Research priorities for childhood chronic conditions: a workshop report

2018 ◽  
Vol 104 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Pamela Lopez-Vargas ◽  
Allison Tong ◽  
Sally Crowe ◽  
Stephen I Alexander ◽  
Patrina Ha Yuen Caldwell ◽  
...  
Keyword(s):  
Health Professionals ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Research Priorities ◽  
Well Being ◽  
Financial Loss ◽  
Paediatric Hospital ◽  
Health And Social Care ◽  
Consumer Organisations ◽  
Childhood Chronic Conditions

BackgroundChronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.ObjectiveTo identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.SettingAn Australian paediatric hospital and health consumer organisations.MethodsRecruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed.ResultsSeventy-eight research questions were identified. Five themes underpinned participants’ priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services).ConclusionResearch priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.

scholarly journals Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a protocol for a scoping review

BMJ Open ◽  
2017 ◽  
Vol 7 (12) ◽  
pp. e018247 ◽  
Author(s):  
Elana Commisso ◽  
Katherine S McGilton ◽  
Ana Patricia Ayala ◽  
Melissa, K Andrew ◽  
Howard Bergman ◽  
...  
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Scoping Review ◽  
Chronic Conditions ◽  
Social Care ◽  
Grey Literature ◽  
Well Being ◽  
Multiple Chronic Conditions ◽  
Care Needs ◽  
Health And Social Care

IntroductionPeople are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research.Methods and analysisWe will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O’Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate.Ethics and disseminationThis scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.

scholarly journals The Effects of a Digital Well-Being Intervention on Patients With Chronic Conditions: Observational Study (Preprint)

2019 ◽  
Author(s):  
Acacia C Parks ◽  
Allison L Williams ◽  
Gina M Kackloudis ◽  
Julia L Stafford ◽  
Eliane M Boucher ◽  
...  
Keyword(s):  
Chronic Illness ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Intervention Program ◽  
Behavioral Therapy ◽  
Past Research ◽  
Well Being ◽  
Subjective Well Being ◽  
The Impact ◽  
Over Time

BACKGROUND Chronic conditions account for 75% of health care costs, and the impact of chronic illness is expected to grow over time. Although subjective well-being predicts better health outcomes, people with chronic conditions tend to report lower well-being. Improving well-being might mitigate costs associated with chronic illness; however, existing interventions can be difficult to access and draw from a single theoretical approach. Happify, a digital well-being intervention program drawing from multiple theoretical traditions to target well-being, has already been established as an efficacious means of improving well-being in both distressed and nondistressed users. OBJECTIVE This study aimed to compare change in well-being over time after using Happify for users with and without a chronic condition. METHODS Data were obtained from Happify users, a publicly available digital well-being program accessible via website or mobile phone app. Users work on tracks addressing a specific issue (eg, conquering negative thoughts) composed of games and activities based on positive psychology, cognitive behavioral therapy, and mindfulness principles. The sample included 821 users receiving at least 6 weeks’ exposure to Happify (ranging from 42 to 179 days) who met other inclusion criteria. As part of a baseline questionnaire, respondents reported demographic information (age and gender) and whether they had any of the prespecified chronic conditions: arthritis, diabetes, insomnia, multiple sclerosis, chronic pain, psoriasis, eczema, or some other condition (450 reported a chronic condition, whereas 371 did not). Subjective well-being was assessed with the Happify Scale, a 9-item measure of positive emotionality and life satisfaction. To evaluate changes in well-being over time, a mixed effects linear regression model was fit for subjective well-being, controlling for demographics and platform usage. RESULTS At baseline, users with a chronic condition had significantly lower subjective well-being (mean 38.34, SD 17.40) than users without a chronic condition (mean 43.65, SD 19.13). However, change trajectories for users with or without a chronic condition were not significantly different; both groups experienced equivalent improvements in well-being. We also found an effect for time from baseline (<italic>b</italic>=0.071; SE=0.010; <italic>P</italic>&lt;.01) and number of activities completed (<italic>b</italic>=0.03; SE=0.009; <italic>P</italic>&lt;.01), and a 2-way interaction between number of activities completed and time from baseline (<italic>b</italic>=0.0002; SE=0.00006; <italic>P</italic>&lt;.01), such that completing more activities and doing so over increasingly longer periods produced improved well-being scores. CONCLUSIONS Data from this study support the conclusion that users with a chronic condition experienced significant improvement over time. Despite reporting lower subjective well-being on the whole, their change trajectory while using Happify was equivalent to those without a chronic condition. Consistent with past research, users who completed more activities over a longer period showed the most improvement. In short, the presence of a chronic condition did not prevent users from showing improved well-being when using Happify.

