Abstract
Context
Objectives
Methods
Results
Conclusion
Key Words
Key Message
Introduction
- Erkkinen MG
- Kim MO
- Geschwind MD
- Erkkinen MG
- Kim MO
- Geschwind MD
- Prigerson HG
- Horowitz MJ
- Jacobs SC
- et al.
Downing NR, Gaba A, Gorski SL, et al. A caregiver guide for HD families. In: Leserman A, Lovecky D, eds. Available at: http://hdsa.org/wp-content/uploads/2016/05/HDSA_CaregiverGuideFamilies_Final.pdf. Accessed January 9, 2020.
Barton S, Erwin C, Heller H, Nance M, Kogan J. Advance directives for Huntington's disease: HDSA family guide series. In: Kogan J, ed. Available at: http://hdsa.org/wp-content/uploads/2015/03/HDSA_Family-Guide-Advance-Directives-for-HD.pdf. Accessed January 9, 2020.
Methods
Eligibility Criteria
Research question: What is known about the spiritual suffering, grief, and coping strategies for caregivers of patients with Huntington's disease? Literature Search: “Huntington's Disease” AND “caregiver” AND “suffering” / “grief” / “coping” and synonyms |
Inclusion Criteria:
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Exclusion Criteria:
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Search Strategy
We performed a literature search and consulted with a research librarian. The databases PubMed, CINAHL, EMBASE and PsycINFO were searched using the following keywords and their synonyms: “Huntington's Disease” AND “caregiver” AND “suffering” / “grief” / “coping”. The following number of potential articles were identified with the corresponding search strategies: | |
PubMed: 268 articles | CINAHL: 105 articles EMBASE: 143 articles PsycINFO: 180 articles |
Huntington Disease [MeSH] OR "Huntington Disease"[tiab] OR "Huntington's Disease" [tiab] OR “Huntington Chorea” [tiab] OR “Chronic Progressive Hereditary Chorea” [tiab] OR “Huntington's Chorea” [tiab] OR “Late-Onset Huntington Disease” [tiab] OR “Late Onset Huntington Disease” [tiab] OR “Juvenile Huntington Disease” [tiab] OR “Juvenile-Onset Huntington Disease” [tiab] OR “Juvenile Onset Huntington Disease” [tiab] | “Huntington Disease” OR "Huntington's Disease" OR “Huntington Chorea” OR “Chronic Progressive Hereditary Chorea” OR “Huntington's Chorea” OR “Late-Onset Huntington Disease”OR “Late Onset Huntington Disease”OR “Juvenile Huntington Disease”OR “Juvenile-Onset Huntington Disease” OR “Juvenile Onset Huntington Disease” |
Caregivers [MeSH] OR Caregivers [tiab] OR Caregiver [tiab] OR Caregiving [tiab] OR Family [tiab] OR Spouse [tiab] OR Carer [tiab] OR partner [tiab] OR relative [tiab] OR offspring [tiab] OR dependent [tiab] OR wife [tiab] OR husband [tiab] | Caregivers OR Caregiver OR Caregiving OR Family OR Spouse OR Carer OR partner OR relative OR offspring OR dependent OR wife OR husband |
“Existential suffering” [tiab] OR “existential distress” [tiab] OR “existential pain” [tiab] OR faith [tiab] OR “spiritual belief” [tiab] OR “religious belief” [tiab] "Stress, Psychological"[Mesh] OR Depression [mesh] OR Quality of Life [mesh] OR Anxiety [mesh] OR Emotions [mesh] OR shame [tiab] OR guilt [tiab] OR distress [tiab] OR anger [tiab] OR grief [tiab] OR Bereavement [tiab] OR Fear [mesh] OR Fear [tiab] OR Fears [tiab] OR Spirituality [tiab] OR religion [tiab] OR God [tiab] Adaptation, Psychological [mesh] OR “Psychological Adaptation” [tiab] OR “Psychological Adaptation” [tiab] OR “Coping Behavior” [tiab] OR “Coping Behaviors” [tiab] OR “Coping Skills” [tiab] OR “Coping Skill” [tiab] OR coping [tiab] OR “Adaptive Behavior” [tiab] OR “Adaptive Behaviors” OR well-being [tiab] OR distress [tiab] OR Suffering [tiab] | “Existential suffering” OR “existential distress” OR “existential pain” OR faith OR “spiritual belief” OR “religious belief” OR "Stress, Psychological" OR Depression OR Quality of Life OR Anxiety OR Emotions OR shame OR guilt OR distress OR anger OR grief OR Bereavement OR Fear OR Spirituality OR religion OR God OR Adaptation, Psychological OR “Psychological Adaptation” OR “Psychological Adaptation” OR “Coping Behavior” OR “Coping Behaviors” OR “Coping Skills” OR “Coping Skill” OR coping OR “Adaptive Behavior” OR “Adaptive Behaviors” OR well-being OR distress OR Suffering |
Study Selection

Thematic Induction and Taxonomy Synthesis
Puchalski CM, Ferrell B, Otis-Green S, Handzo G. Overview of spirituality in palliative care. UpToDate. Available at: https://www.uptodate.com/contents/overview-of-spirituality-in-palliative-care. Accessed July 7, 2022.
