6.3. Psychological support and coping strategies

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Emerging therapies and research directions]] → -------- ##### Summary >[!Summary] >- cognitive-emotional factors, including behavioral conditioning and amplification, have a key role in POTS[[#^1]] >- receiving a diagnosis or an illness label is a key part of illness representations, which influences how people make sense of their symptoms and may guide any coping actions[[#^2]] >- misdiagnosis and diagnostic delays can have negative consequences, which may lead to increases in psychosocial impairment[[#^2]] >- importance of understanding patients’ illness representations, trajectory to diagnosis and treatment experiences[[#^2]] >- tangible need for acceptance, understanding and information, along with the necessity for others to comprehend symptom burden and questionable prognosis in searching for help in living with POTS[[#^3]] >- psychological support regarded as potentially helpful, but the emphasis is on having access to a therapist who could consider the psychosocial impact of living with a physical illness[[#^4]] >- In an attempt gain self-management information, most participants had made use of online support groups; however, these tended to reinforce negativity and illness behaviours and were viewed as having the potential to do more harm than good[[#^5]] >- acknowledged burden of POTS on others, grateful that partners and some close friends had not questioned the legitimacy of their illness, this was valued, as their own self-belief had occasionally faltered when faced with years of symptoms and delays in being given a name for those symptoms[[#^6]] >- diagnosis or illness label was a key part of participants’ illness representations, which influenced how they made sense of their symptoms and guided their coping strategies[[#^7]] >- ability to exert some limited control over symptoms appeared to engender a feeling of well-being[[#^8]] >- some feel that past trauma and or lifestyle choices may have contributed towards the development of the condition and most saw these as contributors to, rather than causes of POTS, illustrating the importance of appraisal, coping and adjustment in chronic illness[[#^9]] >- participants expressed hope for the future in terms of treatments, but felt that hoping for a cure was unrealistic[[#^10]] >- beliefs in personal control generally appear to be adaptive, suggesting that having a sense of control may aid adjustment to physical illness[[#^10]] >- psychological therapy in helping control adjustment-related issues in order to bypass functional decline due to poor adjustment to chronic illness needs to be tailored to dealing with physical health conditions[[#^11]] >- a trauma-informed approach should be utilized to help a patient transition from the 'Crisis phase' into the 'Stabilisation phase'. Awareness about appropriate resources and education within the POTS community is imperative for the practitioner to be sensitive to the unique needs of the patients[[#^12]] >- as part of a trauma-informed approach, referrals can be made to a behavioral therapist to provide the individual with coping mechanisms and grounding techniques, such as mindfulness and meditation to ensure that POTS patients can de-escalate when symptoms flare[[#^13]] >- Assisting patients with building greater intrapersonal emotional awareness through emotional identification, labeling and acceptance in a non-judgmental manner may help facilitate the transition into the 'Stabilization phase' and accepting the reality of the diagnosis and the changes that accompany it is important[[#^14]] >- Behavioral therapists should provide their patients with psycho-educational information about the diagnosis and prognosis, and link patients with supportive resources. These resources may include individual therapy (face to face or teletherapy), group therapy, and support groups – online or in person[[#^15]] >- Social isolation is common among individuals with POTS and it is important to build support networks, as they lead to greater connection and support the transition out of Crisis[[#^16]] >- Controlling the physical symptoms may help to decrease psychological symptoms of Depression, Hopelessness, Thwarted Belongingness, and Perceived Burdensomeness and improve their quality of life[[#^17]] >- if perceived burdensomeness is indeed a major factor in suicide risk in POTS, healthcare practitioners and psychologists can make great strides in suicide prevention within the POTS community by identifying individuals at risk and working with caretakers to make