‘Tired of spinning plates’: Synopsis of mixed methods exploration of mental health experiences of adult/older carers of adults with learning disabilities
Notice bibliographique
Résumé
Background: This research addresses the mental health of family carers of adults with learning disabilities. We investigated participants' perceptions of their mental health and views on the accessibility and quality of support. Design and methods: The research involved seven work packages which included public involvement, a rapid scoping review of evidence about family carers' mental health and support, an online exhibition, interviews with parent and sibling carers, digital storytelling workshops, key stakeholder discussions and the creation of learning and teaching materials. Results: Caregiving driven by love is often exploited by health and social care services which deny basic support, information and kindness. Enduring struggle for support and worries about the future are often the cause of mental distress. Participants know what supports mental well-being but have little time to look after themselves due to the lack of support. Social services were described as 'hostile' or absent and participants viewed themselves as exhausted by the lack of support, rather than depressed. Medication can help but can be offered without consideration of their caring role or because there are no alternatives. Participants ask for their statutory entitlements for health and social care support to be met with kindness. Outputs and dissemination: We delivered: (1) an expansive public engagement model; (2) an innovative and creative participatory approach to generate stories of care; (3) a dissemination strategy to raise awareness of the mental health of family carers and (4) the development of general practitioner resources. We published journal articles, blogs, magazine articles, an online exhibition, films and presented findings at international conferences. Public and stakeholder involvement and engagement: Family carers and people with learning disabilities were involved across the study, and in the Study Steering Group. Limitations: Recruitment was slower than expected. Carers were unable to use care replacement costs because of a lack of alternative care. There were challenges involving marginalised communities. We engaged with fewer respondents through the Exhibition than the planned survey; however, it was important to respond to participants' views. Conclusions: Health and care services often fail to recognise or adjust support for family carers despite provision under the Equality Act. The role of love in caring relationships, the absence of consideration of this in research, and the exploitation of this love by service systems which rely heavily on family carers were highlighted. Provisions in The Care Act and The Equalities Act are not always upheld, family carers struggle to gain support over years and even the 'feeblest' acts of kindness make a difference in health and care delivery. There is a need for policy-makers and practitioners to review and develop robust monitoring of the provision set out in legislation to ensure family carers and people with learning disabilities' entitlements are met. Small acts of kindness on the part of health and social care providers have a big impact on the well-being of family carers. Future work: Further exploration of care as a relational activity. The development of ways of monitoring compliance and adherence to legal frameworks. Bringing together the perceptions, views and experiences of people with learning disabilities, siblings and parent carers to generate a comprehensive understanding of the support needs of these groups. An exploration of the mental health experiences of LGBTQI+ family carers and family carers of autistic adults without learning disabilities. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135080.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,062 | 0,067 |
| Méta-épidémiologie (sens strict) | 0,002 | 0,001 |
| Méta-épidémiologie (sens large) | 0,003 | 0,003 |
| Bibliométrie | 0,013 | 0,015 |
| Études des sciences et des technologies | 0,009 | 0,009 |
| Communication savante | 0,010 | 0,008 |
| Science ouverte | 0,004 | 0,015 |
| Intégrité de la recherche | 0,004 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».