Parents’ Challenges and Needs after Inpatient Intensive Functional Rehabilitation Treatment of their Child with a Physical Disability

Reaching the highest form of independency and increasing
independent capabilities is the most important goal regarding...

Introduction effective compared to the regular long term care [1][2][3]. Evidence shows that significant short term results can be achieved, due to high intensive therapy [3,4]. For example: gross motor abilities, walking endurance, and upper-extremity abilities improved and remained improved after three months follow-up. Short intensive therapy is often provided during inpatient rehabilitation programs. 'FITcare4U' is an example of an functional intensive inpatient rehabilitation program and will be used for this research. FIT stands for 'Functional Intensive Therapy. FITcare4U is based on the principles of the Hand-Arm Bimanual Intensive Therapy Including Lower Extremities (HABIT-ILE) in Cerebral Palsy and translated to the Dutch rehabilitation situation for adolescents with all kind of motor disabilities and focus on mobility and self-care [4].
The main goal of FITcare4U is to empower adolescents with a disability in a very intensive and short treatment period, to reach their maximum potential concerning independency in a more effective manner [4]. Whether the main goal of an inpatient program is physical or mental improvement, positive short term effects are found in several studies. For example, when comparing inpatient rehabilitation programs with inpatient programs in which the population consists of adolescents with diagnosis in the psychiatry spectrum, recent research also shows positive short term(within 2 months) effects (aged 13 -18 years) [5]. In addition, a short intensive program for adolescents with a wide array of mental health diagnosis by Hepper and colleagues (2005) also showed benefits in the development of coping strategies, sense of own agency and positive experiences in containment in a controlled environment [6]. Even though the effects in these short intensive programs are positive, recent research shows that achieved improvements may deteriorate over a longer time period especially when returning to the same environment as before the intervention [7,8].
It seems that once children/adolescents return home, the risk exists that it is difficult for them to continue the newly acquired knowledge and skills. This could have implications in terms of their subsequent development , for example their self-esteem and self-image [9]. It is possible that the high level of support during inpatient programs make the transition back home challenging, given that the same resources: time, pedagogic knowledge and therapeutic understanding are not typically available in the home environment [5]. It seems that parents are not fully equipped to facilitate and empower the children with regards to their new skills and possibilities. It also seems that the inpatient programs focus primarily on the adolescent in their treatment while opportunities arise regarding a systemic cognitive guidance program for parents.
To adapt to the newly learned skills in the home environment, a healthy family stress level is needed, in order to have enough space mentally to react adequately as parents [10].
This stress is the accumulation of aspects in several domains, for example: care tasks, work, social life, family matters. To our knowledge, it is still unknown what the perspective of parents is with regard to the experienced stress once adolescents return home following discharge and how many support parents receive. The purpose of this study was first to explore the parents' perspective on challenges and needs when their child returns home after an inpatient rehabilitation program. Second to gain insight in the needs of parents to maintain the positive results of the program in the long term. Understanding these challenges and needs is a vital step in the guidance of families during and after an inpatient rehabilitation program, which may lead to less deterioration of the learned skills over time.

Study Design
Semi structured interviews were performed to explore the challenges and needs of parents, regarding their child's transition from FitCare4U inpatient program to home, in a subjective nonquantifiable way [11].

Setting and Participants
Parents of adolescents who participated in the inpatient program FitCare4U at Adelante rehabilitation centre were asked for consent to use the interviews for this study. The adolescents enrolled in the inpatient FitCare4U program if they had specific goals regarding the development of independent capabilities. Both parents and caretakers (when possible) participated in a parent program as part of their child's treatment. The parents of the participating adolescents were eligible to participate in the study if: (1) The adolescents lived with their parents/caretakers, (2) The adolescents were between eleven and nineteen years old,

The Program
FITcare4u is a short functional intensive inpatient program that aims to empower children and adolescents with a disability, to reach their maximal potential in independent capabilities and stimulates the development of self-efficacy due to experiences of success [4]. It is used to provide a boost in mastering independent capabilities, developing confidence and self-efficacy. The inpatient  Table 1 gives an impression of a parent day: (Table 1).