interactions more positive and decrease feelings of perceived burdensomeness[[#^18]] >- providing positive life events - such as playing board games, making a favorite snack, or sharing a movie at home - that meet the physical needs of the chronically ill person and increase social belonging can be beneficial in decreasing both perceived burdensomeness and suicide risk[[#^18]] >- The healthcare community, in particular, could decrease suicide risk for those with POTS through compassionate care and routine screening for suicide risk (Of those who attempt suicide, 64% visit a healthcare facility in the month prior to the attempt and 38% visit the week prior)[[#^18]] >------------ > >**Psychological Treatment Approach to Cognitive Therapy (CBT) in POTS**[[#^19]][[#^20]][[#^25]] > >| Skill | >|:------------------------------------------------------------------ | >| Core CBT skills for identifying and challenging unhelpful thinking | >| Acute anxiety skills | >| Worry skills | >| Adjusting to unpredictability | >| Syncope and pre-syncope related skills | >| Improved Sleep | >| Pain management | >| Interpersonal skills | >| Managing grief and guilt | >| Anger management | >| Mindfulness (presence in the moment with curiosity) | >| Compassion and acceptance | >| Consolidating advice and overseeing behavior changes | >| Activity pacing | >| Self-compassion, self-worth and self-care | >| Challenging illness identity | >| Hope and positivity | > >- Mindfulness training has also been shown to improve autonomic responses to stress, and relevantly to POTS, to reduce hypervigilance and catastrophic interpretations of symptoms[[#^21]] >- isolation may be a significant factor for young bed-bound individuals with POTS. Many patients describe living a life un-fathomable to their peers and having been misbelieved and ostracized. Clinicians who work with POTS patients have an opportunity to engender hope and reduce isolation[[#^22]] >- introducing this support early is likely to be an important factor in preventing QOL deterioration and associated secondary factors such as reactive depression, avoidance, and physical deconditioning[[#^23]] >- patients actively involved in their healthcare do better, so socializing a patient to the treatment approach is standard best practice for CBT and essential for engagement and active collaboration[[#^24]] > ------------- > > **In addition to the CBT techniques, factors more specific to POTS may include** >- getting the delicate balance right of responding appropriately to but not getting distressed or overwhelmed by somatic symptoms[[#^26]] >- learning strategies to calm down the fight/flight response and preventing anxious thinking from escalating the ‘anxiety-mimicking’ somatic symptoms[[#^26]] >- pre-syncope specific strategies including counter-maneuvers and not continuing on and ignoring physiological cues[[#^26]] >- addressing unhelpful dissociative tendencies, which can arise as a coping strategy in the wake of distress and discomfort (which untreated can exacerbate a vicious cycle of deteriorating functioning)[[#^26]] >- challenging the unhelpful idea that the body is scary, unpredictable, out of control and has let them down[[#^26]] -------- >_“Cognitive-emotional factors, including behavioral conditioning and amplification, have a key role in POTS.”_ ([[Benarroch-2012]], [p. 2](zotero://open-pdf/library/items/WEZLT9QC?page=2&annotation=LY3744KL))^1 >*“Leventhal’s common-sense model (CSM) [11] of illness representations, proposes that illness perceptions directly influence coping strategies, which in turn influence outcomes. Receiving a diagnosis or an illness label is a key part of illness representations, which influences how people make sense of their symptoms and may guide any coping actions [12]. Hence, how an individual thinks about an illness can influence coping behaviours and ill ness adjustment. For example, in a study of adults with sickle cell disease, negative thinking was associated with poorer outcomes and continued adjustment difficulties [13]. Similarly, misdiagnosis and diagnostic delays can have negative consequences, which may lead to increases in psychosocial impairment [14]. This high lights the importance of understanding patients’ illness representations, trajectory to diagnosis and treatment experiences, however to date there has been very limited research in this area, especially in developing theory-based interventions that may help to reduce symptom severity and improve quality of life in POTS.”