Cancer caregivers’ perceptions of an exercise and nutrition program

Purpose

Little research has addressed exercise and nutrition-based interventions for cancer caregivers. This study explored cancer caregivers’ perceptions of participating in a structured exercise and nutrition program alongside cancer survivors for whom they provided care.

Methods

In-depth, semi-structured interviews were conducted by one interviewer with 12 cancer caregivers about their experiences participating in a structured, 12-week exercise and nutrition program designed for cancer survivors and caregivers to complete concurrently. Interviews were conducted until data saturation was reached.

Results

Inductive content analysis from individual interviews indicated three separate, but interrelated, themes: (1) the program was a positive mechanism through which caregivers shared and supported the cancer journey concurrently with survivors, (2) the program led to perceived physical and psychological benefits for both caregivers and survivors, and (3) participants perceived that participation in the program led to feeling increased social support in their caregiving duties.

Conclusions

Findings from this study suggest that participating in an exercise- and nutrition-based intervention is viewed positively by caregivers and that the outcomes are seen as beneficial to both caregivers and survivors. Interventions that address the health needs of both members of the caregiver–survivor dyad should continue to be encouraged by allied health professionals.     

Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges

Purpose

Lung cancer and its treatment impose many demands on family caregivers, which may increase their risk for distress. However, little research has documented aspects of the caregiving experience that are especially challenging for distressed caregivers of lung cancer patients. This study aimed to explore caregivers’ key challenges in coping with their family member’s lung cancer.

Methods

Single, semi-structured qualitative interviews were conducted with 21 distressed family caregivers of lung cancer patients.

Results

Caregivers described three key challenges in coping with their family member’s lung cancer. The most common challenge, identified by 38 % of caregivers, was a profound sense of uncertainty regarding the future as they attempted to understand the patient’s prognosis and potential for functional decline. Another key challenge, identified by 33 % of caregivers, involved time-consuming efforts to manage the patient’s emotional reactions to the illness. Other caregivers (14 %) characterized practical tasks, such as coordinating the patient’s medical care, as their greatest challenge.

Conclusions

Results suggest that clinical efforts are needed to assist distressed caregivers in providing practical and emotional support to the patient and attending to their own emotional needs.     

Distress among caregivers of phase I trial participants: a cross-sectional study

Purpose

The number of patients with cancer enrolling in phase I trials is expected to increase as these trials incorporate patient selection and exhibit greater efficacy in the era of targeted therapies. Despite the fact that people with advanced cancer often require a caregiver, little is known about the experience of caregivers of people enrolling in oncology phase I clinical trials. We conducted a cross-sectional study assessing the distress and emotion regulation of caregivers of phase I trial participants to inform the design of future interventions targeting the unique needs of this population.

Methods

Caregivers of oncology patients were approached at the patient’s phase I clinical trial screening visit. Caregiver participants completed a one-time survey incorporating validated instruments to comprehensively assess distress and emotion regulation. Basic demographic information about both the caregiver and patient was collected.

Results

Caregivers exhibited greater distress than population norms. Emotion regulation was also moderately impaired. Respondents identified positive aspects of caregiving despite exhibiting moderate distress.

Conclusion

Enrollment of a patient in a phase I clinical trial is a time of stress for their caregivers. This pilot study demonstrates the feasibility of engaging caregivers of phase I trial participants and the need to better support them through this component of their caregiving experience.     

Economic and social changes among distressed family caregivers of lung cancer patients

Purpose

Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the USA.

Methods

Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N?=?83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes 3 months later.

Results

Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56 %) and, among employed caregivers (n?=?49), reduced hours of work (45 %). In 18 % of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28 % of caregivers reported losing the main source of family income, and 18 % reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress.

Conclusions

Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention.     

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

Purpose

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.

Methods

Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.

Results

Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.

Conclusions

Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.

Structured abstract

The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.     

