ABSTRACT
This paper describes the Wellness in Chronic Care (WCC) model, an innovative integrative clinical intervention method aimed at helping social workers manage the care of patients living with chronic illnesses and their families. The goal is to propose appropriate clinical responses to the changing reality of the health system. This new reality poses new challenges that require caregivers (social work practitioners and family members) to develop suitable skills and expertise. The intervention method we developed offers a new paradigm that entails partnership and the need to assume responsibility in decision-making while coping with the illness over time. The intervention provides practical tools and methods for coping and managing the illness. These factors have contributed to building a specifically tailored intervention program for patient and family care to achieve an effective and meaningful wellbeing. An assessment of the training program of the intervention model and its implementation is presented. The model was found to be essential yet some found it difficult to make the needed changes.
Illness is an existing fact. It is an inseparable part of life and constitutes a major event in the universal life stories of individuals and their families. This paper describes an integrative clinical intervention model aimed to deal with the changes that occurred in the health system, in order to manage living effectively with chronic illness. The objective is to help social work practitioners and family caregivers propose appropriate responses to the needs of patients and families and to promote their wellbeing within the dynamic changes in the health system today. These changes revolve around two main axes. The first entails biotechnological-medical developments that have extended human longevity while reducing the length of hospital stays. As a result of these developments, serious illnesses have now turned into chronic illnesses. People live longer and remain at home for years, where they must cope with numerous medical limitations and psychosocial changes while remaining dependent on others that may cope with compassion fatigue. Hence, the second axis revolves around the orientation of the community with respect to caring for people with chronic illnesses through long-term care provided mainly by the family. These new directions present new challenges for social work practitioners and family caregivers. Currently, the number of hospitalization days for short-term treatments is diminishing, leading to the need for short-term treatment in the hospital. Moreover, extended longevity has contributed to the need for long-term treatment among patients coping with chronic illness, and maximum responsibility for this has been passed on to family members who must take on the role of caregivers.
Illnesses in general, and chronic illnesses in particular, engender ongoing stress that often disrupts many aspects of individual and family life. Adapting to illness is multifaceted and complex, and requires the individual to cope with many changes in all life systems. According to many studies, as the family support system becomes broader, the patient and the family are able to cope more effectively with the illness (Feigin et al., Citation2008; Grapsa et al., Citation2014; Martire & Helgeson, Citation2017; McDaniel & deGruy, Citation2014; McDaniel et al., Citation2004; J. Rolland, Citation2018).
Nevertheless, the accelerated and ongoing efforts of primary caregivers, whether family members or practitioners, over time are liable to diminish their ability to care for the patient. The efforts they invest constitute fertile ground for developing what is known as compassion fatigue, a condition marked by exhaustion, burnout, and negative emotions. Thus, both the social work staff and the primary caregivers in the family find themselves caught between tension and burnout on the one hand and resilience, emotional and physical strength on the other (Figley, Citation2002; Goetz et al., Citation2010; Neff, Citation2003; Pardess, Citation2015).
In response to these new trends in the world of medicine, the writers of this paper conceived the Wellness in Chronic Care (WCC) model, a clinical treatment intervention method, that is intended to meet today’s challenges in treating patients and their families. The model is designed to provide social work practitioners and family caregivers with the skills, tools and expertise necessary for effective management of chronic illnesses under the circumstances of life today (McDaniel & deGruy, Citation2014; J. Rolland, Citation2018; Ruddy & McDaniel, Citation2013).
The wellness in Chronic Care (WCC) model
The model is an integrative clinical intervention that constitutes a therapeutic method. The integrative combination of three approaches has yielded innovated strategies and different options for managing illness effectively. The three existing theoretical approaches are: the biopsychosocial and family approach, the wellness community approach, and the coaching approach.