* ([[Knoop-2023]], [p. 3](zotero://open-pdf/library/items/P2VFKVHY?page=3&annotation=9WZZU8H3))^2 >*“There was a tangible need for acceptance, understanding and information, along with the necessity for others to comprehend symptom burden and questionable prognosis in searching for help in living with POTS.”* ([[Knoop-2023]], [p. 4](zotero://open-pdf/library/items/P2VFKVHY?page=4&annotation=2BIUXF38))^3 >*“Psychological support was regarded as potentially helpful, but the emphasis was on having access to a therapist who could consider the psychosocial impact of living with a physical illness.”* ([[Knoop-2023]], [p. 5](zotero://open-pdf/library/items/P2VFKVHY?page=5&annotation=NBG7TFPX))^4 >*“In an attempt gain self-management information, most participants had made use of online support groups; however, these tended to reinforce negativity and illness behaviours and were viewed as having the potential to do more harm than good”* ([[Knoop-2023]], [p. 5](zotero://open-pdf/library/items/P2VFKVHY?page=5&annotation=GIAPDA5J))^5 >*“Janet and Anna acknowledged the burden of POTS on others, they explained how they felt fortunate in how they had been treated by other people and partners. Lynette referred to the continued support from her spouse, despite him not necessarily having “signed up” for living with, and caring for a person with a chronic illness. Participants seemed to be grateful that partners and some close friends had not questioned the legitimacy of their illness, this was valued, as their own self-belief had occasionally faltered when faced with years of symptoms and delays in being given a name for those symptoms.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=5TG2TQK6))^6 >*“The diagnosis or illness label was a key part of participants’ illness representations, which influenced how they made sense of their symptoms and guided their coping strategies”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=DPQIJ6NC))^7 >*“The ability to exert some limited control over symptoms appeared to engender a feeling of well-being”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=ZLYM885V))^8 >*“Two participants felt that past trauma and or lifestyle choices may have contributed towards the development of the condition and most saw these as contributors to, rather than causes of POTS, illustrating the importance of appraisal, coping and adjustment in chronic illness”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=QDTCFP43))^9 >*“Participants expressed hope for the future in terms of treatments, but felt that hoping for a cure was unrealistic. Such findings are congruent with other chronic conditions such as CFS and MS, in which seeking a better future [29], along with acceptance and shared understanding were important [30]. Beliefs in personal control generally appear to be adaptive [26], suggesting that having a sense of control may aid adjustment to physical illness. Indeed, for two participants, POTS had permitted adversarial growth insofar that had given them the opportunity to make positive changes to work situations.”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=5R26RS2Y))^10 >*“There is a likely role for psychological therapy in helping control adjustment-related issues [10], this is of importance as previous research has shown that poor adjustment to chronic illness can lead to depression and anxiety as well as functional decline [32]. However, care should be taken to avoid a sole focus on less adaptive emotion focused coping [25]. As emphasised by participants, psychological support needs to be tailored to dealing with physical health conditions, in respect of supporting the adjustment process.”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=353S5LTY))^11 >*“if an individual is to transition from Crisis into Stabilization as quickly as possible, a trauma-informed approach should be utilized. Cultural competence and awareness about appropriate resources and education within the POTS community is imperative, so that practitioners are sensitive to the unique needs of their patients and do not trigger additional trauma when engaging them in the treatment process.”* ([[Pederson-2020]], [p. 8](zotero://open-pdf/library/items/VVH4N6QQ?page=8&annotation=TMF565JC))^12 >*“As part of a trauma-informed approach, referrals can be made to a behavioral therapist to provide the individual with coping mechanisms and grounding techniques, such as mindfulness and meditation to ensure that POTS patients can de-escalate when symptoms flare.”