Chronicles of informal caregiving in cancer: using ‘The Cancer Family Caregiving Experience’ model as an explanatory framework

Background

Cancer caregiving has emerged as a dominant focus of research in recent years. A striking feature of this vast amount of literature is that it is static, examining certain points of the cancer trajectory, mostly the diagnosis and palliative care. Only The Cancer Caregiving Experience Model conceptualised the caregiving experience and explored the conceptual implications of cancer family caregiving research.

Aim

The data from this paper aim to empirically support the Cancer Caregiving Experience model, by exploring the cancer caregiving experience longitudinally.

Methods

Semi-structured interviews with 53 caregivers were carried out at patient’s diagnosis (T1), 3 months (T2), 6 months (T3) and 12 months (T4) post diagnosis.

Results

Analysis of 139 interviews generated four themes that reflected a complex and dynamic process. The themes that mapped those of the model were “Primary stressors”, “Secondary stressors”, “Appraisal”, “Cognitive-Behavioural responses” and “Health and Well Being”.

Conclusions

The study adds empirical support to The Cancer Caregiving Experience Model and confirms that different primary and secondary stressors influence how the caregivers perceive the caregiving demands, the coping mechanisms they employ and their health and well being during the cancer trajectory. Access to support services should be offered to all the caregivers from as early as the diagnosis period and take into account their specific needs.     

Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors

Purpose

This study aims to examine the unmet needs and psychological distress (anxiety and depression) in family caregivers of renal cell carcinoma survivors.

Methods

A cross-sectional study design was used. Unmet needs were assessed with the Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C) questionnaire, and psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS) in a telephone survey of 196 caregivers of renal cell carcinoma (RCC) survivors. Chi-square tests examined bivariate relationships, and multivariate logistic regression examined the associations between anxiety and depression and of unmet needs with caregivers’ experience of patients’ care, time spent caregiving, caregivers’ demographic characteristics and patients’ disease stage.

Results

Sixty-four percent of caregivers had at least one low, moderate or high unmet need, with 53 % reporting at least three needs and 29 % reporting 10 or more unmet needs (median 2, range 0–38). Elevated anxiety (HADS-A?>?8) and depression (HADS-D?>?8) were found in 29 and 11 % of the sample, respectively. Psychological and emotional needs were associated with advanced cancer stage (stages 3 and 4) (OR 3.07, 95 % CI 1.35–6.76) and with experience of care during surgery (OR 0.87, 95 % CI 0.78–0.99). Healthcare service needs were associated with time spent caregiving, with caregivers spending >1 h/day in the past week having three times higher odds (OR 3.44, 95 % CI 1.52–7.72) than those not spending any time. Odds of experiencing information needs were lower in caregivers who were in a relationship (OR 0.20, 95 % CI 0.04–0.83). Elevated anxiety (OR 1.59, 95 % CI 1.09–2.33) and depression (OR 2.02, 95 % CI 1.08–3.79) were associated with unmet information needs. Depression was also associated with experiences of care during treatment (OR 0.69, 95 % CI 0.49–0.96).

Conclusion

RCC caregivers’ unmet information needs are associated with elevated anxiety and depression. Improved experiences of cancer care are associated with lower odds of unmet needs and elevated depression in RCC caregivers.

     

What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention

Purpose

Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers’ experiences.

Method

Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care.

Results

Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient’s condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems.

Conclusions

Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.     

Caregivers’ morbidity in palliative care unit: predicting by gender, age, burden and self-esteem

Purpose

This study assesses psychological distress suffered by caregivers of patients with a disease at an advanced and terminal state admitted at a palliative care unit. Specifically, these areas were examined in how distress was perceived: the contribution of caregiving burden, caregivers’ self-esteem, caregivers’ age and gender.

Methods

The sample constituted of 159 caregivers. Measurements included the Hospital Anxiety and Depression Scale (HADS) to assess distress, the shortened version of the Zarit Burden Inventory and Rosenberg self-esteem scale.

Results

Approximately 77% of the caregivers reported probable significant distress (HADS ≥12), with a similar proportion with anxiety (76.1%) and depression (77.4%) within the caregivers’ symptomatology. Multiple regression analysis revealed that the caregivers’ self-esteem (p?<?0.01) and caregivers’ burden (p?<?0.01) were stronger predictors of caregivers’ distress than the socio-demographic characteristics, age or gender (p?<?0.05).

