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The impact of multiple sclerosis on family members: a review of the literature
Michele Messmer Uccelli*
Practice points
family
●●
I nformation from the time the patient begins the diagnostic process throughout the course of the disease is vital for every member of the family. Healthcare professionals, in collaboration with patient organizations, must assure that everyone in the family has access to information, and face the challenge of finding ways to reach out to families who are not ready for information or support.
●●
F amilies whose coping strategies are reactive or ineffective require support from professionals who are competent in evaluating family dynamics and in facilitating communication toward change.
●●
aregivers are at high risk for depression and should be periodically evaluated for depressive symptoms and C treated appropriately.
●●
ealthcare professionals should be aware of situations in which a child is the only confidant of the parent with H multiple sclerosis (MS) since this can affect quality of life and adjustment over time.
●●
S ince the emotional state of the person with MS can have an important impact on the coping and wellbeing of other family members, screening for emotional difficulties, especially depression, should be part of routine follow-up.
●●
F amilies of people with MS tend to neglect their own interests, needs and health, can have diminished social support and are at risk for becoming increasingly isolated. It is important to regularly evaluate a family’s support network and lifestyle.
●●
ealthcare professionals should be aware of the caregiving burden in order to assure that external resources are H exploited to the benefit of the entire family.
●●
E ach family member is affected by MS and copes in a personal and individual way. Families must be treated as a dynamic unit and be encouraged to acknowledge and respect the contribution of each person to successful family functioning.
MT.14.6
uture
tive ure UK
*Italian Multiple Sclerosis Society, Healthcare Professional & Client Programs, Via Operai 40, Genoa 16149, Italy; Tel.: +39 010 2713271; Fax: +39 010 2713269; [email protected]
10.2217/NMT.14.6 © 2014 Future Medicine Ltd
Neurodegen. Dis. Manage. (2014) 4(2), 177–185
part of
ISSN 1758-2024
177
Review Messmer Uccelli Summary Multiple sclerosis (MS) is one of the most common neurological diseases in young adults and involves inflammatory demyelination of the CNS. MS typically manifests between 20 and 40 years of age, and can lead to significant disability in some cases. The disease course is unpredictable. MS has a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress in each family member as well as on family functioning in general. Common themes include the impact of the emotional state of the person with MS on family members, the role of the healthy parent on how children cope, the effect of a lack of information about MS, communication within the family and with healthcare professionals, and the importance of assessing and treating families as a dynamic unit in order to assure comprehensive intervention plans. The current literature review is based on 30 full research articles meeting inclusion criteria related to partners/couples, family caregivers, children with a parent with MS and parents of young children with MS. Background Multiple sclerosis (MS) is among the most common neurological diseases in young adults and involves inflammatory demyelination of the CNS [1] . MS typically manifests between 20 and 40 years of age. It is a chronic, progressive disease that can lead to advanced disability in some cases [2] . Since there is no definitive cure for MS, cognition and mood may be affected, exacerbations are unpredictable, progression can be unremitting and the age at disease onset means decades of illness, MS can have a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress on each family member as well as on family functioning in general [3] . For the most part, studies on the impact of MS on family members have focused on caregivers and children with a parent with MS. This review attempts to provide a broad sense of the repercussions of the disease on the family, providing a review of the literature on the impact of MS on each component of the family. It is divided into four sections on partners/couples, family caregivers, children with a parent with MS and parents of young children with MS. ●●Search strategy
Pubmed and PSYCH INFO databases were searched for the following terms: multiple sclerosis and family, caregiver, partner, spouse, parent, child and family coping for the period from January 2008 to August 2013. ●●Selection criteria
Included publications were reports of research studies that focused on the impact of MS on family members, written in English, published in peer-reviewed journals within the established timeframe. Excluded publications were not
178
Neurodegen. Dis. Manage. (2014) 4(2)
directly relevant to the topic, were not in English, did not report a study, reported mixed disease groups that did not differentiate results specifically for MS and review articles. Considering the limited number of quantitative studies available and the importance of subjective experience in this area, both quantitative and qualitative studies were included in the review. ●●Search results
