Meeting the emotional needs of parents who have a child with complex needs

2008 ◽  
Vol 2 (3) ◽  
pp. 103-107 ◽  
Author(s):  
Naomi Narramore
2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.


2009 ◽  
Author(s):  
Alessandro Morandi ◽  
Nicola Paulesu ◽  
Patrizia Meringolo
Keyword(s):  

2011 ◽  
Vol 29 ◽  
pp. 127 ◽  
Author(s):  
Ruby Dhand

Ethno-racial psychiatric consumer/survivors face complex forms of discrimination as a result of the culture specific stigmatization of mental health disabilities, institutional racism and culturally inappropriate care. In an effort to achieve better access to justice for ethno-racial communities, we must strive to understand their complex needs, perspectives and conceptions of mental health. Thus, I identify and critique the legal barriers, which are perceived to differentially affect ethno-racial psychiatric consumer/survivors in Ontario, through an analysis of the Consent and Capacity Board [CCB]. I propose the hypothesis that factors such as race, ethnicity, culture, poverty and social exclusion are not fully addressed by the CCB. I use data collected from interviews with stakeholders to reveal the procedural, structural/systemic and discretionary barriers faced by ethno-racial psychiatric consumer/survivors within the CCB’s pre-hearing, hearing and post-hearing processes, along with recommendations to address these barriers.Les consommateurs/survivants de la psychiatrie ethnoraciale doivent surmonter des formes complexes de discrimination en raison de la stigmatisation culturelle des troubles mentaux, du racisme institutionnel et des soins culturellement inappropriés. Pour améliorer l’accès à la justice des collectivités ethnoraciales, nous devons nous efforcer de comprendre leurs besoins complexes, leurs perspectives et leurs conceptions de la santé mentale. Dans le présent travail, je relève et critique les obstacles juridiques, qui sont perçus comme touchant différemment les consommateurs/survivants de la psychiatrie ethnoraciale en Ontario, en effectuant une analyse des travaux de la Commission du consentement et de la capacité (la « CCC »). J’émets l’hypothèse que la CCC ne prend pas pleinement en compte des facteurs comme la race, l’ethnicité, la culture, la pauvreté et l’exclusion sociale. J’utilise des données provenant d’entrevues avec des parties prenantes pour illustrer les obstacles procéduraux, structurels/systémiques et discrétionnaires auxquels font face les consommateurs/survivants de la psychiatrie ethnoraciale lors des audiences préparatoires et des audiences de la CCC et dans le cadre des processus suivis par la CCC après les audiences, et je formule des recommandations visant à surmonter ces obstacles.


BMJ Open ◽  
2020 ◽  
Vol 10 (3) ◽  
pp. e033317
Author(s):  
Rachel M Hiller ◽  
Sarah L Halligan ◽  
Richard Meiser-Stedman ◽  
Elizabeth Elliott ◽  
Emily Rutter-Eley

ObjectivesYoung people who have been removed from their family home and placed in care have often experienced maltreatment and there is well-developed evidence of poor psychological outcomes. Once in care, foster carers often become the adult who provides day-to-day support, yet we know little about how they provide this support or the challenges to and facilitators of promoting better quality carer–child relationships. The aim of this study was to understand how carers support the emotional needs of the young people in their care and their views on barriers and opportunities for support.Design and participantsParticipants were 21 UK foster carers, recruited from a local authority in England. They were predominantly female (86%), aged 42–65 years old and ranged from those who were relatively new to the profession (<12 months’ experience) to those with over 30 years of experience as a carer. We ran three qualitative focus groups to gather in-depth information about their views on supporting their foster children’s emotional well-being. Participants also completed short questionnaires about their training experiences and sense of competence.ResultsOnly half of the sample strongly endorsed feeling competent in managing the emotional needs of their foster children. While all had completed extensive training, especially on attachment, diagnosis-specific training for mental health problems (eg, trauma-related distress, depression) was less common. Thematic analysis showed consistent themes around the significant barriers carers faced navigating social care and mental health systems, and mixed views around the best way to support young people, particularly those with complex mental health needs and in relation to reminders of their early experiences.ConclusionsFindings have important implications for practice and policy around carer training and support, as well as for how services support the mental health needs of young people in care.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.


Author(s):  
Yu-Hsin Hsieh ◽  
Maria Borgestig ◽  
Deepika Gopalarao ◽  
Joy McGowan ◽  
Mats Granlund ◽  
...  

Use of eye-gaze assistive technology (EGAT) provides children/youths with severe motor and speech impairments communication opportunities by using eyes to control a communication interface on a computer. However, knowledge about how using EGAT contributes to communication and influences dyadic interaction remains limited. Aim: By video-coding dyadic interaction sequences, this study investigates the impacts of employing EGAT, compared to the Non-EGAT condition on the dyadic communicative interaction. Method: Participants were six dyads with children/youths aged 4–19 years having severe physical disabilities and complex communication needs. A total of 12 film clips of dyadic communication activities with and without EGAT in natural contexts were included. Based on a systematic coding scheme, dyadic communication behaviors were coded to determine the interactional structure and communicative functions. Data were analyzed using a three-tiered method combining group and individual analysis. Results: When using EGAT, children/youths increased initiations in communicative interactions and tended to provide more information, while communication partners made fewer communicative turns, initiations, and requests compared to the Non-EGAT condition. Communication activities, eye-control skills, and communication abilities could influence dyadic interaction. Conclusion: Use of EGAT shows potential to support communicative interaction by increasing children’s initiations and intelligibility, and facilitating symmetrical communication between dyads.


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