scholarly journals The Effects of a Digital Well-Being Intervention on Patients With Chronic Conditions: Observational Study

10.2196/16211 ◽  
2020 ◽  
Vol 22 (1) ◽  
pp. e16211 ◽  
Author(s):  
Acacia C Parks ◽  
Allison L Williams ◽  
Gina M Kackloudis ◽  
Julia L Stafford ◽  
Eliane M Boucher ◽  
...  
Keyword(s):  
Chronic Illness ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Intervention Program ◽  
Behavioral Therapy ◽  
Past Research ◽  
Well Being ◽  
Subjective Well Being ◽  
The Impact ◽  
Over Time

Background Chronic conditions account for 75% of health care costs, and the impact of chronic illness is expected to grow over time. Although subjective well-being predicts better health outcomes, people with chronic conditions tend to report lower well-being. Improving well-being might mitigate costs associated with chronic illness; however, existing interventions can be difficult to access and draw from a single theoretical approach. Happify, a digital well-being intervention program drawing from multiple theoretical traditions to target well-being, has already been established as an efficacious means of improving well-being in both distressed and nondistressed users. Objective This study aimed to compare change in well-being over time after using Happify for users with and without a chronic condition. Methods Data were obtained from Happify users, a publicly available digital well-being program accessible via website or mobile phone app. Users work on tracks addressing a specific issue (eg, conquering negative thoughts) composed of games and activities based on positive psychology, cognitive behavioral therapy, and mindfulness principles. The sample included 821 users receiving at least 6 weeks’ exposure to Happify (ranging from 42 to 179 days) who met other inclusion criteria. As part of a baseline questionnaire, respondents reported demographic information (age and gender) and whether they had any of the prespecified chronic conditions: arthritis, diabetes, insomnia, multiple sclerosis, chronic pain, psoriasis, eczema, or some other condition (450 reported a chronic condition, whereas 371 did not). Subjective well-being was assessed with the Happify Scale, a 9-item measure of positive emotionality and life satisfaction. To evaluate changes in well-being over time, a mixed effects linear regression model was fit for subjective well-being, controlling for demographics and platform usage. Results At baseline, users with a chronic condition had significantly lower subjective well-being (mean 38.34, SD 17.40) than users without a chronic condition (mean 43.65, SD 19.13). However, change trajectories for users with or without a chronic condition were not significantly different; both groups experienced equivalent improvements in well-being. We also found an effect for time from baseline (b=0.071; SE=0.010; P<.01) and number of activities completed (b=0.03; SE=0.009; P<.01), and a 2-way interaction between number of activities completed and time from baseline (b=0.0002; SE=0.00006; P<.01), such that completing more activities and doing so over increasingly longer periods produced improved well-being scores. Conclusions Data from this study support the conclusion that users with a chronic condition experienced significant improvement over time. Despite reporting lower subjective well-being on the whole, their change trajectory while using Happify was equivalent to those without a chronic condition. Consistent with past research, users who completed more activities over a longer period showed the most improvement. In short, the presence of a chronic condition did not prevent users from showing improved well-being when using Happify.