The search identified 278 citations, excluding duplicates. In total, 219 citations were excluded based on abstracts not meeting the inclusion criteria. In total, 59 full papers were reviewed and of these, 30 met the inclusion criteria and have been included in the review. Table 1 provides a summary of publications included in the review. Impact of MS on partners & on couples Facing the challenges of MS can put a strain on the couple. It has been suggested that MS significantly affects the probability of remaining in the same relationship over the course of the disease [4] . It is reported that as many as 66% of relationships end and that women are the affected partner in the vast majority of cases [4,5] . Male gender of the healthy partner and diagnosis after 35 years of age appear to be risk factors for separation, whereas diagnosis before 36 years of age and having young children seem to be protective factors against separation [4] . Couples facing MS have reported significant changes to the relationship in terms of physical restrictions, economic factors and dependency, although social support satisfaction contributes significantly to predicting marital relationship satisfaction [6] . Martial satisfaction may also be influenced by the couple’s dissatisfaction with the sexual relationship. One study reported that only one-third of healthy partners were
future science group
The impact of multiple sclerosis on family members: a review of the literature
Review
Table 1. Summary of study, sample characteristics and aspects assessed. Study (year)
Study design characteristics
Ackroyd et al. (2011)
Quantitative, cross-sectional; 72 subjects with MS and their self-administered questionnaires partners
Sample characteristics
Akkus (2011)
Correlational study; 49 family caregivers self-administered questionanires Alshubaili et al. Case–control; self-administered 170 family caregivers (2008) questionnaires Argyriou et al. (2011) Argyriou et al. (2011) Aymerich et al. (2009) Bjorgvinsdottir and Halldorsdottir (2013) Bogosian et al. (2011)
Case–control; self-administered questionnaires Cross-sectional; self-administered questionnaires Cross-sectional, multicenter; self-administered questionnaires Retrospective qualitative; unstructured interview
35 family caregivers of people with secondary progressive MS 35 family caregivers of people with secondary progressive MS 551 family caregivers
Qualitative; semistructured, open-ended interview
15 adolescents aged 13–18 years, 11 families, six single parents and five parents with minimal ambulation difficulties
Bogosian et al. (2009)
Exploratory; semistructured in-depth telephone interviews
15 partners of people in the early stages of MS who were not in a caregiving role, aged 32–59 years
Boland et al. (2012) Bowen et al. (2011)
Qualitative; semistructured interview Cross-sectional qualitative, multicenter; semistructured interview Cross-sectional computer-assisted telephone interview study
Seven subjects with MS and their partners 25 relatives visiting family members with advanced MS in long-term care
Buchanan and Huang (2011)
11 young adults who were caregivers of a disabled single parent at ages between 5 and 18 years
530 informal caregivers
Buchanan et al. Cross-sectional study; telephone 527 caregivers (2009) interviews
Buchanan and Huang (2012) Ehrensperger et al. (2008) Glantz et al. (2009)
Cross-sectional study, computer-assisted telephone interview Cross-sectional; semistructured interview Prospective cohort study
Lehan and Correlational study; Arangopsychologist-administered Lasprilla (2012) questionnaires
442 caregivers
44 parents with MS, 36 healthy partners, 72 children Three disease groups (malignant primary brain tumor, cancer or MS) of married subjects – MS 108 (21%) 79 caregivers
Aspects assessed
Ref.
Positive outcomes related to diagnosis, illness perception, depression and cognition Burden of caregiving, psychological and social needs Quality of life, feelings about family member’s illness and anxiety about the possibility of having MS Anxiety, depression and quality of life
[27]
[17] [23]
[16]
Anxiety, depression and sleep quality
[22]
Health-related quality of life, psychological distress and socioeconomic factors Personal experience of being a young carer, caring responsibilities and feelings related to responsibilities and to parent’s MS
[19] [10]
Effect of parent’s MS on child’s social and family life, main caregiving issues and concerns, feelings, practical problems, and aspects that were helpful or unhelpful in dealing with problems Thoughts and feelings at the time of diagnosis and presently, impact of MS on different aspects of life and coping with challenges Changes in coping over time
[29]
Coping, decision-making, support needs, relationship changes, impact of MS and care issues Quality of life, caregiver’s perceptions of assisting a person with a significant level of functional impairment and impact of providing assistance affected the caregiver Satisfaction with access to health services and with quality of formal care, information needs, feelings about the caregiving experience and health-related quality of life Feelings and attitudes experienced when providing care, and health-related quality of life Coping ability and depression
[31]
Demographic characteristics in divorce or separation Distress associated with patient’s symptoms, depression
[8]
[12]
[18]
[24]
[25]
[33]
[5]
[21]
MS: Multiple sclerosis.
future science group
www.futuremedicine.com
179
Review Messmer Uccelli Table 1. Summary of study, sample characteristics and aspects assessed (cont.). Study (year)
Study design characteristics
Sample characteristics
Aspects assessed
Ref.
Liedstöm et al. (2010) McPheters and Sandberg (2010) Messmer Uccelli et al. (2013)
Qualitative; semistructured interview and questionnaire Quantitative, correlational; self-administered questionnaires
29 partners, ten parents, three siblings and two adult children 54 subjects with MS and their partners
Quality of life
[13]
Mutch (2010)
Qualitative study, semistructured Eight spouse caregivers interview
Case–control study; 30 parents (15 couples) with a self-administered questionnaires child with MS
The impact of multiple sclerosis on family members: a review of the literature
Michele Messmer Uccelli*
Practice points
family
●●
I nformation from the time the patient begins the diagnostic process throughout the course of the disease is vital for every member of the family. Healthcare professionals, in collaboration with patient organizations, must assure that everyone in the family has access to information, and face the challenge of finding ways to reach out to families who are not ready for information or support.