* ([[Pederson-2020]], [p. 8](zotero://open-pdf/library/items/VVH4N6QQ?page=8&annotation=FV2QDXPS))^13 >*“Assisting patients with building greater intrapersonal emotional awareness through emotional identification, labeling and ([p. 8](zotero://open-pdf/library/items/VVH4N6QQ?page=8&annotation=V3UB38ZH)) acceptance in a non-judgmental manner may help facilitate the transition into Stabilization. Accepting the reality of the diagnosis and the changes that accompany it are also important strategies that can help patients transition from Crisis into Stabilization”* ([[Pederson-2020]], [p. 10](zotero://open-pdf/library/items/VVH4N6QQ?page=10&annotation=UBNL9NRR))^14 >*“Behavioral therapists should provide their patients with psycho-educational information about the diagnosis and prognosis, and link patients with supportive resources. These resources may include individual therapy (face to face or teletherapy), group therapy, and support groups – online or in person”* ([[Pederson-2020]], [p. 10](zotero://open-pdf/library/items/VVH4N6QQ?page=10&annotation=5IH3V247))^15 >*“Social isolation is common among individuals with POTS and it is important to build support networks, as they lead to greater connection and support the transition out of Crisis and into one of the other three more evolved phases.”* ([[Pederson-2020]], [p. 10](zotero://open-pdf/library/items/VVH4N6QQ?page=10&annotation=PE8WXJLZ))^16 >*“Patients in the Crisis group need help to develop appropriate coping strategies to deal with the trauma of their symptoms and diagnosis. Controlling the physical symptoms may help to decrease psychological symptoms of Depression, Hopelessness, Thwarted Belongingness, and Perceived Burdensomeness and improve their quality of life.”* ([[Pederson-2020]], [p. 10](zotero://open-pdf/library/items/VVH4N6QQ?page=10&annotation=QM6NX3T7))^17 >*“Fortunately, there are opportunities to identify and help POTS patients at high-risk for suicide before they make an attempt. Psychological factors associated with suicide risk in chronic illness can be altered by targeted intervention [50], giving practitioners the opportunity to prevent suicide. If perceived burdensomeness is indeed a major factor in suicide risk in POTS, healthcare practitioners and psychologists can make great strides in suicide prevention within the POTS community by identifying individuals at risk and working with caretakers to make interactions more positive [16] and decrease feelings of perceived burdensomeness. Providing positive life events - such as playing board games, making a favorite snack, or sharing a movie at home - that meet the physical needs of the chronically ill person and increase social belonging can be beneficial in decreasing both perceived burdensomeness and suicide risk [29]. The healthcare community, in particular, could decrease suicide risk for those with POTS through compassionate care and routine screening for suicide risk. Of those who attempt suicide, 64% visit a healthcare facility in the month prior to the attempt and 38% visit the week prior [54].”* ([[Pederson-2018a]], [p. 5](zotero://open-pdf/library/items/M2CWX5ZN?page=5&annotation=24AKPTTN))^18 >![[Zotero/Zotero Images/Raj-2018-20-x141-y105.png]] >([[Raj-2018]], [p. 20](zotero://open-pdf/library/items/IYRK4T6C?page=20&annotation=RQDT8NPD))^19 >![[Zotero/Zotero Images/Raj-2018-21-x146-y269.png]] >([[Raj-2018]], [p. 21](zotero://open-pdf/library/items/IYRK4T6C?page=21&annotation=IBWX5NFY))^20 >*“Evidence is growing rapidly for variants of traditional CBT approaches based on mindfulness, such as Mindfulness-based Cognitive Therapy (MBCT). Mindfulness is defined as paying attention to what is happening in the present moment with acceptance, curiosity, and compassion. Practicing mindfulness on a regular basis supports enhanced awareness of experiences and actions, and better adaptations (e.g. responding more flexibly and skillfully to changing symptoms such as palpitation). This can help break cycles of unhelpful thoughts and actions (such as avoidance), which can otherwise increase distress, exacerbate symptoms, and limit functioning. A large systematic review and meta-analysis, demonstrated that mindfulness-based interventions significantly improve mental health, QOL, and physical functioning in treatment of several patient populations including cancer, cardiovascular disease, chronic pain, depression, and anxiety disorders.55 Mindfulness training has also been shown to improve autonomic responses to stress,56, 57 and relevantly to POTS, to reduce hypervigilance and catastrophic interpretations of symptoms.5”* ([[Raj-2018]], [p. 13](zotero://open-pdf/library/items/IYRK4T6C?page=13&annotation=AGD7YSL9))^21 >*“An interesting unanticipated finding emerged from a recent small outcome study of a Mindfulness-Based Stress Reduction (MBSR) program