Autistic Disorders – Was Endocrine Involvement Forecasted?

 

JUNIPER PUBLISHERS-OPEN ACCESS JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITIES

Introduction

Individuals diagnosed with an intellectual disability (ID) demonstrate higher rates of challenging behaviors (CB) than do the general population [1-3]. The literature shows that environmental factors, including negative interactions with others, can contribute to CBs [4-6]. In their thematic analysis of 17 articles on the perspectives of consumers with CBs, Griffith, Hutchinson, and Hastings (2013) found that environmental factors such as “imbalances of power, “experiences of restrictive procedures”, and “impersonal attitudes of support staff” were “accumulative stressors of living in a residential placement” that potentially perpetuated CBs (p. 469). The authors described the “Cycle of Challenging Behaviors” (p. 482) where environments containing consumer-staff relationship imbalances potentially triggered individuals to engage in CBs, which lead to restrictive procedures; these interventions increased the individuals’ dissatisfaction, creating more power imbalances and cyclical patterns that elicited more CBs.

The cycle described by Griffith [7] appeared to highlight transactional relationships between consumers and staff. Linehan [8] defines a transactional relationship as one where “individual functioning and environmental conditions are mutually and continuously interactive, reciprocal, and interdependent”, continually adapting and bi-directionally influencing each other (p. 39). Furthermore, Linehan’s bio-social theory describes how emotional and behavioral dysregulation (i.e. CBs) are created and maintained within transactional relationships between vulnerable individuals and invalidating environments [8]. These negative transactions can “shape and reinforce extreme and coercive behaviors in each other. In turn, these coercive behaviors further exacerbate the invalidating and coercive system, leading to more, not fewer, dysfunctional behaviors within the entire system” [8]. Understanding transactional processes and patterns within consumer-staff relationships may help support providers foster positive versus negative transactions.

There is a wealth of literature studying the experiences and perspectives of staff that support individuals with CBs, but far less has been written from the perspective of individuals who display CB about their relationships with their paid staff, and how the consumer-staff relationships can prevent or trigger CBs. Given the likely transactional nature of CBs, it is essential that the perceptions of consumers about their staff and support environments be central in research aimed at understanding and ultimately reducing CBs. Staff play a vital role in individual lives, potentially offering supports that prevent CBs and conversely contributing to cycles of behavioral deregulation.

Context of analysis

The current paper emerged from a broader qualitative constructivist grounded theory (CTG) study that used focus groups to explore consumers’ perceptions about their relationships [9]. The original study included 30 individuals diagnosed with ID (moderate or mild), at least one mental health diagnosis, and histories of CBs (e.g., aggression, self-injury, sexual offending, and arson) who participated in five, 90-minute focus groups. The participants were current or former clients receiving psychotherapy services at the clinical office/research site. The disclosures about consumer-staff relationships were deemed a salient topic in the focus group interviews that warranted a more focused analysis.

Methods

Constructivist grounded theory

A qualitative design was chosen for this study because it is suited well to the examination of complex, intangible, emotionally charged, abstract, and subjective topics, such as consumer-staff relationships [10]. CGT was used because its mechanisms allow a deeper empirical understanding of complex, co-constructed processes within consumer-staff relationships that may be involved in averting or contributing to CBs. CGT methods (i.e., memo writing, theoretical sampling, initial, focused, and theoretical coding) were used [11]. The research team engaged in memo writing while reviewing the transcript. Researchers wrote memos related to (1) the consumers’ perspectives; (2) the consumer-staff relationships, and (3) their own experiences/knowledgebase relative to the information. In addition, because of the subjective nature and complexity of consumer-staff relationships, it was necessary for the research team to collaborate in data collection and coding decisions to ensure that interpretations were founded.

Participants

The participants were between the ages of 24-67 (M=39.5). Twenty-five were male and five female. Twenty-two participants were White and the remaining six were visual minorities. Twenty of the participants were diagnosed with mild ID and 10 had moderate severity ID.

Recruitment

Institutional Review Board approval was obtained for the study and current analysis. The purposive sample was obtained from an outpatient clinic in an eastern state of the United States. Inclusion criteria for this study included participants who: (1) were diagnosed with a mild or moderate ID, and (2) received support services through the state’s disabilities agency. Thirtyfive individuals diagnosed with mild/moderate ID that the agency served were invited, and 30 participated in this study. Two declined to participate, and three others were excluded because of either acute health or behavioral regulation problems at the time of the study that posed excessive risk. All participants had at least one mental health diagnosis, histories of CBs, and received individual and group therapy to enhance their ability to self-regulate. Twenty-nine participants were supported by eight different private residential providers with 24/7 staff supports; one individual resided in a community living arrangement with one contracted support person.

Informed consent

Prior to the focus groups, each of the participants met individually with the lead researcher/facilitator, who reviewed the informed consent with them. Prior to the focus group, participants were told that the discussion would be related to “relationships.” Each participant received a $20 gift card as compensation for his/her time. The logistical procedures were consistent across all groups. Only the age ranges are reported; pseudonyms were used to protect the confidentiality of the participants and staff.

Data Collection

The focus groups were held during a one-month period with six participants attending each group. The groups were conducted in a small conference room at the clinical office. A clinician at the agency, who also was the lead researcher, facilitated all groups. The facilitator was the individual therapist for three of the participants, as well as, conducted group therapy that several of the participants attended at various times during the courses of their treatments. All thirty participants answered a specific question about their perceptions about their relationships with staff. One participant offered perceptions about staff in response to a general question about relationships. Two participants’s shared their perspectives about staff when asked about a complicated relationship in their lives. The focus group interviews were recorded digitally and the audio files were transcribed verbatim. The facilitator reviewed the transcripts for accuracy. The research team reviewed and discussed the corrected transcripts.

Results

Initial and focused coding

During the initial coding references made by participants about people who worked with them on their residential and/or vocational teams were coded as “consumer-staff relationships”. The term “staff” included direct support professionals, case managers, and administrators associated with their residential and vocational services. Health care professionals were not labeled as staff. Positive and negative processes within consumer-staff relationships were the first categories that emerged during focused coding. Twenty-two participants described positive processes. Positive processes were when the consumers reported having experiences that led to favorable outcomes, affection, safety, respect, and satisfaction. Seventeen participants shared comments that were coded as negative processes. These described dissatisfaction, and conflicts, and a lack of favorable outcomes.

Conclusion

This analysis highlighted the dynamic nature of consumerstaff relationships and examined bi-directional processes that may avert or contribute to CBs. Awareness of these factors may help consumers and those who support them to avoid oversimplifying solutions and encourage the ample allocation of resources to address the challenges that exist within consumerstaff relationships.

Limitations

This was a relatively small study conducted in one region in the eastern United States with a clinical population. Although this specialized sample allowed us to collect rich data related to individuals with ID, mental health issues, and CBs, the small sample size reduces the ability to generalize the findings. The fact that the facilitator had existing therapeutic relationships can be considered a limitation. The facilitator’s dual-role may have influenced the level of adaptive coping that consumer’s articulated. The fact that all of the participants engaged in therapeutic interventions that were designed to improve selfregulation, may have increased the likelihood of disclosures that contained evidence of emotion regulation skills. Alternatively, the enhanced relationships may have offered the unique opportunities that fosters rich data collection that may have not been accessible within less familiar relationships. It is important to note that CGT assumes that there is co-creation of research; the CGT methodologies are designed to manage and optimize empirical data collection and analyses.

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