Families With a Chronically Ill Child: Issues and Techniques Presentation

Introduction: Identifying Population

• Population – families with chronically ill children;
• Rationale for selecting this population:

• • They face numerous emotional and behavioral issues;
  • Desire to point to effective intervention;
  • Strive for helping overcome faced challenges;
  • Looking for addressing related social issues.

This research aims at addressing main challenges faced by families with children with chronic illnesses. They make up the population under consideration. The rationale for selecting this group among the others it the desire to address significant social issues related to treating kids suffering from chronic health conditions. The need for social change can be explained by the fact that families with chronically ill children commonly experience numerous behavioral and emotional issues. Therefore, it is critical to identify and describe the most effective family therapy interventions in order to help them.

Common Chronic Illnesses among Children

The concept of chronic illnesses:

• Any condition preventing from regular activities
• Activities: attending school regularly, common childhood activities
• Any condition demanding regular medication intake
• Features: prolonged duration, no complete cure or spontaneous resolution (Compas, Jaser, Dunn, & Rodriguez, 2012)

Examples: diabetes, asthma, cancer, epilepsy, cerebral palsy, mental illnesses (Torpy, Campbell, & Glass, 2010).

Before reviewing efficient intervention practices and family therapy, it is essential to become familiar with the concept of chronic illnesses among children in order to apprehend what is being addressed. In general terms, chronic illness stands for any condition – either physical or mental – that affects regular childhood activities or precludes from attending school regularly and demand regular intake of medication and special treatment. They have several main features, such as prolonged duration and no complete cure or spontaneous resolution. Some of the examples include (but are not limited to) diabetes, asthma, cancer, epilepsy, cerebral palsy, and mental illnesses.

Issues Facing Families

• Common for both mental and physical conditions;
• Caused by need to address treatment needs;
• Related to challenges with integrating treatment needs;
• Associated with failing to manage treatment;
• Immediate issues follow diagnosis stage;
• Become more aggravated over treatment period (Smith, Cheater, & Bekker, 2013).

Regardless of physical or mental chronic condition of a child, most families face the same challenges. They are commonly associated with the need to address specific treatment needs of a kid. However, what is even more critical, they are caused by failing to integrate them properly into family life, thus making it impossible to manage home treatment accurately. In this way, usual challenges follow diagnosis stage immediately and become more aggravated over the treatment period, especially if it is prolonged.

Several main groups of common challenges:

• Economic (increased expenditures due to illness);
• Social (limited social activities and isolation);
• Lack of social support and caring task burden;
• Emotional (sadness and inner pain);
• Psychological (disorders such as depression);
• Communication, especially with a child.

Families with chronically ill kids commonly face several groups of challenges: economic (connected to poverty and increased costs due to the necessity to finance treatment and cover other illness-related expenses), social (isolation and limited social activities because of the need for constant care, lack of social support due to being unaware of chronic diseases, and significant burden of caring task), emotional and psychological (sadness and inner pain as well as more severe conditions, such as depressions), and communication.

Emotional and Behavioral Issues

Except for sadness and depression, involve:

• Impaired coping with stress caused by treatment;
• Ambiguous character of adjustment of treatment;
• Acceptance of a child’s chronic illness;
• Common disturbing thoughts and overall avoidance (Compas et al., 2012);
• Differing satisfaction with outcomes of treatment (Smith et al., 2013).

Except for sadness and increased depression risks mentioned above, there are several other significant emotional and behavioral issues commonly faced by families with chronically ill children. They involve impaired coping with stress and distressing situations associated with prolonged treatment, ambiguous character of adjustment of and to treatment (both improvements and aggravations witnessed), finding it impossible to accept a child’s condition and the need to treat the kid, common disturbing thoughts related to the worrying about the child’s future health and wellbeing as well as overall avoidance when it comes to the necessity to discuss the subject of chronic condition, and differing levels of satisfaction with treatment and its outcomes.

Impact of Emotional and Behavioral Issues

• Most significant impact compared to other issues;
• Associated with emotional burden of care;
• Commonly affect adherence to treatment plans;
• Impact on adjustment of treatment plans;
• Self-isolation of both parents and children;
• Leads to functional disability and impaired outcomes (Compas et al., 2012).

To begin with, it is critical to point to the fact that emotional and behavioral issues are more influential compared to other groups of issues identified because they are associated with the emotional burden of care. Therefore, the common impacts of these issues are the following: changes in adherence to treatment plans and their adjustment, self-isolation, and functional disability that affects treatment and health outcomes.

Emotional and Behavioral Impact of Issues

Overall impact of issues on emotions/behaviors:

• Ignoring child’s needs when adhering to plans;
• Affecting child’s emotional wellbeing by parents’ grief;
• Excessive tensions and changes in family atmosphere;
• Possible aggravations in child’s chronic condition;
• Reliving the past and ignoring the present (Smith et al., 2013).