●●
F amilies whose coping strategies are reactive or ineffective require support from professionals who are competent in evaluating family dynamics and in facilitating communication toward change.
●●
aregivers are at high risk for depression and should be periodically evaluated for depressive symptoms and C treated appropriately.
●●
ealthcare professionals should be aware of situations in which a child is the only confidant of the parent with H multiple sclerosis (MS) since this can affect quality of life and adjustment over time.
●●
S ince the emotional state of the person with MS can have an important impact on the coping and wellbeing of other family members, screening for emotional difficulties, especially depression, should be part of routine follow-up.
●●
F amilies of people with MS tend to neglect their own interests, needs and health, can have diminished social support and are at risk for becoming increasingly isolated. It is important to regularly evaluate a family’s support network and lifestyle.
●●
ealthcare professionals should be aware of the caregiving burden in order to assure that external resources are H exploited to the benefit of the entire family.
●●
E ach family member is affected by MS and copes in a personal and individual way. Families must be treated as a dynamic unit and be encouraged to acknowledge and respect the contribution of each person to successful family functioning.
MT.14.6
uture
tive ure UK
*Italian Multiple Sclerosis Society, Healthcare Professional & Client Programs, Via Operai 40, Genoa 16149, Italy; Tel.: +39 010 2713271; Fax: +39 010 2713269; [email protected]
10.2217/NMT.14.6 © 2014 Future Medicine Ltd
Neurodegen. Dis. Manage. (2014) 4(2), 177–185
part of
ISSN 1758-2024
177
Review Messmer Uccelli Summary Multiple sclerosis (MS) is one of the most common neurological diseases in young adults and involves inflammatory demyelination of the CNS. MS typically manifests between 20 and 40 years of age, and can lead to significant disability in some cases. The disease course is unpredictable. MS has a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress in each family member as well as on family functioning in general. Common themes include the impact of the emotional state of the person with MS on family members, the role of the healthy parent on how children cope, the effect of a lack of information about MS, communication within the family and with healthcare professionals, and the importance of assessing and treating families as a dynamic unit in order to assure comprehensive intervention plans. The current literature review is based on 30 full research articles meeting inclusion criteria related to partners/couples, family caregivers, children with a parent with MS and parents of young children with MS. Background Multiple sclerosis (MS) is among the most common neurological diseases in young adults and involves inflammatory demyelination of the CNS [1] . MS typically manifests between 20 and 40 years of age. It is a chronic, progressive disease that can lead to advanced disability in some cases [2] . Since there is no definitive cure for MS, cognition and mood may be affected, exacerbations are unpredictable, progression can be unremitting and the age at disease onset means decades of illness, MS can have a significant impact on families, influencing their wellbeing and quality of life, often creating psychological stress on each family member as well as on family functioning in general [3] . For the most part, studies on the impact of MS on family members have focused on caregivers and children with a parent with MS. This review attempts to provide a broad sense of the repercussions of the disease on the family, providing a review of the literature on the impact of MS on each component of the family. It is divided into four sections on partners/couples, family caregivers, children with a parent with MS and parents of young children with MS. ●●Search strategy
Pubmed and PSYCH INFO databases were searched for the following terms: multiple sclerosis and family, caregiver, partner, spouse, parent, child and family coping for the period from January 2008 to August 2013. ●●Selection criteria
Included publications were reports of research studies that focused on the impact of MS on family members, written in English, published in peer-reviewed journals within the established timeframe. Excluded publications were not
178
Neurodegen. Dis. Manage. (2014) 4(2)
directly relevant to the topic, were not in English, did not report a study, reported mixed disease groups that did not differentiate results specifically for MS and review articles. Considering the limited number of quantitative studies available and the importance of subjective experience in this area, both quantitative and qualitative studies were included in the review. ●●Search results
