Unmet education, psychological and peer support needs of people with multiple sclerosis

https://doi.org/10.1016/j.jpsychores.2014.05.010Get rights and content

Highlights

  • Education, psychological and peer support needs of people with MS were evaluated.

  • A variety in peer support groups was required especially for young people.

  • Symptom severity was associated with a greater level of psychosocial needs.

Abstract

Objective

Multiple sclerosis is a complex neurological disease which can cause impairment in a range of aspects of an individual's life. It often requires a degree of adjustment and peer support. The aim of the present study was to examine satisfaction with educational, psychological and peer support services of people with MS across gender, age and symptom severity.

Method

Participants completed a needs analysis questionnaire using Likert scales to determine the level of satisfaction with the support services. The questionnaire was sent to participants (n = 3502) throughout Australia as paper copy with reply paid envelope, or made available to them online via email links. A total of 2805 responded and completed the questionnaire (80% response rate). Of those, 79% were female and 21% were male. The participants ranged in age from 19 to 92 years, (M = 52.10; SD = 11.82).

Results

In terms of psychological services, females were less satisfied with their access to relationship and family counseling. There was also a clear need for more varieties in peer support groups, times, as well as modes of communication, especially among young people and mildly affected groups. Symptom severity was associated with a greater need for almost all education and psychological support services.

Conclusion

The findings of this study highlight current areas of unmet needs and may be used to inform the design and development of future education, psychological and social support services to ensure they are relevant and useful, as well as providing direction for future research.

Introduction

Multiple sclerosis (MS) is a demyelinating disease of the central nervous system which leads to impaired cognitive, motor and or sensory functions. [1] While the range and severity of symptoms vary greatly from individual to individual, symptoms typically include impaired mobility and balance, fatigue, bladder and bowel difficulties, sexual dysfunction, depressed mood and cognitive difficulties [2]. MS can cause impairment in various areas of an individual's life, influencing family roles, employment, quality of life and daily functioning. This presents a myriad of challenges to people with MS, and the unpredictability of MS often leads to psychological stress which is above and beyond the daily stressors of everyday life [3]. This uncertainty and hopelessness require a degree of support and adjustment, not only for the person with MS but also for their family and significant others [4], [5]. It is important for service providers, such as MS Australia and the State-based MS societies, to ensure that people with MS, their family members and significant others feel well supported and informed, so that they can uphold a good degree of psychological wellbeing and live fulfilling lives [4], [5]. Educational, psychological and peer support needs are all thought to be important factors in aiding with the adjustment of living with MS [4], [5], [6], [7].

It has been suggested that education and information on symptom management and treatment options can provide a sense of empowerment over the disease, and provide people with the tools that permit them to make informed decisions regarding their own wellbeing [7]. This sense of patient empowerment is thought to play an integral role in the successful management of MS [7]. It is important that people with MS have access to education pertaining to MS to allow them to self-manage their illness and maintain a good quality of life.

Similarly, peer support has been found to assist individuals in adjusting to life with MS, while improving quality of life and the psychological well-being of people with MS [8]. Meeting peers may provide comfort, support and an avenue to share experiences and stories for people with MS, and may also encourage group advocacy [9], [10], [11]. However, sometimes the unpredictability of MS can lead to psychological stress which is beyond the scope of a lay person's ability to manage and thus professional help is required. Depression and anxiety are common among people with MS and treatment may be needed from mental health professionals [12]. Thus, such support needs to be readily accessible for people with MS to prevent any further deterioration in their presentation.

The complexity of MS coupled with the volatile course and modest effectiveness of treatments makes it a challenging disease not only for the individual with MS, but also for the person's partner/spouse and family members [5], [13]. Family members may experience feelings of grief and loss with each new symptom and change in functional ability, many of which may influence family roles and change future plans [13]. Some family members may feel anger towards the affected family member and frustration with their situation which places additional stress on the family unit. Learning to recognize, communicate, and share these feelings with one another helps family members to cope with them more effectively [5], [13]. Similarly, relationships within couples may change as a result of MS [14]. Their lives are altered and are rearranged to accommodate the illness and the needs of the person with MS. Partners of people with MS in the early stages often report feeling shocked, unaware what the future may hold, helpless and out of control, while partners of those living with someone who has had MS longer may experience such feelings at the onset of each new symptom or symptom exacerbation, or may feel grief towards non-fulfillment of plans devised before the onset of MS [14], [15]. People with MS place a high level of importance on the support from family members and partners/spouses, and thus it is important that any ill feelings or additional strain placed on the relationship by MS is dealt with effectively to help preserve relationships and aid adjustment. Family counseling and relationship counseling may provide a safe place for family members to talk, address their issues and listen to the other family members, their spouse or partner, and may help adjust to life with MS [5], [13], [14], [15]. Thus, service providers need to be well informed on the level of need and satisfaction with such services.

When considering the need for and level of satisfaction with services it is important to note that people with MS are not homogenous. Understanding needs and satisfaction with care is complex and multifaceted and may be influenced by a number of things including gender, age, and symptom severity. For example, the experiences of people with MS can vary greatly and depend upon their level of symptoms [16], [17]. It has been shown that individuals most severely affected by MS have a significantly reduced quality of life and place importance on different areas of needs compared to those less severely affected [18].

The aim of the study was to explore the level of satisfaction with access to education services, access to psychological services and current peer support services, while paying attention to variations in needs across gender, symptom severity and age. The current study was an exploratory study and thus there were no predictions regarding differences between sub-groups on the level of satisfaction with education services and access to psychological services (individual and family) as well as current peer support services.