Still, all of the challenges mentioned above have a significant impact of emotions and behaviors of both parents and chronically ill children. In particular, they directly influence the overall atmosphere in a family due to increased tensions between parents and kids and economic and social burden of care. More than that, emotional burden (specifically, feeling guilty for becoming ill) may affect child’s health and entail aggravations in their condition. All in all, parents tend to relive their past and ignore the present thinking what might have been changed and losing precious moments with their kids.

Essence of Family Therapy

• Specific form of psychotherapy within a family;
• Aims at reducing overall level of distress;
• Offers potential strengthening of family ties;
• Commonly used for addressing stressful situations;
• Focuses on all members affected by a problem;
• Foundation – counseling everyone covered by a session.

There are different techniques aimed at addressing chronic illnesses of a child. One of them is family therapy. It is a specific form of psychotherapy that covers all family members that are affected by a problem or stressful situation – a child and those caring for it. The initial objective of family therapy is strengthening family ties, so it is easier to cope with the problem. The foundation of the approach is counseling.

Role of Family Therapy

• Enhances collaboration within a family;
• Focus on unique context – one family;
• Reviews parental and couple interaction;
• Addresses family strengths and weaknesses;
• Improves knowledge and skills necessary for treatment;
• Lays stress on family and social roles (Pate, 2016).

Family therapy is of significant importance for addressing issues related to treating and living with a chronically ill child. It can be explained by several specific features of family therapy. Firstly, it enhances collaboration between family members, thus potentially improving the effectiveness of treatment. Secondly, it focuses on a unique context – one family with its strengths and weaknesses, particular problems, parental and couple interactions, and family roles. Therefore, it contributes to improving knowledge about the disease and skills necessary for fostering treatment.

• Helpful for enhancing necessary social interactions;
• Valuable for gaining social support;
• Beneficial for balancing emotional burden of care;
• Addressing guilt, sadness, anger, grief, and misunderstanding;
• Essential for relevant management of treatment plans;
• Critical for regulating emotions and feelings.

In addition to factors mentioned above, there are other areas of family therapy criticality. For instance, it is essential for enhancing social interactions and gaining the lacking social support because family members are taught how to increase social awareness about the problems they face. Furthermore, it is valuable for balancing emotional burden of care and generally controlling negative emotions, such as misunderstanding, grief, sadness, and anger. As a result, it contributes to relevant and efficient management of treatment plans and enhances not only child and parents’ emotional wellbeing but also future health outcomes.

Family Therapy for Families with Chronically Ill Children

May be an effective option due to:

• Increased commonality of distress in families;
• Constant challenges connected to ineffective communication;
• Usual inability to seek for necessary social support;
• Failing to manage treatment plans properly;
• Lacking knowledge for treatment management and adjustment.

In case of living with chronically ill children, family therapy may be an efficient choice. This recommendation is connected no only to the overall effectiveness of the method but also its advantages for families facing this problem. In particular, it is associated with the significant opportunities for addressing such issues, as increased commonalities of stressful situations, ineffective communication, failing to receive necessary social support and the lack of knowledge for managing and adjusting treatment plans properly.

Treatment Modalities for Chronically Ill Children

Treatment modality stands for treatment options.

In case of chronically ill children, involves:

• The presence of parents – emotional connection (Classen, 2012)
• Therapeutic interventions involving medications and tests
• Psychological interventions, including therapies:

• • Therapies may be collective and single-focused.

In general terms, the concept of treatment modalities involves different options that are selected based on patient’s condition and needs. In case of chronically ill children, there are several types of efficient treatment modalities. For instance, emotional connection established by parents’ presence is commonly perceived as a modality. More than that, there are therapeutic interventions, such ass regular laboratory tests and continuous medication intake. Finally, there are different family therapies that may focus either on one or several or family members. The choice depends on specific features of a particular family.

Family Therapy as Treatment Modality

• One of the most effective modalities;
• Focus on either all or one family member;
• Different types of family therapies:

• • Play therapy mainly for ill children;
  • Conjoint therapies for children and parents;
  • Couple therapies for parents only.

Family therapy is usually perceived as the most effective treatment modality in case of families with chronically ill children. It is generally associated with an opportunity for selecting the focus of the therapy – either one family member or several people. Based on it, there are different types of family therapies. Some examples include play therapy for chronically ill children, couple therapies for parents only, and conjoint therapies for both children and parents.

Objectives of differing family therapies:

• Play therapy improves children’s understanding of their condition:

• • Enhances communication skills for sharing needs.

• Conjoint therapy fosters family roles:

• • Improves the overall atmosphere in the family.

• Couple therapy betters social and parents’ interactions:

• • Helpful for learning to address child’s needs.