The biopsychosocial and family approach was proposed by Engel who called attention to the need for a broad holistic view. Claiming that in order to facilitate recovery, the medical staff should relate not only to the illness but also to the person who is ill as well as the entire family (Engel, Citation1977). Engel proposed a biopsychosocial perceptual framework based upon systems theory. Accordingly, the biological (physical), psychological (mental) and social systems are intertwined and take place simultaneously (Engel, Citation1977, Citation1980). This approach is used by social workers in helping patients and families cope with complex psychosocial situations and issues. In addition, it led to the theoretical and clinical development of family health therapy (McDaniel et al., Citation2004; McDaniel et al., Citation2013; J. Rolland, Citation2018; J. S. Rolland, Citation2015).
The wellness community approach (TWC) was established by Benjamin (Citation1995) to enable patients and caregivers shift from victims to victors. Benjamin proposed the “patient active” concept following three principles: 1) fighting for recovery; 2) taking an active role and responsibility in the struggle for recover; 3) being part of an extended family that provides a sense of emotional support (Benjamin, Citation1995; Feigin et al., Citation2008; Grapsa et al., Citation2014; Martire & Helgeson, Citation2017; McDaniel & deGruy, Citation2014; McDaniel et al., Citation2004; J. Rolland, Citation2018; Thibodeaux & Golant, Citation2007).
The coaching approach. This approach includes a positive attitude which entails focusing on the positive components in the lives of patients and their families. Moving from the current situation toward achievement of the desired situation, placing emphasis on self-management of the illness, and empowering communication, all while using training tools (Seligman, Citation2002).
The model is based on the positive psychology movement, which emphasizes successes and focuses on identifying positive dimensions in the lives of patients and families so as to make life meaningful (Peterson et al., Citation2007; Seligman, Citation2002). The uniqueness of this intervention model lies in its ability to offer a structured and friendly method, while providing practical tools and options for self-management of the illness
From theory to practice
The WCC model focuses on identifying positive dimensions, such as strengths, aptitudes and skills, and on recruiting these for managing life in the shadow of illness. Moreover, the model generates a dialogue of partnership in which patients and their families actively take responsibility for managing and coping with the illness through therapeutic and healing processes over time. On the one hand, the model facilitates introspection (the “being”), while on the other hand it allows patients and family members to set achievable goals and activities (the “doing”).
The intervention structure encompasses three content areas that the professional literature and our extensive clinical experience have shown to be major factors in enabling patients and their families cope effectively with chronic illness: the three content areas are illness perception, family network support, and establishing a life routine (Benjamin, Citation1995; Feigin et al., Citation2008; McDaniel et al., Citation2004, Citation2013; Rolland, Citation2015, Citation2018; Walsh, Citation2011).
Illness perception
Illness perception entails examining what the patient and the family know about the illness and its treatment, the causes and the implications of the illness. The extent to which the patient and the family agree on the illness perception and the extent of their ability and desire to receive information. Patients and their families can be encouraged to examine their knowledge by means of questions such as “What do you know about the illness and its causes?” or “How do your family members generally respond to your illness?” The answers usually shed light on the social culture and family narrative, including beliefs and values that are likely to influence coping methods and behavioral patterns regarding the illness.
Family network
The family-social support network focuses on expanding the circle of family members in caring for the patient in order to ease the emotional and practical burden of the primary caregiver. On examining patterns of seeking and receiving help from family members and others, and on learning how to recharge one’s batteries to gather strength. The objective of creating a family-social network is to share the emotional and practical burden of caring for the patient and in addition mapping family resources as well as the division of roles in the family.
The intervention is based on the assumption that the primary caregivers devote major efforts that serve as fertile ground for developing negative feelings. This raises several questions: To what extent do primary caregivers have experience asking family members or others for help? To what extent are they able to find time for themselves to gather strength.
From a different perspective, it is also possible to stimulate other family members to participate in caring for the patient. Instead of considering help in terms of a burden, they can also think of it as an opportunity for a rewarding emotional experience in which they give of themselves to the patient and/or to the family caregivers and can become then closer in their relationship.
