What Do Parents Expect in the 21st Century? A Qualitative Analysis of Integrated Youth Care

Abstract

Introduction: To provide integrated Youth Care responsive to the needs of families with multiple problems across life domains, it is essential to incorporate parental perspectives into clinical practice. The aim of this study is to advance our understanding of key components of integrated Youth Care from a parental perspective. Methods: Semi-structured interviews were administered to 21 parents of children receiving Youth Care from integrated care teams in the Netherlands. Qualitative content analysis was conducted by means of a grounded theory approach following qualitative reporting guidelines. Results and discussion: Parental perspectives were clustered into six key components: a holistic, family-centred approach; addressing a broad range of needs in a timely manner; shared decision making; interprofessional collaboration; referral; and privacy. Parents emphasized the importance of a tailored, family-centred approach, addressing needs across several life domains, and active participation in their own care process. However, they simultaneously had somewhat opposing expectations regarding these key components, for example, concerning the changing roles of professionals and parents in shared decision making and the value of involving family members in a care process. Professionals should be aware of these opposing expectations by explicitly discussing mutual expectations and changing roles in decision making during a care process. To enable parents to make their own decisions, professionals should transparently propose different options for support guided by an up-to-date care plan.

Understanding Young People and Their Care Providers’ Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis

“…The parents in this research valued the targeted coordination, communication, and support provided by CCP nurses. These benefits of care coordination have been recognised in previous research [5,8]. Healthcare providers discussed the challenges of working with children with multiple healthcare providers, and they found some components of caring for these children easier with a dedicated coordinator, as per previous findings [5,13,29].…”

“…Collecting lived experience data directly from children and young people provides credible and valid information that can allow us to gain insight into their wellbeing, perceptions of outcomes and experiences [19]. It is important to also seek the parents' views in their own right, not just as a child's proxy, as parents have expertise in the everyday care needs of their children, are integral to decision making and participation in their child's healthcare, and are often the first point of contact for the patient [8,[20][21][22]. The power of collecting both parental and child lived experiences means that each lived experience can be examined in their own right and can drive meaningful health service design.…”

“…Evidence from qualitative interviews has highlighted that children and young people with complex health needs require care that is integrated (both within and between primary, second-ary and tertiary healthcare providers and other non-health sectors, e.g. education), and holistic and family-centred [7,8]. Parents often report heightened levels of carer burden as a result of attempting to navigate 'the system' due to lack of assistance in care coordination, communication and/or the necessary education to navigate both child and family care needs [1,3,5].…”

Don’t Forget the Caregivers! A Discrete Choice Experiment Examining Caregiver Views of Integrated Youth Services

“…A recent small qualitative study from The Netherlands examined caregiver preferences in integrated service contexts [ 45 ]. That study found several themes that reflect the current study’s quantitative findings: families wanted rapid access to family-centered, holistic, collaborative services, with smooth transitions, strong privacy policies, and parental involvement in decision making.…”

“…In the current study, caregivers’ prioritization of rapid access to services, when making trade-offs among various service features, comes as no surprise given the long wait times in the field [ 6 ] and the broad literature indicating wait times as a barrier [ 11 , 45 – 48 ]. This finding supports the ongoing development of IYSH models with walk-in or other rapid access models as a key priority as the models are scaled.…”