Abstract

The article titled “Families With Special Needs Children” by Caicedo (2014) primarily seeks to investigate the health functioning and care burden of families with special needs children. According to the authors, of the children population present in the United States, 11.2 million of those are children categorized under Children with Special Health Care Needs. Statistically, in every five households, there exist a household with a special needs child. A study was conducted to determine the effects of taking care of a special needs child had on caretaker parents and/or guardians. This document seeks to address the relevance of the presented report to the caretaker parents on their physical as well as mental health; family functioning as a whole and more so on the burden the parents have to endure.

Purpose of the Study

The primary purpose of the study was to uncover the difficulties parents taking care of special needs children were facing and the effects of these difficulties on their overall health as well as the routinely operation of the family unit. Using the Pediatric Quality of Life Family Impact Module, the research questions seek to measure a parent’s physical health under the normal functioning of the body, mental health seek to address cognitive functioning, while the functioning comprises family relationship problems as well as difficulty with routinely family activities.

Study Design

The study design involved undertaking a longitudinal study in which a sample of parents with children with medically complex and medical technology dependent children was randomly selected for interview. To conduct the interview, questionnaires were filled by parents who met the inclusion criteria for the study led by the Principle Investigator of the study. The study design involved face to face interviews or over the phone interviews. Face to face interviews comprised 60 minute interviews that spread monthly over a period of five months. Following an interview, a primary caregiver gave their consent on the collected data after which a follow up interview was scheduled for the next meeting with the same parent. Prior to paying a visit, confirmation telephone calls were conducted to confirm availability. Since the study allowed for over the phone interviews, parents who lived far from the study center ( Florida International University) were interviewed over the phone.

How the Sample Was Obtained

Parents of children with special needs who met the criteria for inclusion into the study and who were willing to participate in the study were presented with the relevant documentation; background, purpose as well as study information to give their consent on the study by site contacts from Florida International University.

Inclusion or Exclusion Criteria Used

A number of inclusion and exclusion criteria were employed in the study. In order yo meet the study’s needs, a selection criterion (inclusion or exclusion) was incorporated to pick the relevant candidates for the study.  Parent inclusion criteria incorporated the primary caregiver to a special needs child. Children with Special health Care needs inclusion criteria picked children aged between 2 years and 21 years old who had multiple complex medical conditions and children considered medically fragile. Parent exclusion criteria singled out CSHCN parents who had mental as well as physical difficulties that hindered them from participating in the study.

CSHCN exclusion criteria did not include children with a single point of focus, i.e. those with a single behavioral or mental difficulty with no other medical condition among them.

Who From the Sample Actually Participated or Contributed Data? Was Sample Size Adequate

Though the study criterion incorporated children as well as parents, only parents provided the data necessary to ascertain the study. The sample size was exhaustive as such, primarily due to the extendibility to which the data collected span. And more so, new challenges were uncovered undertaking this study that previous studies employing similar methodology failed to uncover.

What Methods Were Used to Collect Data

To obtain data from participants, parents who had special needs children filled the Pediatric Quality of Life Family Impact Module questionnaire once every month for a period of five months. Each face to face or over the phone interview lasted for 60 minutes. Primary caregiver was required to give their consent on their physical, mental and family functioning data. The physical data measurements dealt with; tiredness, weakness, headaches and stomach aches, mental measurements calibrated; Emotional (sadness, anxiety, anger, frustration, helplessness and hopelessness), social (isolation, lack of support, lack of time and energy for social activities), cognitive (lack of focus, complexities recalling, and sluggish decision making), communication and worry. Family functioning aimed at measuring complexities undertaking routinely family chores as well as family relationship problems.

Data Analysis Methods Used

With each CSHCN parent’s data obtained, their response was evaluated under the 5-point response scale to determine how much of a problem they felt. The PedsQL Family impact module is a 36 item questionnaire which was divided into three sections to obtain; Total family Impact Score, Parent HRQOL (Health Related Quality of Life) Summary Score and the Family Functioning Summary Score.

Main Findings of the Study

Following the analysis of data obtained from a sample of 84 parents, they displayed to a large extent the following characteristics;

• Fatigue; interviewed parents provided the response of being too tired when getting up in the morning which builds forward to sluggish performance undertaking their routinely chores, and little energy saved for their social activities. Adding up o fatigue was the difficulty finding the time to complete their daily chores.
• Mental exhaustion; parents interviewed felt anxious, angry, helpless and hopeless, and were isolated. Socially detaching them as they felt they were not understood and thus faced a challenge talking to others including their physicians or nurses. Constantly, they worried about their child’s future; effects the medications had on the child, treatments and the impact the child had on the family members, poor communication, and slump decision making as a family.

Credibility of the Study

The findings of the study were to a large extent consistent with similar studies done prior to this study. To a great stride pointing to the credibility of the findings of this study. Needless to say, the findings are exhaustive and as such, detail to a large extent, what was not covered in prior studies. However, the drawback to this study is the limited availability of national data to compare the findings of this study with.