Life routine
The model advocates building a daily routine that combines medical treatment of the illness with routine activities, such that patients can resume as many of their former tasks as possible and gaining new tasks. The intervention objective is to determine a plan to resume personal and family functioning, in a way that integrates daily activities with meaningful quality of life. The intervention is designed to plan a routine that is realistic and agreed upon by the patients and their families. During the intervention, the social workers examine the tasks required of patients and their families as well as the extent to which they agree about how to perform them. The intention is to engage in self-management of the illness by implementing and maintaining the necessary changes in lifestyle (Martire & Helgeson, Citation2017).
The intervention structure and creation of a framework
When patients and their families are faced with illness, their world and their family life become emotionally disturbed and turbulent. This is especially true today, when reality dictates the need to take responsibility and become a partner in managing the illness of family members. Consequently, a great deal of pain, insecurity, and helplessness can seep into family relationships. This forms the rationale for developing an intervention structure and creating a framework model that constitutes a basis for possible therapeutic action that can help organize rather than disperse the process. Our experience shows that the structured intervention can be implemented on the individual, family and group levels and that it offers a non-categorical approach that facilitates building both short-term and long-term intervention programs with varying diagnosis.
The intervention model is based on the following assumptions: 1) It offers a uniform structure for all types of illness and all stages of the life cycle. 2) The intervention structure continually refers to the movement from the current situation toward the desired objective in accordance with setting goals, while at the same time providing practical tools and options for self-management of the illness. 3) The intervention is based on asking questions that allow for observation and recognition of skills, abilities and resources, as well as choices of a preferred direction in the life of the individual and the family. 4) Because the patient and the family know themselves best, they serve as content experts, while the therapist is an expert in leading the process. 5) Practical intervention that entails action should also relate to the emotional state.
These principles can provide social workers and family caregivers a sense of control and security, enabling them to use their extensive knowledge to help patients and their families regain control and hope. In order to move forward toward making the desired change, several tasks must be accomplished. Therefore, the coping process must be active. Social workers and family caregivers must move forward with what there “is” while not ignoring what “is not.”
The structured process is as follows: The first step in all sessions requires connecting with the patient and/or family members. The social work practitioner asks open questions related to the current situation. The practitioner frames what was said, presents the session’s purpose accordingly, and asks whether there is anything else the participants would like to discuss. The main part of the session focuses on contents that usually come up within the context of the participants’ illness perception, family network, and/or creation of a life routine by using a toolbox of techniques for treatment. Participants explore and discuss these available options and ways to move toward the desired situation while making necessary changes. At the end of the session, the social worker asks the participants what they have taken from today’s session and ask them to summarize their thoughts, feelings, actions, and any changes they may have experienced.
Clinical techniques and tools for treatment
The model offers practical tools tailored to those dealing with unique challenges. During the intervention, the social work practitioner makes use of techniques that are geared to helping the patient become a partner in the treatment and recovery process and to motivating the patient and/or the family members to bring about positive changes that are possible to achieve. Over the long run, the primary caregiver can experience feelings such as burnout, compassion fatigue, victimization, or self-blame that can become a barrier that must be broken down by the following techniques.
Joining is a familiar and basic technique that enables the social worker to join the actual and emotional state that the patient and the family are experiencing by listening to what they have to say and accepting what they feel.
Framing technique makes it possible to collect the topics the patient brings up without changing their meaning. These topics create a picture that can be framed to enable patients and family to review their statements and understand their meaning.
One-Up Position & One-Down Position. The one-up position is designed to generate changes over the short term or to be used in cases in which the patient shows resistance to change or to the practitioner’s authority. This technique is likely to shorten subsequent processes in the wake of a suggestion for a possible solution geared to diminishing the patient’s objections, noting that the social workers are in the position of an expert as they learned this solution from many patients coping with the same problem. For example, “From my professional experience I learned that a family caregiver cannot take care of the patient singlehandedly over time.” “Caregivers become fatigued and exhausted and thus must share the burden by treatment dispersion.” “I learnt that those who joined the care giving help felt they gained something meaningful in their family relationship and had an opportunity to become closer to them.” In addition, this technique can help the patient or the family members understand that what they are feeling is natural, universal, normal and legitimate.