Based on the type of family therapy, there are as well different desirable outcomes of each of them. For instance, play therapy is valuable for enhancing child’s understanding of their condition so that they do not feel guilty or depressed for being ill as well as improving communication skills in order to share their needs relevantly so that treatment plans are accurately adjusted and managed. Conjoint therapy is critical for bettering the overall atmosphere in the family and reducing the level of stress as well as enhancing the performance of family roles necessary for adhering to treatment plans. Finally, couple therapy is essential for reducing distress between parents and, as a result, helping them improve social interactions to obtain necessary support and learn to address child’s needs.

Selecting Family Theorist

• Selected theorist is Betty Neuman;
• Approach under consideration – health care systems model;
• Relevance for family therapy:

• • Viewing a family as a system;
  • Perceiving parents as a system;
  • Understanding a patient as a system.

For the purposes of this research, Betty Neuman was selected as a theorist of particular interest. Even though she was not a family theorist, but was a nursing researcher, her approach – heath care systems model – is still appropriate in case of treating families with chronically ill children. The rationale for this assumption is the belief that all a family as a whole, an individual patient, and both parents can be viewed as systems. As a result, the approach may be helpful for identifying system malfunctions and addressing them properly.

Techniques Offered by the Theorist

In the theory, Neuman offers following techniques:

• Estimate a patient’s internal and external environment;
• Pay specific attention to significant stressors;
• Focus on controlling identified stressors;
• Assess both physical and emotional stressors;
• Identify and incorporate relevant environment stimuli (Khatiban, Oshvandi, Borzou, & Moayed, 2016).

Neuman’s theory centers on several major techniques. All of them are related to the environment of separately taken systems – families, patients or parents. The first technique is the assessment of an internal (emotional) and external (economic, physical, and social) environment with the aim of identifying stressors. Stressors can be either physical (heat, light, air, etc.) or emotional (communication, feelings, etc.). Another technique is the stress on controlling them. In this case, both emotional and physical stressors should be considered. Finally, it is advisable to locate and incorporate relevant environmental stimuli, such as holiday, music or entertainment necessary for reducing the impact of stressors.

Techniques Offered by the Theorist: Case of Families

• Initial stage – a comprehensive family evaluation;
• Objective – to identify values and communication patterns;
• Next phase – identify significant stressors (physical/emotional);
• Determine malfunctioning domain and address it;
• Work with a family – identify stimuli;
• Stimuli designed as family-based interventions (Khatiban et al., 2016).

Neuman’s system model can be applied to a particular family with chronically ill children. The set of techniques is very close to that identified in the previous slide. Still, some specifications are necessary. The initial stage of working with family is assessment of the overall environment in a family and family as a whole in order to identify values, communication patterns, and its functioning. Subsequent one is locating the major physical and emotional stressors, such as depression, the lack of support, inadequate living conditions, etc., that affect the quality of treatment. Another technique is the determination of existing malfunction – area of the most significant impact of stressors – and designing intervention – environmental stimuli – for decreasing their impact.

Effective Family Therapy Interventions

• Common choice for these families – psychological interventions;
• Developed for both parents and children;
• Directed at three different targets:

• • Parents only;
  • Parents and children;
  • Children only (Ecclesto, Fisher, Law, Barlett, & Palermo, 2012).

There are numerous therapy interventions. However, psychological family interventions are considered to be the most effective ones. The y are developed based on the individual specificities of both parents and children and as a result of a comprehensive family assessment. Therefore, just like all family therapies, they are focused on three different targets: parents only, children only, and both parents and children.

Objectives of psychological family therapy interventions:

• Enhance behavioral patterns of parents;
• Improve behavioral patterns of ill children;
• Avoid the risks of mental disorders;
• Contribute to mental wellbeing of parents and children;
• Better the overall functioning of the family (Eccleston et al., 2012).

Regardless of the focus of a family therapy intervention and its design, all of them are developed in order to achieve several critical objectives. These aims center on behavioral and emotional changes in the family under consideration. That being said, the main goals include (but are no limited to) the overall enhancement of parents and children’s behavioral patterns, especially eliminating behaviors that are related to impaired treatment outcomes and stimulating those connected to improved outcomes. Another common objective is avoiding the risks of mental disorder that, in most cases, are significant. All in all, these interventions aim at bettering the overall functioning of the family and making a contribution to the mental wellbeing of parents and children.

Except for psychological interventions, there are:

• Knowledge-based interventions for enhancing knowledge;
• Communication-based interventions for improving communication skills;
• Ecological for bettering family environment (Anderson & Davis, 2011; Tuerk, McCart, & Henggeler, 2015).

In addition to objectives mentioned above:

• Decrease risks of undesirable outcomes.