Conclusions

A high prevalence of morbidity was noticed in caregivers of patients admitted at the palliative care unit. The early provision of psychological support to caregivers by healthcare staff may indeed help to decrease comorbidity symptoms.     

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives

Purpose

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient’s illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers’ key challenges in coping with their family member’s advanced colorectal cancer from the perspective of patients and caregivers.

Methods

Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis.

Results

In nearly all cases, patient and caregiver reports of the caregiver’s key challenge were discrepant. Across patient and caregiver reports, caregivers’ key challenges included processing emotions surrounding the patient’s initial diagnosis or recurrence and addressing the patient’s practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient’s potential functional decline and prognosis and observing the patient suffer from various physical symptoms.

Conclusions

Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers’ challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

     

Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

• Implications for Rehabilitation

• Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress.

• More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.

• Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.

     

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs

Background

Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods

Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results

Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions

This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer     

Touch, Caring, and Cancer: randomized controlled trial of a multimedia caregiver education program

Purpose

A randomized controlled trial was conducted to evaluate outcomes of a multimedia instructional program for family caregivers in simple touch-based techniques to provide comfort to cancer patients at home.

Methods

A multilingual 78-min DVD and 66-page manual were produced for homebased instruction. Content addresses attitudes and communication about touch in cancer, psychological preparation for giving and receiving touch, safety precautions, massage techniques for comfort and relaxation, acupressure for specific cancer-related symptoms, and practice in the home setting. Materials were produced in English, Spanish, and Chinese versions. A community-based multiethnic sample of 97 adult patient/caregiver dyads was randomized to experimental (massage) or attention control (reading) groups for 4 weeks. Massage dyads received the program and instructions to practice at least three times per week, while control caregivers read to their patients for the same frequency. Self-report instruments assessed change in symptom severity, quality of life, perceived stress, and caregiver attitudes.

Results

Significant reductions in all symptoms occurred for patients after both activities: 12–28 % reductions after reading vs. 29–44 % after massage. Massage caregivers showed significant gains in confidence, comfort, and self-efficacy using touch and massage as forms of caregiving.

Conclusions

Multimedia instruction in touch and massage methods may offer family members a viable means of enhancing self-efficacy and satisfaction in caregiving while decreasing patient pain, depression, and other symptoms. Family members may be able to learn and apply safe and simple methods that increase patient comfort and reduce distress.     

Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance

Goals of work

Family caregivers play an important role in caring for cancer patients, but the impact of caregivers’ unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood.

Patients and methods

We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL).

Results

Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P?<?0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR)?=?7.55; 95% confidential interval (CI) 3.80–15.00), psychosocial support (aOR?=?6.24; 95% CI 2.95–13.05), symptom management (aOR?=?3.21; 95% CI 2.26–4.54), community support (aOR?=?3.82; 95% CI 2.38–6.11), or religious support (aOR?=?4.55; 95% CI 1.84–11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR?=?1.21; 95% CI 1.00–1.47), psychosocial support (aOR?=?1.99; 95% CI 1.37–2.88), and religious support (aOR?=?1.73; 95% CI 1.08–2.78) than those of patients receiving palliative hospice care.

Conclusions

Caregivers’ unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.     

The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

Purpose

We examined cancer survivors’ experience of bothersome symptoms, association of symptom bother with health-related quality of life (HRQOL), survivors’ perception of symptom care, and their symptom-related information needs.

Methods

Using self-report survey measures, survivors of leukemia, bladder, or colorectal cancer who were 2–5 years post-diagnosis and received follow-up care in the past year (N?=?623) provided information about the presence of bothersome symptoms, symptom-related information needs, adequacy of symptom-related care, and their physical and mental HRQOL. Multivariable statistical analyses were conducted to identify correlates of symptom bother, inadequate care, and symptom information needs and to examine the association between symptom bother and HRQOL.