Section snippets

Materials

A questionnaire was developed drawing on a range of sources including the literature, semi-structured interviews with MS Australia staff (n = 28) and people with MS (n = 28) addressing the needs of people with MS and a range of unpublished materials obtained from each of the State MS offices. This questionnaire examined a wide range of needs for people with MS and their families: employment and income, transport, respite, equipment, education, psychological services, peer support services,

Results

All respondents who indicated an N/A response were excluded from the analyses for that particular item.

Discussion

Understanding the educational, psychological and peer support needs is important for the development and maintenance of support services to assist people in the management and adjustment of living with MS. Thus the aim of the study was to examine the level of satisfaction with education services, access to psychological services, and current peer support groups, across age, gender and symptom severity.

Across all participants, scores were low on perceived access to relationship counseling and

Conclusion

Findings indicated that age, gender, and symptom severity influence one's level of satisfaction with access to various educational, psychological needs and peer support needs. A significant contribution of this study to the literature is that it includes a large sample size and examines access to service needs of sub-groups of people with MS. This provides a fine-grained analysis of the needs of particular groups of people with MS, and is important for informing on additional services that are

Conflict of interest

The authors declare they have no conflict of interest.

Acknowledgments

This study was funded by Multiple Sclerosis Research Australia.

References (29)

  • P Edmonds et al.

    ‘Fighting for everything’: service experiences of people severely affected by multiple sclerosis

    Mult Scler

    (2007)
  • H Golla et al.

    Unmet needs of severely affected multiple sclerosis patients: the health professionals' view

    Palliat Med

    (2012)
  • NJ Holland et al.

    Meeting the needs of people with primary progressive multiple sclerosis, their families and the health-care community

    Int J MS Care

    (2011)
  • C Ytterberg et al.

    Perceived needs and satisfaction with care in people with multiple sclerosis: a two-year prospective study

    BMC Neurol

    (2008)
  • AB Kouzoupis et al.

    Papadimitriou: the family of the multiple sclerosis patient: a psychosocial perspective

    Int Rev Psychiatry

    (2010)
  • NJ Holland et al.

    Young adults with multiple sclerosis: management in the home

    Home Health Care Manage Pract

    (2006)
  • AI Matti et al.

    Multiple sclerosis: patients' information sources and needs on disease symptoms and management

    Patient Prefer Adher

    (2010)
  • DC Costa et al.

    The effect of social support on the quality of life of patients with multiple sclerosis

    Arq Neuropsiquiatr

    (2012)
  • S Aoun et al.

    The challenges and unmet needs of people with neurodegenerative conditions and their carers

    J Community Nurs

    (2006)
  • C-L Benbow et al.

    Clinic-based needs assessment of individuals with multiple sclerosis and significant others: implications for program planning—psychological needs

    Rehabil Nurs

    (2003)
  • DA Black et al.

    The services and social needs of people with multiple sclerosis in New South Wales, Australia

    J Rehabil

    (1994)
  • KH Jones et al.

    A large-scale study of anxiety and depression in people with multiple sclerosis: a survey via the web portal of the UK MS register

    (2012)
  • AB Kouzoupis et al.

    The family of the multiple sclerosis patient: a psychosocial perspective

    Int Rev Psychiatry

    (2010)
  • TE Sherman et al.

    Predictors of well-being among significant others of persons with multiple sclerosis

    Mult Scler

    (2007)
  • Cited by (32)

    • An evaluation of the role of community care in meeting the needs of people with multiple sclerosis in Ireland

      2023, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      This is particularly true in the context of multiple sclerosis (MS), a chronic neurological condition affecting almost 3 million people worldwide (Walton et al., 2020). Aside from having to cope with a wide array of symptoms (Brownlee et al., 2017), people with MS (PwMS) can experience numerous complex needs, including needs for healthcare, information, and psychosocial support (Kinyanjui et al., 2018, Lorefice et al., 2013, McCabe et al., 2015, Ponzio et al., 2015). In Ireland and other jurisdictions, many of the needs experienced by PwMS are not sufficiently met by the provision of state-funded health and social care services alone (Lonergan et al., 2015).

    • Uncovering patterns of real-world psychological support seeking and the patient experience in multiple sclerosis

      2022, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      In the context of support provided by MS organisations/charities, this focus on knowledge of MS seemed to be the factor that yielded positive views of this source of support in this study satisfying a need that has been identified as lacking (Kinyanjui et al., 2018). Despite the fact that MS organisations/charities can provide needed information, in some cases people simply weren't aware of what's available which influenced level of access to this source, or that such services were not available locally to them (McCabe et al., 2015). This experience was notably the same with regards to accessing support from mental health professionals (Edmonds et al., 2007).

    • The role of expectations and future-oriented cognitions in quality of life of people with multiple sclerosis: A systematic review

      2021, Multiple Sclerosis and Related Disorders
      Citation Excerpt :

      Similarly, we recommend that PwMS identify ways in which they may be empowered to feel in control over aspects of their condition while also learning to accept their diagnosis. While the development of such expectations may be aided by the provision of education and support, needs for these supports continue to be unmet (McCabe et al., 2015). More research into the influence of other forms of expectations, such as negative or unvalenced FOCs, may give further insight into how best to develop interventions tailored at supporting PwMS.

    • Predictors of emotional distress in people with multiple sclerosis: A systematic review of prospective studies

      2020, Journal of Affective Disorders
      Citation Excerpt :

      However, the magnitude of psychological treatment effects when specifically addressing anxiety and depression are limited, with small effect sizes reported in two meta-analyses (Ires et al., 2019; Sesel et al., 2018). The limited efficacy of psychological interventions for emotional distress in PwMS is therefore an unmet need requiring practical solutions (McCabe et al., 2015; Rieckmann, et al., 2018). Understanding why some PwMS emotionally adjust to living with the condition, while others experience enduring clinical levels of emotional distress, necessitates more prospective research.

    View all citing articles on Scopus
    View full text