IJMSC Insights: Kenneth Pakenham on MS Care Partner Research

“I think the care element of caregiving should never be forgotten and that is soft, but powerful.”

Kenneth Pakenham, PhD

Care partners or caregivers play a pivotal role in the lives of those diagnosed with multiple sclerosis (MS), providing essential physical, emotional, and social support. However, the unique challenges they face and the significant impact they have on both their loved ones with MS and society at large have not received the attention they deserve. This is one of the many reasons that the International Journal of Multiple Sclerosis Care (IJMSC) chose research on caregivers and care partners as the focus of its 2023 theme issue.

From its first year of publication, IJMSC has published papers on these essential individuals in the MS community. The 1999 paper by Wollin et al, entitled “Caregiver Burden: Meeting the Needs of People Who Support the Person With Multiple Sclerosis,” reported on a survey taken by 34 Australian care partners of individuals with MS.¹ The caregivers voiced a need for psychological and practical support. The research underscored the physical, emotional, and financial challenges they faced while also briefly mentioning more positive aspects of caregiving, including helping to maintain the care recipient’s ability to live at home independently as well as having a constructive impact on the caregiver’s own personal development. The research showed “caregivers with the lowest level of perceived support reported the highest levels of stress. The respondents indicated that they needed help to meet expectations and that they needed relief, from either a supportive friend or health professional,” while the study also noted “caregivers underuse respite and community services that might alleviate the objective burden of caregiving. Therefore, health professionals need to inform caregivers of the availability and accessibility of services.”¹

Fast-forward to IJMSC’s November/December 2023 theme issue which features 6 papers covering various aspects of the caregiving role and it seems clear that much more research is necessary. In “Effect of 2-arm intervention on emotional outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial,” a paper by Douglas et al, the authors find “a significant number of informal caregivers had baseline levels of stress, depression, and distress that fell above clinical thresholds.”² They warn that “the use of evidence-based interventions to reduce untoward psychological outcomes is rare” and caution “[i]f health care providers are to ensure support of individuals with MS throughout their disease course, then we must facilitate the support of their informal caregivers as well.”² Twenty-four years after the Wollin et al paper, the call is still for interventions to improve caregivers’ psychological outcomes and for health care providers to facilitate this support.

The echoing of the 1999 paper continues in the current issue with the systematic review by Hoseinpour et al about interventions specific to the needs of those caring for individuals with MS.³ The authors report “few interventions have been performed directly for caregivers[,] as only 12 studies reported on the effective role of caregivers in the management of MS during the past 22 years. This finding indicates a lack of information about the lived experiences and well-being of caregivers and the individuals with MS they care for.”³ Again, despite the years of intervening research, the call is eerily similar: we need to know more and health care providers need to take a bigger role in the facilitation of care for care partners.

The trend in the issue carries through to an interview with many of the same themes from the past 30 years of MS research via the career of Kenneth Pakenham, PhD, emeritus professor of clinical and health psychology at the University of Queensland in Brisbane, Australia. He is interviewed by IJMSC guest editor Marcia Finlayson, PhD, OT Reg (Ont), OTR, professor of rehabilitation therapy at Queen’s University in Ontario, Canada. The focus of the excerpt4 that appears in print is Dr Pakenham’s 6 knowledge gaps in the research on MS care partners. The full interview⁵ delves into 4 research gains and 3 research opportunity areas as well as Dr Pakenham’s personal experience in the field as a person who received a possible MS diagnosis, who observed caregiving in his family, and who is a gay man. In a quote pulled from the full interview below, his opinion on research into caregiver burden is particularly poignant coming from someone with decades of research experience:

Although the work done by Dr Pakenham and his colleagues has helped move the field forward, much more remains to be discovered about how to help care partners of individuals with MS improve their own lives and, in the process, improve the lives of those for whom they care.

The editors and staff of IJMSC hope you’ll enjoy this conversation between 2 people who have many years of experience researching MS care and MS care partners. It touches upon many of the pressing topics of interest in the larger field, thoroughly covering the past and the present, and leaving researchers with clear aims and opportunities for future work.

References

1. Wollin J, Reiher C, Spencer N, Madl R, Nutter H. Caregiver burden: meeting the needs of people who support the person with multiple sclerosis. Int J MS Care. 1999;1(2):41-50. doi:10.7224/1537-2073-1.2.41

2. Douglas SL, Plow M, Packer T, Lipson AR, Lehman MJ. Effect of 2-arm intervention on emotional outcomes in informal caregivers of individuals with multiple sclerosis: a randomized pilot study trial. Int J MS Care. 2023;25(6):252-258. doi:10.7224/1537-2073.2022-111

3. Hoseinpour F, Ghahari S, Motaharinezhad F, Binesh M. Supportive interventions for caregivers of people with multiple sclerosis: a systematic review. Int J MS Care. 2023;25(6):266-272. doi:10.7224/1537-2073.2022-083

4. Finlayson M, Pakenham K. Opportunities in multiple sclerosis care partner research: an interview. Int J MS Care. 2023;25(6):278-280. doi:10.7224/1537-2073-25.6.278

5. Finlayson M, Pakenham K. Opportunities in multiple sclerosis care partner research: an interview. Int J MS Care. (2023);25(6). doi:10.7224/1537-2073-25.6.278a