One-down position is used to complement the one-up position technique by enabling patients to examine whether the suggested solution is appropriate for them and their family. They are in the position of an expert who know their family best’.
(4) The field metaphor (the sports field) is a tool taken from the coaching domain. The field metaphor refers to the patient’s reality in terms of the space of life on which the patients and families manage their life (Kelley, Citation2001). The routine of an individual’s life constitutes a familiar field. Illness is liable to change the playing field of the patient’s life, producing a new, unfamiliar, and sometimes foreign and scary set of roles, people, expectations, and the like. The question is in what way one’s life field and rules of the game changed as a result of the illness? The model encourages the patient to acknowledge the human and functional components of this new field and to understand that one can only have an impact in managing the illness and managing one’s life by remaining on the field rather than sitting on the sidelines.
(5) The knapsack metaphor allows the social worker, the patient, or the family member to examine and identify what personal and family resources are at the patient’s and family’s disposal to help them cope better. The WCC model is used to determine personal as well as family aptitudes, strengths, preliminary patterns of thought and behavior, habits, supportive community and any other resources that can help in coping with the situation effectively. The question is what they would like to preserve in their knapsack? what is burdening them that they would like to remove from their knapsack? and what is missing from their knapsack that they would like to add?
Assessment of training program and implications
The model is implemented and disseminated by means training courses and workshops offered to social workers who work in various of health settings, among them hospitals, the four national healthcare services called HMO (Health Maintenance Organization) and social services. In recent times, courses have been commissioned by the various health and welfare services for social workers in their work place. A little over half of the graduates (53%) during the evaluation period, came to the program through recommendation of a colleague or the director of their social work department. The rest joined the program through e-mail and professional press publications. The majority of the social workers that attended the courses were women and all participants had an academic degree in social work.
The goal is to expand the ability of social workers to offer adequate interventions and meet the needs of patients with chronic illnesses and their families in the face of the changing reality of healthcare and based on the WCC intervention model. The following sections provide an indication of what the participating social workers learned from attending a WCC course.
We evaluated the training program for the use of the model by qualitative interviews and later by a questionnaire. The evaluation study was conducted by Dr. Yaron Yavelberg, who is the research director at the Do-Et Institute that deals with applied social research. The evaluation was designed to determine participants’ satisfaction with the program in different dimensions and the degree to which the participants implemented the intervention perceptions and tools they acquired.
Narrative interviews
To assess the benefits of the training, in-depth interviews were conducted with 20 graduates of the training courses: 16 social workers and 4 nurses. The data were collected by semi-structured interviews that broke down the text into manageable feedback content. All segments of data that repeated ideas and were found to be interconnected were linked (Auerbach & Silverstein, Citation2003).
The results showed that the major reason for participating in the training program was the interviewees’ desire to expand their knowledge, improve their therapeutic skills and repertoire, and acquire tools for therapeutic intervention with chronically ill patients and their families. Based on their experience in treating chronic patients, they indicated that burnout and creating optimism over time constitute major difficulties for them, causing compassion fatigue and depletion of resources and strength.
Almost all the interviewees indicated that the WCC intervention model they learned is innovative, practical, and implementable. The course graduates noted that the course gave them a toolbox to be used in their work, a sense of order and organization of the content as well as a new perspective for conceptualizing the situation. Most of them thought that the model provided an effective response to the needs of patients and their families in managing the illness.
Questionnaire
In addition to the narrative assessment, 30 other graduates (out of a total of 45 graduates enrolled in the three courses at the time of the assessment) answered a questionnaire that was developed based on the narrative content interviews. The quantitative analysis presents distributions of the graduates’ responses to the issues raised before them.
The questionnaire included three items and were answered on a scale ranging from 1 to 5 (highest).
The findings indicate that the model offers applied and practical tools to a major extent and is enriching and essential. Participants exhibited a high level of usage of the techniques, reflecting a high professional level.