- Lowit A
- van Teijlingen ER
Data Extraction
- Brady SR
Results
First Author Year Published | Journal Focus (Audience) | Participant Countries | Study Participants (Caregivers) | Number of Participants | Study Design |
---|---|---|---|---|---|
Anderson 2019 165 | Neuroscience | USA | Family Members | 511 | Survey |
Aubeeluck 2006 10 | Neuroscience | UK | Spouse / Partner | 5 | Other |
Aubeeluck 2012 96 | Quality of Life | UK | Family Members | 47 | Focus Groups |
Brewer 2008 16 | Psychology | UK | Parent | 12 | Interviews |
Brouwer-DudokdeWit 2002 140 | Sociology | Netherlands | Unspecified | 6 | Case Studies |
Cox 2012 166 | Nursing | USA | Unspecified | 31 | Survey |
Dawson 2004 99 | Nursing | Australia | Unspecified | 19 | Interviews |
Decruyenaere 2005 9 | Genetics | Belgium | Dyad | 16 | Survey |
Domaradzki 2016 101 | Psychology | Poland | Family Members | 55 | Interviews |
Etchegary 2011 100 | Medical | Canada | Family Members | 10 | Interviews |
Halpin 2012 93 | Thanatology | Canada and USA | Family Members | 10 | Interviews |
Helder 2002 131 | Psychology | Netherlands | Spouse / Partner | 90 | Survey |
Kavanaugh 2014 117 | Sociology | USA | Child | 40 | Survey |
Kavanaugh 2017 133 | Sociology | Canada and USA | Family Members | 43 | Mixed-method |
Keenan 2007 118 | Genetics | UK | Child | 12 | Interviews |
Kessler 1993 114 | Genetics | USA | Spouse / Partner | 5 | Case Studies |
Lewit-Mendes 2018 119 | Neuroscience | North America, Europe, Australasia, Asia | Child | 84 | Survey |
Lowit 2005 90
Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's disease patients. BMC Fam Pract. 2005; 6https://doi.org/10.1186/1471-2296-6-38 | Medical | UK | Spouse / Partner | 10 | Interviews |
Mand 2015 120 | Neuroscience | Australia | Child | 8 | Interviews |
Oliveira 2020 95 | Genetics | Portugal | Family Members | 9 | Interviews |
Oliver 1969 143 | Medical | UK | Family Members | 40 | Other |
Oosterloo 2020 17 | Neuroscience | Netherlands | Parent | 10 | Interviews |
Roscoe 2009 124 | Sociology | USA | Family Members | 17 | Survey |
Røthing 2015 141 | Sociology | Norway | Family Members | 15 | Interviews |
Røthing 2014 142 | Nursing | Norway | Family Members | 15 | Interviews |
Sherman 2020 167 | Neuroscience | USA | Family Members | 17 | Focus Groups |
Sobel 2003 94 | Sociology | Canada, USA | Unspecified | 55 | Interviews |
Soltysiak 2007 168 | Nursing | UK | Unspecified | 9 | Focus Groups |
Sparbel 2008 121 | Genetics | Canada, USA | Child | 32 | Focus Groups |
Tyler 1983 5 | Sociology | South Wales (UK) | Family Members | 76 | Other |
Vamos 2007 7 | Psychology | Australia | Child | 40 | Survey |
Williams 2000 169 | Genetics | USA | Unspecified | 18 | Mixed-method |
Williams 2009 122 | Nursing | Canada, USA | Child | 24 | Focus Groups |
Williams 2013 170 | Nursing | USA | Child | 44 | Survey |
Williams 2012 171 | Nursing | USA, UK | Family Members | 227 | Survey |
Williams 2009 14 | Nursing | Canada, USA | Family Members | 42 | Focus Groups |
Study Characteristics
Comprehensive Taxonomy of Spiritual Suffering, Grief/Loss, and Coping Strategy Themes
Spiritual Suffering | Meaning Distress | Struggling with meaninglessness in life or suffering, nihilism; questioning meaning in life: "Why me?" "What's the point?" |
Divine / Transpersonal Suffering | Divine detachment / alienation. Feeling God has abandoned, is angry at, punishing/judging the patient/caregiver; unshakable attacks by evil spirits. Shattered God Image / world-view; unresolved anger or bitterness toward God. Questioning cosmic justice / fairness, and/or faith / trust relationship with God / the world. Fear of going to Hell. | |
Existential Angst in Uncertainty | Struggling with uncertainty by experiencing significant angst/dread, hopelessness/despair, and/or intense fear regarding the future. [Hope is a meaning-based feasible-if transcendent-goal, with a pathway and agency. It is not outcome- or event-based]. Grave anxiety associated with genetic testing for an inherited disorder. | |
Disrupted Religious Relationships (Interpersonal) | Spiritual (meaning-based and purpose-related) and religious (beliefs and practices) tensions and conflicts with family, friends, and faith leaders and communities. Hurt or offended by failures in one's faith community (e.g., by condemnation for anger at God, exclusion from, gossip about, or failure to openly support one's struggles without bias). | |
