Parents of children with disabilities' perceptions regarding the quality of interaction with Health professionals working in early intervention: A qualitative descriptive study

Abstract

Aims and ObjectivesThe aim of this study is to explore the perceptions of parents of children with physical disabilities concerning the quality of their interaction with health professionals in early intervention programs.BackgroundDespite the consensus on the need for Patient and Family‐Centered Care, there are still difficulties when executing such care. The quality of interaction among patients, families, and professionals is essential to facilitate the implementation of the programs.DesignA qualitative descriptive study with thematic analysis using a Modified Grounded Theory approach.MethodsData were collected through seven focus groups with 28 parents of children with physical disabilities who were undergoing early intervention programs in three centres. The study followed the COREQ guidelines and checklist.ResultsTwo themes emerged from the experiences: ‘exchange of information and education’, which included all the activities, procedures, exercises and skills taught by the professionals to help parents care for their child; and ‘interpersonal skills’, which focused on the way the professional relates with the child and the parents. Several subthemes emerged within each theme.ConclusionsThis study identified which elements of the professional‐parent interaction are considered by parents when evaluating the quality of their interaction with the health care provider of their children.Relevance to Clinical PracticeThe results of this study bring to light certain behaviours and interactions that health professionals should consider in order to improve the perceptions of parents of children with disabilities regarding the quality of interaction in the context of early childhood intervention.Patient or Public ContributionParents contributed to the data collected. Early intervention professionals were involved in participant checking to ensure the rigour of the study.

The processes and outcomes related to ‘family‐centred care’ in neuromotor and functional rehabilitation contexts for children with cerebral palsy: A scoping review

“…The selected studies were published between the years 1998 to 2022. The population was mostly composed of children with CP, except for two studies that also included, to a lesser extent, children with arthrogryposis multiplex congenita, Down syndrome, Prader–Willi disease, Moyamoya disease, congenital defect, hereditary diseases and developmental delay (An et al, 2019; Morera‐Balaguer et al, 2022). The age range of children included in the studies was from babies to 6 years old, as expected; however, 7 of the 21 studies also included children up to 12 years old (An et al, 2019; Novak et al, 2009; Piggot et al, 2023; Saquetto et al, 2018; Smidt et al, 2020; Terwiel et al, 2017; Wallen et al, 2008).…”

“…Later, the programs incorporated more structured resources such as task‐oriented training (Novak et al, 2009), specific activity training (Raviraj et al, 2014; Wallen et al, 2008), ‘library of ideas’ (An et al, 2019; Novak et al, 2009; Smidt et al, 2020), written home program with photographs (Morera‐Balaguer et al, 2022; Morgan et al, 2016) and reading material and notes (Terwiel et al, 2017) to assist parents in proposing activities and increasing the opportunity for practice (Lammi & Law, 2003; Law et al, 2011; Law, Darrah, et al, 1998; Morgan et al, 2016; Wallen et al, 2008). Exchange of general information about treatment options for the whole family to obtain information, including via family–family contact was also reported (Morera‐Balaguer et al, 2022; Terwiel et al, 2017).…”

“…The main child and parental outcome reported in studies are as follows: improvement in the child's motor function (AIMS, Blauw‐Hospers et al, 2011; /IMP, Hielkema, Hamer, et al, 2020;/ GMFM, Law, Darrah, et al, 1998; Morgan et al, 2016; Snarski, 2021; /Peabody, Morgan et al, 2016), improvement in the child's functional skills (PEDI) (Blauw‐Hospers et al, 2011; Hielkema, Boxum, et al, 2020; Law et al, 2011; Law, Darrah, et al, 1998; Novak et al, 2009; Saquetto et al, 2018), achievement of goals by the child (COPM, An et al, 2019;Novak et al, 2009; Smidt et al, 2020; Wallen et al, 2008; /GAS, Novak et al, 2009; Smidt et al, 2020; Wallen et al, 2008), improvement in the quality of the child's upper limb skills (ADM, Raviraj et al, 2014; /QUEST, Novak et al, 2009), postural development (Van Balen et al, 2019), improvement in the child's cognitive function (BSID, Blauw‐Hospers et al, 2011; Hielkema, Hamer, et al, 2020; Morgan et al, 2016), improved parental quality of life (CBS‐List) (Hielkema, Boxum, et al, 2020), parental empsowerment (FES, An et al, 2019; Hielkema, Boxum, et al, 2020; /interview, Piggot et al, 2023), improved responsiveness and relationship with the baby (questionnaire) (Akhbari Ziegler et al, 2020), parental motivation and engagement (interview, Øien et al, 2010; Piggot et al, 2023;/ questionnaire, Øien et al, 2010), feeling of competence and self‐confidence (interview, An et al, 2019; Morera‐Balaguer et al, 2022; Øien et al, 2010; / questionnaire, Akhbari Ziegler et al, 2020; Øien et al, 2010), trust in the therapist (interview) (Harrison et al, 2007; Morera‐Balaguer et al, 2022), acquisition of knowledge and skills by parents (interview, Harrison et al, 2007; Morera‐Balaguer et al, 2022; Øien et al, 2010; /questionnaire, Akhbari Ziegler et al, 2020) and parental stress and overload (interview) (Pigg...…”

“…In this model, parents were trained to learn to evaluate and identify the restriction on the child's performance of the task and encouraged to discover how to modify the restriction through trial and error (unless they persisted in making mistakes); the focus of the intervention should be on function, including allowing for biomechanical compensations (Law et al, 2011; Law, Darrah, et al, 1998). Later, the programs incorporated more structured resources such as task‐oriented training (Novak et al, 2009), specific activity training (Raviraj et al, 2014; Wallen et al, 2008), ‘library of ideas’ (An et al, 2019; Novak et al, 2009; Smidt et al, 2020), written home program with photographs (Morera‐Balaguer et al, 2022; Morgan et al, 2016) and reading material and notes (Terwiel et al, 2017) to assist parents in proposing activities and increasing the opportunity for practice (Lammi & Law, 2003; Law et al, 2011; Law, Darrah, et al, 1998; Morgan et al, 2016; Wallen et al, 2008). Exchange of general information about treatment options for the whole family to obtain information, including via family–family contact was also reported (Morera‐Balaguer et al, 2022; Terwiel et al, 2017).…”

“…Professional competence, experience and the attitude of seeking information were cited as important by parents in two qualitative studies (Harrison et al, 2007; Morera‐Balaguer et al, 2022).…”