The search identified 278 citations, excluding duplicates. In total, 219 citations were excluded based on abstracts not meeting the inclusion criteria. In total, 59 full papers were reviewed and of these, 30 met the inclusion criteria and have been included in the review. Table 1 provides a summary of publications included in the review. Impact of MS on partners & on couples Facing the challenges of MS can put a strain on the couple. It has been suggested that MS significantly affects the probability of remaining in the same relationship over the course of the disease [4] . It is reported that as many as 66% of relationships end and that women are the affected partner in the vast majority of cases [4,5] . Male gender of the healthy partner and diagnosis after 35 years of age appear to be risk factors for separation, whereas diagnosis before 36 years of age and having young children seem to be protective factors against separation [4] . Couples facing MS have reported significant changes to the relationship in terms of physical restrictions, economic factors and dependency, although social support satisfaction contributes significantly to predicting marital relationship satisfaction [6] . Martial satisfaction may also be influenced by the couple’s dissatisfaction with the sexual relationship. One study reported that only one-third of healthy partners were
future science group
The impact of multiple sclerosis on family members: a review of the literature
Review
Table 1. Summary of study, sample characteristics and aspects assessed. Study (year)
Study design characteristics
Ackroyd et al. (2011)
Quantitative, cross-sectional; 72 subjects with MS and their self-administered questionnaires partners
Sample characteristics
Akkus (2011)
Correlational study; 49 family caregivers self-administered questionanires Alshubaili et al. Case–control; self-administered 170 family caregivers (2008) questionnaires Argyriou et al. (2011) Argyriou et al. (2011) Aymerich et al. (2009) Bjorgvinsdottir and Halldorsdottir (2013) Bogosian et al. (2011)
Case–control; self-administered questionnaires Cross-sectional; self-administered questionnaires Cross-sectional, multicenter; self-administered questionnaires Retrospective qualitative; unstructured interview
35 family caregivers of people with secondary progressive MS 35 family caregivers of people with secondary progressive MS 551 family caregivers
Qualitative; semistructured, open-ended interview
15 adolescents aged 13–18 years, 11 families, six single parents and five parents with minimal ambulation difficulties
Bogosian et al. (2009)
Exploratory; semistructured in-depth telephone interviews
15 partners of people in the early stages of MS who were not in a caregiving role, aged 32–59 years
Boland et al. (2012) Bowen et al. (2011)
Qualitative; semistructured interview Cross-sectional qualitative, multicenter; semistructured interview Cross-sectional computer-assisted telephone interview study
Seven subjects with MS and their partners 25 relatives visiting family members with advanced MS in long-term care
Buchanan and Huang (2011)
11 young adults who were caregivers of a disabled single parent at ages between 5 and 18 years
530 informal caregivers
Buchanan et al. Cross-sectional study; telephone 527 caregivers (2009) interviews
Buchanan and Huang (2012) Ehrensperger et al. (2008) Glantz et al. (2009)
Cross-sectional study, computer-assisted telephone interview Cross-sectional; semistructured interview Prospective cohort study
Lehan and Correlational study; Arangopsychologist-administered Lasprilla (2012) questionnaires
442 caregivers
44 parents with MS, 36 healthy partners, 72 children Three disease groups (malignant primary brain tumor, cancer or MS) of married subjects – MS 108 (21%) 79 caregivers
Aspects assessed
Ref.
Positive outcomes related to diagnosis, illness perception, depression and cognition Burden of caregiving, psychological and social needs Quality of life, feelings about family member’s illness and anxiety about the possibility of having MS Anxiety, depression and quality of life
[27]
[17] [23]
[16]
Anxiety, depression and sleep quality
[22]
Health-related quality of life, psychological distress and socioeconomic factors Personal experience of being a young carer, caring responsibilities and feelings related to responsibilities and to parent’s MS
[19] [10]
Effect of parent’s MS on child’s social and family life, main caregiving issues and concerns, feelings, practical problems, and aspects that were helpful or unhelpful in dealing with problems Thoughts and feelings at the time of diagnosis and presently, impact of MS on different aspects of life and coping with challenges Changes in coping over time
[29]
Coping, decision-making, support needs, relationship changes, impact of MS and care issues Quality of life, caregiver’s perceptions of assisting a person with a significant level of functional impairment and impact of providing assistance affected the caregiver Satisfaction with access to health services and with quality of formal care, information needs, feelings about the caregiving experience and health-related quality of life Feelings and attitudes experienced when providing care, and health-related quality of life Coping ability and depression
[31]
Demographic characteristics in divorce or separation Distress associated with patient’s symptoms, depression
[8]
[12]
[18]
[24]
[25]
[33]
[5]
[21]
MS: Multiple sclerosis.
future science group
www.futuremedicine.com
179
Review Messmer Uccelli Table 1. Summary of study, sample characteristics and aspects assessed (cont.). Study (year)
Study design characteristics
Sample characteristics
Aspects assessed
Ref.
Liedstöm et al. (2010) McPheters and Sandberg (2010) Messmer Uccelli et al. (2013)
Qualitative; semistructured interview and questionnaire Quantitative, correlational; self-administered questionnaires
29 partners, ten parents, three siblings and two adult children 54 subjects with MS and their partners
Quality of life
[13]
Mutch (2010)
Qualitative study, semistructured Eight spouse caregivers interview
Case–control study; 30 parents (15 couples) with a self-administered questionnaires child with MS