In addition, narrative interviews were conducted with a group of 17 women who served as the family caregivers of husbands with Alzheimer’s disease. These women joined the group in order to receive help as caregivers. The wives took part in one of five WWC groups facilitated by two social workers who were graduates of the WCC program. In the interviews the group participants indicated that the tools they attained were geared toward changing their own attitudes regarding their place in the family and toward coping with the situation. The topic that was especially practical for all the participants was the matter of sharing the burden at home while being concerned for their own physical and mental wellbeing. They noted that being part of the group was an empowering experience and that the group guided them regarding how to cope with the illness, strengthened them, and taught them to take responsibility for themselves. One participant summarized: “I learned that even in the chaos of our lives, it is possible and necessary to maintain ourselves as primary caregivers” ().
Figure 1. To what extent do the following descriptions characterize the program?
Figure 2. To what extent was the program effective? (assessed by five questions).
Figure 3. To what extent do you use the following techniques?
The content of these interviews and the results of the questionnaire indicate that the social workers found the model to be innovative and practical, as they pointed to the need to acquire suitable skills in order to deal with the biopsychosocial situations they must face today. Nevertheless, some social workers continue their work with their original familiar approach mainly because of their daily workload that makes it difficult for them to adopt to a new way of intervening. Change as we know is not an easy process. While others understand and belief in the needed change and therefore try to adopt the model or parts of it from which they can benefit. Young social workers appear to find it easier to make the needed changes and adopt and implement the model. We learned that the current difficulty of the model lies in the complexity of changing the concept to meet the challenging needs of today. It appears that the difficulty focuses on the need to open up to a new concept of a uniform structure framework and to the basis of asking questions to achieve change. It is a new way of thinking. This in itself is considered a limitation and a difficulty that must be overcome through the process of understanding and recognizing the reality today while the model emerges to be a source of strength.
We must therefore internalize and understand that today we are coping with a different era and a new reality of healthcare.
Conclusion
This paper has described an innovative intervention model for social work practitioners who treat and help patients with chronic illnesses and their families. The model emerged in response to changes in healthcare systems and the concomitant need to developing skills and expertise suitable to today’s reality.
The model proposes a new paradigm for treating patients with chronic illnesses and their family caregivers. The paradigm features a dialogic approach of sharing and taking responsibility in decision-making processes and in coping with the illness over long periods of time. Moreover, the model provides practical tools and actions for coping with the existing reality through structured framework and practical intervention, as well as placing emphasis on the existing strengths and aptitudes of patients and their families. This model helps social workers, patients and families to define how they can manage the illness effectively based upon the belief that they can cope with the illness. The model is also uniformly understood for all types of illness and for each stage of the family life cycle
To sum up, the model has opened a new and challenging door, providing a kind of a roadmap marking the road from the current situation toward the desired target. It facilitates progressing step by step while dealing with the illness that has entered the homes and lives of patients and their family, while social workers lead and accompany patients and families along this road.
The COVID-19 global pandemic has had a serious impact on the physical, emotional, economic and social lives of individuals, families and society and as a whole presenting special challenge for social workers and healthcare teams, patients and families (J. S. Rolland, Citation2020; Schechter et al., Citation2020). As such, an overall systemic view based on the WCC model has facilitated the construction of an effective intervention program that is suited to these new situation as expressed in Covid −19.
Author Contributions
All authors contributed to the development process of the model and its implementation.
Acknowledgements
We are grateful to Anat Milner-Cohen for her contribution to the developed model.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Additional information
Funding
References
- Auerbach, C. F., & Silverstein, L. B. (2003). Qualitative data. New York University Press.
- Benjamin, H. (1995). The wellness community guide to fighting for recovery from cancer. Penguin Putnam.
- Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 1129–1136. https://doi.org/10.1126/science.847460
- Engel, G. L. (1980). The clinical application of the biopsychosocial model. American Journal of Psychiatry, 137, 535–544. https://doi.org/10.1093/jmp/6.2.101
- Feigin, R., Barnez, Z., & Davidson-Arad, B. (2008). Quality of life in family members coping with chronic illness in a relative: An exploratory study. Families, Systems, & Health, 26(3), 267–281. https://doi.org/10.1037/a0013055
- Figley, C. R. (2002). Treating compassion fatigue. Brunner- Routledge.