Self-Image Distress (Intrapersonal) | Struggling with or loss of personal identity / sense of self, personhood, dignity; unstable values and/or feeling of purpose in life, beliefs and faith practices. Guilt/shame, self-blame, deep regrets; moral distress in caregiving vs. other roles; helplessly witnessing undue suffering in their loved one. Biopsychosociospiritual trauma / violence / abuse wounds. | |
Grief/Loss | Grief Symptoms | Explicit: (1) anticipatory grief; and/or (2) symptoms, including overshadowing sadness and/or anger/irritability, numbness, decreased concentration, preoccupation, helplessness; sleep, appetite and functional disturbances. |
Ambiguous Loss of Loved One | The ambiguous loss of the patient's / loved one's personhood / identity (typically physical presence with cognitive, affective, and/or behavioral decline) leading to disenfranchised grief (wherein the loss cannot be openly acknowledged, socially sanctioned or publicly mourned). Along with other symptoms, spousal caregivers may feel trapped and say, "This is not the person I married" and/or ruminate about their loved one before... | |
Loss of Family Structure | Loss of family structure / cohesion, fractured previously-intimate family relationships / bonds. Displays of familial emotional / relational cutoff, estrangements, conflicts, with unfulfilled longings or no desires for forgiveness / reconciliation. | |
Loss of Social Connectedness | Isolation / loneliness. Loss of important relationships / social connectedness outside the family. Caregivers may feel detached, like no one cares or understands, seek isolation from embarrassment, and/or not have the time to socialize. | |
Personal Losses | Practical personal life losses: Arrested personal and professional / educational development. Personal societal connection losses, e.g., job, school, childhood, financial and living resources. | |
Adaptive Coping | Healthy Emotional Management | Processing and expressing lament and anger (including at God), ambivalence, fear/anxiety, guilt, and sadness; practicing self-forgiveness; having a positive affect and attitude. |
Active Problem-Solving | Accurate appraisal, active problem-solving; seeking psychological, social, and/or spiritual/religious support; new boundary setting, arranging respite; good self-care (exercise, diet, sleep, etc.); exercising agency, acting on plans. | |
Creative / Transcendent Coping | Seeking peace, self-awareness, forgiveness, grace, love. Accepting reality with meaning and purpose reconstruction and hope reframing; experiencing flow [positive life engagement in the now] and joy. Embracing aesthetics/art/music, gratitude, humor, faith, mystery/unknowing. Practicing mindfulness meditation, reflection, contemplative prayer, collaborative (with one's Image of God) spiritual coping; self-compassion. | |
Maladaptive Coping | Dysfunctional “Coping” Escapes | Persistent emotional or relational disengagement / escape [not oscillation between hope and fearful “avoidance,” which is normal]. Dysfunctional emotional management, e.g., remaining stuck in self-blame, depression, paralyzing anxiety/fear and/or anger. Promoting family dysfunction with emotional cutoff, triangulation, gossip, secrets, projection, passive aggression, blame-shifting; intentional social isolation. Passive religious "coping," e.g., petitionary prayer, clinging to unrealistic wishes. Not acting on plans; lack of self-care / boundaries; substance use (e.g., ETOH, benzodiazepines). |

Spiritual Suffering Themes
“I've had three very close family members die of cancer, and you go through it and you don't necessarily get over it, but you do get on with your life … and there is support for the survivor. You know, with Huntington's, the time period is so long and it's just this very slow walk down a very long road. You know each day is just slightly worse than the day before. And there is no end to the tunnel, and you don't know what you're going to face.”14
“We had a farm, and one day he [father] just kind of brought in the veterinarian and he put all the animals to sleep on the farm. I guess he felt maybe we couldn't take care of them. Another day he took me aside just to make sure I knew how to run the farm, and stuff like that. And, of course, what happened was he killed himself. … I can certainly understand why he made that decision and I think he really kind of did it for our family's benefit too.”93
