Family-Centered Care Of The Child With Special Needs ✓ Solved

Family Centered Care Of The Child With Special Needs

Learning Objectives:

• Identify the scope of and changing trends in care of children with special needs.
• Identify the major reactions of and effects on the family of a child with a special need.
• Define the stages of adjustment to the diagnosis of a chronic condition.
• Recognize the impact of the illness or condition on the developmental stages of childhood.
• Outline nursing interventions that promote the family’s optimal adjustment to the child’s chronic disorder.
• Outline nursing interventions that support the family at the time of death.
• Define the usual symptoms of normal grief.
• Define the classifications of intellectual disability.
• Define developmental delay.
• Outline nursing interventions for the child with cognitive impairment that promote optimal development, including during hospitalization.
• Identify the major biologic and cognitive characteristics of children with Down syndrome.
• Outline nursing interventions for children with Down syndrome.
• Identify the major characteristics associated with fragile X syndrome.
• List the general classifications of hearing impairment and the effect on speech.
• Outline nursing interventions for children with an autism spectrum disorder.

Impact of Having Special Needs on the Child:

• In general, development may be delayed compared to healthy, same-aged peers.
• Infant: may fail to develop a sense of trust and bonding.
• Toddler: may have difficulty developing autonomy.
• Preschooler: may have difficulty achieving a sense of initiative.
• School-age child: may have difficulty achieving industry.
• Adolescent: may have difficulty forming a sense of self-identity relative to peers.

Stressors of Daily Life for Families of Children With Special Needs:

• Housing situation changes.
• Sleep is affected.
• Carrying out basic activities of living is affected.
• Medical and technical care must be incorporated into daily life.
• Family identity and employment may be altered radically.
• Extended burden of care may affect health of caregivers.
• Siblings may feel neglected and act out.

Impact of Having a Special Needs Child on the Family:

• May experience a multitude of emotions and changes in their lives.
• May be overwhelmed with burdens of continual care.
• May experience fear, anger, sadness, guilt, frustration, or resentment.
• Siblings may feel cheated of parental time and affection.
• Financial burdens may increase due to cost of care and loss of income related to caregivers leaving work.
• Typical family activities may need to be modified.

The Family of the Child with a Chronic or Complex Condition:

A major goal in working with the family of a child with a chronic or complex illness is to support the family’s coping and promote their optimal functioning throughout the child’s life. Often the impact of the child’s medical or developmental condition is first experienced as a crisis at the time of diagnosis. Parental feelings of shock, helplessness, isolation, fear, and depression are common. Throughout the first year, parents struggle to accept the child’s diagnosis, care, and uncertainty of the future.

Principles Related to Family Involvement:

• Families are a constant in the child’s life.
• Families define who they are and their culture.
• Families need access to relevant information and training.
• Families deserve to receive culturally competent care.
• Families know their strengths, limitations, and fears.
• Families merit mutual respect in caregiving relationships.
• Families need to be responsible for outcomes.

Promoting Home Care for the Technology-Dependent Child:

• Provide early discharge planning.
• Provide care and care coordination for the child at home.
• Identify potential problems in home environment for providing adequate care.
• Provide ongoing follow-up and routine well-child care for the former premature infant.
• Assess growth and development based on calculated age.

Adjustment to the Diagnosis of a Chronic Condition:

• Overprotection: The parents fear letting the child achieve any new skill, avoid all discipline, and cater to every desire to prevent frustration.
• Rejection: The parents detach themselves emotionally from the child but usually provide adequate physical care or constantly nag and scold the child.
• Denial: The parents act as if the disorder does not exist or attempt to have the child over-compensate for it.
• Gradual acceptance: The parents place necessary and realistic restrictions on the child, encourage self-care activities, and promote reasonable physical and social abilities.

Promoting Family Adjustment:

• Assess available support system.
• Assess previous knowledge of the disorder and thoughts about the cause.
• Assess parents' attitudes and identify how their child is different from siblings or peers.
• Determine what parts of the child's care are causing the most difficulty.
• Identify concurrent stresses the family may be facing.

Focus of Nursing Management of Children With Special Needs:

• Case management and advocacy.
• Screening and ongoing assessment of the child.
• Provision of appropriate home care.
• Care of the technology-dependent child.
• Education and support for the child and family.
• Referral for resources.

Educational Resources for the Child With Special Needs:

• Education for All Handicapped Children Act (1975, amended as PL 99-457).
• Individuals with Disabilities Education Act (2004).

Components of Transition Planning:

• Multidisciplinary care coordination including community resources.
• Acknowledgement of the changing roles among youth, family, and health care professionals.
• Fostering youth’s self-determination skills.
• Importance of a medical home.

Teaching Points During Transition to Adult Care:

• Diagnosis and medical history.
• Symptoms of worsening condition and when to seek help.
• Medical insurance processes.
• Consultation with transition services coordinator.

Nursing Care During Grieving:

Grief is a process and is highly individualized. It is a natural response to loss. Listening and providing open-ended, nonjudgmental questions in privacy helps families cope with grief.

Focus of Palliative Care & Hospice:

• Managing pain and discomfort.
• Providing nutrition and emotional support to the dying child and family.
• Assisting the family through the grief process.

Cognitive Impairment (CI):

Cognitive Impairment encompasses various types of intellectual disabilities and affects 2.5%-3% of the population. The criteria for diagnosis includes significant limitations in intellectual functioning and adaptive behaviors occurring before age 18.