Chronic conditions, financial burden and pharmaceutical pricing: insights from Australian consumers

2014 ◽  
Vol 38 (5) ◽  
pp. 589 ◽  
Author(s):  
Jennifer A. Whitty ◽  
Adem Sav ◽  
Fiona Kelly ◽  
Michelle A. King ◽  
Sara S. McMillan ◽  
...  
Keyword(s):  
Health Professionals ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Financial Incentive ◽  
Financial Burden ◽  
Comparison Method ◽  
Pharmaceutical Pricing ◽  
Structured Interviews ◽  
Medicines Use ◽  
The Impact

Objective To explore the perceptions of Australian consumers and carers about the financial burden associated with medicines used for the treatment of chronic conditions. Method Semi-structured interviews were undertaken with individuals (n = 97) who identified as having a chronic condition(s) (n = 70), cared for someone with a chronic condition(s) (n = 8), or both (n = 19). Participants included individuals identifying with an Aboriginal or Torres Strait Islander (n = 23) or Culturally and Linguistically Diverse (n = 19) background. Data were analysed using the constant comparison method and reported thematically. Results Participants described substantial costs associated with medicines use, along with aggravating factors, including the duration and number of medicines used, loss of employment, lack of pricing consistency between pharmacies and the cost of dose administration aids. Consequences included impacts on medicine adherence, displacement of luxury items and potentially a reduced financial incentive to work. Understanding and beliefs related to pharmaceutical pricing policy varied and a range of proactive strategies to manage financial burden were described by some participants. Conclusions The financial burden associated with medicines used for the management of chronic conditions by Australian consumers is substantial. It is compounded by the ongoing need for multiple medicines and indirect effects associated with chronic conditions, such as the impact on employment. What is known about the topic? Medicines are a common form of treatment in chronic conditions. The financial burden related to medicines use, including co-payments, is associated with reduced adherence and other cost-coping strategies. Out of pocket costs for prescription medicines are relatively high in Australia compared with some other countries, including New Zealand and the United Kingdom. Australian consumers with chronic illness are likely to be at particular risk of financial burden associated with medicines use. What does this paper add? This paper explores the perceptions of consumers and carers around the financial burden associated with the use of medicines for the treatment of chronic conditions in Australia. It draws on the experiences and perceptions of a diverse group of consumers in Australia who identify as having, or caring for someone with, a chronic condition(s). What are the implications for practitioners? Health professionals who assist consumers to manage their medicines need to be aware of the potential for financial burden associated with medicines use and its potential impact on adherence. There is a need for health professionals to educate and assist consumers with chronic conditions to ensure they can navigate the health system to maximum benefit and receive financial entitlements for which they are eligible.

scholarly journals What skills do primary health care professionals need to provide effective self-management support?Seeking consumer perspectives

2009 ◽  
Vol 15 (1) ◽  
pp. 37 ◽  
Author(s):  
Sharon Lawn ◽  
Malcolm Battersby ◽  
Helen Lindner ◽  
Rebecca Mathews ◽  
Steve Morris ◽  
...  
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Health Professionals ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Community Support ◽  
Self Management ◽  
Management Support ◽  
Primary Health ◽  
The Impact

This research aimed to identify the skills required by primary health care (PHC) professionals to provide effective chronic condition prevention and self-management support, according to the perceptions of a sample of Australian consumers and carers. Qualitative data were collected and integrated from a focus group, key informant interviews and National Stakeholder meetings and a National Workshop, supported by an extensive literature review. With the exception of health professionals specifically trained or currently working in this area, consumers and carers perceive there is a lack of understanding, competence and practice of chronic condition prevention and self-management support among PHC professionals. The PHC workforce appears not to have the full set of skills needed to meet the growing burden of chronic conditions on the health system. Recommendations include education and training that focuses on improved communication skills, knowledge of community support resources, identification of consumers’ strengths and current capacities, collaborative care with other health professionals, consumers and carers and psychosocial skills to understand the impact of chronic conditions from the person’s perspective.