Grief/Loss Themes
Coping Themes
Representative Thematic Quotes
Theme | Author (Year) | Quotes (page number) |
---|---|---|
Meaning Distress | Sobel (2003) | “You hear all these percentages and I've always thought, ‘big deal for the one who gets it—with anything—heart disease, whatever.’ You're the loser, and that's the one thing we have to prepare ourselves for. We can be the losers in the game.” (51) |
Divine / Transpersonal Suffering | Sobel (2003) | A 16-yr-old brother of a sister who tested positive told their mother: “God doesn't have a plan. He just sets up a guideline and away we all go.” Their mother replied: “Yes. Your sister lost the lottery.” (53) |
Existential Angst in Uncertainty | Cox (2012) | “I may also develop the disease myself one day. No one wants to settle down with someone who may develop HD.” (292) |
Keenan (2007) | “I love my mum to bits, I always want to help her as much as I can, but it just gets so much as times ... And every time when I go in and open her door, I'm always dreading in case I see her lying there with a cracked skull.” (124) A 26-yr-old, who supported her 12- and 16-yr-old cousins and their mother (with HD): “… when my gran was away on holiday I was about tearing my hair out … anytime there's an argument, her mum storms out saying ‘Oh I'm going to take pills, I'm going to kill myself,’ stuff like this. And I'm like at my work thinking what the hell can I do? You see she hasn't got her husband anymore; he left...” (123) | |
Mand (2015) | “I think I'd feel a lot of guilt if I was gene-negative, because even though I'd dodged a bullet, my brother and sister were still in the firing line, and I wouldn't breathe easy until I knew they didn't have it.” (213) | |
Disrupted Religious Relationships | Sobel (2003) | “People at church brushed it off with, ‘God will provide a miracle,’ and they weren't allowing me to face the reality.” (52) |
Self-Image Distress (Intrapersonal) | Sobel (2003) | “He [the father] was extremely upset because he felt he had done this to his daughter. He started to hate himself. I think he loathes himself and wants an excuse not to live anymore.” (52) |
Williams (2009b) | “I'm very concerned, I have these meltdowns … it scares me, because I'm trying to be strong and I'm trying to be a superwoman and be great at my job, be a great wife, be a great mom.” (793) | |
Grief Symptoms | Williams (2000) | Anticipatory grief after their loved one's positive genetic test: “The main thing that bothers me is that I know how she's going to be and I'd like to spend more time with her and my job just doesn't allow it. I feel like I'm missing the best part of her.” (357) |
Ambiguous Loss of Loved One | Aubeeluck (2012) | “I have always enjoyed my wife's company, but … I get these alternating feelings of sadness at the gradual passing of a warm and loving relationship with my wife, then anger at the behaviour. I think the worst thing is this roller-coaster nature of the mood swings so I never quite know who I'm going home to.” (1431) |
Brewer (2008) | “Adam … doesn't appear to be anything like what you've ever seen … in HD. Adam is just really badly behaved; doesn't listen, doesn't do as he's told, hyperactive, like he's been charged up, doesn't listen … totally different, like nothing I've ever seen.” (8) | |
Dawson (2004) | “I guess in a way the grieving of [loss of a husband] is over. I realize that I've now got a dependent whose personality is quite different to the man I married. Quite totally different actually so I now look at him as a 12, 13-yr-old male child.” (126) “I miss the companionship. Having a dependent who's no longer a husband that you can no longer talk to anymore because you can't have conversations anymore unless he's starting the conversation.” (127) A parent, regarding an adult son: “He was getting very aggressive like we were walking on eggshells towards the end. He was starting to get aggressive and hitting … into the children [grandchildren], … and we couldn't cope with that.” (127) | |
