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Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.

ABSTRACT: Complex health needs are demanding and often require additional medical, psychological and social support. All those involved (e.g., patients, carers, professionals) face a unique set of challenges and needs, especially in families where the patient is a child or a young person with a lifelong condition. The aim of the study was to explore carers' and young people's needs when living with long term conditions, as well as the views of the healthcare professionals supporting them. Semi-structured interviews with 30 participants (11 professionals, 10 parents, and 9 young people) were conducted. Interviews focused on 3 main areas-(1) medical needs, (2) psychological needs, and (3) communication needs-and were analyzed using thematic analysis. Four main themes emerged: (1) Acceptance takes time refers to the often long and challenging process of adapting to the diagnosis and living with the condition; (2) Close guidance captures the importance of specialised and long term guidance in accessing and managing the complexities of the medical system; (3) Open communication shows the families' need to be collaboratively connected to healthcare providers and other families facing similar difficulties; and (4) Long-term support underlines the importance of long term formal and informal support strategies. The participants' experiences and views have provided us with insight and guidance for developing and implementing personalized and integrated services. This inside perspective is key for future research aimed at better understanding the impact of complex conditions and meaningful ways to support families throughout their journeys.

SUBMITTER: Radu M

PROVIDER: S-EPMC9270528 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundRecently, there has been growing interest in providing more tailored, patient-centered care for the treatment of type 2 diabetes mellitus (T2DM). Yet it remains unclear which patient characteristics should be determined to guide such an approach. Therefore, the opinions of healthcare providers (HCP) and people with T2DM about relevant patient characteristics for estimating healthcare needs of people with T2DM were assessed and compared.MethodsTwo separate online Delphi studies were conducted according to the RAND-UCLA Appropriateness Method: one with HCPs (n?=?22) from Dutch primary and secondary care and one with people with T2DM treated in Dutch primary care (n?=?46). The relevance of patient characteristics for estimating healthcare needs, defined as the number of yearly consultations, was assessed on a 5-point Likert scale. Characteristics with a median of 4 or 5 and an interquartile range???1.5 were considered relevant with consensus. Participants were also asked to select the top 5 of most relevant patient characteristics. To determine the overall top 5, the mean relative importance score of each characteristic was calculated.ResultsIn two Delphi rounds, 28 and 15 patient characteristics were rated by HCPs and people with T2DM, respectively. Both HCPs and people with T2DM found health-related characteristics relevant for estimating healthcare needs of people with T2DM. However, HCPs preferred to estimate healthcare needs using person- and context-related characteristics. They ranked self-efficacy as the most relevant estimator. In contrast, people with T2DM were more in favor of health-related characteristics and ranked HbA1c as the most relevant estimator.ConclusionsThe findings show that there is discrepancy in opinions on relevant patient characteristics for estimating healthcare needs between HCPs and people with T2DM. To achieve more tailored, patient-centered care, it is important that both groups agree on the topics to be discussed during patient consultations.

Project description:IntroductionIdentifying stakeholders' needs is crucial to informing decisions and policy development. This study aims to identify healthcare and social-related needs and effective strategies associated with COVID-19 from the first-person perspectives of patients and healthcare providers.MethodsCross-sectional online survey design including qualitative open-ended questions, conducted in primary care and hospital settings across Spain, with 12 out of 19 regions represented. Adults aged 18 years and older, who (a) resided in Spain and had a history of COVID-19 or (b) worked as healthcare providers delivering direct or indirect care for people with COVID-19 in Spanish primary care or hospitals during 2020 were eligible to participate. Recruitment was conducted via social-media networks (Twitter, LinkedIn, and WhatsApp) and communication channels of key organizations including patient and professional associations and groups. A total of 182 people were invited to complete the surveys and 76 people completed the surveys (71% women), of which 33 were home-isolated patients, 14 were hospitalized patients, 16 were primary care professionals, and 13 were hospital care professionals.ResultsA total of 327 needs and 86 effective strategies and positive aspects were identified across surveys and classified into the following overarching themes: (i) Accessibility, (ii) Basic needs, (iii) Clinical care, (iv) Person-and-family centered care, (v) Caring for the healthcare professional, (vi) Protocolization, information, health campaigns, and education, (vii) Resource availability, (viii) and Organizational needs/strategies.DiscussionFindings indicate the Spanish health and social care systems were generally unprepared to combat COVID-19. Implications for research, practice, and policy focus on integrating first-person perspectives as best practice to identify, prioritize and address needs to increase health and social care systems capacity and preparedness, as well as providing well-co-coordinated responses across government, healthcare, and non-government sectors to promote and protect the physical and mental health of all.