adapted for teenagers with cardiac diagnoses (in which category the investigators included POTS).61 That the comparison group, who received facilitated small group-support via video, had outcomes equivalent to the treatment group suggests that group support is perhaps best understood as intervention, not a non-treatment comparison. This is in line with accruing evidence of the pivotal role of reducing social exclusion and perceived helplessness for positive outcomes in chronic illness.62 Indeed, reducing isolation may be a very significant factor in any therapeutic intervention. In a study examining adults with congenital heart disease, social adjustment was more predictive of health outcomes than medical variables.63 Isolation may be a significant factor for young bed-bound individuals with POTS. Many patients describe living a life un-fathomable to their peers and having been misbelieved and ostracized.44 It is our opinion that clinicians who work with POTS patients have an opportunity to engender hope and reduce isolation.”* ([[Raj-2018]], [p. 13](zotero://open-pdf/library/items/IYRK4T6C?page=13&annotation=4PXVVDJP))^22 >*“A physical health clinician actively involved in patient care is probably best placed to introduce patients to the idea of engaging in psychological support without being misconstrued as suggesting symptoms are “all in the head.” Introducing this support early is likely to be an important factor in preventing QOL deterioration and associated secondary factors such as reactive depression, avoidance, and physical deconditioning.”* ([[Raj-2018]], [p. 14](zotero://open-pdf/library/items/IYRK4T6C?page=14&annotation=2JLF9EKD))^23 >*“Socializing a patient to the treatment approach is standard best practice for CBT and essential for engagement and active collaboration. We know that patients actively involved in their healthcare do better. The rationale for psychological intervention, all of which can be helpful to share with patients, include those specific to POTS, as well as those more broadly applicable to many chronic illnesses.”* ([[Raj-2018]], [p. 14](zotero://open-pdf/library/items/IYRK4T6C?page=14&annotation=6DPA58SJ))^24 >*“CBT techniques used in many chronic health conditions that are almost universally helpful include: setting and working towards specific agreed goals (e.g. enhancing motivation to engage in appropriate life-style changes and adhere to pharmacological regimes more consistently); problem-solving training; and cognitive restructuring (e.g. identifying and changing unhelpful assumptions and thinking cycles including health and other fears about the future, harboring frustration at past mistakes, misdiagnosis, and failings amongst family and friends); and relaxation training to reduce the impact of chronic stress. Identifying any issues such as isolation, compromised sleep, poor diet, deconditioning, or self-medication, which can impact directly on disease prognosis and addressing these promptly. Guidance around appropriate pacing and engagement in the right activities for the right amount of time to live optimally; help with adjustment to diagnosis, grief, and fears for the future are all typical targets of assessment and intervention in a comprehensive CBT approach. In addition, effective protocols often include activities to be completed between sessions to ([p. 14](zotero://open-pdf/library/items/IYRK4T6C?page=14&annotation=73WXV4HM)) document examples of thought or behavioral patterns, plan or practice new skills or conduct behavioral experiments to collate evidence for the positive effects of the approach.”* ([[Raj-2018]], [p. 15](zotero://open-pdf/library/items/IYRK4T6C?page=15&annotation=GQ6QJBLX))^25 >*“In addition to the techniques described above, factors more specific to POTS that can be targeted for support include: getting the delicate balance right of responding appropriately to but not getting distressed or overwhelmed by somatic symptoms; learning strategies to calm down the fight/flight response and preventing anxious thinking from escalating the ‘anxiety-mimicking’ somatic symptoms; pre-syncope specific strategies including counter-maneuvers and not continuing on and ignoring physiological cues; addressing unhelpful dissociative tendencies, which can arise as a coping strategy in the wake of distress and discomfort (which untreated can exacerbate a vicious cycle of deteriorating functioning); and challenging the unhelpful idea that the body is scary, unpredictable, out of control and has let them down.”* ([[Raj-2018]], [p. 15](zotero://open-pdf/library/items/IYRK4T6C?page=15&annotation=RD8ULATN))^26