scholarly journals Experiences of mental health professionals supporting front-line health and social care workers during COVID-19: qualitative study

BJPsych Open ◽  
2021 ◽  
Vol 7 (2) ◽  
Author(s):  
Jo Billings ◽  
Camilla Biggs ◽  
Brian Chi Fung Ching ◽  
Vasiliki Gkofa ◽  
David Singleton ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Professional Growth ◽  
Social Care ◽  
Clinical Pathways ◽  
Well Being ◽  
Front Line ◽  
Care Workers ◽  
Health And Social Care

Background The coronavirus disease 2019 (COVID-19) pandemic is having a well-documented impact on the mental health of front-line health and social care workers (HSCWs). However, little attention has been paid to the experiences of, and impact on, the mental health professionals who were rapidly tasked with supporting them. Aims We set out to redress this gap by qualitatively exploring UK mental health professionals’ experiences, views and needs while working to support the well-being of front-line HSCWs during the COVID-19 pandemic. Method Mental health professionals working in roles supporting front-line HSCWs were recruited purposively and interviewed remotely. Transcripts of the interviews were analysed by the research team following the principles of reflexive thematic analysis. Results We completed interviews with 28 mental health professionals from varied professional backgrounds, career stages and settings across the UK. Mental health professionals were motivated and driven to develop new clinical pathways to support HSCWs they perceived as colleagues and many experienced professional growth. However, this also came at some costs, as they took on additional responsibilities and increased workloads, were anxious and uncertain about how best to support this workforce and tended to neglect their own health and well-being. Many were professionally isolated and were affected vicariously by the traumas and moral injuries that healthcare workers talked about in sessions. Conclusions This research highlights the urgent need to consider the mental well-being, training and support of mental health professionals who are supporting front-line workers.

scholarly journals Mental Health Consequences of the COVID-19 Pandemic Among Older Adults With Chronic Conditions

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 724-724
Author(s):  
Courtney Polenick ◽  
Diarratou Kaba ◽  
Summer Meyers ◽  
Annie Zhou ◽  
Nikita Daniel ◽  
...  
Keyword(s):  
Mental Health ◽  
Older Adults ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Online Survey ◽  
Negative Impact ◽  
Well Being ◽  
Severe Illness ◽  
Cross Sectional ◽  
Related Stress

Abstract The COVID-19 pandemic may have a negative impact on mental health, especially among older adults with chronic conditions who are more vulnerable to severe illness. This cross-sectional qualitative study evaluated how the pandemic has impacted the ways that adults aged 50 and older with chronic conditions managed their mental health. Participants included a total of 492 adults (M = 64.95 years, SD = 8.91, range = 50 – 94) from Michigan (82.1%) and 33 other U.S. states who reported a diagnosis of at least one chronic condition and completed an anonymous online survey between May 14 and July 9, 2020. Participants provided open-ended responses to a question about the pandemic’s impact on how they were taking care of their mental health. The data were coded to ascertain relevant concepts and were reduced to develop major themes. We determined four main themes. The pandemic impacted how participants took care of their mental health through: (1) pandemic-related barriers to social interaction; (2) pandemic-related routine changes; (3) pandemic-related stress; and (4) pandemic-related changes to mental health care. Taken as a whole, this study indicates that older adults with chronic conditions encountered a variety of challenges to managing their mental health in the early months of the COVID-19 pandemic, but also demonstrated considerable resilience. These findings identify potential risk and protective factors to target as part of personalized interventions to preserve their well-being during this pandemic and in future public health crises.

scholarly journals Social capital is associated with improved subjective well-being of older adults with chronic non-communicable disease in six low- and middle-income countries