Røthing (2014) | “What hurts me most is that you lose the one you loved. A complete different person is sitting in the dining room today, another person than the one who was my husband yrs ago. That is sad for me. I am more like a caring person now, not his spouse and loved one as I was.” (702) “Yes, there is a lot of frustration because me and my sister were best friends, super friends, sharing everything, clothes, boyfriends, and excitements, and now she is not here…” (702) | |
Loss of Family Structure | Etchegary (2011) | “People don't know that kids need counseling too. They are living in a verbally abusive environment.” (231) |
Mand (2015) | “It's a pretty negative situation in my dad's family … when we go to grandma's we can't mention it, it's like it's something to hide because that's how they all view it, like it's shameful … my aunties and uncle are like ‘it's dad's disease now.’” (212) | |
Williams (2011) | “I wanted to stand by her forever, but now I realise I am not a saint who can go on giving and giving without getting any love or peace. I don't expect we will manage to remain a family much longer.” (142) | |
Loss of Social Connectedness | Brewer (2008) | “I don't go shopping with him ... I wouldn't go … into the town centre, because he just wanders off … he pokes everybody, … and you're on a bus and lots of people look. … I've always said I'd rather … cut out a few of the things in the day, … because that's making him quite socially unacceptable. People find that hard to tolerate … Especially where you're in a situation where other people may look.” (11) |
Cox (2012) | “Social circle is very small because of HD.” (292) | |
Oosterloo (2020) | “Maybe she wouldn't have been so alone and isolated from other children. She was so alone, that was incredibly sad. Of course, I don't know how she experienced it.” (9) | |
Personal Losses | Aubeeluck (2006) | “The suffocation of my space and time, I miss out on so many things and instead I am on the never-ending relentless journey towards her death.” (101) |
Aubeeluck (2012) | “…the other part that goes with it is the costings. We won't have anything to do with it as the carers we, we make sure that - there is a real implication between what the government are defining as healthcare and social care and when you back to the finances cos they're all interlinked there are a number of hoops that you've already got with a neurological terminal condition, it's ridiculous, there should be a much simpler way, um and I think a a a way of relief to come …” (1431) | |
Cox (2012) | “I am stuck at home caring for my mom. I love her and want to care for her, but I am stuck, which is killing my independence and my ability to find happiness in relationships.” (292) | |
Keenan (2007) | “Before school we had to get my mum bathed, changed, get her breakfast, plus get us showered and changed. Plus you'd have to do all the tidying up before you went … and then coming home tea would have to get made. I missed most of my third yr at school because of it. I didn't like leaving mum here on her own during the day while me and my sister were at school and my dad was out working so some days I would skive off just to make sure she was all right.” (122) | |
Mand (2015) | “I don't go to school, I quit in April. I just help dad around the house, he needs it because he works full time and my brother is at school, so I stay home and look after the house … Most of my friends are still at school so I don't get to see them often.” (212) | |
Sparbel (2008) | A teenager: “My dad [with HD]… he doesn't eat, you have to feed him. If he's not cooperating, then she [my unaffected mother] has to take care of everything else … so I try to watch over her [my mom] too … I'll run her errands, I'll clean the house, cook some food, so she takes care of my dad. There's always something that needs to be done.” (332) | |
Williams (2009b) | “I may get, if I'm lucky, some nights maybe an hour or two hours of sleep … I've had 5 surgeries myself and … my husband would call me to help him in the bathroom and I could barely take care of myself.” (793) | |
Adaptive Coping: Healthy Emotional Management | Kavanaugh (2017) | An 18-yr-old, in response to a youth support camp: “The camp has affected me in such a positive way. HD does not frighten me anymore. I am not scared of my future. It has … been life changing.” (330) A 17-yr-old, in response to a youth support camp: “I am much more positive and not so embarrassed. I am better in dealing with stressful situations in positive ways. HD doesn't scare me anymore.” (330) |