Procedure
Intervention and assessments were part of the regular functional intensive treatment program in Adelante Centre of Pediatric Rehabilitation in the Netherlands. All parents were informed about the aim of study and the interview procedure before the start of the inpatient program and approved their participation regarding the interviews. If possible, both parents participated in the interviews and no preparation was needed before the interviews. After prior to the interviews. All data was anonymized and documented. The interviews were conducted during the 'parent weekends' in the last weekend of the program.

Semi-Structured Interviews with the Parent Couples:
A general interview guide with important themes/topics was designed to ensure that the same general areas of information are collected from each interview [12]. This interview guide was based

Data Analysis
The data collected from the interviews were analyzed with directed content analysis [15]. First, the transcripts of the interviews were read and important text fragments that related to the research questions, were marked. Secondly, the text fragments were coded via the 'a-priori' method. This method typifies itself by using a conceptual framework that is designed to make an inventory of codes the researcher expects to find in the interviews [16]. The conceptual framework used in this study was based on the theory of 'De Mönninck, 2010', 'van der Ploeg & Scholte, 2008' and 'Schreurs, et al. 1993'. The conceptual framework was translated into the topics given in Figure 1: These topics were initially used as coding scheme. Coding proceeded until no new codes and topics emerged and analytical data saturation occurred. To interpret the data, a consensus approach was used. The first author took the lead in the analysis. A second person who was a psychologist analyzed a subset of the transcripts. After this, modifications to the labels and clustering of themes were made before establishing a final set of codes ( Figure 1).  Parents struggled with empowering their child to show behavior that would benefit their independency. One could argue that all parents face these challenges, but this example distinguishes itself from a non-disabled child by showing that next to a decreased intrinsic motivation, a lack of intelligence of the child and the overestimation of the child's capabilities by parents, can increase complexity in the interaction of parents with their child. It is therefore important that parents learn the difference whether a situation is caused due to a lack of motivation or possible other factors.

Needs:
The parents were convinced that parental extrinsic motivation would not be as effective as the extrinsic empowerment applied by strangers during the inpatient program. 'I believe that children are more obedient to strangers than me as a mother for example. I don't know why this is the case, maybe because they feel that they can be themselves around me without significant consequences?' (mother of daughter of 17).This lead to the parents' believe that in order to prevent relapses once the child returns home, help from professionals is needed to cope with the empowerment of their child. Nine out of the 16 parents believed they could use pedagogic tips for empowerment of their child once they returned home. Some parents would like to receive only information, while other parents were more interested in outsourcing this information and make use of professional help when they returned home. Communicating your feelings, thoughts and expectations from mother to the father and the other way around, was perceived as helpful and would lead to more clarity for the child. In addition, it would also prevent that the child benefits from this un-clarity to refuse to do not likeable activities.

Parent Roles and Interactions between Parents
One mother stated :"My husband is by nature more patient and softer in his approach, this forces me to be more decisive. In other words, a third recommendation is to actively monitor progress and provide guidance up to six months after the inpatient program [7]. in order to prevent relapses [17].

Behavior Regarding Independent Capabilities'
Parents struggled with empowering their child to show behavior that would benefit their independency in the future. Sometimes to feelings of loss of the 'ideal child' and his or hers capabilities [18]. For example: disappointments that their child can not follow regular education, disappointments that some children will never experience paid employment and disappointments that some children will never live fully independently in their own house without professional guidance. Therefore, nurturing the 'grieving process' of parents is vital to prevent relapses.
In addition to this, even though the studies from Bleyenheuft,

'Parent Roles and Interactions between Parents' was
Identified as the Fourth Challenge.  Lastly it is important to keep monitoring and guiding parents after discharge of the child in order to prevent relapses on a parent and child level. The mentioned challenges will be ongoing processes for parents in guiding their child to independency and should be subject of inpatient programs and regular care afterwards. Further research is required to measure the identified challenges before the inpatient program and three months after the inpatient program .
This can give more insight on the effectiveness of the interventions during this period.

Disclosure of Potential Conflicts of Interest
There are no conflicts of interest to report.

Informed Consent
Informed consent was obtained from all individual participants included in the study and approval of the ethical committee was not necessary due to the fact that the study was part of the usual care.