Results

Twenty-eight percent of the 606 respondents experienced symptom bother in the past year (46 % of leukemia, 24 % of bladder, and 26 % of colorectal cancer survivors). Younger survivors, those of Hispanic ethnicity, with low income, those with recurrent cancer, and chemotherapy recipients were more likely to report symptom bother (all p?<?0.05). Symptom bother was associated with lower physical and mental HRQOL (p?<?0.001). While 92 % of survivors with symptoms discussed them with their follow-up care physician, 52 % of these reported receiving inadequate symptom care. Survivors reporting inadequate symptom care were 2.5 times as likely to identify symptom information needs compared to those who received adequate care (p?<?0.05).

Conclusions

One in four cancer survivors report symptoms 2–5 years post-diagnosis, and only half of these survivors receive adequate care to address those symptoms. Research that refines and tests symptom care interventions for this population is warranted.     

Development and preliminary evaluation of a telephone-based coping skills training intervention for survivors of acute lung injury and their informal caregivers

Purpose

Survivors of acute lung injury (ALI) and their informal caregivers have difficulty coping with the physical and emotional challenges of recovery from critical illness. We aimed to develop and pilot test a telephone-based coping skills training intervention for this population.

Methods

Fifty-eight participants were enrolled overall. A total of 21 patients and 23 caregivers participated in a cross-sectional study to assess coping and its association with psychological distress. This also informed the development of an ALI coping skills training intervention in an iterative process involving content and methodological experts. The intervention was then evaluated in seven patients and seven caregivers in an uncontrolled, prospective, pre-post study. Outcomes included acceptability, feasibility, and symptoms of psychological distress measured with the Hospital Anxiety and Depression Scale (HADS) and Post-Traumatic Symptom Scale (PTSS).

Results

Survivors and their caregivers used adaptive coping infrequently, a pattern that was strongly associated with psychological distress. These findings informed the development of a 12-session intervention for acquiring, applying, and maintaining coping skills. In the evaluation phase, participants completed 77 (92?%) of a possible 84 telephone sessions and all (100?%) reported the intervention’s usefulness in their daily routine. Mean change scores reflecting improvements in the HADS (7.8?U) and PTSS (10.3?U) were associated with adaptive coping (r?=?0.50–0.70) and high self-efficacy (r?=?0.67–0.79).

Conclusions

A novel telephone-based coping skills training intervention was acceptable, feasible, and may have been associated with a reduction in psychological distress among survivors of ALI and their informal caregivers. A randomized trial is needed to evaluate the intervention.     

Lifestyle issues for colorectal cancer survivors��perceived needs, beliefs and opportunities

Purpose

As survival rates for patients treated with colorectal cancer (CRC) increase, it is important to consider the short- and long-term self-management needs. The current work aimed to explore perceived patient needs for advice on diet, activity and beliefs about the role of lifestyle for reducing disease recurrence.

Methods

Forty colorectal cancer survivors, aged between 27 and 84, participated in six focus groups in community locations in the UK.

Results

The findings suggest that CRC survivors would welcome guidance on diet in the immediate posttreatment period to alleviate symptoms and fears about food choices. Many participants actively sought lifestyle advice but experienced confusion, mixed messages, culturally inappropriate guidance and uncertainty about evidence of benefit. There was scepticism over the role of diet and physical activity as causes of cancer, in part because people believed their lifestyles had been healthy and could not see how reinstating healthy behaviours would reduce future disease risk. The sense of changing lifestyle to ??stack the odds in their favour?? (against recurrence) appeared a more meaningful concept than prevention per se. Those people who had made or maintained dietary changes highlighted the importance of these to contributing to wellbeing and a sense of control in their life.

Conclusions

A dogmatic approach to lifestyle change may lead to perceptions of victim blaming and stigmatisation. Personalised, evidence informed, guidance on lifestyle choices does appear to be a much needed part of care planning and should be built in to survivorship programmes.     

Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

Implications for Rehabilitation

• Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases.

• Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment.

• Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal caregivers.