In addition to psychological family therapy interventions, there are several other types of family therapies commonly deployed for when working with families with chronically ill children. Some of them are educations – those aimed at improving the overall level of knowledge connected to chronic illnesses and treating them effectively. Other interventions center of communication, so their goal is to help develop effective communication skills and help share needs and well as explain specificities of treatment plans to children. Finally, there are the so-called ecological interventions that aim at enhancing the general family atmosphere and do not deal with other issues. Still, the objective of all of these interventions is to decrease risks of undesirable outcomes in addition to supplementing those mentioned before.

Results of Web Search

• Selected website – IG Living!
• Website of a patient care magazine;
• Offers numerous valuable sources for enhancing knowledge;
• Valuable for developing family practices;
• Reviews impact of chronic health conditions;
• Useful for improving family life and bonds.

As a result of Web search, the website of a patient care journal was selected for analysis. Initially, it is valuable because of the narrow focus on patient care. In this way, the website is beneficial for enhancing parents’ care for children with chronic illnesses. More that that, it is a source of knowledge regarding chronic diseases, their impact on family life and bonds, and ways to address them without asking for outside help – psychological or other interventions.

Special attention paid to coping strategies:

• Those focused on relationships (couple and parents-children)

Some examples:

• Open communication between parents and children;
• Offering support to each other;
• Seeking for external social support;
• Share responsibilities and integrate treatment (Lawrence, 2012).

Still, the website is valuable due to the special focus on coping strategies. Because the main challenge is stress, coping is essential for making treatment more effective and addressing other issues. Some of the effective coping strategies include working on making communication open either between parents or between parents and children, offering support to each other or seeking for additional external social support, and sharing responsibilities, so it is possible to integrate treatment plan requirements into family’s common everyday activities (Lawrence, 2012).

SAMHSA-HRSA Center to Integrated Health Solutions

Focus on integrated care model:

• Connection between pediatric care and mental health;
• Coordination of physical and behavioral health;
• Increasing volume of necessary information;
• Combination of medical and behavioral interventions;
• Timely screenings and enhances home care (Gruttadaro & Markey, 2011).

Integrated care model is perceived as the most effective option for families with chronically ill children. This assumption is based on several specific features of the model. To begin with, it draws connection with pediatric care and mental health. From this perspective, special attention is paid to simultaneous coordination of behavioral and physical health development and changes in any determinants of these two aspects of health. In addition, this model focuses on increasing awareness about chronic health concerns and ways to address them properly. Finally, it promotes timely screenings and enhancement of home care, thus potentially improving health outcomes.

Relevance of integrated care model:

• Significant potential benefits of applying it:

• • Increased public awareness = adequate social support;
  • Focus on mental health = decreased stress;
  • Normalizing mental health = emotional wellbeing;
  • Increased knowledge = more effective treatment adjustment.

All in all, relevance of the integrated care model is connected to its potentially significant benefits. First and foremost, it is associated with increased public awareness about chronic illnesses and the need for treating them, so the issue of the lack of social support is properly addressed. Furthermore, it focuses on mental health, thus decreasing the overall stress, and normalizing mental health, thus making a contribution to emotional wellbeing of both parents and children. Finally, special attention is paid to increasing knowledge that is inseparable from effective adjustment and management of treatment plans, thus enhancing health outcomes.

References

Anderson, T., & Davis, C. (2011). Evidence-based practice with families of chronically ill children: A critical literature review. Journal of Evidence-Based Social Work, 8(4), 416-425.

Classen, C. F. (2012). Pediatric palliative care – the role of the patient’s family. World Journal of Clinical Pediatrics, 1(3), 13-19.

Compas, B. E., Jaser, Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8(1), 455-480.

Eccleston, C., Fisher,E., Law, E., Barlett, J., & Palermo, T. M. (2012). Psychological interventions for parents and adolescents with chroni illness. Cochrane Database of Systematic Reviews, 15(4), 1-172.

Gruttadaro, D., & Markey, D. (2011). Integrating family health and pediatric primary care. Web.

Khatiban,M., Oshvandi, K., Borzou, S. R., & Moayed, M. S. (2016). Outcomes of applying Neuman system theory in intensive care units: A systematic review. Critical Care Nursing, 9(4), 1-7.

Lawrence, E. (2012). The impact of chronic illness on the family. Web.

Pate, T. (2016). Families of children with chronic illness and the relational family model, The Person and the Challenges, 6(2), 57-65.

Smith, J. Cheater, F., & Bekker, H. (2013). Parents’ experiences of living with a child with a ling-term condition: A rapid restructured review of the literature. Health Expectations, 18(4), 452-474.

Torpy, J. M., Campbell, A., & Glass, R. M. (2010). Chronic diseases of children. JAMA, 303(7), 682.

Tuerk, E. H., McCart, M. R., & Henggeler, S W. (2015). Collaboration in family therapy. Journal of Clinical Psychology, 68(2),168-178.