Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review

Rice, Danielle B; Carboni-Jiménez, Andrea; Cañedo-Ayala, Mara; Chiovitti, Matthew J.; Levis, Alexander W.; Thombs, Brett D.

doi:10.1007/s40271-020-00441-8

Cited by 13 publications

(19 citation statements)

References 50 publications

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“…Another way of reducing the burden on caregivers of chronically ill patients is by promoting peer support groups, in which interpersonal exchange between people who experience similar situations is facilitated 20 . It has been reported that support group intervention might have a positive effect on psychological wellbeing, stress, burden and feelings of isolation 20,21 . This practice might especially help owners of dogs that have recently been diagnosed and who are still unfamiliar with the implications of the long‐term therapy of hypoadrenocorticism, as well as recognising stress for their dogs.…”

Section: Discussionmentioning

confidence: 99%

Effect of long‐term management of hypoadrenocorticism on the quality of life of affected dogs and their owners

et al. 2022

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Background The treatment of canine adrenal insufficiency consists of hormone substitution and requires high owner compliance and intense human–dog interaction. This might affect the quality of life (QoL) of owners and their pets. The aim of the study was to evaluate the impact of hypoadrenocorticism and its treatment on the QoL of dogs and their owners. Methods Owners completed a web‐based survey that contained items concerning signalment, owner QoL, dog QoL and long‐term therapy. Results Three hundred and twenty‐two owners participated. Most owners feared an adrenal crisis. Approximately half of the participants reported that the bond between them and their pet increased after diagnosis. Although many participants felt that their own QoL was not affected by their dog's disease, worries about costs and leaving their dog unsupervised were frequently reported. Half of the study participants increased their dog's glucocorticoid doses when a stressful situation was foreseeable (‘boosting’ of therapy). Some administered hydrocortisone, mostly switched from prednisolone, resulting in a reduction in side effects. Conclusions Special attention should be given to glucocorticoid therapy and owner's QoL. The overall worry of an adrenal crisis might increase caregivers’ burden, reducing their overall QoL. Hydrocortisone might be a safe alternative to prednisolone, but further research is necessary to evaluate its long‐term efficacy and safety in dogs.

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Section: Discussionmentioning

confidence: 99%

Effect of long‐term management of hypoadrenocorticism on the quality of life of affected dogs and their owners

et al. 2022

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“…Individuals with RD are surviving and living lives not previously thought possible, yet are not well understood [ 15 ]. Existing knowledge about children with RD describes the psychosocial experiences of their families and caregivers [ 16 , 17 ] yet the child with RD must remain the focal point. Children with RD are more likely to encounter significant challenges in their functioning at home, at school, and in their community [ 18 ].…”

Section: Resultsmentioning

confidence: 99%

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

et al. 2022

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Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their homes and family lives. We searched the literature on psychosocial considerations for children with rare diseases in PubMed and Google Scholar in English until 15 April 2022, excluding publications unavailable in full text. The results examine RD and their psychosocial ramifications for children, families, and the healthcare system. The domains of the home, school, community, and medical care are addressed, as are the implications of RD management as children transition to adulthood. Matters of relevant healthcare, public policies, and more sophisticated translational research that addresses the intersectionality of identities among RD are proposed. Recommendations for interventions and supportive care in the aforementioned domains are provided while emphasizing calls to action for families, clinicians, investigators, and advocacy agents as we work toward establishing evidence-based care for children with RD.

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“…We propose that assessment of mental health and a care pathway to support services, as part of coordinated care, be instigated for rare disease patients and carers in the UK. Evidence of the positive impact of psychological support for carers of people with rare diseases is growing [ 49 ].…”

Section: Discussionmentioning

confidence: 99%

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop

Spencer-Tansley

Meade

Ali

et al. 2022

BMC Health Serv Res

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Background Rare disease patients and carers report significant impacts on mental health but studies on UK populations have focussed on relatively few, specific conditions. Collectively rare conditions represent a substantial health burden, with an estimated 3.5 million affected individuals in the UK. Method We explored the impact on mental health of living with a rare condition, and experiences of health service support, through an online survey. The survey assessed the impact of specific experiences commonly reported by those affected by a rare condition through multiple choice questions and Likert scale items, and open text question boxes. Through a multi-stakeholder workshop that involved facilitated discussion of our findings with patients/carers, clinicians and a government advisor, we developed recommendations for policy and practice toward a more person-centred and integrated approach. Results Eligible responses came from 1231 patients and 564 carers. Due to their rare condition, the majority of respondents (> 90%) had felt worried/anxious; stressed; and /or low/depressed. Thirty-six percent of patients and 19% of carers had had suicidal thoughts. Challenges that are particular to rare conditions and which negatively affect mental health included limited knowledge of the condition amongst healthcare professionals (88%), and not being believed or taken seriously by them. Only 23% of respondents felt healthcare professionals considered mental and physical health as equally important. Almost half reported never having been asked about mental health by healthcare professionals. Our findings indicate that access to, and appropriateness of, professional psychological support needs to be improved. Peer group support is important but signposting is inadequate. Our recommendations are for healthcare professionals to be supported to effectively and sensitively recognise and address patients’ and carers’ mental health needs; and for service level coordination of care to integrate professional psychological support with rare disease services. Conclusion Living with a rare disease substantially impacts mental health. Many of the drivers of poor mental health reflect issues specific to managing rare conditions. To meet UK government commitments, there should be a focus on empowering healthcare professionals who treat rare disease patients and on integration of mental health support with rare disease services.

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Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review

Cited by 13 publications

References 50 publications

Effect of long‐term management of hypoadrenocorticism on the quality of life of affected dogs and their owners

Effect of long‐term management of hypoadrenocorticism on the quality of life of affected dogs and their owners

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop

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