Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities

Jansen, Suzanne; Putten, Annette van der; Vlaskamp, Carla

doi:10.1177/1744629516641843

Cited by 17 publications

(24 citation statements)

References 15 publications

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“…This highlights the need for health professionals to allow space for parental contribution and to be proactive in supporting parents to develop the confidence and competence they need to feel empowered to take on the responsibility for shared decision-making. This is supported in the literature where it has been reported that parental empowerment can be facilitated by health professionals validating and respecting parents' opinions and existing knowledge (Gates et al, 2018;Hurtubise and Carpenter, 2017;Roscigno, 2016), by listening to parents (Kruijsen-Terpstra et al, 2016) and by actively acknowledging parents as partners (Jansen et al, 2017).…”

Section: Introductionmentioning

confidence: 73%

Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?

Reeder

Morris

2020

J Child Health Care

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The purpose of this article is to offer an improved understanding of how parents of children with long-term disabilities are empowered to successfully take up their role as decision-making partners in the design and delivery of the care of their child. The intention is to stimulate dialogue, encourage reflection and provide practical suggestions for health professionals working with children and their families. The reported findings are from a study which was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which comprised 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service Trust. A novel model, explaining how the power im/balance and the perceived state of the therapeutic relationship influence how successfully a parent takes up their position in the collaborative partnership, is presented and discussed. It is suggested that by thoughtfully addressing the traditional hierarchy that exists within healthcare, health professionals might facilitate the development of a ‘truly’ therapeutic relationship, which can help promote parental empowerment.

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Section: Introductionmentioning

confidence: 73%

Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?

Reeder

Morris

2020

J Child Health Care

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“…Despite being surrounded by logical and human assistance, the impact of PLH on the social, psychological, and physical conditions, and consequently on the quality of life (QoL) of parents is considerable. While some studies have explored the QoL of parents who have children with cerebral palsy [8], few data are available for parents of individuals with PIMD [9,10]. Despite the acknowledged need to consider caregiver experience issues, there are no data about caregivers of PLH individuals.…”

Section: Introductionmentioning

confidence: 99%

Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study

et al. 2019

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BackgroundPolyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents’ QoL.MethodWe conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.ResultsThe QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents’ QoL were financial issues, health status, and coping strategies. The PLH individuals’ health status was not associated with parents’ QoL.ConclusionsSome QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.

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“…These families have faced a rise in local and global interest in the last two decades, which could be considered as intrusive or liberating. The nurse and psychologists who provided continuity outside of the clinic settings, or even in the family home, where able to act as information exchange agents acting in an advocacy role similar to other teams outside of DSD (Jansen, van der Putten, & Vlaskamp, 2016).…”

Section: Discussionmentioning

confidence: 99%

Exploring stakeholder experiences of interprofessional teamwork in sex development outpatient clinics

Sanders

Edwards

Keegan

2017

Journal of Interprofessional Care

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Adopting an interprofessional team approach to care of the child with rare conditions that can affect sex development (DSD) has been advocated by a consensus document within the last decade. In the United Kingdom, the approach appears orientated towards an interprofessional model with the integration of separate professions working in single consultations with families working collaboratively to focus on care using a person and family-centred lens. This concurrent mixed-methods UK study using questionnaires, observation, and interviews aimed to examine professionals', patients', and parents' expectations and interactions during DSD clinic. In adapting a model of patient and family-centred care, we were able to analyse the dimensions of care at the micro-, meso-, and macro-level. The micro captured the unique nature of the bio-psychosocial aspects of DSD, professional capabilities, and communication. The meso examined shared learning and objective setting as well as aspects of knowledge translation. The macro focused on the operational aspects and the emancipatory knowing embedded within DSD care. Complete data from participants (n = 105) were analysed from 47 outpatient clinical consultations and are reported as numerical data, tables, and participants' voices. Interestingly, all participants identified topics or concerns that were absent in the dialogues during consultation. Our findings informed the adaptation of a patient-focused model, thereby supporting the development of the concept of patient-centeredness, integration, and collaboration. This framework may serve as a platform, embedding existing evaluative tools and acknowledging the patient and professional partnership necessary in DSD care. ARTICLE HISTORY

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Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities

Abstract: Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.

Cited by 17 publications

References 15 publications

Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?

Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?

Impact of severe polyhandicap on parents’ quality of life: A large French cross-sectional study

Exploring stakeholder experiences of interprofessional teamwork in sex development outpatient clinics

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