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Experiences with general practitioners described by families of children with intellectual disabilities and challenging behaviour: a qualitative study.

ABSTRACT: Objective To investigate parents' experiences of follow-up by general practitioners (GPs) of children with intellectual disabilities (ID) and comorbid behavioural and/or psychological problems. Design Qualitative study based on in-depth interviews with parents of children with ID and a broad range of accompanying health problems. Setting County centred study in Norway involving primary and specialist care. Participants Nine parents of seven children with ID, all received services from an assigned GP and a specialist hospital department. Potential participants were identified by the specialist hospital department and purposefully selected by the authors to represent both genders and a range of diagnoses, locations and assigned GPs. Results Three clusters of experiences emerged from the analysis: expectations, relationships and actual use. The participants had low expectations of the GPs' competence and involvement with their child, and primarily used the GP for the treatment of simple somatic problems. Only one child regularly visited their GP for general and mental health check-ups. The participants' experience of their GPs was that they did not have time and were not interested in the behavioural and mental problems of these children. Conclusions Families with children with ID experience a complex healthcare system in situations where they are vulnerable to lack of information, involvement and competence. GPs are part of a stable service system and are in a position to provide security, help and support to these families. Parents' experiences could be improved by regular health checks for their children and GPs being patient, taking time and showing interest in challenging behaviour.

SUBMITTER: Fredheim T

PROVIDER: S-EPMC3225589 | biostudies-literature | 2011

REPOSITORIES: biostudies-literature

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Experiences with general practitioners described by families of children with intellectual disabilities and challenging behaviour: a qualitative study.

Fredheim Terje T Lien Lars L Danbolt Lars J LJ Kjønsberg Kari K Haavet Ole R OR

BMJ open 20111128 2

Objective To investigate parents' experiences of follow-up by general practitioners (GPs) of children with intellectual disabilities (ID) and comorbid behavioural and/or psychological problems. Design Qualitative study based on in-depth interviews with parents of children with ID and a broad range of accompanying health problems. Setting County centred study in Norway involving primary and specialist care. Participants Nine parents of seven children with ID, all received services from an assi ...[more]

PMID: 22123921

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Project description:BackgroundChallenging behaviour (CB) comprises various forms of aggressive and problematic behaviours frequently occurring in children with intellectual and developmental disability (IDD) or autism spectrum disorder (ASD). CB often arises from impaired communication or problem solving skills. It is often met with coercive measure due to a lack of alternative strategies on the part of the caregiver, while it also impacts on the caregivers due to the exposure to physical harm and high levels of stress. Within the ProVIA project we developed a smartphone-based tool for caregivers of children with IDD and/or ASD to prevent and modify CB. The ProVIA app systematically helps caregivers to identify specific causes of CB and provides individualised practical guidance to prevent CB and consecutive coercive measures, thus aiming to improve the health and well-being of the children and caregivers.MethodsIn this uncontrolled open trial we will enrol N = 25 caregivers of children aged 3-11 years with a diagnosis of IDD and/or ASD. Participants will use the ProVIA-Kids app for 8 weeks. During the intervention phase, participants will conduct behaviour analyses after each instance of CB. The app will summarise the identified putative causes for the CB in each situation, and provide recommendations regarding the handling and prevention of CB. Furthermore, the app will aggregate data from all available behaviour analyses and identify the most relevant (i.e., most frequently reported) risk factors. Measurement points are at baseline (T0), after the intervention (T1) and 12 weeks after the end of the intervention (follow-up; T2). The primary outcome is the absolute change in parental stress (EBI total scale) between T0 and T1. Further aspects of interest are changes in CB severity and frequency, caregiver mood, satisfaction with the parenting role (EFB-K total scale) and experienced parenting competence (FKE total scale). Pre-post comparisons will be analysed with paired sample t-tests.DiscussionProVIA is pioneering structured behaviour analysis via smartphone, assessing predefined causes of CB and providing feedback and recommendations. If this approach proves successful, the ProVIA-Kids app will be a valuable tool for caregivers to prevent CB and improve their own as well as the children's quality of life.Trial registrationThe study is registered at https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_IDDRKS00029039 (registered May 31, 2022).

Project description:BackgroundModern palliative care focuses on enabling patients to spend their remaining time at home, and dying comfortably at home, for those patients who want it. Compared to many European countries, few die at home in Norway. General practitioners' (GPs') involvement in palliative care may increase patients' time at home and achievements of home death. Norwegian GPs are perceived as missing in this work. The aim of this study is to explore GPs' experiences in palliative care regarding their involvement in this work, how they define their role, and what they think they realistically can contribute towards palliative patients.MethodsWe performed focus group interviews with GPs, following a semi-structured interview guide. We included four focus groups with a total of 25 GPs. Interviews were recorded and transcribed verbatim. We performed qualitative analysis on these interviews, inspired by interpretative phenomenological analysis.ResultsStrengths of the GP in the provision of palliative care consisted of characteristics of general practice and skills they relied on, such as general medical knowledge, being coordinator of care, and having a personal and longitudinal knowledge of the patient and a family perspective. They generally had positive attitudes but differing views about their formal role, which was described along three positions towards palliative care: the highly involved, the weakly involved, and the uninvolved GP.ConclusionGPs have evident strengths that could be important in the provision of palliative care. They rely on general medical knowledge and need specialist support. They had no consensus about their role in palliative care. Multiple factors interact in complex ways to determine how the GPs perceive their role and how involved they are in palliative care. GPs may possess skills and knowledge complementary to the specialized skills of palliative care team physicians. Specialized teams with extensive outreach activities should be aware of the potential they have for both enabling and deskilling GPs.

Project description:IntroductionApproximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysisA cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and disseminationThe study was approved by the London-Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm's-length bodies and policymakers via publications, seminars and digital platforms.Trial registration numberClinicalTrials.gov Registry (NCT03586375).

Dataset Information

Experiences with general practitioners described by families of children with intellectual disabilities and challenging behaviour: a qualitative study.

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Experiences with general practitioners described by families of children with intellectual disabilities and challenging behaviour: a qualitative study.

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