2020 ◽  
Vol 16 (1) ◽  
Author(s):  
Aaron K. Christian ◽  
Olutobi Adekunle Sanuade ◽  
Michael Adu Okyere ◽  
Kafui Adjaye-Gbewonyo
Keyword(s):  
Older Adults ◽  
Social Capital ◽  
Chronic Diseases ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Well Being ◽  
Multiple Chronic Conditions ◽  
Subjective Well Being ◽  
Middle Income ◽  
Middle Income Countries

Abstract Background Non-communicable diseases (NCDs) are increasingly contributing to the morbidity and mortality burden of low and-middle income countries (LMIC). Social capital, particularly participation has been considered as a possible protective factor in the prevention and management of chronic conditions. It is also largely shown to have a negative effect on the well-being of patients. The current discourse on the well-being of individuals with NCDs is however focused more on a comparison with those with no NCDs without considering the difference between individuals with one chronic condition versus those with multiple chronic conditions (MCC). Method and objective We employed a multinomial logit model to examine the effect of social capital, particularly social participation, on the subjective well-being (SWB) of older adults with single chronic condition and MCC in six LMIC. Findings Social capital was associated with increased subjective well-being of adults in all the six countries. The positive association between social capital and subjective well-being was higher for those with a single chronic condition than those with multiple chronic conditions in India and South Africa. Conversely, an increase in the likelihood of having higher subjective well-being as social capital increased was greater for those with multiple chronic conditions compared to those with a single chronic condition in Ghana. Discussion The findings suggest that improving the social capital of older adults with chronic diseases could potentially improve their subjective well-being. This study, therefore, provides valuable insights into potential social determinants of subjective well-being of older adults with chronic diseases in six different countries undergoing transition. Additional research is needed to determine if these factors do in fact have causal effects on SWB in these populations.

scholarly journals A prospective investigation of developmental trajectories of psychosocial adjustment in adolescents facing a chronic condition - study protocol of an observational, multi-center study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Petra Warschburger ◽  
Ann-Christin Petersen ◽  
Roman E. von Rezori ◽  
Friederike Buchallik ◽  
Harald Baumeister ◽  
...  
Keyword(s):  
Coping Strategies ◽  
Psychosocial Adjustment ◽  
Chronic Conditions ◽  
Chronic Condition ◽  
Online Survey ◽  
Satisfaction With Life ◽  
Well Being ◽  
Anxiety And Depression ◽  
Patient Registries ◽  
Resiliency Factors

Abstract Background Relatively little is known about protective factors and the emergence and maintenance of positive outcomes in the field of adolescents with chronic conditions. Therefore, the primary aim of the study is to acquire a deeper understanding of the dynamic process of resilience factors, coping strategies and psychosocial adjustment of adolescents living with chronic conditions. Methods/design We plan to consecutively recruit N = 450 adolescents (12–21 years) from three German patient registries for chronic conditions (type 1 diabetes, cystic fibrosis, or juvenile idiopathic arthritis). Based on screening for anxiety and depression, adolescents are assigned to two parallel groups – “inconspicuous” (PHQ-9 and GAD-7 < 7) vs. “conspicuous” (PHQ-9 or GAD-7 ≥ 7) – participating in a prospective online survey at baseline and 12-month follow-up. At two time points (T1, T2), we assess (1) intra- and interpersonal resiliency factors, (2) coping strategies, and (3) health-related quality of life, well-being, satisfaction with life, anxiety and depression. Using a cross-lagged panel design, we will examine the bidirectional longitudinal relations between resiliency factors and coping strategies, psychological adaptation, and psychosocial adjustment. To monitor Covid-19 pandemic effects, participants are also invited to take part in an intermediate online survey. Discussion The study will provide a deeper understanding of adaptive, potentially modifiable processes and will therefore help to develop novel, tailored interventions supporting a positive adaptation in youths with a chronic condition. These strategies should not only support those at risk but also promote the maintenance of a successful adaptation. Trial registration German Clinical Trials Register (DRKS), no. DRKS00025125. Registered on May 17, 2021.

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