexibility and self-paced nature of eHealth interventions, with high rates of satisfaction and acceptability. More studies using robust designs are needed to extend the evidence base
Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis
BACKGROUND: Cystic fibrosis (CF) is a life shortening disease, however prognosis has improved and the adult population is growing. Most adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden. The aim of this study was to examine the relationships among treatment adherence, symptoms of depression and health-related quality of life (HRQoL) in a population of young adults with CF. METHODS: We administered three standardized questionnaires to 67 patients with CF aged 18–30 years; Morisky Medication Adherence Scale, Major Depression Inventory, and Cystic Fibrosis Questionnaire-Revised. RESULTS: There was a response rate of 77 % and a majority of the young adults (84 %) were employed or in an education program. Most participants (74 %) reported low adherence to medications. One third (32.8 %) of the participants reported symptoms of depression. HRQoL scores were especially low on Vitality and Treatment Burden, and symptoms of depression were associated with low HRQoL scores (p < 0.01) with medium to large deficits across on all HRQoL domains (Cohen’s d 0.60–1.72) except for the domain treatment burden. High depression symptom scores were associated with low adherence (r = −0.412, p < 0.001). CONCLUSIONS: Despite improved physical health, many patients with CF report poor adherence, as well as impaired mental wellbeing and HRQoL. Thus, more attention to mental health issues is needed