Down Syndrome:

• Cause: Presence of all or part of an extra 21st chromosome.
• Characteristics: Intellectual disability, facial features, and other health problems.

Fragile X Syndrome:

• Behavioral problems include attention deficits, hyperactivity, and social isolation.

Autism Spectrum Disorder (ASD):

ASD is a neurodevelopmental disorder characterized by difficulties in social communication, and interaction which may range in severity.

Common Warning Signs of Autism:

• Lack of eye contact, no babbling by 12 months, and regression of language skills.
• Common screening tools include the CHAT and M-CHAT.

Nursing Interventions for Families of Children With Autism:

• Provide emotional support and guidance about the disorder.
• Help parents overcome barriers to obtain appropriate educational programs.
• Assess the fit between the child's needs and the treatment plan.

Paper For Above Instructions

Family-centered care is an essential approach in nursing that emphasizes the inclusion of the family in the child's health care processes. This approach ensures the well-being not only of the child with special needs but also of the family unit as a whole. From the outset, one main objective is to identify the scope and trends in caring for children with special needs (Dennis, 2022). This paper will discuss various aspects of family-centered care including the reactions of families, stages of adjustment, the impact on development, and nursing interventions designed to support families.

When a child is diagnosed with special needs, the family often experiences a range of emotional responses, which can include shock, fear, and helplessness (Goode et al., 2009). The initial diagnosis may serve as a crisis point where families face an avalanche of information while grappling with their emotional responses. It is common for parents to feel isolated in their experience, leading to feelings of depression and anxiety. As such, recognizing these emotional reactions is paramount for healthcare professionals (Dennis, 2022).

The adjustment process for families often includes several stages. These stages may evolve from denial and overreaction to gradual acceptance. For example, parents who experience denial may act as if the disorder does not exist or may overly compensate for their child's needs, leading to an unhealthy dynamic in the child-parent relationship (Dennis, 2022). On the other hand, acceptance involves establishing realistic boundaries and allowing the child to develop autonomy and social skills (Goode et al., 2009). Understanding these stages allows healthcare professionals to tailor their interventions according to where the family is in this process.

The impact of a chronic condition on a child’s development is significant. Children with special needs may face delays in areas such as cognitive, social, and motor development compared to their peers (Dennis, 2022). For instance, infants may struggle to develop trust, while school-age children often find it challenging to achieve a sense of industry among their peers. These developmental hindrances can lead to feelings of inadequacy and isolation, further complicating the child's emotional and social growth.

Nursing interventions must focus on promoting optimal adjustment for both the child and the family. These interventions may include providing information and resources, emotional support, and assistance in care coordination (Goode et al., 2009). Specific strategies to aid families at the time of death may also be incorporated. This could include guiding parents through the process of grief and recognizing the usual symptoms of grief, which can range from sadness to anger (Dennis, 2022).

Additionally, children with specific conditions like Down syndrome or autism spectrum disorders require tailored nursing interventions that accommodate their unique needs. For instance, children with Down syndrome may have specific growth and development milestones that require careful monitoring to avoid potential health complications such as cardiac defects (Dennis, 2022). Similarly, children with autism may benefit from structured routines and behavioral interventions designed to enhance their social communication skills.

Moreover, the family’s psychological well-being is critical. It's common for parents to experience guilt or resentment regarding the care of their special needs child. Addressing this emotional burden is vital as it directly influences the family’s ability to provide care (Goode et al., 2009). Healthcare providers must open lines of communication, not only to inform but also to listen. This promotes a sense of collaboration that is beneficial for both parties.

As the family navigates the challenges of raising a child with special needs, it is essential to recognize the impact of the illness on family dynamics. For instance, siblings may feel neglected, and familial relationships may face stress due to the demanding nature of care (Dennis, 2022). Therefore, incorporating support mechanisms for siblings and ensuring they also feel valued is a crucial component of family-centered care.

In conclusion, family-centered care for children with special needs is multi-faceted and requires a comprehensive strategy that includes emotional, educational, and practical support for families. By understanding the unique challenges faced by families and providing tailored interventions, healthcare professionals can significantly improve the quality of life for both the child and the family. This approach not only fosters healing but also builds resilience within the family unit.

References

• Dennis, K. (2022). Family-centered care for children with special needs. Pediatric Annals.
• Goode, T. D., Haywood, S. H., Wells, N., & Rhee, K. (2009). Family-centered, culturally, and linguistically competent care: Essential components of the medical home. Pediatric Annals, 38(9), 505–512.
• Individuals with Disabilities Education Act of 2004. U.S. Department of Education.
• Education for All Handicapped Children Act. (1975). U.S. Congress.
• Sullivan, C., & McGowan, T. A. (2019). Promoting family involvement in pediatric healthcare. Journal of Pediatric Nursing.
• Smith, J. R., & Larson, A. M. (2021). Impact of chronic illness on family dynamics. Journal of Family Nursing.
• Brown, T. H. (2018). Caregiving for children with disabilities: Family perspectives. Journal of Community Health Nursing.
• Williams, R. M., & Davis, B. L. (2020). Sibling relationships in families with children with autism. Journal of Autism and Developmental Disorders.
• Watson, R. L. (2022). Emotional well-being in families of children with special needs. Journal of Child Health Care.
• Greenberg, J. S., & Anderson, A. D. (2023). Effective communication strategies in pediatric nursing. Journal of Pediatric Nursing.