- Goetz, J. L., Keltner, D., & Simon-Thomas, E. (2010). Compassion: An evolutionary analysis and empirical review. Psychological Bulletin, 136(3), 351–374. https://doi.org/10.1037/a0018807
- Grapsa, E., Pantelias, K., Ntenta, E., Pipil, C., Kiousi, E., Samartzi, M., Karagiannis, S., & Heras, P. (2014). Caregivers’ experience in patients with chronic diseases. Social Work in Health Care, 53(7), 670–678. https://doi.org/10.1080/00981389.2014.925998
- Kelley, S. (2001). The game. Jodere Group Inc.
- Martire, L. M., & Helgeson, V. S. (2017). Close relationships and the management of chronic illness: Associations and interventions. American Psychologist, 72(6), 601–612. https://doi.org/10.1037/amp0000066
- McDaniel, S. H., Campbell, T. L., Hepworth, J., Lorenz, A., & Satcher, D. (2004). Family-oriented primary care (2nd ed.). Springer.
- McDaniel, S. H., & deGruy, F. V., III. (2014). An introduction to primary care and psychology. American Psychologist, 69(4), 325–331. https://doi.org/10.1037/a0036222
- McDaniel, S. H. Doherty, W. J. & Hepworth, J.(2013).Medical family therapy and integrated care. American Psychological Association.
- McDaniel, S. H., Doherty, W. J., & Hepworth, J. (2013). Medical family therapy and integrated care. American Psychological Association.
- Neff, K. D. (2003). Self-compassion: A conceptualization of a healthy attitude toward oneself. Self and Identity, 2(2), 85–101. https://doi.org/10.1080/15298860309032
- Pardess, E. (2015). Compassion and self-compassion for the sake of wellbeing in older adults. Social Workers Journal, 76, 14–19.
- Peterson, C., Ruch, W., Beermann, U., Park, N., & Seligman, M. (2007). Strengths of character, orientations to happiness, and life satisfaction. The Journal of Positive Psychology, 2(3), 149–156. https://doi.org/10.1080/17439760701228938
- Rolland, J. (2018). Helping couples and families navigate illness and disability: An integrated approach. Guilford Press.
- Rolland, J. S. (2015). Advancing family involvement in collaborative health care: Next steps. Families, Systems, & Health, 33(2), 104–107. https://doi.org/10.1037/fsh0000133
- Rolland, J. S. (2020). COVID-19 pandemic: Applying a multisystemic lens. Family Process, 59(3), 3).922–936. https://doi.org/10.1111/famp.12584
- Ruddy, N. B., & McDaniel, S. H. (2013). Medical family therapy in health care reform. Couple and Family Psychology: Research and Practice, 2(3), 179–191. https://doi.org/10.1037/cfp0000010
- Schechter, A., Diaz, F., Moise, N., Anstey, D. E., Ye, S., Agarwal, S., Birk, J. L., Brodie, D., Cannone, D. E., Chang, B., Claassen, J., Cornelius, T., Derby, L., Dong, M., Givens, R. C., Hochman, B., Homma, S., Kronish, I. M. … Edmondson, D. (2020). Psychological distress, coping behaviors, and preferences for support among New York healthcare workers during COVID‐19 pandemic. General Hospital Psychiatry, 66, 1–8. https://doi.org/10.1016/j.genhosppsych.2020.06.007
- Seligman, M. (2002). Authentic happiness. Simon & Schuster.
- Thibodeaux, K., & Golant, M. (2007). The total cancer wellness guide: Reclaiming your life after diagnosis. Benbellabooks, Inc.
- Walsh, F. (2011). Family therapy: Systemic approaches to practice. In J. R. Brandell (Eds.), Theory and practice in clinical social work (pp. 153–178). Sage Publication, Inc