Project description:BackgroundThere are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.Understanding the support needs of carers acting as proxy healthcare decision-makers will be vital in improving the decision-making process for people with dementia and addressing the holistic needs of carers.ObjectiveThe objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision-makers for people with dementia.DesignA qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third-order constructs.Data sourcesA search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO).Eligibility criteriaFifteen studies met the inclusion criteria: primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions.Data extraction and synthesisTwo independent researchers conducted validity assessments for each paper selected for inclusion, and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team.ResultsFrom the 15 papers included in the study, three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person-centred care and the use of legal frameworks.Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner.ConclusionsThis meta-ethnography highlights opportunities for healthcare professionals and policymakers to improve experiences of carers making proxy healthcare decisions for people with dementia.Prospero registration numberCRD42020124485.

Project description:IntroductionThis study aimed to explore the experiences of healthcare access in a diverse sample of trans and gender diverse individuals with complex needs using qualitative methods. We recruited 12 individuals using trans community-based networks facilitated by the Gender Centre. Each individual participated in an in-depth, semi structured interview conducted by a peer interviewer. Interviews were analysed thematically.FindingsParticipants had a range of complex health needs to manage, including ongoing access to gender-affirming hormones, mental health care and sexual health care. Some also had chronic diseases. Accordingly, scheduling appointments and affording the co-payments required were major preoccupations. Most participants were not in full time work, and economic hardship proved to be a major compounding factor in issues of healthcare access, impacting on the choice of clinician or practice. Other barriers to accessing health included issues within health services, such as disrespectful attitudes, misgendering, 'deadnaming' (calling the person by their previous name), displaying an excessive interest is aspects of the participants' life that were irrelevant to the consultation, and displaying ignorance of trans services such that the participants felt an obligation to educate them. In addition, participants noted how stereotyped ideas of trans people could result in inaccurate assumptions about their healthcare needs. Positive attributes of services were identified as respectful communication styles, clean, welcoming spaces, and signs that indicated professionalism, care and openness, such as relevant information pamphlets and visibility of LGBTIQ service orientation. Participants valued peer-based advice very highly, and some would act on and trust medical advice from peers above advice from medical professionals.ConclusionThese findings demonstrate a need for comprehensive wrap-around service provision for trans people with complex needs which includes a substantial peer-based component, and addresses physical and mental health and social services conveniently and affordably.

Project description:BackgroundFamilies with young children have faced serious challenges during the first lockdown as a result of the COVID-19 pandemic. In addition to remote working, parents have had to monitor their children's schoolwork and manage their daily lives. When one of the children also has neuro-developmental disorders, this results in an increased burden. We can therefore wonder how these families with one or more young children (under 6 years old) with special needs have experienced and dealt with this lockdown.Aim of the studyIn this context, the "COVJEUNENFANT" study focused more specifically on the subjective experience, as a parent, of those who cared for children with special needs (i.e., with developmental disorders, neurodevelopmental disorders, proven disabilities or chronic health conditions) compared to the general population. We wished to see if the consequences of the health crisis were significantly different from those perceived by respondents in the general population (n = 490) and if the sociodemographic structure of these families differed from those of other respondents.MethodsNinety three French families with at least one child under 6 years old and one with developmental difficulties or a chronic illness, from a cohort of 490 control families, participated in a web-based survey during the first lockdown, from the 28th April 2020 to 29th May 2020.ResultsAfter presenting the participants' sociodemographic characteristics, the results show that these French families (n = 93) are less wealthy than the control population "without special needs" (n = 397), have felt more pressures originating from their environment (families, friends, colleagues, media, social networks…), have suffered from more health issues (other than COVID-19), have taken more measures to protect themselves (social-distancing), and were less likely to feel happy. A significantly larger number of them lamented the lack of free time and voiced a larger need for information regarding children's education. However, their parental role was felt as being more satisfying and their family relations strengthened more than in the general population of participants.ConclusionIt is apparent that urgent prioritisation is needed in order to support and care for these families by continuing to provide care for their children in one way or another, and by ensuring that their need to adapt again does not exceed their own abilities and resources, especially as young children, who have high levels of requirements, are present in the home.

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Families with complex needs: an inside perspective from young people, their carers, and healthcare providers.

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