Williams (2009a) | A teenager explains sadness and anxiety management: “… trying to, you know, enjoy the last proofs of my mom before something really bad happens.” (282) | |
Adaptive Coping: Active Problem-Solving | Aubeeluck (2012) | “When I was helping to care for my father, I remember how difficult it was. I started going to one [a support group]. It's small and I travel 150 miles round trip, but it is so worth it. That would also give you a day to … just you, take a little extra time and treat yourself to dinner or something. Take care of yourself first. You are no good to anyone else if you're falling apart.” (1430) |
Kavanaugh (2017) | “I met lots of friends who have connections to HD along with skills to cope with the disease. I learned a lot to help me deal with everyday life.” (330) | |
Keenan (2007) | “We're starting to change the structure of the house so that it's accessible for my mum, and the bathroom is not big enough. So these are all things that we're gradually changing and gradually looking at. It's all about managing your parents – the tables have turned!” (125) | |
Oliveira (2020) | “I have never hidden her disease from anyone, … we would go out for a walk or to the hairdresser … or even to the same restaurant.” (5) | |
Røthing (2015) | “I have chosen to work full-time, actually now also with the possibility of working at home, to reduce overtime work. … But, I prefer to go to work because it is better. Somehow, my function at work is better than my function at home; my work keeps me going, with good colleagues. It means a lot to me, it is the only place I can socialize.” (573) “I try to stay healthy. Sleep as much as I can and go for walks alone. I live a regulated life. Sometimes, it happens, I find time for a little trip, alone or with my children. It is rare. I need something to look forward to and something nice to think of later. I have to, if not, I know I will be depressed.” (573) | |
Adaptive Coping: Creative / Transcendent Coping | Aubeeluck (2012) | “When I was helping to care for my father, I remember how difficult it was (sigh) especially looking and feeling like I was somehow seeing my own future played out before me. I'm glad the Lord God is your strength, I can relate. He is mine also. As difficult as it is sometime, remember that is a tremendous amount of strength.” (1430) “… as a family we can get through whatever life's challenges are. HD has brought us closer.” (1432) |
Halpin (2012) | “…my attitude is like life is like a gift every day. Every day is like a free day to me. And not every day is a good day and not every day is equal but in general it's pretty good. … That's sort of how I see life, and I've had all these nice mental thinking days of my life.” (327) | |
Keenan (2007) | “I see everybody else as different and my mum's normal because I've lived with it … whereas everybody else would see my mum as different but I don't. … I'll walk down the street with mum and not care what anybody else thinks.” (125) | |
Lowitt (2005) | “You can't really plan for it – I just take one day at a time. It's so slow you just adapt.” (5) | |
Oliveira (2020) | “Shame? What shame? I am not ashamed! I have a sick son, I'm not ashamed.” (5) | |
Williams (2009a) | “When this is over, and if you don't get it, you'll be a better person in the long haul. You'll have, uh, spent your time in hell, so … if you don't get this … then, your life's going to be great because you went through hell already.” (284) | |
Williams (2009b) | “You look for little things. I got a great family, I got great friends. But our faith and my church has gotten me through more.” (793) | |
Maladaptive Coping: Dysfunctional “Coping” Escapes | Aubeeluck (2012) | “…we don't want anyone to tell us, we don't want anybody in the house, we'll cope with this on our own and its all the burden on all the carers then. Cos you have that burden that they don't want anybody in the house and they deny that they are ill.” (1432) “We only found out that HD was in the family recently and it was such a shock. We are still having troubles getting information from any of the family, … now my brother-in-law is acting the same, in the space of one conversation he told my husband that he had the test and … then told him that if my husband's test comes out negative, then he will get tested himself. … I don't understand why he would lie like that.” (1432) |
Keenan (2007) | “I dreaded going home because I got beaten up [by my dad] … So I turned into a bit of a rebel at 15 – alcohol, drugs, coming home late.” (126) | |
Lowit (2005) | “Well you know, he wouldn't talk about it at all. It was difficult to find anyone to talk to within his family. I didn't know about it (HD) and they weren't going to tell me anything about it.” (4) | |
Oliveira (2020) | “They don't tell much, because my father's family was very afraid of what others could think or say … this [HD] was a taboo, one would not speak nor admit it because they'd be ashamed.” (4) “My older sister never did the test. She doesn't deal well with the disease, she drinks, she's not working. She believes she has the disease and that she will die and so she has to enjoy life now.” (5) | |
Røthing (2014) | Speaking of caring for her mother and younger siblings: “I could not tell about it to my father. I isolated myself from others, and in dark times, after I had put smaller siblings to bed, their schoolbags were packed, food for the next day made ready and the house cleaned up, I had ten minutes for myself.” (702) “Our son moved out early, but our daughter who stayed at home was like a chopping block for her HD affected mother. When something went wrong she was always the one to blame. She must have suffered a lot.” (703) | |
Sobel (2003) | “There were some wicked fights because all of our emotions were too close to the surface. It wasn't very pretty. It was pretty harsh. Nobody knew what to do with what they were feeling.” (52) |
Discussion
A Quality Care Gap Well-Suited to Palliative Care
Huntington's Disease Peer Workgroup. Lifting the veil of Huntington's disease: recommendations to the field from the huntington's disease peer workgroup. Available at:http://hdsa.org/wp-content/uploads/2015/03/Lifting-the-Veil-of-HD.pdf. Accessed January 9, 2020.
Huntington's Disease Peer Workgroup. Lifting the veil of Huntington's disease: recommendations to the field from the huntington's disease peer workgroup. Available at:http://hdsa.org/wp-content/uploads/2015/03/Lifting-the-Veil-of-HD.pdf. Accessed January 9, 2020.
Thematic Demarcation between Grief/Loss, Spiritual Suffering, and Coping
“I know that there must be others who have HD and also are the sole caregivers to a parent, but it feels like there is no place to go where I can express the pain involved in this and the guilt because there are times I feel as though I can't take it anymore. It is often a painful place mixed with cries of despair and then times when all goes as well as can be expected but it seems lately I am running out of the heart to go on being the one responsible for mum's needs while feeling the disease myself but there is no-one else to help, it is my job.”96
Grief and Loss in HD Caregivers
- Lowit A
- van Teijlingen ER
Spiritual Suffering in HD Caregivers
Figueiredo M. Young people caring for Huntington's disease parent worry “this could be me.” Huntington's Disease News. Available at: https://huntingtonsdiseasenews.com/2018/11/29/young-people-caring-for-huntingtons-disease-parent-worry-this-could-be-me/. Accessed January 9, 2020.
Coping in HD Caregivers
- Lowit A
- van Teijlingen ER

- Lowit A
- van Teijlingen ER
Current HD Caregiver Well-Being and Suffering Assessment Tools
- Aubeeluck A
- Stupple EJN
- Schofield MB
- et al.
Limitations
Next Steps
Balboni M, Balboni T. Do spirituality and medicine go together? Center for Bioethics, Harvard Medical School; Boston, MA. Available at: https://bioethics.hms.harvard.edu/journal/spirituality-medicine. Accessed August 22, 2022.
Balboni M, Balboni T. Do spirituality and medicine go together? Center for Bioethics, Harvard Medical School; Boston, MA. Available at: https://bioethics.hms.harvard.edu/journal/spirituality-medicine. Accessed August 22, 2022.
Hall EJ, Hughes BP, Handzo GH. Spiritual Care: What it Means, Why it Matters in Health care. Available at: https://healthcarechaplaincy.org/wp-content/uploads/2021/06/spirituality.pdf. Accessed August 23, 2022.
Hall EJ, Hughes BP, Handzo GH. Spiritual Care: What it Means, Why it Matters in Health care. Available at: https://healthcarechaplaincy.org/wp-content/uploads/2021/06/spirituality.pdf. Accessed August 23, 2022.
- Puchalski CM
- Vitillo R
- Hull SK
- Reller N